#But I was only diagnosed a few years ago and I HATE that GP and I never went back.

[iero]

I hate talking about my IBS because most people are either completely grossed out or just like, "Shit problems, huh? HAHAHAHA" and it's like... This isn't funny and I've been living with this for as long as I remember. It SHOULD be talked about more without ridicule.

[theotheristhedoctor]

As a UK-trained doctor, I can say that SLS is very much a Thing, and is a bit more complicated than this description.

So, some background: the UK has the National Health Service (NHS). Sometimes described as the "State Religion," it is one of the things British people hold to be most important to their culture. Even people who hate it define themselves as such; having known and worked with many Americans it's actual closest equivalent is the US army in terms of general attitude to it.

Importantly, the NHS is "free at the point of delivery." That means that nobody pays to see their doctor, have surgery, or get medications prescribed*(1). Even in an increasingly privatised system, the NHS delivers about 90% of all medical and Surgical care in the UK. Importantly, most surgeons have a private & NHS workload; it's rare to have a surgeon ONLY practice privately and the evidence suggest's they're on average less good!

This also means that the NHS is the major trainer and employer of hospital doctors. Given that the NHS has a desperate need to serve the whole country, trainees get flung around the place. This theoretically ensures that the quality of doctors is pretty evenly spread*(2). Family doctors (GPs) have a slightly different system of employment, but in a small country this has led to traditionally good goegraphic spread of doctors*(2), as well as a similar access to surgeons and a fairly egalitarian approach to surgical prioity. Whilst many people do pay to have their knee replacement done slightly earlier, it's probably the same surgeon who would have done it, in the same hospital, with the same kit. More urgent surgery is even less likely to be done privately, because the ability to jump the queue is less; surgical lists are built based on urgency of care, not who's paying*(3).

Why is this important? Because despite all this I know which patients are going to get post-op complications, and it will always be the patient with SLS. The one who's aunt died a few years ago during an appendicectomy, who's got chronic pain and is overweight despite running 3 marathons two years ago (before they got their 1-in-a-million cancer).

I know which patients will get their cases cancelled on the day, and it will always be the ones who had to book annual leave three months in advance and who's wife has just been diagnosed with breast cancer after their third failed pregnancy.

And I know which patients careful opioid prescriptions will nevertheless result in them turning up in 6 months for a detox, because if I was living their life I took would accidentally take one extra codeine a day, except they happen to be supermetabolisers so they get full morphine blowback and it builds and builds and they can't get to their doctor cos the dog just died and the car broke down and now they're fixed on OTC doses, and then it's heroin because they can't get fuck all else ...

But if i don't prescribe the Opioids they'll get terrible chronic pain and lose their job and then their wife will leave them and then their kids will get cancer. Because. Because because because. SLS.

It's absolutely socioeconomically linked, but so frequently it's not just "you're poor so you get shit healthcare." Its also "you got unlucky with a health thing a family thing and a work thing all at once and now your life will simply spiral out of control." It's "you don't live in a good dessert but you might as well because your back pain and commute stop you doing a full shop every week and now you've eaten shit for 6 months you've got lifelong constipation". It's an endless humbling reminder that no matter how good my care is health is intrinsically linked to so much else, and that balance is more important than perfection.

It's also a reminder that the Tories can fuck off, because anything that drives up inequality WILL make healthy worse and nobody can fix it once it spirals.

*:

(1) you do pay for the pharmacist to make up your prescriptions, but this is also cost-controlled. Very few people in the UK pay the actual cost of their medications.

(2) This is getting worse due to changes in how doctors are recruited, employed and re-emberced. The destruction of Primary Care Practice in my lifetime is a sin that neither Labour nor the Tories can escape responsibility for.

(3) Mostly. Unfortunately if the only surgeon available is an ankle surgeon then your ovarian mass isn't going next.

[nagichi-boop]

I’m gonna explain the situation behind my previous post cuz I think I’ve hit a bit of a rock bottom with my mental health and I’m not sure what to do.

TL;DR - Tried getting diagnoses from doctors for mental illness, didn’t go well. Need to get a health note for work benefits as I feel unable to do full time work (too stressful), but need to talk to a doctor for that. Unsure what to do (push for diagnosis, ask for health note for just anxiety first, suck it up and keep struggling, etc).

During lockdown I learned a lot about mental illness and neurodivergency. I’m not saying I’m self dxing, but I suspect I may have one or a combo of the following; autism, adhd, ocd, cptsd, DPDR. Currently none have been diagnosed - the only progress I’ve made is being referred to a (still closed) autism clinic which will likely take years to actually do anything.

A gp/doctor said that I have “severe depression and anxiety” (based on a questionnaire that took like 5 mins) on a call where I asked to be referred to a psychiatrist to be assessed tor diagnosis. I even brought up that I thought that I may have ocd. She asked where I got my info from and I said “online”, and she basically dismissed it after that. Like sorry I didn’t go to medical school, where else would I get my info?? But I literally spent hours a day researching mental disorders…hmm, kind of like an ocd compulsion, which is the disorder I gave as an example??

I also did CBT for a bit but hated it. The “therapist” (but probably not cuz apparently social workers are allowed to do CBT for the NHS) said she didn’t think diagnoses were helpful, that symptoms should be addressed. Every session she focused on social anxiety but it made me feel worse - either I’d say “I don’t know” to her questions and she’d push me for an answer and cause me to make something up (due to, uh oh, anxiety) or I would give an answer and she’d be like “that’s not a social anxiety thing, please read this worksheet with the symptoms for social anxiety”, which made me feel like an idiot. Anyways, maybe 4 sessions in I decided to quit because it was too stressful for me. Funnily enough when I told her I felt like I didn’t always know the answer, she said “when that happens, you need to say you don’t know”. LIKE LADY, THAT’S WHAT I DID!!

Needless to say the combo of the two things made me somewhat reluctant to try again to ask for help, so I’m STILL undiagnosed. Now you may be wondering why this is important.

Well, as of a few days ago, I am once again unemployed. Which means I need to (if I want money) go on benefits. The problem with that is they tend to expect you to dedicate your life to job searching and push you to take whatever comes up, which includes full time work. But I really don’t think I could do that. Even working 20 hours a week at my old job was mentally draining. I tried to bring up to the benefits people that I had anxiety and was referred to the autism clinic, but that’s not enough for them. They just told me I needed to get a health note from my doctor. And again, remember how that went before? How would I even ask for that?

I feel stuck. I know logically I should probably just try and talk to a different doctor or something, but I have no idea where to start. Do I bring up ocd? Or just say I’m generally struggling? Or ask to see a psychiatrist again? Do I ask for the health note first or try and get assessed so I know what I’m dealing with?

It’s gotten to the point where my brain is screaming “hurt yourself” or “you’re better off dead”. I feel so useless and dysfunctional.

As the icing on the cake, I don’t rly have a support system. I love my parents, but much like the counsellor I had, they think I have social anxiety and nothing else. They don’t think a diagnosis would help. And they don’t really react at all when I say I’m pretty much suicidal (like they seem unconcerned). It’s not because they don’t care, they just don’t understand (despite claiming to). I also don’t really have any friends, so no support there.

On a good day, I feel emotionally numb and/or disconnected from myself. On a bad day, it feels like there’s an intense pressure building up inside of me and it sucks cuz I can’t let it out and all I can think of is wanting to hurt myself to relieve the feeling. (Also just to to clarify, I don’t actively self harm and have not and have no plans to attempt suicide, but I also don’t have sort of outlet or support for when I have the urge to, so I just bottle it up.)

…any advice?

(Sorry for the long post)

[hellitwasyoufirstsergeant]

Hi everyone! I’m not really sure why I’m posting this here, I suppose because I’m not ready for people I know ‘irl’ to see this, and this is the only account I have anywhere where none of my irl friends follow it. As to why I’m posting this at all, I’m not so sure either. I suppose largely for myself, in the hope that it will exorcise some demons, and partly for other people, because eating disorders just are not discussed enough and perhaps by posting this I can show someone else that they’re not alone. 

There may be mistakes in this and it may not all be 100% coherent, I found it hard to write and I didn’t wish to read it back over.

WARNING: The following post contains discussions of eating disorders and mental health issues. Please do not read if this is a trigger for you, and please not not read if you’re only here to pass judgement 

Looking back now, it’s so easy to realise why I felt the way I did, and to see my descent into mental illness. At the time, it was confusing as hell. I wasn’t diagnosed with generalised anxiety disorder and clinical depression until I was 17, although I had been suffering from both for six years already, I just didn’t realise it, because I just didn’t know they existed. I didn’t know there were medical conditions to describe how I felt, perhaps if I did I wouldn’t have felt so alone and so alienated. It wasn’t until last year that I realised I’d suffered from an eating disorder. Before that, I didn’t know that binge eating was an eating disorder. 

The words ‘eating disorder’ to me conjured up images of skeletal bodies, of people making themselves sick. I wish that preteen and teen me knew that I was suffering from an actual condition, that other people suffered from too. 

I don’t recall specifically the first time I binged on food, but over autumn (fall) of 2011 it became a regular occurrence, a habit. It was my way of coping with the changes in my life - starting a new school, my mum being diagnosed with a clinical illness and an increasingly fractured relationship with my dad - and my feelings of loneliness. I was also self conscious about my body, I was in a more advanced stage of puberty than most of my peers and I was aware of the fact that I was a little overweight. Bingeing became an outlet for feelings that I couldn’t understand, and therefore that I couldn’t process. 

It was a process that I repeated regularly for six years. It was like a paradox, the more I looked at myself in the mirror and hated what I saw, the more I binged, the very thing that made me carry on putting on weight. I was overweight, I still am today, but I wish that I could have seen myself the way others saw me - slightly chubby but not the ugly monster I thought myself at the time. I ate my feelings away, it was the only coping mechanism I knew. Even when in some ways my life improved - when I was 14 I finally fell in with a group of friends who were kind and who made me feel accepted - my mental state continued to decline and I continued to eat to cope. I was also feeling confused about my sexuality, something that increased my sense of alienation and otherness. It was often the only thing that got me through the day, the only thing that made life bearable to me. 

I never confided the way I felt or my problem with food to anyone during this period. My mum knew that I had issues with food, twice she found hidden stashes in my bedroom. She has been a good parent to me, but I so wish she’d handled it differently. She made me feel ashamed, something that made me more determined to hide my problem and therefore to not confront it. I think perhaps that she would’ve been a lot more understanding had she known the feelings behind the problem, but I didn’t know how to go about telling her. 

I can’t remember how old I was exactly when I shoplifted food for the first time, I think around 14. The £10 a week pocket money was no longer enough to fund my problem, even though I always chose the cheapest food so that I could buy as much as possible. I shoplifted semi regularly from the local supermarkets for around 18 months, I still don’t know how I was never caught. 

In September 2016, I started sixth form college. It was a fresh start that I so badly needed, my five years at secondary school having been so unhappy. It was hard to begin with, only my oldest friend went to the same college as me and old feelings of loneliness resurfaced. A part of me had hoped that the change of school would allow me to leave my bingeing habit behind, but it wasn’t to be. Even when I settled in and began making friends, I continued bingeing. 

New friends at college told me of their mental health issues, and I finally felt understood - there were other people who felt the way I did, other people who wanted to die. These feelings may not be normal, but I’m not alone anymore. Despite feeling accepted properly for the first time in my life, I continued to eat. Perhaps it was the stress of A levels (my fellow Brits know how fucking hard these are), or my mum’s decline in health, or my increasingly worsening relationship with my dad. 

In May/June time of 2017, my oldest friend, Imogen, who was one of a few friends now aware of my poor mental state, told me that I should go to the doctor. After a little persuading, I agreed. She came with me, but the appointment achieved nothing. I tried a few more GPs at my local surgery and eventually found one who made me feel listened to, and who was kind and sympathetic. I don’t recall the exact time I was diagnosed (to be honest this period in my life is a bit of a blur), but after some months I was finally diagnosed with GAD and clinical depression. I still continued to stay silent about my problem with food. 

Ironically, it was actually the further decline of my mental state that allowed me to break my old habit. My mental health had declined fairly slowly over the past few years, but the decline accelerated over autumn and winter of 2017. I don’t know if there was a trigger behind that, I guess mental health doesn’t need a reason. I didn’t know how to deal with the way I felt, I lashed out and fell out with Imogen, which hit me hard. We didn’t talk at all for three months. Before this period, I had often thought that things would be so much easier if I was dead, but my thoughts had never progressed beyond that. Now, it became more active. I actually wanted to die. I stopped looking when I crossed the road, I stopped looking after my physical health at all. Fears about hurting my mum were the only thing stopping me from taking it further. But, I finally stopped binge eating, so disinterested in life that even the that no longer made me feel better. 

My mental state didn’t take a turn for the better, but I grew used to these new feelings and started to process them properly. I got better at pushing them out, but I did eventually decide to tell my parents about my diagnoses. My mum was very supportive, she still is, my dad not so (although I probably should’ve expected that). I made up with Imogen, my behaviour started to normalise. I felt so free from my old bingeing habit, it had only been a few months but it felt like a lifetime ago. 

In February 2018, my mum told me that she’d be moving to Yorkshire. She’d been forced by her job to take early retirement due to ill health, she was only 50 at the time, and wanted to live somewhere cheaper so she could save on living costs and pay off her mortgage. I was scared, and considered for a time moving in with my grandparents so that I could stay in a place where I knew people, but eventually decided that I’d move with my mum. Still, despite the biggest change ever to happen in my life, I managed to avoid a return to my binge eating habit. I’m still not sure how. Perhaps now that the habit was broken it no longer had the hold over me that it once did. 

And then, around March 2018, my dad gave me £500. To this day I still have no idea why, I guess guilt. But it was so much more money than I’d ever had. The temptation not to spend any of it on food was too great. I decided to treat myself, I’d spend £100 on food and put the rest in my savings. 

By the time I finished college at the beginning of June, the entire £500 was gone, at least £450 of it spent on food. I still remember the binge I had the day after me and mum moved out of our old home and in with my grandparents, who we lived with for seven weeks before going to Yorkshire. My mental state declined still further, and I wasted most of those weeks in bed, not having the energy to do anything. I kicked myself later for not using it to spend time with the friends I was leaving behind. 

After we moved to Yorkshire in August, I spent two of the worst months of my life. My old feelings of loneliness resurfaced, not helped by the fact that one of my closest friends just stopped talking to me. I seemed to alternate between binge eating, my binges even bigger than they ever had been, and hardly eating at all. 

But, eventually, I managed to settle in. I got a job, I made new friends. I didn’t make a conscious decision to stop binge eating again, it just happened. I wasn’t lonely anymore, but my mental state didn’t seem to get any better. But, I had healthier ways of coping and I didn’t need to binge as an outlet for my feelings anymore. In September 2019, I started uni, and I finally felt like my life had a purpose. 

Now, I have more and better friends than I ever had. I’m glad I made the move to Yorkshire, where I live now is much nicer where I grew up and if I hadn’t made the move there are so many amazing people I wouldn’t have met. Most of my friends are aware of my mental health issues, although I rarely discuss them in detail. 

However, only one of my friends is aware of my eating disorder. I didn’t realise until last year that binge eating was classified as an eating disorder. I’m not quite sure why, but this discovery prompted me to finally confide in my oldest friend, Imogen. She was very supportive and understanding, and I know my other friends would be, but it’s still something where I look back and I’m like ‘woah that actually happened’. Putting it out of my mind as much as possible has been my way of coping with the fact that it did happen. I have been slightly more open online that I have irl about the fact that I had an eating disorder, but this is the first time I have discussed it this in depth with anyone. 

I’m going to say now what I wish preteen and teen me had known: you are not alone. Whether you’re suffering from an eating disorder, from mental health issues, or from something else, you are not alone. I can’t say truthfully that I have never regretted confiding in someone, but the majority of the time it has helped me, even in a small way. Please talk to someone if you have an eating disorder, be it a friend, a family member, a GP, a teacher, even me. It is nothing to be ashamed of. 

I stopped binge eating as a regular habit at the start of winter 2018. Although I relapsed a couple times last year, it’s been twelve months and counting since my last binge. 

[beautifuldarkmind]

tw // s*lf harm, su*cidal ideation (sorry)

Hey, it’s the creepy NHS anon here.

Thank you for responding to my ask! I’m sorry you had such a rough time getting a diagnosis. You shouldn’t have had to go through all of that. Honestly it sucks that the NHS is so reluctant to diagnose anything mental health related.

When I was 14 I thought I had depression and anxiety. I finally convinced my mum to take me to the doctors when I was 16. The doctor was super nice. She tested my thyroid function just to make sure nothing else was causing my feelings, then referred me to CAMHS. That was…an interesting experience. I remember asking my counsellor to diagnose me, but then at the next session she said she couldn’t, that it “wouldn’t be helpful” because I was still growing. Now that I think about it, one of the days I was at school and during a class I was furious for some reason. I even said to a classmate that I was willing to fight anyone who got in my way. Despite my mum disagreeing with me, I cancelled my appointment that day. (My mum was worried they’d stop my sessions all together if I cancelled, but they didn’t.)

Fast toward to recent years and I’ve been on and off attempting to get a diagnosis. Last year (so when I was about 18) I asked to be referred to the autism clinic, and thankfully the GP accepted, but the clinic is still closed and even when it’s open I’ll still have to wait, possibly several years. Then I made another appointment (different GP) to be referred to a psychiatrist. She refused, saying that GPs are trained to deal with mental health issues. I brought up OCD, so she asked where I got my information from. When I told her I researched it online, she just brushed it off and then did the typical depression/anxiety test and she said both were severe, then said “take some drugs” (which is didn’t because I didn’t trust taking drugs prescribed by someone who did a 3 minute yes/no type quiz without actually fully exploring my issues).

I spoke to a different GP just over a month ago to get a fit note for my Universal Credit. It was supposed to just be to make adjustments to what I was supposed to do, but he didn’t ask what the note was for, so he marked unfit for work. Which is great because that’s secretly what I wanted but feared being judged by people around me for thinking I needed that (particularly my parents). I mentioned that I thought I could have OCD and CPTSD, and he didn’t deny it but he simply said CBT helps for both. He then asked if I was currently doing CBT and I said I’d done it before but I quit. (That’s a whole other story but tldr I really don’t think it was for me, or at least the “therapist” wasn’t.) He said he would send a self referral link.

Fast forward to a few days ago and I had another appointment with him to discuss my fit note (because it only lasts for a month and you have to go back to renew it, which sucks). He asked if I had referred myself to CBT and I said I hadn’t yet because I didn’t want to, and he said “please do that for me” in a somewhat stern voice. I then brought up BPD and I think he said he would refer me? Honestly I was a bit overwhelmed because he called 40 mins early and I was in the car with my dad, so I was super weary of him asking questions about what I was saying to the doctor (but he didn’t). He then brought up PD support groups, which I’m considering doing, but you have to call up the place and I literally hate phone calls. Oh, speaking of which, all the appointments from the autism one onwards were all on the phone, so not only was I struggling to process what they were saying to me most of the time, but I was also so anxious that I couldn’t articulate my feelings properly. :)

Anyways, I am 20 now, which I only mention because I feel the same as what you mentioned. My brother is married, my childhood crush is married, my friend who I introduced to my friend group who then proceeded to discard me is getting married. Everyone seems to know exactly what they’re doing. They all have friends. But not me. I haven’t had friends since I was 14, and even then I don’t think that friend group was entirely wholesome. They made me feel like an outcast, like I was weird, that I needed to be more like them and not be like me. Which has probably contributed to me having a very vague sense of identity. And I feel like I’m still 14 and yet everyone is expecting me to behave like an adult. I’m supposed to know what I’m doing with my life even tho I literally cried in the shop when I was pressured to choose between 2 pizzas.

I have no support system. My own parents seem very dismissive of my problems, equating everything to social anxiety. When I’m stressed out of mind to the point of feeling suicidal, my parents say “that’s just life”, which…well, feeds into the feelings. For years I’ve felt stressed. Then if I’m not stressed I feel absolutely nothing. And if I’m not feeling empty I am angry, sometimes for no reason. And if I’m not angry, I am curled in a ball trying to bottle up the urge to self harm and batting away suicidal thoughts.

It’s like I have a huge chain pulling me down underwater and everyone else is in the beach drinking cocktails or something. Sometimes I thrash and try to get people to notice, but people think I’m just having fun. Other days I just feel like letting the chain pull me down.

Please forgive me for rambling and probably not having a very consistent train of thought in this post. I have a tendency to blab on about my “problems” (if they even are that), I guess as a way to connect? Idk. This post makes no sense.

I hope you’re having a good day. <3

- 🌸✨ (in case I send another ask again, but I’ll try not to because I don’t wanna bother you)

So sorry you're going through something similar. My GP sounded exactly how yours was, the typical anxiety/depression test and then just throwing those at you.. they dont seem to be trained in diagnosing and they dont want to hear anything more either. It's honestly almost impossible getting a diagnosis through them, the system here is really messed up... its just disappointing and seems to be failing so many people including you.

It does sound like you're going through a hard time, it's not nice especially when you feel a loss of self identity, you dont even know who you are and just feel lost in life. I think that was definitely the main point of realising something was up.. I had a VERY distorted view of myself and others around me and that was why I'd often self sabotage everything and then I'd feel so empty and angry at the world and just explode...

If you can go privately then do so, therapists are not able to diagnose and they will usually tell you 'we don't like to label' but even without a diagnosis you can still see if you can access DBT therapy. Amazon also has lots of DBT workbooks that I've used and its helped me to really understand myself!

If you often feel invalidated by your parents then that is known to cause BPD or borderline traits, especially if you've been suffering with mental illness in childhood and they tried to claim that it was nothing....you mentioned anxiety and I was told the approach my parents may have took to my severe anxiety is what brought on many of my symptoms of BPD. You start to feel ashamed of yourself for feeling that way because your caregivers make it seem like the issue isnt important and you feel as if your feelings dont matter also because that is how you have been made to feel.

I'm not saying this is definitely the cause but in my case I was told that the constant feeling of invalidation may be why I have such a warped idea of myself and why I cannot regulate my emotions. I was never told HOW to regulate or shown how to, just told to ignore my emotions and now I dont know how to deal with them😀

but yeah I'd really recommend taking a look at some of those dbt books online or reading more into it so you have a better understanding of yourself. You've already taken the first step and that's identifying that something may be wrong so you are self aware and clearly want to change for the better 💕

I hope everything works out for you, it's not nice feeling this way but you've got this 🥺🙌

[tyravenholme]

So, I’ve never really talked about my experiences with Gender Dysphoria before because I’m AMAB and there is this unfortunate view from some who look at those who identify as Non-Binary but were born AMAB negatively.

But heck it, this is my tumblr and I get to post whatever I want on it, I would love to hear the thoughts of others and get some opinions. Because I have Major Depressive Disorder, my experience with Gender Dysphoria is rather mild, but I have no doubts that it adds to the severely of my depression overall. After all, small things can build up, and if they help build each other, the effects can compound. Like multiplication instead of addition.

For me, I like my face, the shape, the look, I didn’t always like it, but I like it now. However, I hate facial hair. Shaving is something I do so little because of out of it pulls me from myself, but after I’m done, I look at myself in the mirror and see me. When I have facial hair, I don’t see me, I see a stranger. The same stranger when I used to have a buzzcut because I was too afraid to have long hair. My chest weirds me out sometimes so I often wear shirts instead of tank tops even though I think they are cool and trendy (my opinion). I’m okay with my arms because they long, thin, and don’t have a lot of muscle, but I can’t imagine them being any bigger because I think that would just look weird on me.

I wish my voice was not as deep as it is naturally, though because I’m fairly good at doing voices, I do find myself speaking in a higher tone than I normally do.

There’s also the... other thing. Honestly, not a big fan. If I could enter a Character Customization Screen and choose a Non-Binary option, whatever that would look like, I’d choose that over what I have.

Some might look at all of this and think “Hmm, it sounds like you want to be more of a woman than a man.” but you see, I’ve actually wondered that myself and put some thought into that. My feelings of dysphoria don’t go away when I think about what it would be like if I had the body of a woman. Instead, the exactly same issues arise, just presented in a different way.

I’ve contemplated speaking with my GP about possibly starting some kind of transition process to a more gender neutral appearance, but I’m worried what that might change. Yeah, I know it will change the things I don’t like about myself and probably for the better, but what about the things I do like about myself that I’m okay not changing? What if they change? I guess this thought process could be attributed to my Autistic Self which doesn’t like change, yet the fact that I’d be totally willing to change the parts of myself I don’t like, but keep the parts I do, I feel like is big dysphoria feels? Maybe? I don’t know.

I guess because I had resigned myself to always being in a state of suffering due to depression, I had convinced myself at some point there was no point in changing anything. But the last couple of years have been really good to me. Better than expected, despite the few setbacks here and there. I’ve been on medication for over a year and it’s been helping, a little, but helping nonetheless. I got diagnosed with autism which has provided me with great insight into myself. I have a close group of friends who I’ve been contact with for over three years at this point and I couldn’t be more grateful for them. I’ve cried less. Been a lot calmer. Had fewer breakdowns and meltdowns and tantrums. And it’s only getting better and better.

Maybe it was inevitable I’d reach this point given how good things have been going. That I’d eventually reach the point where I was comfortable with the thought of actually wanting to live more as me more than ever before because now it doesn’t seem so pointless. I’ll give myself some time before making any calls, I doubt I’d be able to get anything done quickly either during a pandemic, but getting the ball rolling might be best done sooner rather than later. After all, I could have done this years ago and never did, I’ve got to make it up to my younger self who didn’t need to suffer.

[teeforhee]

Fuck, I'm not sure I'll ever get over how much CAMHS (child and adolescent mental health service, it's the under-18s mental health service in Scotland) let me down as a kid.

It's like this. You're 11 and you're traumatised but you're scared of using that word, you don't know if you're allowed it, but you are traumatised. And you're so anxious you can't breathe most of the time, you can't sit down and speak to any of your friends, you can do your school work but you keep falling apart and everything feels like it's getting worse all the time. You don't fit in, you're weird and awkward but your schoolwork is good so you aren't worrying about your grades, you're not even sure why you feel this way (it's unprocessed trauma, but again, you don't feel like you're allowed that word). You're s/hing and struggling with suicidal ideation, and you're lucky enough to still trust authority figures, so you do what everyone says you should. You trust an adult. And she calls your GP, who is another adult you choose to trust, who you bare your heart to with all of these symptoms that make your feel sick to even acknowledge, and then they make you an appointment with CAMHS. You came in asking for treatment. They referred you to CAMHS. They did not explain what CAMHS was other than what the letters stood for. That's okay - it's treatment, right? They're gonna help. You can talk this through and they'll help- just gotta be careful you don't get institutionalised. You don't want that, yet.

You talk to a CAMHS worker. She's a psychologist. She says it's very likely you have autism to your mother after your first session. Your mother broaches the topic gently. You are overjoyed: there's an answer! oh fuck, this explains so much! but it's not treatment. It's a word. The psychologist puts you on a waiting list and you have 22 sessions of CBT with her, trying to unpack your trauma and trying to build up coping skills. So many of them feel like just denying the truth, so many of them feed into your magical thinking ("the one thing you can control is your thoughts, you must always control your thoughts, good things will happen when you control your thoughts and stop thinking the bad thoughts"), but it's treatment, mostly. You stop seeing her twice- once because you are trying to develop an eating disorder and having a mental health professional who wants to hear how you're doing is totally cramping your style (I wasn't actually trying to develop an ED really, I was trying to cope in ways other than s/h, in ways that felt honest to the situation and real and gave me a sense of control that "controling my thoughts" just wasn't doing). You come back for recovery. You tell her you want an eating plan. By the time she even considers an appointment with a nutritionist, you've moved past that stage in your recovery on your own. You stop seeing her again because you get into an abusive relationship who doesn't really like you having contact with people who aren't him, and he super super doesn't like you not being able to talk to him for a whole hour every week. That part isn't their fault: no one could be gotten me out of that until I decided to; believe me, everyone around me tried, and it didn't work until I wanted I to, the third time.

But I left, again, I was without support for 6 months, and when I came back it was after my father (the earliest source of my trauma) had died. They take 4 sessions compiling evidence as to what treatment i needed going forward, without telling me that was what they were doing (I was trying to build trust with an adult again after 6 months of constant reinforcing that I couldn't trust anyone but my abuser), and then an appointment with a psychiatrist and your mother and a new psychologist. They dismiss and justify the symptoms that most worry me, they have at this point turned down my request to be institutionalised multiple times (including after an aborted suicide attempt, I presume they thought that was fine because made it clear that I did want to live), and they say at the end of the meeting that they are going to give me an official diagnosis of autism and that after that CAMHS has nothing more to offer me.

They say that if after 22 sessions with a psychologist I am still struggling so much (bear in mind that probably close to half of those sessions I was concealing factors that were actively making my mental health worse and which were traumatising me) I clearly can't gain anything more from their service, and anyway, autism isn't a mental illness and CAMHS as a service can only help while waiting for/trying to get a diagnosis, or if you have a diagnosis or a disorder for which they could provide specialist treatment. My very obvious PTSD? nah, no big-T Traumas, and c-ptsd is way too hard to diagnose. I receive a hilarious letter detailing all of the evidence (I mean genuinely insightful but also fucking hilarious and I do want to note down funniest bits and post them hear at some point, stuff like "unusual speech was noted, (exclamations of 'wacky!' while describing his symptoms)") and then they refer me to a charity which, at time of writing, I have had 1 assessment phone call with, and am waiting for a call back for my next and first proper appointment.

They did not inform me when I was first referred that CAMHS is a diagnostic and specialist treatment service and if they did (this was well over two years ago now, I don't remember word-for-word what my GP told me), they did not tell me that meant that they would kick me out to a charity once they figured they couldn't label me with anything requiring specialist treatment. During our last sessions they were unyeildingly focussed on the trauma of my father dying and of the "shock" of my diagnosis (that I had been waiting for for 2 years. yes, very shocking/s) when those were not my biggest problems. My relationship with my father is complex and I won't get into it here, but suffice it to say that his death was the last step on a very, very long journey, and honestly one of the least traumatising.

I let them keep the focus there because I desperately hate talking about the actual, recent, debilitating trauma of being in lockdown with an abusive partner for 6 months. That shit hurts, I can't even say his name, but that is the thing that I need to unpack if I'm ever going to be able to go outside in the sun again.

Repeatedly ignoring the requests I made for specific treatment until past the point where I needed it anymore, not informing me how the service I was going to be working with for 2 years even worked in something so basic as "what is this for? what will happen to me if I get a diagnosis they can't give me specialised care for?", telling an 11 year old child that suicidal ideation is "not that serious", a fundamental misunderstanding of what I needed and wanted to hear ('normal' is not a helpful word. 'normal' tells me 'suck it up, everyone experiences this and they're all fine, you're normal, just think better' why are they all so adamant that I am normal? Not even considering my mental health I am an autistic bisexual gnc trans guy, we went past whatever 'normal' means a long time ago, fucking listen to me), at every single step of the way this system has left me in the same state I was before, the only improvement being through support from my friends, fucking Childline (gd fucking bless Childline volunteers, but still, I shouldn't have been getting so little support that that felt like my only option), mental health masterposts on Tumblr, chats with my (luckily) very nice guidance counselor (they're called pastoral teachers here but I know most folks reading this are American or are most familiar with the American school system) and what amounts to gritting my teeth and getting through it.

It was worth it, of course my life was worth it, of course I say the same thing every person who's attempted suicide says, I'm more grateful than words could possibly express that I survived, that I get to go home in a few minutes and feed my kitten and write and message my friends, but for fucks sake it didn't need to be this hard. And it doesn't need to be this hard. I'm not out of the woods yet, I'm still waiting on that second appointment with this charity, I'm still 3+ months behind at school, and I'm one of the lucky ones. My boyfriend has been hurt worse by CAMHS, left even more isolated than I was, even more traumatised by the way he was treated, and every single person I know who's been in this system agrees that it's deeply, deeply flawed.

I don't want people to have competitions over who's medical experiences are worse, who's country has the worst mental health system, who's been the most traumatised by their psychiatrists or lack thereof, please. Please don't make this the suffering Olympics. I'm just making this post cause I know, I know that other people have had similar experiences, whether with CAMHS or whatever their equivalent is. Mental health services need serious reform that puts patients first, listens to their needs and requests, that is well funded and well staffed by people who care about their patients wellbeing more than they care about controling other people's lives.

Austerity in the UK is a huge reason why this happened the way it did- my first psychologist left the service to go work somewhere that pays better, leaving just one newly-graduated psychologist that clearly had no idea what she was doing and didn't care to sympathise or show compassion for me.

This shit needs to change, because kids need help, and this is not good enough.

[garethandjude]

Sam’s Eulogy

Sam’s funeral was 1 year ago today. Writing Sam’s Eulogy was emotionally the hardest thing I’ve ever done. Reading it in the service was beyond me. Jude and I are ever indebted and thankful to Marc for doing this so well on the day.  It read as follows:

I stand before you today, a representative of a family that feel truly blessed to have such amazing support not just through the numbers here but throughout Sam’s journey. Family, friends, the Russell school, social clubs, the medical teams, work colleagues, the whole Chorleywood community and beyond, we are all united in our love, and desire to pay our respects to our wonderful warrior Sam.

Samuel George Hanson, was born in St George’s hospital on St George’s day, the most precious present on his Dad’s birthday. He was instantly welcomed and loved by his brother Rhys and his family. Whether from his brother’s tickles, or the delight of smearing food all over his face, it wasn’t long before he was smiling and chuckling in his unique way, filling our lives with Sammy sized fun.

As a baby and toddler Sam was seldom without a muslin blanket for comfort – Mum and Dad wouldn’t dare leave the house without one. This set a theme for the rest of his short life. The muslin was eventually superseded, by George bear, Sven, Camo. He loved his teddies and each had a name. Over the past few years there was one teddy that Sam would never be without - Rabbity. Rabbity was so precious to Sam that the internet was scoured for an identical backup to be used when Rabbity was washed. Shipped in from the US, Rabitto was always on standby. Rabbity went everywhere with Sam. Every night he cuddled him, during all his stays in hospital, every operation Rabbity was in the theatre with Sam. Up until the very end, right now, and forever – Rabbity will be with Sam to comfort him.

As Sam grew up, some other Sammy traits soon appeared. With his white blond hair, and golden skin he was a beautiful toddler, with a propensity to wear nothing on his feet. Was he destined to be a surfer dude? He had the look. If he could, he would always be barefoot. At a push he would be in crocks, as a last resort trainers. If he went out, shoes and socks were always the last things on and the first things off. When home, he was easy to find as his shoes and socks would leave a Sammy trail from the door to wherever he was going.

As all children should be, Sam was full of life, a little mischievous and very inquisitive. He loved finding crystals in rocks and bringing pretty stones or fossils home. If it sparkled, it got his attention. Was he a budding geologist or was it a palaeontologist? He was encouraged to do it all. Only a few weeks ago he was busy foraging on the beach intently studying what the tide was washing in. Crab shells, dismembered crab claws, pretty shells, he was intrigued by them all and they all went into our bucket to bring home. Maybe he was destined to be an ecologist?

In hospital Sam would relax by watching his favourite movies. Whether they were Disney animations, classics like Oliver or epic compilations like the Lord of the rings, Star wars, DC and Marvel, he enjoyed them all. He also loved dressing up. Inspired by the heroes and villains in all the movies, when he dressed up, his imagination would whisk him away and he became that character. Woody or Buzz, the Gruffalo, a Dinosaur, a Rabbit, Captain Phasma or America, Kylo Ren or Thor. He would boisterously tear around the house in character, wielding his weapon of choice. Rhys was usually the victim and would laugh out loud as Sam battered him with a foam sword or hammer (most of the time!)

There was one costume, more than any other that Sam just loved – his reindeer onesie. He would wear it around the house, camping trips, on visits to the hospital, he even wore it to school. His size 3-4 years was worn until the legs looked like ¾ lengths and the body was skin tight. He didn’t care, he’d say it was snuggly, and it tickled us to see him in it. Sam loved being snuggly and snuggling up to his teddies or under blankets. But if there was some snuggling to be done, top of the list was always snuggling with his Mummy.

Even when Sam was poorly one of the activities he’d still find the strength to do was Nerf battles. If it rained, the battle would be indoors, if it was dry it would be outside with bullet guns or water pistols. When Sam was less mobile, whole house or garden battles were reworked so that Sam could take up a static sniper position, and take pot shots at his victims, family or friends. Rhys has a fond memory of when he and a friend were speaking and playing with some girls in a neighbouring garden. The talk soon became squeals and laughter as Samster the Gangster popped around the edge of the shed, naked, brandishing a water pistol and soaked them all.

When Sam was young he had always been a healthy child. When the family had colds he seemed to be unscathed, but in the autumn of 2015 Sam became pale, he was low on energy, and he had a rash. At first the GP thought it may be viral, but after a couple of weeks nothing had improved and his tummy was starting to swell. By this point the family were fearing this could be something bad but the odds said they should be wrong. A blood test was done on the 1st of December 2015, a day the family will never forget. Sam was diagnosed with Leukaemia and their Sky fell in.

Sam’s journey since then has been a tough one. His beads of courage are a lasting memory to the 100’s of procedures he endured over the 3 and a half years of treatment. He amassed 1,850 beads in all and the family give thanks to the medical staff here today, representing everyone that has worked at every hour of the day to care for Sam during his battle with Leukaemia. He was inspired so much by your commitment and professionalism that he’d said he wanted to grow up to be a nurse. Would that have been his future? Sadly we will never know.

If there is one thing that blossomed in hospital, and epitomises Sam it would be his love for Lego. Over the years we had various activities to fill the time. Card games, dart guns and dart boards, Qixels and crafts. He would enjoy them all but the favourite was definitely LEGO. What started with a small Lego set to help while away the time, grew into a ritual fuelled by both Sam’s and his Dad’s enjoyment of it. If Sam was spending any length of time in hospital he’d be doing Lego. The anticipation and the walk to collect a new set from the Amazon lockers in GOSH were all part of the excitement. The real magic was watching him build; so focussed and determined, his tongue out during the tricky bits. When he completed something, the sense of achievement was always evident on his face - in the big beaming smile. From timid beginnings, he fumbled through his first few sets but soon became a master builder completing multi bag sets intended to last days in just a few hours. If there is one thing that demonstrates how much time Sam spent in hospital, and particularly the months in isolation it would be the size of his Lego collection. On display in his room he was always proud to show it to people.

The last 9 months were particularly tough. The disease and treatment taking its toll. Sam was a third heavier, had lost his hair again, and then grew dark hair back almost everywhere. His hearing was impaired and his legs were weak. He would be unrecognisable to those that had not witnessed the change. But to those that had it was still Sam and he was a fighter, he would get through this. His attitude to all the pokes, prods and procedures was inspirational “let’s just get it over with” he would say. He hated general anaesthetics, but to overcome the fear he developed his own routine of yoga breaths and a snuggle with Mummy or Daddy while he had his sleeping milk and just got it over with. His animated moral – “Never give up” that we are so blessed that he made, will live with us forever. Sam you’re a trooper - thank you for being so brave.

Despite everything he’d been through he was still the cheeky, inquisitive boy we all loved. He always had a willingness to learn and would look forward to his lessons in hospital, at home or in school. Even on days post BMT when his mouth was too sore to speak he still had his lessons, writing or using the iPad to communicate. It would be the highlight of his days only missed if he was asleep.

Sam was doing so well in his treatment, he was winning his battle with leukaemia. He was in remission, his transplant was a success and his diseased white blood cells had been replaced 100% by his brother’s donor cells. His recovery was not without issues, that would, and did make him feel lousy, but the bigger picture was always good and in a few more months he was going to get through this. One day, he was going to ring the bell in Hospital that signified the end of his treatment.

On the 21st March Sam was taken by his parents to Watford because of his rapid breathing. This was thought to be a visit like many other. On the 22nd of March suddenly and unexpectedly Sam’s condition deteriorated and after many hours he was stabilised in Watford and transferred to intensive care in GOSH. Sadly, despite battling his biggest battle and supported by an overwhelming number of people and well-wishers, Sam was never to leave. He passed away peacefully in his parents’ arms on the 4th of April 2019. Sam never got to ring the bell.

Sam didn’t quite make the 8th Birthday that he was so excited about, but during his short time with us has achieved more than many may achieve in a lifetime. In his name, 10’s of thousands of pounds have been raised for charities that have benefited him or his family; CLIC Sargent, Be child cancer aware, Children with Cancer and Spread a Smile. The Radio 5 Live broadcast for the ‘No Isolation’ robot has over a million views and touched thousands of people. The hope is that these contributions may bring unforgettable memories, or lead to new treatments that help save the lives of other children in a similar situation and maybe one day ensure nobody has to endure the loss of a child from Leukaemia. Sam, you should be proud.

Everyone gathered here today has been touched in some way by Sam’s life. It may take a long time for friends and family to adjust, but after the grief and mourning, we will be left with the memories and sparkle that Sam brought to our lives. We will reflect on a life full of amazing adventure, love and bravery. Sam’s courageous battle and attitude should and will inspire us to never give up. We will all miss you Sam but may your star forever shine bright. ⭐

02.05.20

[pmddnutter]

Running a business with PMDD

I suffer from a condition called Premenstrual Dysphoric Disorder or PMDD for short, its sometimes referred to as severe PMS although it is certainly way worse than PMS.  It has only recently (May 2019) been recognised by the World Health Organisation (WHO) as a unique condition meaning that PMDD will be considered a separate condition to severe PMS, should see more funding and research and allow doctors across the world to standardise their terms.  Hopefully leading to more diagnoses and better treatment and understanding.

The WHO defines PMDD as:

“a pattern of mood symptoms (depressed mood, irritability), somatic symptoms (lethargy, joint pain, overeating), or cognitive symptoms (concentration difficulties, forgetfulness) that begin several days before the onset of menses, start to improve within a few days after the onset of menses, and then become minimal or absent within approximately 1 week following the onset of menses.”[i]

PMDD is debilitating, it has caused women to commit suicide.  There are no specific treatments for it; for some women hormonal contraception works well, for other antidepressants, and for a handful of women only a full hysterectomy has helped.  Whatever the treatments, PMDD is different for different women – it affects us all differently.

PMDD and Me

For me PMDD is that girl in high school that was a bit two faced, smiles to your face when she needs you but when your back is turned pulled that ‘urgh’ face and rolls her eyes to her ‘real’ mates – you know the one I mean.

She is never the same though, some months she can be quite mild and meek, maybe a bit of insomnia and overeating, sometimes a bit grumpy or irritable – kinda friendly but you know that there is a storm brewing.  Other months she is in full on Bitch Mode!  She makes me believe my husband is having an affair, she makes me eat ALL DAY, she tells me I’m no good, she makes me want to get in my car and drive as far away as possible.

And when you have this whilst running your own one-man band business it’s really bloody hard!  As a small business owner hand making you own products you already question yourself pretty much daily; is my stuff any good, why do people buy it, why aren’t people buying it, shall I just jack it in and go back to ‘real’ work full time?  So, add PMDD into the mix and I feel like I’m on a rollercoaster and I bloody hate rollercoasters!

With PMDD I get these amazing times of euphoria, exciting manic times where my creativity and enthusiasm are in overdrive and OMG these times are awesome.  I come up with some of my best work during this time, my marketing strategies all just seem to work, I love being around people and go out and network loads.

But then I have to crash, and I kinda know I will but I never know how hard.  Sometimes I’ll just have a teary day, one where nothing goes right, I miss stamp literally everything and nothing I post on social media is interesting, so no one comments.  But sometimes this just lasts 1 day and I don’t even realise until my period starts that this day happened.  But other times I crash bad…  I just hate everyone and everything, my customer service goes out of the window as everyone is against me.  Why bother posting on social media as I can’t make it sound nice or enthusiastic.  I spend pretty much all day holding back the tears and my horrible attitude, I just want to stay in bed but I can’t sleep, I eat EVERYTHING in sight and I literally have to force myself to do even the most menial of tasks.

One of the very worst things about these really deep lows is that I don’t recognise myself, I am usually (for the other 2/3 weeks of the month) a really happy and enthusiastic person which is why I sometimes don’t even realise the manic days have happened until the low starts.  The lows that scare me are the ones where I don’t want to be around people, especially when you have a house to run with 2 small children and a husband and a part time job.  The ones where I just can’t seem to snap out of it, I know I’m in deep, I can’t stop myself saying some nasty things and snapping at those closest to me.  The lows where any orders I get don’t matter, they’ll probably just hate it when it arrives anyway so what’s the point making it at all.  Any messages I get I just can’t be arsed to reply as the questions are just so inane and pointless, or they’re just moaning at me for no reason – no your order that you placed 10 mins ago won’t be with you tomorrow as I have to HAND MAKE IT!  I have to stop myself replying with a message saying ‘won’t you just f*ck off already, you’ll get it when I decide you’re worthy enough to make my crappy handmade sh*t that you probably won’t like anyway and you won’t bother to leave me any feedback even if you do’ (that’s a whole other blog for another time!)

So why am I writing this blog now?

It is now December 2019 and I’ve been trying to write this since PMDD awareness month back in April 2019!  At the beginning of the month I had a plan to do some awesome posts about it, create some keyrings, maybe even raise some money.  Then it hits… why would anyone want to buy any of my keyrings, I’d be doing the cause a grave injustice in creating such shit products.  Believe me, the irony of this is not lost!  The irony of the negative thoughts is never lost once I come out the other side, and it’s this irony that delays me getting the help I need.  A few days passes and you convince yourself that it wasn’t so bad, it was just you feeling a bit blue for a day.  You get on with life, looking after the kids, bury yourself in work; the high is well and truly convincing you that you are absolutely fine and that next month won’t be so bad.  But then you notice the date, it’s a few days before you are due to ovulate and here we go again…

I went to my GP in May 2019 as the symptoms were not getting any better and asked to have the hormonal coil fitted again as it had helped me so much before I had my second baby.  It was fitted in June this year and I waited the 3 months to see if it would help, it unfortunately didn’t and in October I had one of my worst lows to date.  It was horrendous and I booked a GP appointment at 2am after being awake for nearly 48hrs, having eaten god knows how much food, drunk far too much wine and cried at every little thing I watched.  I saw my GP a couple of weeks later, obviously I was feeling much better but I am determined to get this thing sorted and she was amazing and we went through the options and I decided on trying oestrogen for the 2 weeks prior to my cycle.  I had to giggle to myself when reading the instructions; firstly because I have to rub 1 squirt of this gel into my thigh at the same time every day, and secondly because this is effectively HRT given to older ladies at the time of the change LOL!

Unfortunately, it doesn’t look like this is working for me, I’m 4 days before I am normally due on and the symptoms are back.  Definitely not as severe as the October crash but the feelings of annoyance, self-doubt and pointlessness of it all are here, my next step is perhaps anti-depressants, so I’ll book an appointment with the GP and see what the next steps are.

My battle with PMDD and keeping sane for my business continues, even as I write this I am questioning all my plans for 2020. I have/had some great ideas but that little well of anxiety is brewing up again and I’m thinking it’ll just be better/easier to scrap it all. I won’t though, I’ll step away from social media, take some time out for me (although with this comes the Mum Guilt fun) and give myself a good talking to that this will pass and next week I’ll be buzzing and posting non-stop and bugging everyone again! Until next month…

Thanks for reading,

Emma xx

For more information and guidance for PMDD please check out the MIND website here or IAPMD here, or feel free to drop me a message.

You can also download an app to track your symptoms here.

[i] https://iapmd.org/position-statements-1/2019/6/11/world-health-organization-adds-premenstrual-dysphoric-disorder-pmdd-into-the-icd-11

[btamamura]

Sorry, this is a long post so you can feel free to just scroll past. I wrote this on the app since the web page hates my devices, so there is no Read More cut.

Time to open up to my followers.

If you’ve known me for a while, you’d know my battles over the last few years. For the new folks, here it is - I have been living with a chronic illness since November 1, 2014, and it has been awful.

It started out as just chronic nausea. We thought it might’ve been something I ate or a lingering case of gastro. But, that changed February the next year when the pain started.

I woke up one morning to find I was in extreme pain in my feet. I hadn’t injured myself but my feet felt like the bones had been shattered. The lightest touch made the pain even worse, so I was just lying on my back, feet in the air, crying and crying, trying not to scream and wishing it would just go away. The pain faded over the next couple of weeks, but never left completely. It was just an annoyance or painful but not excruciating. My grandfather offered for me to see a podiatrist, he would pay if not bulk-billed, because he thought maybe it was from the many years of walking on my toes.

The next day, right before my cousin’s birthday party, which I had planned on attending for at least an hour just to say hello to the family, the same horrible pains started in my hands. Dad just had to take one look at me to know I would not be going. I asked him, through my tears, in half-seriousness if he could find his axe and chop my hands off so I never had to feel that pain again.

I found a clinic to attend with my grandfather’s help. I saw a doctor about my symptoms. She focused on the nausea, even if I kept saying “I’m in worse pain today!”, so I tried seeing a different doctor in the clinic. The first doctor had ordered a gastroscopy to be done to see if there was something going on in my stomach.

The second doctor kept ordering the same blood tests - iron, b12, vitamin d. And even once those levels had been corrected, I was still sick and sore. I had since had my gastroscopy, which came up clear. The second doctor looked me in the eye and said outright that she believed I had to be faking in order to get out of looking for work. I was already upset that the gastroscopy had no answers (I’d already said I would cry if it came up clear, just as I would’ve if it found a tumour developing in my stomach), but then to hear that from someone who was meant to help?! I broke down crying and told her if everything I had missed in the time I had been sick. By this time, it was early 2016.

I told her of missing visiting my niece as a newborn. Of how I couldn’t attend my cousin’s engagement, Hen’s night and wedding. Of how I couldn’t attend my pop’s funeral. Or the missed annual dinners with Nan and Pop before his passing. (Pop is my dad’s stepfather and was a big part of my life growing up despite living far away.) How I had planned a holiday to the Gold Coast for my 30th birthday but instead spent that day in bed, struggling to down my food and avoiding the family as they ate theirs because the smell made my nausea worse. Of the Christmases I spent sick in bed and unable to visit my mother’s grave. Of not being able to hang out with my sister and spend time with my young nephew and much younger niece. I refused to see that doctor again and left feeling terrible.

New doctor at a clinic my great-uncle visited. He decided to do the usual blood test but also tested to see if I was autoimmune. Yep, so he then tested to see if I had lupus. Nope. But, he still seemed to be doing more for me than the last two doctors. A week after the autoimmune result came in, I wound up in hospital. I hadn’t been able to eat or drink for a week because I was having difficulty swallowing. I wasn’t in a dangerous condition, so I was only admitted overnight for observation, having some fluids by IV and to speak with a speech therapist the next morning as I was put on a purée diet. While being observed, the doctor in hospital noticed something - a goitre.

Eating troubles started becoming more frequent at that time. By the end of 2016, I was struggling with abdominal pains and low appetite. There were sporadic days I couldn’t eat a thing. I attended another appointment where the doctor forced me to have two jelly babies because my blood sugar was low - no, I’m not diabetic. They came to a head in late-March of 2017.

I hadn’t eaten more than a nibble here and there and only barely sipped at a drink for a week. I was very unwell and after the third time of being sick, I decided I had to go up to the emergency department because something was very wrong. I was right - they saw me right away. I was in the early stages of Refeeding Syndrome due to starvation, my blood sugar was low, my ketones had gone up and my organs were slowly starting to shut down. My blood was acidic. I was told to try sipping at apple juice, but it was no good, I couldn’t even muster that.

I was moved to short stay while waiting to transfer to a ward. My time in hospital was scary, and not in the usual “I’m afraid of hospitals” way. I was in danger. I was diagnosed with starvation ketoacidosis (similar to diabetic but I’m not diabetic), as anorexic (no appetite version, not anorexia nervosa) and even if they tried to get me to eat, I struggled even with crackers. They put me on Ondansetron (usually for chemo and radiotherapy patients) to ensure anything I did try to eat would stay down. I was put on different infusions - saline, glucose, potassium (THAT HURT SO MUCH, I THOUGHT SOMEONE WAS TRYING TO SNAP MY ARM IN HALF AND I ACTUALLY PASSED OUT FROM THE PAIN!!) and others. I had blood tests at least twice a day and tests for my blood sugar and ketones every time I was about to eat or if I looked a bit more unwell. I had to be hooked up to a portable heart monitor, but the first night of that, my heart rate reached 150bpm just slowly walking to the toilet, and a Med Call was made to make sure I did not go into cardiac arrest. The doctor who made his rounds had to outright tell me that if I failed to eat, I would need to be put on a feeding tube or else I would die. That’s how bad it was. I was in for a week before I was deemed well enough and safe enough to go home.

The third doctor started to let me down, ordering the same blood tests to make it look like he knew what might be going on. No good. Wound up feeling too ill later in the year so I missed my uncle’s funeral.

In 2018, I started going downhill. Wound up hospitalised with starvation ketoacidosis again following a bout of gastro the day before. Falls also started occurring. But, it was no good, I couldn’t find a good doctor who could help instead of just playing around with the same old blood tests. I missed more events including my other niece’s first birthday and my great-uncle’s funeral.

2019, still struggling. I’m seeing a new doctor, but she very quickly lets me down by saying EVERYTHING is just tied to my anxiety. At least she took the lump in my breast seriously - thankfully not cancer. But, as the year progresses, a good doctor is finally found. My cousin helped me find a clinic that bulk-bills and is taking on patients.

My current GP listens every time I see her. Every. Time. I go in with a new symptom or concern, she orders the right tests or refers me to someone who can help. Through her help, I’ve been able to see a speech therapist about the ongoing swallowing issues, a physiotherapist about my falls, a dietician about my dietary issues which contribute to deficiencies, a surgeon about my goitre (he put me on medicine because my thyroid was a bit overactive - suspecting hyperthyroidism or any other forms of it - in the most recent blood test through the hospital when I went up by ambulance with chest pains, ordered a CT scan and believes the best course of action may be to perform a complete thyroidectomy, meaning removal of my thyroid), had me undergo full blood tests (not just the usual), had me undergo an ECG and TTE (trans-thoracic echo, an ultrasound of the heart) just to make sure all is well there since I keep having chest pains and most recently referred me to a neurologist because she believes my symptoms line up with a rare genetic condition. She’s also looking into finding a neuropsychologist who can help with an autism assessment.

Because of the help I’ve been receiving, I’ve been a bit more hopeful of a diagnosis finally coming in the near future. Because I’ve been seeing a physio who helped me with strengthening exercises for my legs, I have been able to go out walking for a little while - never out on the streets but yes in shopping centres, that way if something goes wrong, someone is nearby to get help.

I still feel nauseous (still on Ondansetron for that). I’m still in pain every second of every day. I still feel that weakness. But, I’m starting to have those okay moments where I can go shopping or play with my niece and nephew - both occurred over the last couple of days, a water fight two nights ago where I just stood there shooting a water pistol at them as they ran around me, and an hour out shopping with my niece. Yes, those hit hard the next day and up through the next week. I do not intend to push myself so hard I’m at risk of hospitalisation. But, I also need to work at rebuilding my stamina. My father and grandfather have special birthdays next year and I want to be able to attend the dinner organised...even if I can’t eat while there, as long as I’m there is what matters.

But, for now, it’s baby steps. Sitting up and watching a movie. Washing some dishes. Carefully playing with the kids. Try to keep the shopping trips short. Eat what is possible, not what is a must.

[athenanuu]

A rant about Dr. Ignorant and autism:

Husband is autistic and was diagnosed in adulthood after we fought a long battle against an old General Practitioner, Dr. Ignorant. During the appointment Dr. Ignorant told us that "Autism is a child's disease and adults don't have it" and other unsavoury 'facts.' This guy is condescending, holds onto out of date ideas: overall he's a nasty piece of work.

Later we moved to a different city and register with a lovely new GP. We hang out/sometimes volunteer at a local charity ran hub for older teens and adults on the spectrum. The hub puts on activities and serves as a help centre, and the people that work there are incredible. They're kind and funny and help in any way that they can.

A few months ago, several staff members independently said that I display many traits and I could try for an assessment if I wanted. I've been thinking about it for a few years, so I agreed. One of the managers, Kath, rang my GP and booked a doctor's appointment for me because I hate phonecalls. She offered to come along to explain to the doctor where these services are and which specialist to refer me to.

I was oblivious to the fact that a new doctor had joined my local GP service and as misfortune would have it, my appointment was with Dr. Ignorant.

I explained to Kath that this specific doctor caused problems for Husband, so she sat with me the entire time to act as moral support. I was anxious and overwhelmed because I knew that the doctor would be an absolute pain in the arse, so I couldn't properly articulate what I wanted. Kath took over and explained to him why I was there and which specific specialist/assessment centre to refer me to for a diagnosis.

Dr. Ignorant turned around and said:

"Well, we'll have to do some blood tests first."

Kath immediately froze and desperately tried to maintain professionalism whilst asking him something along the lines of "What the actual fuck?"

A question to which he had no coherent reply, nor any answers as to why or what exactly he would be looking for in these blood tests. He simply restated that he'd only send off the referal once I've had a batch of blood work done. After 10 minutes of going in circles I was nearly in tears, Kath was about to explode into a million pieces of disbelief, and Dr. Ignorant had made it abundantly clear that he would rather waste NHS money on unnecessary tests than send off this referal. I couldn't self-refer so I had no choice, and we reached a stalemate.

Kath and I got back to the hub, both of us trying not to break down into hysterical laughter of absolute horror, and she said, "Never, in all my years, have I ever heard shite like that before."

Even months later I still haven't been for that blood test because, well, executive dysfunction, and also out of sheer defiance because fuck that guy. Now all of the staff at the hub tell service users to avoid that doctor in particular, and we still laugh about that joke of an appointment. Kath is working on putting in as many complaints against him as we can.

I'm going to register at another GP service tomorrow, putting in the effort to finally be free of that doctor and to find an actual professional that will help me get a referal for an assessment/diagnosis.

[theworldoffostering]

Today

I know I am not alone in my thought process being all over the place and going a million miles a minute...

E: I’m pretty sure E’s glasses are too big.  DH left a message with the eye doctor today asking about exchanging from for the same frame, only smaller.  Now that we know her eyes are crossing, I feel like we should see an ophthalmologist.  She was diagnosed by an optometrist.  Am I being paranoid?  I emailed her GP today to ask if she would refer her.  In addition, E is having a hard time keeping her glasses on because her ears lack cartilage at the tops of them which make them a bit more floppy than the typical ear.  This is due to her genetic deletion.  I also asked the GP for a referral to have someone look at them.  I’m guessing this is a plastic surgeon, but I really have no idea.  I may be way overthinking at this point, but admittedly I feel overly cautious with E due to her diagnosis and all of the unknown that it entails.  If she needs glasses for the rest of her life, at some point having to strap them on is not going to be cute or comfortable, so I guess I’m looking for options. I need to buy her a car seat because she is outgrowing her five point harness.  Currently looking at the Clek Oobr (I need to be able to get three seats across), and have one in my online shopping cart, but they are so expensive.  Gah.  I hate spending money on this kind of thing. DS: Since he is away at camp, I went through his dresser and organized it all.  I also took out all of his winter clothes and put them in a bin.  There’s probably only 6-8 weeks until I need to drag out the long sleeve shirts again, but whatever.  He’ll appreciate having more space in there.  I had him strip his bed before he left, and DH put clean sheets on his bed so he has that to come back to.  Ms. 6: I left a message for her therapist today as she is talking a lot (for her) about wanting to return to her birth family.  She swears she doesn’t remember anything bad that happened to her as a child, and that maybe the “bad things” only happened to her siblings.  She wants to see her biological family and is professing her love for her.  I know I should expect this, but I’m surprised by it because her siblings are terrified of ever having to see their biological parents again.  TPR has been done for years, and Ms. 6 hasn’t had contact with them for at least four years if not longer.  H: Never changed out of his pajamas today.  He went with DH this morning to Home Depot and then to watch machines work this morning.  He played outside this afternoon in the sandbox and rode his bike a bit.  Still my most easy going kid. DD: I had DH drag two big trash cans into our driveway this morning, and then gave her the keys to the car and said, “Go practice parallel parking.”  DH gave her some instruction and then just let her be.  DD does not like driving with me at all.  I love DD, but I do not enjoy driving with her either.  I told DH that I will never survive teaching five more people to drive.  I’d rather pay someone.  Seriously, it’s that bad.  DD has postponed her license test twice.  It’s scheduled for next month, but I don’t think she’ll be ready by then.  She just is not motivated to practice driving, and she’s not a natural, so she needs the practice.  At least when she’s 18, she can take an Uber I guess.  I told her she really needs to bike more if she’s not going to practice driving because I need to be doing less for her as she gets older.  She is scheduled to work one whole day this week.  I love all of the benefits (free coffee) that she gets from working as a barista, but seriously, one day of work?  She applied for a job at a grocery store today because she needs to be working more.  Baby: I take back everything I previously posted on potty training.  The last few days have been exactly how I imagined they would be.  So many accidents.  I would so much rather be doing diapers.  I think we may just go back to them because I don’t have the patience to deal with it.  He uses it as a way to be distracting.  For example, I had him sitting on the step today (part of our whole PCIT thing), and he said he had to go potty so he could quit sitting.  Same with the bath.  He wanted to take a bath.  Once I had him in there, he kept asking to get out to use the potty, but he didn’t really need to go.  Then he was outside today and peed his pants three times in less than ten minutes.  There is something appealing about diapers instead of managing this kind of thing. He learned how to unlock the baby gates a few weeks ago so we took them all down this weekend.  I love being able to walk around my house again. Parents: Fried and need a vacation.  We were supposed to get away this month, but the babysitter canceled.  Ms. 6′s Big Sister officially quit today due to an injury that has prevented her from mentoring for the past six weeks.  Basically, they met, and spent one afternoon together and now are parting ways.  There is just no respite or break of any kind and I’m spent.

[punkgemjasper]

This is not a fun post...

Seriously. I need to vent some stuff out and it’s going to get pretty heavy. Like, this is purely ramblings from my brain and from someone who is sick of everything in her life, barring say...a few exceptions (my girlfriend, online friends, like 2 friends who don’t do any of the things I’m about to say) I don’t expect anyone to read this, and that isn’t the point. I just want to scream at something that my  ‘friends’ and my ‘family’ won’t see because a lot of what I have to say is about them.  You’ve been warned if you read what I have to say... 

First things first, a little bit about myself. I’m 25, a pansexual lesbian, and I’m butch. I’m a big girl, who’s been struggling with her weight since she was diagnosed with PCOS at the age of 16. I look intimidating, I look strong.  I’m pretty much the very stereotypical looking ‘Butch Lesbian’ ...I get confused with a man a LOT. I am also someone who suffers from chronic pain. I have fibromyalgia, an ongoing stomach problem that means I can’t eat properly if at all some days, depression, but the kind of depression that I’ll have for the rest of my life, on top of an anxiety disorder, and anger management problems. It makes me feel like I’m some kind of roadmap of problems.  Now, you see, there is an issue with being a butch girl. Can you figure that out? It ties in with a lot of the above problems, I have to appear strong. I have this unwritten obligation to the world that I’m not allowed to show emotions or cry because that would mean I appear weak in the eyes of everyone. It’s a problem that I’m probably not alone on honestly. So can you imagine my struggle when I need some help, a shoulder to cry on that isn’t my girlfriend, because I don’t want to put her through any more of my crying, just a friend who’s there for me.  A lot of my friends, they all advocate against suicide, they all preach about going to get help, but when someone they know is actually suffering, they don’t give a shit. The last time I spoke up about my depression, and how badly I was treated by the mental health care team at the hospital you know what I got?  My head bitten off for being appalled by the way I was being treated, like the fact I was complaining about the NHS and a supposed ‘mental health worker,’ who only wanted to berate my family, who at the time could not help me, my dad was dying from stage 4 lung and brain cancer, my mum is legally blind, neither of them can drive and I was in no state to be anywhere near trains, let alone travel the 2 hours it takes for me to get back to my parents. Hell, the reason I was at the hospital in the first place was that I was going to find a way to do some serious harm to myself. You know who calmed me down in the end and stopped me? My girlfriend. My mum. An A&E nurse had more empathy and understanding than the actual psychologist they threw at me.  Or whenever I speak up, I get ignored, or slapped down and told ‘you’re feelings are not as bad as my feelings,’ constantly, by a lot of people in my life. Like I’m not allowed to feel pain, or depressed or anything.  It was meant to be my dad’s birthday yesterday, it was hard, I didn’t bother saying anything about it, not properly, because no one would care. When I did say something, only ONE person actually made sure I was okay, a friend in America who never even knew my dad, do you know how badly I wanted to be with them? Just so I could have that needed support, a drink and a hug? Not a single one of my friends in England gave a fuck. No one thought to just ask if I was doing okay.  That’s a running theme and it’s a cycle I have to keep explaining to any professional I end up talking to...I speak up, I get slapped down, so then I don’t speak up so I don’t get slapped down...see how that can damage someone? No one knows just how bad I am because I can’t tell them just how bad I am.  Mum knows, she knows just how bad I can become but recently, she just...doesn't care as much as she used to. These days, our conversations just seem to be about her new ‘boyfriend,’ or borrowing money from me. Most of the time it is to help feed the dogs, granted, I love my dogs, even Ludo who isn’t 100% there with trusting me yet, I’d give everything I had for them, but it’s getting to the point of where I want to sit my own mother down and go through her payments like she did with me years ago, it becomes a problem you get jaded to.  So I don’t bother to say how bad my depression is because, like the above with my friends, I tend to get ignored, slapped down with the ‘me too’, or worse...told to grow up and stop being dramatic. Something I’ve been told since I was a child and this is what it has done to me.  Created an irrational fear of opening up to anyone, so when I do get bad, I explode. I explode in such a way that I hurt myself, end up having to need help from either my GP or the hospital, and then someone finally fucking realises...but even then I get no help. Or at least no the right kind of help, that I keep having to tell them.  Being talked to like I’m an idiot when I’m debating if I should throw myself in front of a bus, isn’t fun. The line, ‘Oh you’ll be fine soon, it says in your notes you do this kind of thing a lot,’ will ALWAYS haunt me. That was what someone who was a MENTAL HEALTH CARE NURSE said to me. While I was shouting at him that I didn’t need an ‘autism specialist,’ that my autism isn’t the cause of my suicidal depression, that my years of being bullied, abused and ignored was the cause, but he didn’t give a shit. Kept speaking down to me...yet again. The one who stopped me was my girlfriend.  But you see, I don’t cut myself, I don’t overdose, I don’t do any of that...I punch things, I break my knuckles, over and over again. But the frustration builds up and I lash out. It’s scary, I understand that it is, anyone who’s seen my rare selfies, can see why it’s so scary...but they can’t see past that to stop me, from doing it in the first place. ...Except for my girlfriend.  (It all keeps coming back round to her, she’s currently the only one I can confidently say, is keeping me from doing something fucking stupid. And I know for a fact she’ll read this, please don’t worry. I know you will. But I’m not going to do anything stupid, I’m not going to hurt myself. I just need to vent and I don’t want to burden you with anything more than I already have...it’s not fair. You’re also suffering from your own problems, and the last thing I was to do is make them worse, or invalidate them with any of this, like the way everyone does to me.) Now, back onto the whole...lack of support. I’m surrounded by people who have the same problems as I do, but whenever they speak up, they get bombarded with help, love and support, but when I do the same...nothing. Not even a message or a ‘here is this nice picture, hope it helps,’ nothing. Hell...I’m even being fucking isolated and almost ostracized from things I used to love doing. I KNOW this for a fact. I’ve been told about RPGs that I have expressed HUGE interest in joining, running without me, and I’m supposed to smile and go ‘haha yeah. Awesome...’ a hobby that once saved my life I’m now starting to hate because of my so-called ‘friends’.  I don’t understand why. I have a theory. But I don’t even want to go down that route, because if I do, I’m just going to lose all hope in my friends and just stop giving a fuck. Which is something I don’t want to do. 

A big part of my personality is the fact that I enjoy helping people, the look on someone face when I help them, it’s not been uncommon of me to stay up till the light of morning with someone from another country, to make sure they had someone there for them so they didn’t hurt themselves. I wanted to go into counselling to help people like myself. One day, I might still do. I want to. If I stopped giving a shit, that’s when I know something is seriously wrong with me and it’s getting to that point. The point of where I just don’t care anymore. The thought of ‘if you’re not going to help or listen to me, why the fuck should I help and listen to you?’  I feel so done with everyone, however, I’m reaching my limit with just how much I can take and it truly does feel like I’m teetering on a knife-edge. One more thing could tip me off that point and I tumble off. But at the same time, I don’t know what the fuck to do about any of it. Like I said...I’m not allowed to say anything, because it’s either  My problems aren’t as bad as their problems I’m just being over dramatic  Or How dare I say such things  So I’m probably going to slip back into wearing a mask again. A false smile to hide the pain I’m going through each and every fucking day.  I could take pills, anti-depressants and the like but the side effects. Oh boy, do I get those. From the feeling even worse to being sexually fucking numb, I get them and I get them BAD and with my current health issues, being my stomach, I don’t really want to risk anything that could make that worse. I’m stuck in a bind.  See, there’s another thing that bothers me...I get more support from strangers online, as in people I chat to when I’m not a total mess, on discord, or on here, than I do with people I know outside of the internet. People who only know me as either Zorin or Punk Gem or whatever handle I use, treat me better and actually care more about me than the friends who know me as Lauren.  That speaks fucking volumes because I’m no different in my real life than I portray online you know? If anything I’m even shyer! But what the hell is going wrong in my life that people online, in other countries, apparently value me more as a person than those who live 10 minutes away.  It wouldn’t have been my dad’s birthday yesterday. He passed away on boxing day, something I’m not over, last year. I said something about it, and you want to know the ONLY person to comment on that? To make sure I was okay, so say ‘I’m here if you need me,’ an American friend. Someone who I’ve only met once, and he never even knew my dad but had a drink to his memory anyway.  It was both heartwarming and soul destroying because it’s an eye-opening experience for me. If someone that far away, who has a job, his own life, has the time to just check in on me, then what the fuck is wrong with everyone else?  If I say anything about that by the way, it’ll be ‘OH I’m sorry, I didn’t see it!’. Bullshit. I wasn’t quiet about it. It was a huge fucking post pinned to my facebook wall yesterday. Fuck you.  You also want to know what I don’t want? Being dragged into family drama that I want no fucking part of. My dad’s side of the family vs my mum. That’s all I’ll hear when I go back home for a weekend, is bitching and moaning about my dad’s family and I just have to smile, nod and agree. I don’t want any part of it, not when my head is already a mess from everything that has happened to me over two fucking years. And once again...can’t talk about that to anyone. So you see, I’m stuck in this cycle. Doomed if I speak up, doomed if I don’t.  Thank you, if you bothered to read any of this. I don’t expect anything from this, I just needed to get a lot off of my chest, and this isn’t the tip of the iceberg. I have a lot. A lot of heavier stuff that I’m keeping quiet, because what I have to say, should only be heard by a professional. 

[mental-health-advice]

Submission about postnatal depression

So this is quite long but I need to get it all off my chest. About a year and a half ago I gave birth to my son. He was born 13 weeks early and had to stay in hospital for 3 months. During that time I’m pretty sure I had postnatal depression and I definitely had ptsd. Every time I seen a pregnant lady I would cry. Even on tv or randomly in the street. While we were in hospital one of the NICU parents told me about a Facebook page for parents of premature babies and it helped me so so much to have these people to talk to and who were going through the same thing. While we were in the hospital my partners sister got pregnant and it just ruined me. Everything I had kept bottled up just came to the surface and I was in bits. I would post on the Facebook page (thinking it was a closed group no one could see the posts) about how much it upset me and my feelings were validated which made me feel better. Turns out people on my Facebook, including my partners family could see it all. I’d stopped posting stuff after my son got out of hospital but a few months later my partners sisters baby was stillborn and he found out everything I had posted about how upset I was with her being pregnant and that I resented her. His other sister had screenshotted it and showed his whole family. They were all extremely angry with me and his sister hasn’t spoke to me since. They all acted like it was my fault the baby had passed away and I can understand why they are so upset completely. My partner threatened to leave me every day and he told all my friends of 9 years what had happened and they’ve not spoken to me either since. I have completely isolated myself. I talk to only my mum and my partner and sometimes can go days without talking to another adult. The day after the baby passed away I found out I was pregnant with my daughter. I wasn’t allowed to talk about my pregnancy at all or enjoy it without being made to feel guilty. She was also very early and nearly passed away after the first night but she made it and came home 2 months ago. His sisters have not spoke to me or asked how she is and neither have any of my friends. I’m incredibly lonely and can’t leave the house without being with someone else because I don’t drive and going out with 2 babies is impossible so I’m stuck indoors for days on end. I definitely still have ptsd and have depressive episodes that can last for days and have found out his sister is pregnant again. I’ve had suicidal thoughts but I really love my children and they are the only things keeping me here. My partner really hates me but said he won’t leave because of the kids.

Hey lovely,

Pauline and Caitlin have decided to write a collaborative answer for your submission, we hope that’s okay! We’re so sorry to hear that you’ve been through so much, anybody can see how difficult this has been for you and we’re really proud of you for reaching out to us, and for getting through it, that shows that you’re much stronger than you realise.

While the things you’ve been through do sound like they are symptomatic of postnatal depression and PTSD, we are not professionals and cannot diagnose you, and we would advise you not to try and diagnose yourself, either. If you are still struggling as it sounds like you are, we would strongly advise you to reach out to your GP, your midwife or health visitor or postnatal clinic about how you’ve been feeling, as you don’t have to go through this alone and nor should you. We are here for you, and there are plenty of people in your life who will care and want to help, if you’re able to reach out. Please also know that it’s not in any way your fault that your baby was premature, or that you found it really difficult when you first became a mother. You’re not letting your children down by feeling this way, they still love you as their kind mummy who looks after them, and despite how he may act, you’re not letting your partner down, either. You’re not letting anybody down, you’re clearly quite poorly and we believe you should be focusing on getting yourself better rather than blaming yourself for something that is not your fault.

Something we want to stress is that you are absolutely not to blame for your partner’s sister’s baby being stillborn!! The feelings you had when you just found out she was pregnant were understandable, as you’d just gone through such a difficult experience. Those feelings needed to be dealt with in some way, and it’s wonderful you had such a support group where you could vent and release those feelings. Struggling with her pregnancy didn’t mean that you wanted her pregnancy to end so badly. You might have wanted her to not be pregnant at the time, as it was so intensively difficult for you, but that still doesn’t equal wishing for her baby to be stillborn. And even if that thought had occurred, that still wouldn’t mean you were to blame! Blaming you would imply that it was in your ability to control whether her baby was born stillborn or not, and that simply isn’t the case. We truly hope this is something you can keep in mind, and that this will start to feel true for you sooner rather than later. You do not deserve to struggle with these feelings of guilt, as you were not responsible in any way.

We agree with you that it’s understandable your partner’s sister and her family was upset. However, that doesn’t mean that we think they were right in putting the blame on you! What could possibly have happened, is that they (although most likely especially your partner’s sister) used blaming you as a way to cope with their grief. When dealing with death, it can feel very much out of our control, which can be hard to accept. As humans, we will always try to gain back this feeling of control. By blaming you, this meant that the control was at least in someone’s hands, opposed to the way it was before where nobody was in control of it all happening. While their initial reaction might have been a coping mechanism for their grief, it still really wasn’t fair to put the blame on you, and that’s something they should have realised and apologised for when the emotions had reduced a little and they were able to think clearly / rationally again.

It wasn’t okay for your partner to tell this all to your friends. That wasn’t his call to make, as your friendship didn’t have anything to do with everything that happened. We’re always all for being open and honest in friendships (and any relationships really), but it wasn’t your partner’s decision to make; it was yours. You were friends for a long time, so there was also a big chance if you could have told them about everything that happened, they’d have been more understanding. Right now they only heard one side of the story and this side was told while a lot of anger was still playing up, so it might not have been the most neutral perspective of what happened. I don’t know whether at the time you tried to explain to your friends your side of the story. If you did and they still decided to ignore you, I’m so sorry. You do not deserve that at all! If you didn’t explain it all to them yet, maybe this is something you could try still? It’s completely up to you to decide whether you want to do this, but we think it might be worth a shot! If it doesn’t change the situation, then you’re still in the same position as you are now. You’ve got nothing to lose really!

For your partner we think the same applies as to your partner’s sister. His initial reaction understandably was to be upset, but after having calmed down and realising you weren’t to blame, it should have been a topic of conversation, rather than to keep a stiff head and treat you so harshly. Being in a serious relationship means to be there for each other in good and bad times and in our opinion this includes at least trying to look at things through your partner’s perspective, which is something he lacked to do. You really deserved more support, both from your partner and your friends!

We understand that everything you’ve gone through has caused you to feel like isolation was a good option, and we understand why you’ve isolated yourself. But sometimes it feels like isolation is our only option, when in reality it only complicates our struggles and causes us to feel a lot worse. Which seems to be what’s happened to you too. Isolation seemed to be the best option, but now you feel incredibly lonely and you don’t have a support network anymore. This is something to work on!

Sweetheart we would really recommend that you look for local sources of support who you can speak to when you’re low on a regular basis, or if you’re heading into crisis. This support can come from a variety of sources. For example you could reach out to your former friends, explain what has happened in as much or little detail as you feel comfortable, and ask them for their support. However we completely understand if you feel that you can’t forgive your former friends for leaving you when you needed them most as how they treated you is very hurtful, so of course only do what you feel comfortable doing! You could also reach out to charities that help mothers dealing with postnatal depression, or even your healthcare visitor/equivalent to you locally. You could join a group for mothers who have been through similar things, or even just a social club for mums with young children. Alternatively you could try and reach out to a mental health professional, who can help you to understand your feelings and work on more long term coping mechanisms. This could also involve getting professional help for suicidal ideation, PTSD (like symptoms) and depressive episodes. This is important because it will help you to make the most of your children growing up, and help you to not feel so guilty about everything you’ve been through. If you’re able to successfully tackle suicidal ideation then this will be a huge step in improving your mental health, as well as give you piece of mind and prove to yourself how strong you are and that you’re able to overcome all of this.

Since your partner will stay with you for the children, we really think it’s important to work on improving your relationship. That’s why relationship therapy might be a good option! This is something you’d both have to be open for though, which your partner might not be. A reason that might potentially persuade him into going through with it, is that even though you two are together now to not make the children go through their parents splitting up, being together isn’t always better for the children. Children pick up on a lot, and there’s a possibility they’ve noticed the tense atmosphere between you two. Basically, if your partner doesn’t want to get into relationship therapy for the two of you, see if he wants to do it for the sake of your children. Hopefully that will help!

We’re so happy to hear that your children are a reason for you to not act on your suicidal ideation and to instead keep fighting. It however is important to increase the amount of reasons to stay, as having more and more reasons to stay can also help reduce the suicidal ideation a little. And we’d really wish for you to not experience such strong suicidal ideation anymore but for those feelings to lessen and lessen until they’re away completely. We have a page listing a lot of reasons to stay that you can find here. We’d recommend you to use this page for inspiration, but to make your own personal list with reasons to stay, rather than to read only through the page and leave it at that. You can use our printables to make your personal list with reasons to stay.

All in all, we truly hope that you can get some support and help real soon! You truly don’t deserve to be going through all of this, and even less to be going through all of this on your own! Feel free to let us know if there’s anything else we can help out with.

Sometimes what seems impossible, is just hard.

Lots of love, Caitlin and Pauline

[islandpcosjourney]

Day 5

19th March 2021

I had a day off today, or rather a day to work at home so I didn’t need to be up early – I took every advantage of that! Took me a little while to get going properly today and I also spent more time in the kitchen than I intended, giving my juicer parts an extra deep clean as I usually just rinse them under hot water to save time, but over time the residue builds up and needs soapy suds to break it down – that’s a once a week maintenance job.

Today’s juices are:

Protein Rich Powerhouse Apple, Spinach, Pineapple, Cucumber, Lime, Broccoli stem, Pea pods  blended with Avocado, Hemp protein powder, Mixed seeds. Breath of fresh air  Orange, Carrots, Beetroot, Ginger

I took a cheeky step onto the scales to see how I was doing and I was delighted to find that I’m only a few pounds off reaching my goal of losing 15% of my overall bodyweight and then I’ll nearly be at my wedding weight too. When we got married in 2016, I got my wedding dress made locally on the island with many fittings over months at each stage of the dress-making process. I remember feeling like I knew this would be the only time I’d be able to fit into it as I was doomed to continually put on weight forever. I loved that my mum was still able to put on her wedding dress, even after 40yrs, which was a lovely way for her to reminisce. Now, I know that I’ll potentially get back into it, but hopefully not for long as I want to spend the rest of my life being smaller than I was on my wedding day! I tried so hard to lose weight in-between fittings but I wasn’t making massive progress so I was spending lots of money on treatments to help aid my efforts as I was also desperate to look good in a bikini on our honeymoon (my one and only holiday abroad when I ever had to think about lying in the sun). I had horrible bumpy cellulite on my thighs and I hated it. I knew it wasn’t healthy to have skin like that but I didn’t know what caused it and I had no idea how to deal with it other than to get advice on what creams to buy and go through cling-film treatments to speed up any processes. 4 years later and I’ve found that juicing has almost eradicated all of that bumpiness – much to my astonishment! I remember the first time a few months ago when I was getting dressed and feeling the smoothness on my upper thighs and thinking I was imagining things. Obviously we all go through moments in life where we wished we’d known earlier what to do but to think that Juice could’ve had the power to help me back then is kind of mind-blowing. But, it was a process I had to go through to come out the other side and really appreciate what is important in life – health! Jason Vale quotes a homeless man in one of his books where this man who lives on the street is questioned as to why/how he eats so well – fruits and veggies that supermarkets are throwing out, that kind of thing – and he says,

“If I don’t look after my body, I’ll have nowhere to live”

SO true isn’t it?! A homeless man, who ‘technically’ had nowhere to live ie. a house, a roof over his head, could see how important eating the right nutrition was because he wanted to “live”. Amazing!

“If you eat dead food, you are going to feel dead. If you eat live food, you are going to feel alive”  – Jason Vale

Going back to skin, on Day 2 of this particular journey, I started feeling the softness returning in my face. I’ve generally had very smooth, soft skin since Juicing apart from days when it returns to being oily again with a few breakouts and then I know I’ve eaten too many bad things - its a pretty good detection system really. Pretty much as soon as I ONLY consume juice, my skin improves massively. I had very bad skin growing up. Cystic acne that I now know would’ve been related to my PCOS, but at the time we just thought it was teenage hormones, only mine continued for years into my adult life. My face started to clear up after I was diagnosed with PCOS and my GP put me on Co-cyprindiol, which also regulated my menstrual cycle, but when I agreed to take it, I wasn’t aware of how devastating it would be to my hormones in the long-term, I was just delighted that I finally had smoother skin and less painful acne to deal with on a daily basis. They don’t tell you that something which is meant to help your hormones, can affect your hormones. They basically gave me a treatment for a symptom rather than helping me find a treatment for the underlying cause. THAT’s the difference between me in 2011 and me in 2021.

[casnovakisded]

I’m back.

03/03/18 | 04:14am

So... life’s a bit shitty at the moment, and I just remembered that Tumblr exists.

I don’t really talk to anyone anymore and I think it would be good for me to vent to you guys. I had a meeting with a super sweet manager at work today and it gave me a little bit of hope. We touched on talking to people and just venting and how that can help, so i’m going to give it a go. Honestly, I think going through work to try and rebuild my mental health is my only viable option at the moment, which kind of sucks because I can’t often mentally deal with being at work right now. I’m getting ahead of myself - more on that later.

So, to those who may be reading this that don’t know me (If anyone’s reading this), i’ve been juggling anxiety, depression, (undiagnosed) bipolar, eating disorders and (undiagnosed) schizophrenia since I was around 14 (I’m 20, nearly 21 now), and i’ve only just started to try and get help.

I was forced to go to the doctors when I was younger by my mum when I opened up to her about harming. She told me that I was to stop, and if I didn’t, ‘they’ would come and take me away and lock me in a room until I was ‘better’. Now, don’t get me wrong, I don’t blame my mum at all for saying that. She panicked, and as far as i’m aware she’s never suffered with any mental health issues, so I don’t imagine there’s too much of an understanding there. She was trying to scare me out of it, but it just made me feel like I couldn’t talk about it. It kind of became a grey area that we just didn’t really discuss so I just got on with it and mostly just learned how to be secretive. 

From that point on i’ve always told everyone of importance that i’m fine, because that’s better than being locked in a room until i’m better, y’know? Don’t get me wrong, I knew then and I know now that that’s not going to happen, and that I just need help, but I can’t say it doesn’t make me feel anxious every time I go to the doctors. It’s a feeling I don’t quite understand, but then again, I don’t really understand any of my feelings. Woo. 

So from the beginning... 

I started harming when I was around 14. I don’t really know why I did it - probably a mixture of being bored, sad and exposed to a lot of triggering material. Like I mentioned earlier, I opened up to my mum about it because we had a super good relationship, and I felt like I was lying to her in some way by not telling her that i’d done it. What was said was said, and that was that. I was made to go to a doctor’s appointment at 7.30am the next morning (Which was actually before the practice even opened so I think that was just a bit overboard tbh). I couldn’t understand a word of what the doctor was saying (that wasn’t meant in any kind of negative racial way, I just simply couldn’t understand what he was saying because of his heavy accent), I could just tell from his tone of voice that he was being patronising as fuck. By the end of the super drawn out and generally painful doctors appointment, I was referred to CAMHS. So off I went to this appointment with this top dog guy at CAMHS (We’d recently had a fair amount of young suicides in our area so they were pretty onit). It was an odd session. My mum was there and she was obviously going off on one about how terrible it was and how I had to stop, and then this doctor guy is trying to convince her to not take away my blades because at the end of the day, i’m only going to find something bigger and sharper.. oh it got interesting. I sat silent more or less the whole way through, but I smiled and I nodded and I said I felt fine when I needed to.

After this appointment, the doctor concluded that I had symptoms of anxiety and depression due to previous emotional trauma and that I could totally be fixed with counselling sessions from my school counsellor. I played along and I remember speaking to the woman once. Again - I smiled, and I nodded and I said I felt fine when I needed to. 

I didn’t go again. 

Having anxiety, depression and being bipolar all at the same time is just fucking exhausting. 

First of all: depression. My depression makes me feel lazy, and menial tasks just seem like an awful lot of effort. I showered yesterday, for the first time in around a week and a half. My house hasn’t been cleaned in a loooong time. Talking? That’s becoming an effort (which is really annoying because my job requires me to talk to people all day. I’m still brushing my teeth every day though, so that’s good. 

Anxiety. This makes me feel like nobody cares, that i’m a burden to everybody, everyone would be better off without me, people would prefer it if I wasn’t there, people are talking about me, people are making fun of me, people are looking at me and judging me. Anxiety also makes me bite my nails, a lot. I don’t even know how I bite my nails so far down, but it sometimes gets to the point where I just don’t have a nail at all - like literally at all. Anxiety also makes me feel nauseous, and sometimes it feels like the world is literally going to end. If you’ve ever had a near death experience and felt the sense of impending doom, that’s probably the best thing I can relate it to. 

Lastly, bipolar. Oh the joys. So i’ve not been diagnosed with bipolar (As i’ve said, i’ve not really pursued help for my issues up until now), but one moment I will be on the highest high, nothing can defeat me, and i’m totally ready to face the world and whatever it wants to throw at me, and then the next moment everything’s gone grey and dull and the light at the end of my tunnel is actually a train that’s plummeting towards me, and I don’t want to move out of it’s way. 

So. Fucking. Exhausting. 

As you can imagine, having all of these all at once is just a big ol’ mess. It’s so draining (both mentally and physically), and it’s just proper difficult to try and balance all of the conflicting emotions.

Now imagine all of that, with an added voice in your head. Again, I’m not diagnosed with schizophrenia. It’s not something that was effecting me when I was younger, but it’s not something that i’ve managed to talk to anyone about yet either. There are very few people that do know this about me. It brings me back to my earlier point - if there’s one thing that’s going to get me locked in a room until i’m better, it’s hearing voices in my head that aren’t real - surely. Don’t get me wrong, it’s not all the time - It’s mostly when i’m tired. I don’t even know if it’s schizophrenia, but what I do know is that when i’m in a bad way and i’ve had little sleep, I can hear a voice clear as day in my head. Mostly it just repeats things, usually what i’m thinking, usually not very nice things. It’s almost like your own inner voice, but it’s loud, as if i’m listening to it through headphones. It’s funny actually, i’m as good as deaf in my left ear, but I swear to god I can hear that voice in surround sound. I’ve been tired quite a lot lately, so y’know, that kind of sucks.

Eating disorders are just shit. There’s no other way to describe them. Whether you: restrict yourself, purge, fast, over eat, binge, or like myself, just don’t eat until someone forces you to, it’s all just really shit. It’s a mixture of an addiction, and extreme emotion. It’s a mixture of wanting to be as pretty and as perfect as you can be, and feeling like this is the only way you can make yourself worth something, whilst also feeling like you have to keep going, you owe it to yourself, you feel like you have no control if you slip up and eat. Obviously i’m aware that not eating is not healthy. I know that. You need to eat to stay alive and you can’t expect your body to function correctly if you don’t look after it, I know. I only have myself to blame for the fact that i’m dizzy all the time, and I always need to wee because the only thing I ever consume is tea, and that every time I stand up everything goes black for a short while - like when you get head rush from standing up to quick. As much as I know that all of this can just be solved by eating, what’s to say that’s going to be the better alternative? When I start putting on a fuck ton of weight because I feel too depressed and fed up to actually exercise and I inevitably start taking that out on myself, what position does that leave me in? I’d rather be sad and skinny than sad and fat. I guess my point is that eating disorders suck - they manipulate the way you see yourself and convince you that you’re never going to be good enough, for anyone. 

I’ve always hated the way I look. I lost all of my hair (head, eyebrows, most of my eyelashes) when I was around 13 and this opened a whole new world to me. A whole world of bullies, unnecessary comments, staring, and laughing. My school made the situation a million times worse. Apparently it was too much of a distraction for me to sit in class with my bald head on show, so I was forced to wear a wig through school. I was given £500 from the school to spend on wigs, so I bought 2 of the exact same style. 

They were horrible.

Wigs are uncomfortable. They’re hot and itchy, and they’re basically a massive flashy sign that says ‘bully me’ - great when you’re in a room full of other 13/14 year old kids that simply do not give a fuck about how you feel or how their comments may affect you.

Recent events over the last, let’s say, 4 years of my life have really fucked me up. I think i’m going to write a post for each event in the hopes that maybe writing down what happened will help me process it and eventually get over it, but I quite simply can not be bothered to do that right now after typing this essay.

In the last 4/5 months, i’ve been actively trying to work on my mental health through my GP/seeking help through work and friends. Well what a task it has been. 

Originally, I was advised by a manager at work to go to my GP. I can’t quite remember whether I went to my GP or to the EAP line (Employee Assistance Programme - provided through work) first, but either way that was 4/5 months ago, and i’m still awaiting some kind of solution or action plan. I just feel defeated most of the time. It seems that every avenue I go down just gets blocked off - every turn is just a dead end and I can’t for the life of me figure it out. When I went to the doctors, they told me I had a ‘mood disorder’ and an ‘eating disorder’. I was signed off work for 2 weeks, and then instructed to make another appointment to go back to the GP (the first date they could see me was around 4 weeks after my return date to work from being signed off, so that was super good). When I went back to the GP, I was referred to IAPT (Improving Access to Psychological Therapies) and SYEDA (South Yorkshire Eating Disorder Association). I was given a date, a time, and a name of a person that would be calling me from IAPT, and I was instructed to self refer myself to SYEDA. I was also given a fit note stating that amended/shorter hours could be beneficial. The date came for the IAPT phone call, but the phone never rang. I tried to chase them up, but apparently they weren’t allowed to discuss the account with me because it was booked through my GP. When I tried to get through to my GP, their line was just constantly engaged. When I had a look into SYEDA, the first thing that popped up in a banner across the top of the page was a message saying “Our waiting list is currently closed to all new referrals other than those referring from Barnsley”. 

Well i’m not from Barnsley so that’s really great, thank you.

I went back to the doctors to let them know of my super successes with IAPT and SYEDA. To my surprise, apparently it was my fault that I had ‘missed my appointment’ with IAPT, even though I never actually received the call. All they could say about SYEDA was, ‘oh’.

When I finally had an assessment with IAPT, they said I had scored too high on their risk assessment and that someone would be in contact super quickly to talk to me about what we can do next, but i’m still awaiting that phone call. 

I don’t even know how many phone calls and doctors appointments i’ve had. I just want someone to help. I feel absolutely drained and I just don’t know what to do anymore. I’m just sat waiting. I’m not living because all I can focus on is trying to get through the day without breaking down into a big emotional mess.

I’m not actively suicidal all of the time, it’s more like.. if I was being held at gun point, I’d probably piss him/her off on purpose. Or, if a car was speeding towards me and I could probably jump out of the way in time, I think i’d just let it hit me. 

I don’t know.

I’m lost.

I don’t really know what i’m doing on a day-to-day basis, and i’m currently just scraping by.

I guess i’ll keep you updated.