mutantinthefamily - Tumblr blog

[mutantinthefamily]

A really interesting talk discussing the impact that diet and nutrition has on EDS Spectrum Disorders.

[mutantinthefamily]

And, just as it takes a moment to die, it only takes a moment to live. You just close your eyes and let every futile fear slip away. And then, in this new state, free from fear, you ask yourself: who am I? If I could live without doubt what would I do? If I could be kind without the fear of being fucked over? If I could love without the fear of being hurt? If I could taste the sweetness of today without thinking of how I will miss that taste tomorrow? If I could not fear the passing of time and the people it will steal? Yes. What would I do? Who would I care for? What battle would I fight? Which paths would I step down? What joys would I allow myself? What internal mysteries would I solve? How, in short, would I live? 

Matt Haig 

[mutantinthefamily]

career opportunities

I am not a client, a customer, nor a service user. I am not a shirker, a scrounger, a beggar, nor a thief. I am not a national insurance number, nor a blip on a screen. I paid my dues, never a penny short and proud to do so. I don't tug the forelock, but look my neighbour in the eye. I don't accept or seek charity. My name is Daniel Blake, I am a man, not a dog. As such, I demand my rights. I demand you treat me with respect. I, Daniel Blake, am a citizen, nothing more, nothing less. Thank you.

For those struggling with an illness that is fought beneath skin and sinew, that cannot be understood or accounted for by box ticking and that is invisible to the naked eye but is a constant weight upon your life. I am one of those people and have been rejected, humiliated and made to feel insignificant by the state in a time of need. ‘I, Daniel Blake’ is a film that confronts the raw reality of humanity and society in Britain. The film took me straight back to the uncomfortable chair in a blank room sitting across from a so-called ‘healthcare professional’, this one actually called himself a ‘Nurse’ but I doubt he had any medical expertise. This was my first encounter with the DWP. I didn’t qualify for ESA (employment support allowance) because I didn’t score high enough on the point system. My calf muscles weren't wasting away and I managed to catch the door as he let it slam in my face on the way out. I suppose I can understand why I didn’t get through the first time, I mean on the outside I looked like a normal, healthy 24 year old. How was a ‘healthcare professional’ supposed to know how hyper mobility and chronic fatigue affected the body. They are unpredictable, volatile and at times aggressive conditions. But they aren’t there to understand how you suffer, they just want to know whether you can piss by yourself and pick up a pound coin. I walked away feeling humiliated and degraded. 

The reason I applied for ESA was because I had to leave my job at Dr Martens as it was affecting my health and being over-flexible wasn’t flexible enough for my recent promotion. I was due to be demoted after being there for 3 years without more than a day off sick and a track record of top sales. I battled through the chaos of boxing day sales, busy Saturdays and delivery, reeling from the sickening pain in my body. I said yes even though I should have said no. Don’t get me wrong it wasn’t at all bad for a retail job, I had gained a lot of fantastic friends, opportunities and memories. But in the end I wasn’t treated with the respect, care or understanding I deserved. No matter how many leaflets and printouts on EDS I took in, because I wasn’t crippled in a wheelchair or bandaged up to the eyeballs I was never taken seriously. This will be a scenario experienced by many, including those with a mental illness. What can’t be felt or seen will never be believed. We wear our cloaks of invisibility with shame and guilt because we don’t appear to be different. One day I can feel on top of the world and the next I can’t even stand or get out of bed.

Due to my state of unemployment and having being denied ESA, I had no other choice but to go on the dole, another humiliating ordeal as some of you will know. Every week having to apply for jobs that I wasn’t physically able to do, but I had to fill in my little book to show I was actively looking for work, gold star Bianca. The disability officer had no idea what to do with me apart from advise me to apply for ESA. Eventually I escaped from the clutches of the Job Centre and ceremoniously binned my little book. Through a friend I began working in the office at Clarks, but soon that too proved to be too much for my body. I was making myself worse because I had no other choice or support. 

I re-applied for ESA and by this point I had been prescribed Naproxen for the pain, a very very strong painkiller that sent me sideways. Needless to say it helped during my assessment as it demonstrated my inability to work, I could hardly string a sentence together never mind clap my hands like a monkey. I was awarded ESA. It made me understand that you have to demonstrate your worst day even if it shares the week with some good. 

In the meantime I had also applied for PIP (Personal Independence Payment) and faced another round of assessments. I have never been awarded PIP and continue to fight for the support it provides. I am not destitute and have the support of my family but I cannot rely on that, especially when having to pay for my own treatment and the small things that help me. My parents and I have worked hard and have contributed enough to at least get a bit back to take some of the pressure off. Each time that brown envelope lands on the doormat I fill with dread at the prospect of having to face another healthcare professional, another blank room and 20 minutes to prove myself worthy. I am made to feel as though I am making it up, that my pain isn’t really there, that I am not crippled with exhaustion or that some days I am unable to walk from one room to the next. The anxiety of having to go to the assessment perpetuates my symptoms and I am reduced to a dithering mess, but then I guess that is it what they want to see. However, it hasn't been enough as I can still wash my armpits by myself. My struggle for PIP will continue for as long as invisible and psychological illnesses are not recognised as satisfactory health conditions. 

At the beginning of the year when I was suffering the most with knee pain, I could hardly stand never mind walk. So I applied for a Blue Badge, which would also relieve some of the anxiety I harboured about going to places and not having anywhere to park nearby. It isn’t just the knee pain that incited this concern but also the Chronic Fatigue as I get very tired quickly and so I just don’t have the energy to be straying far. I was faced with yet another assessment. This time I felt like a puppet on strings, my knees rickety and unstable, as if the nuts and bolts would come loose any second. I was forced to walk a certain distance, which took me outside and paraded in front of a bus stop queue of people. They probably didn't even think twice but for me it was humiliating, my weaknesses on display. The pain in my knees didn’t enable me to go very far and I got my blue badge, which has been a saving grace. A relief for not just the physical stress of having to walk far, but also the emotional turmoil that is actually the most draining. I do get the odd look mostly by the older generation, because I know I don’t look obviously disabled. But as the old saying goes: you should never judge a book by its cover. 

Most recently I was summoned to attend another assessment for ESA, even though I had been put into the Support Group only 6 months before. My first appointment was cancelled 20 minutes before I was supposed to be there as my paperwork hadn't been received. You would think they would have known this earlier. I was re-scheduled and I was a wreck, I didn’t want to go through it again. So there I was sat in the oppressive waiting room, made to wait for 45 minutes; prolonging the torture. This time I was shocked to find that the assessor actually looked me in the eye, her concern seemed genuine and she agreed that there was no reason for me to be there. I spent the rest of the day asleep and in pain because I was so drained. 

Is it any wonder that people who suffer with Invisible and Mental Health conditions don’t come forward and ask for help when they have to fight so hard to prove it exists. To be made to feel doubtful of themselves and how they feel, to have to answer questions that don’t relate to their condition but will determine their fate. To be made to feel less of a human being just because they suffer with what others can’t see. I may be progressing with my mobility and pain, but the Chronic Fatigue still looms large and is probably the most dilapidating as there is no cure. I am slowly learning to manage the condition and need all the help I can get.  

I have now come to realise that the beaming smile and friendly concern is a pretence in order to lull you into a false sense of security. They don’t understand you and they don’t really care. How can they when they don’t even look you in the eye, the only spark in theirs is the reflection of the computer screen. I wonder if they have a recurring sound reel constantly revolving around in their heads conducted by the almighty ‘Decision Maker’. I have come to pity them rather than myself; to have to sit in those uncomfortable chairs in those blank room with air conditioning drying out their skin and asking the same questions over and over and over and over again. Soul destroying. So remember that the next time you are sat on the other side of the desk, show them your worst because they certainly don’t care about your best. A friend of mine who I met through the CFS Clinic, was refused ESA and took the DWP to court, and he won. He now gets encumbered PIP and ESA, so there is a silver lining if you are willing to fight. 

[mutantinthefamily]

[mutantinthefamily]

hugely important research into a condition that is so common yet has little understanding or help available. 

[mutantinthefamily]

you are what you eat

Food that glorious thing which keeps our blood pumping, our hearts racing and our tastebuds wanting more. The thing that can unite, divide and blow our minds. You are the god that can control the hearts of men, you can bring hope or despair, you can heal and repair.

I have come to the conclusion that food is medicine and you can help your body through what you eat. I don’t agree that you can be cured through diet, but I believe that it can only benefit the healing process. As surely if all those millions of cells are exposed to good things, good things can only happen. Obviously it has to be done in the right way and willingly because if you don't enjoy what you eat there is no point. Taking this into consideration, food and diet became the one thing I could control and I think I may have got a bit too controlling with it. Not to the extreme of an eating disorder, just that I probably thought about it more than I should have. For a short time I was also guilty of getting caught up in that whole fad of ‘wellness’ and ‘clean eating’. I thought it would help me when I had run out of options. I’d happily turn yellow from eating so much turmeric in the hope that it would reduce pain and inflammation!  I became so conflicted from reading so many different articles about what you should eat and what you shouldn't. I didn’t know what to believe anymore, I guess I was desperate to find a way to make myself better. Thankfully I didn’t pursue my healthy baking instagram and I don’t post about my smashed avocado on sourdough. Although that might reassure me I was doing something right, right?

I came to realise it is just another commercialised money making scheme, just like the dieting industry and Valentines Day. Don’t get me wrong there are some good recipes from so-called wellness experts but at the same time I think it’s easy to get carried away with it, trust me I know. Every human body is different, and we all need to be nourished in different ways. I know it might be trendy to be gluten free but your body may not thank you for it. I recently watched a documentary on Horizon, presented by Dr Giles Yeo, which really opened my eyes and made me realise ‘the dirty truth’ about clean eating. Some of these fads that people truly believe will cure them are scientifically unfounded! There is no evidence that they can help you, we just go along with it because it sounds believable and well if it looks good in 2D why not?! We are motivated by the way we look on the outside but think less about the inside. It doesn’t matter how thin you are or how fat, what matters is how your body is being sustained. The wellness epidemic is fuelled by the ideology of being healthy, but once again what it really boils down to is vanity. I’m probably jumping on the bandwagon here, as I know I am not the only person to share in these frustrations. However, I am someone who has followed these fads and advice, not in the hope of losing weight but to cure my suffering. I’m not naive enough to think that eating certain foods will magically cure me. It is an amalgamation of a sensible diet, exercise, and lifestyle. It has been hard to relinquish the mentality I had over what I ate and anxiety over what it could do to my insides. I became consumed by it because it was the only thing I could do to help myself when nothing else seemed to be working. 

I think it is important to find a balance between too much and just enough information, and also the right and the wrong kind. I’ve got a stack of cookbooks in the kitchen from the likes of Deliciously Ella and the Hemsley Twins, beautiful domestic goddesses that have purified their insides through eating chia seeds and more chia seeds. I fell for it, hook line and sinker, but why wasn’t I jumping around and feeling ecstatic from eating buckwheat pancakes? Well firstly because they look better than they taste and secondly I wasn’t fully aware of what my body actually needed to recover. But like I said some of their recipes have gone down a treat, mainly the sweet potato brownies. What I did learn from them is that food tastes better and is more beneficial when it is natural. Using ingredients that are fresh, unprocessed and knowing where they have come from. Having an appreciation for food, an understanding and acknowledgment of what you are putting in your mouth. You don’t have to eat something because everyone else is, eat for you because it feeds not only your body but also your soul. I mean if you enjoy chia seeds, go ahead. I really like green juices, or Shrek snot as my Mum likes to call them, but only because I get a good dose of vitamins and minerals. Or maybe I just like the taste of grass and leaves.

Well to make sure I’m actually getting all the nutrients my little cells need, I went to see a Nutritionist, to see what he had to say. I had kept a 4 day food diary beforehand, and staying true to my Virgo self when presented with the opportunity of a list, it was very precise. Much to the delight of my friend Sian, as she howled as she read the ingredients of my teabag aloud, it did say detailed after all! To my relief he told me I had a very good diet and should just eat more protein with every meal. As protein is an essential fuel source and nutrient that helps to build muscle tissue, I don't think I’ll be hitting the shakes anytime soon though. He didn’t really tell me much more than I didn’t already know as you may have realised I have taken quite an interest in nutrition, but I did learn a few things about what nutrients the body needs and how it uses them for different processes and systems. 

I have been brought up on the Mediterranean or Cretan diet and culture of food, which is considered to be the most healthy and balanced way of eating out there. Other than that I don’t follow any special diet, apart from cutting down on sugar, carbs and processed food. I’m also off the sauce, more so because it doesn't do me any favours and Prosecco with the girls isn’t my cup of tea. Furthermore, I certainly don’t listen to anymore so-called ‘wellness’ advice. I’ve never been one for sugary or shite food anyway, and I really really love veg, so eating a nutritious, fresh and balanced diet is an easy ride. This way of thinking and living has actually had an effect on not just my life but also the rest of the household. Both my parents have lost weight and their health has improved drastically. I have always maintained a steady weight, I think my other biggest fear was putting on weight due to not being able to be as active as I was. Extra weight would put more stress on my joints and therefore not making the pain any better. So another reason for me to control what I ate. I will continue to love eating good fresh food, being mindful of it but not thinking too hard about it. Being aware and having respect for what you feed yourself will have a profound effect. You are what you eat after all.

http://www.bbc.co.uk/programmes/p04pwrgf (Dr Giles Yeo Documentary)

[mutantinthefamily]

[mutantinthefamily]

24.2.17 - mind body soul

I haven’t written anything in a while and there are a few reasons for that. First being that there has been so much inside my head I couldn’t find the words to say, I have been on the dangerous edge of getting lost within the ocean of thoughts swilling around in there and also finding the ones that make the most sense. Second of all, it has been pretty full on with receiving treatment from Tomer, Jonathan and other various places. And lastly I’ve been away in Cornwall, which is a pretty good reason right?!

So where to start, well I’ve got my insoles now and let me tell you how truly remarkable they are! I can’t believe something so mundane can make such a difference to the body. As soon as I put them in, it’s as if all the nuts and bolts have been tightened up, I don’t feel like such a rickety puppet on strings. This week it has been a month since I got them and I had my first follow up appointment with Jonathan and he is very pleased with my progress, my muscles seem to be remembering where they should be even when I don’t have my insoles in, plus I am standing a lot taller, much to the disdain of my Mum. Who knows where the long limbs have come from as I seem to tower over everyone in my family and I look too much like my Dad to blame the postman.

I have been seeing Tomer every week now, slowly but surely I seem to be responding well to treatment. Each time building up the manipulation of soft tissue and nerve endings, to get them alive and kicking once again. We have to tread carefully as everything is a bit sensitive and can react quite aggressively if provoked a bit too much. I’m not just relying on once a week sessions to get me through, it takes two to tango after all, so every day I am working on getting to know my body and finally being able to help myself in a way that actually has results! Now that my body seems to be getting itself out of limbo, I can start strengthening my muscles in the right position. I haven’t been to pilates for a while as I think it might have been doing more harm than good, but this week I got back in the pool. I am a water baby, a child of the tides, so I feel a natural affinity to the water, the perfect place for my body to strengthen and heal. I will be slowly building this up, I have no idea how long it will take for me to get where I need to be, but so far so good.The biggest battle at the moment is feeling weak and fatigued, I definitely have a lot more energy than I did a few months ago but sometimes it likes to trip me up. I think that is partly my own fault, that old habit of doing too much when I feel good. But I’ve been doing a lot better, I think partly because I’ve been allowing myself to just rest, heal and not worry so much about the unimportant things.

So that’s the body dealt with and now for the mind. Up until recently I have felt that my imagination has been a prisoner of war, trapped by all the fog and pain. It feels like the fog is slowly lifting and my creativity is beginning to seep out, making its escape. It’s funny how life works out, you are adamant it’s going one way then it takes a sharp left. I feel a bit like I’ve been swimming until I can’t see land, floating adrift in the middle of nowhere. But I think that is probably normal for any 25 year old, I think we all just pretend we’ve got it all together. A constant battle trying to prove that we exist, but is it the honest truth or a well constructed lie? A friend of mine who suffers similarly with pain, has also brought this to light. She went on to describe her fear that social media has bred a collective dishonesty, that in turn perpetuates our anxiety. A platform intended for communication and connection has turned into a dangerous method of attack and self-degradation. Everyone has their own battles to fight, even if their virtual self is living the idyllic life. Who wants to see me crippled in pain or with bags under my eyes so big I could carry the shopping home? I fear it will make me less desirable if my weaknesses are realised. We are not alone in feeling these frustrations, and we are not the first to voice them. But when life suddenly slams on the brakes, you are forced to see everyone else speeding past you. Social media will evolve, it could get better or worse, it will always be a blessing and a curse. I guess it is up to us to experience it more positively or don’t use it at all. What happened to the glory days of myspace, pc4pc anyone? Ultimately it doesn’t really matter what anyone else is doing, you need to do whatever is right for you.

Think for yourself, be yourself, to stay true to yourself.

So over the past 5 or 6 months I have made the conscious decision to take time out to focus on healing my body, this might sound wonderful, I mean don’t get me wrong it’s great not having to do very much. But at the same time it drives me up the wall; boredom, frustration, loneliness, envy, guilt and the thought that life is passing me by. However, I have realised that this is what I needed, and it has been a golden opportunity that not many people get the chance to receive. I have been able to rest and rehabilitate, and experience some self-discovery, which in actual fact is hugely important. I haven’t been doing nothing, I’ve had the chance to really think about life and what I want from it. Furthermore I have been given the time to be creative again, re-awaken my imagination and focus all the negativity into something positive.

I have also realised a lot of aspects about myself, some I liked and some not so much. It’s frightening when you are confronted with yourself, a self that has been battered and left feeling pretty vulnerable and raw. I always felt I was a confident person, but I’ve had the wind knocked out of my sails and feel that my self-confidence has been a casualty of that. Sometimes I feel like I’m drowning, overwhelmed with my inabilities, new found insecurities and anxiety. A feeling I haven’t really experienced before. I suppose it’s a bit like having your skin peeled off and then your raw flesh bared to the elements. Even though I have been to hell and back, I am thankful that it has happened to me, especially when I have the benefits of time and youth on my side. Pain can be a fantastic catalyst for change. I firmly believe that the Universe gives you signs to follow, but it is up to you to listen to them. 

I’m tired and I’ve been tired for a long time, too young to feel that tired and I don’t have the energy for bullshit anymore. I am coming to realise what future I want, what I need to do to get there and the kinds of people I want in it. I crave a slower life, a life where quality is appreciated more than quantity. Peace and pleasure in living. Having adventures, grand or small, laughter, fun and doing whatever the hell you want. I’m not the only that shares this dream, but it terrifies me to think of staying here and following the formula. I see my friends getting married, buying houses, planning parenthood and I feel my palms start to sweat. I am happy for them and I know that it’s life, we were put here to pro-create after all, but I still feel 17 and want to experience and see everything before my eyes close forever. I feel like I’ve been given a second chance in a way, a future of possibilities has opened up again, I’m chomping at the bit, I am impatient to press play, I want to find the eternity in each and every moment.

Dorian Paskowitz once said, “health is more than mere absence of disease, it’s the presence of a superior state of well being, a pizzazz, a vitality that has to be worked for each and every day of your life. It’s got to be gotten through diet and exercise and rest and recreation and attitudes of mind working all together every day of your life.” So I am taking the time to heal my body and my mind, strengthening them so they can withstand the waves of life, and the ocean itself, because my first goal is to get up on a surfboard. I know that as my body strengthens, my confidence will flourish again and I won’t feel so inept anymore. I need to be whole again, especially if I want to succeed in my goals, be present in life, forge relationships and be with someone heart, body and soul. I’ve got a few plans in the making, I am determined and I’ll get there soon, just bear with me.

B.

[mutantinthefamily]

P.S Note to self

‘Who taught you to be small? Who taught you that those cracks were flaws? Taught you that your light couldn’t shine through the fractures and scars? Who told you to accept what you were given and did not want? Told you that any love was better than searching for the one only meant for you? The one that always been inside yourself.

Do not listen to them.

Their mouths are full of turpentine and cyanide. They will strip all that is gold from your feathered limbs and leave you unraveled - all pock marked, pink skinned, and alabaster boned. 

You were not made to be grounded. You need the crisp air, a belly full of laughter, a heart carrying so much love you feel the seams stretching. 

Mostly you need to realise that one by one the population has swelled to billions, but even still you were hand-selected, all beauty and flaw, to never be replicated.

You are the finest art to have ever been created.’

Tyler Kent White 

[mutantinthefamily]

24.01.17 - twisted sister

Continuing on from a couple of posts back (twisting my melon man to be precise) I was telling you about how I had just discovered that my skeleton has been twisting all over the place. Well since then I have had a few more visits to see Dr Jonathan Stanley and also Dr Tomer Gilboa. It’s all become a bit mind bending and I am still trying to get my head round it all. So writing this will be good for me to get it all down and try make sense of it all. The investigation continues and I am still undergoing assessments to determine what is actually going on inside there. It has pretty much blown everything I thought was going on out of the water, a torpedo has come bombing through! 

What I have learnt so far is that my skeleton has been out of line for a very long time, and all the muscles, tendons etc. that cloak the skeleton haven’t been working the way they should because of that. Causing them to become very tight, tender and sore. My bendiness doesn’t really help the situation either. I also have one leg half a centimetre longer than the other, so I have been turning out on my right ankle to over-compensate, which in turn affects my knees. That old song from childhood comes in handy:

The toe bone's connected to the foot bone, The foot bone's connected to the ankle bone, The ankle bone's connected to the leg bone, Now shake dem skeleton bones!

Once my hips have had a bit of stretch I gain another cm, well a centimetre and a half on the left. So if you feel a bit on the short side, I highly recommend giving your hips a twist. They also found that the pain dissipates when I stand on the outer edge of my feet. So there I was thinking am I going to have to walk around like that all the time then, will I need to wear special shoes or even worse, trainers!? Well no, I had everything measured and my feet casted in plaster, so that I can have my very own pair of prescription insoles, that will slip nicely inside most of my Dr Martens. So hopefully these insoles will help to iron me out and keep me in correct alignment. The one thing I have missed the most, is being able to just dance all night, so that is the first thing I am going to do when my knees can hold me up. 

So that’s my feet, now how about the rest of me I can hear you thinking. Well I have been seeing Tomer for that, pretty much every week so far. Considering the natural life expectancy of humans is 40, I am old and feeling it. Tomer has been slowly investigating every inch of my skeleton and how my brain communicates with my muscles, joints and everything in between. What he doesn’t know I couldn’t tell you. 

In the last week he has been examining my skull, and has discovered that the left side is what he described as ‘boggy’, the bones that make up my skull are stuck on that side. He also examined my facial features and determined that everything is slightly out of line, so that’s my modelling career down the drain. But nobody is perfectly symmetrical anyway. Now I get why my eyeliner looks a bit wonky on one side! It also explained headaches, jaw pain, the feeling of having a blocked nose and also why I had to have 4 teeth taken out because of over-crowding. I have a high and narrow palette in my mouth because the plates in my skull have grown closer together. All of this could have been caused when I was still inside Mum’s tum or on the way out. If one plate was knocked then it has a domino effect on the rest of them, or I could have been twisted in the womb and developed a bit wonky, which could have been caused by my Mum doing a lot of walking. Who knows, it’s all a bit mind boggling. As he does a bit more digging I will be able to explain myself a bit better. 

What I find fascinating is that it could mean the right side of my brain is more developed, which makes sense as it is the side that relates to imagination, creativity and daydreaming. That’s me all over. And well Maths, is not my forte. So I am most definitely a right brainer. I didn’t even have to do a quiz on buzzfeed to realise it!

All this happening in my skull could be causing all of the problems further down, because as you will know it is all connected. I just never realised to what extent! Tomer loosened off my skull plates, which sounds utterly ridiculous but it felt nice. I could feel the areas which were ‘boggy’ and didn’t move, especially in comparison to the right side. My ear didn’t even stretch as far! He simulated a headache, which wasn’t so nice, but it enabled him to locate the trigger points in my neck and shoulders. Before the pro head massage, he tested the strength in my arms, right arm had all the power and the left was pathetic to say the least. After the pro head massage, he did the same test and I had become pop-eye! All my strength had been released! This is something that I also experienced in my legs once they had been put into correct alignment. I have the strength, it is just hidden away in there. 

All of this also explains the fatigue, my last post about CFS might be on the side line now. As you can imagine walking around on twisted bones is bloody exhausting, especially if my muscles are working ineffectively! It will be a relief if the fatigue buggers off, something else I won’t have to live with. But we shall see how it goes, fingers crossed though! 

I don’t really know what’s going to happen, but I have a good feeling about it all. It’s just a relief to have some help and through people who actually know what they're talking about! I have never felt completely comfortable in my skin, like my bones don’t quite fit, awkward and unnatural. Now it makes sense. 

I think it is going to take a while to get to the bottom of everything but I am on my way, finally I have plausible explanations for how I feel. It’s as if my life has been put on hold for quite a while, it has driven me mad not being able to do all of the things I want to do. Now, I am even more impatient to press play, because there is the prospect of being back to some normality. I had thought that I had accepted my lot, come to terms with the thought of living my life a certain way. Not being restricted to what I would be able to do, just limited. But really I don't think I had at all, I have been really struggling with it, maybe pretending to myself that some things are just meant to be. 

Now I have a slight feeling of disbelief, is this too good to be true, waiting for the disappointment. Maybe I am pinning too many hopes on it all, but just maybe that is what I need, hope. I can work towards something, and I have begun to really understand my body and what it is telling me. It is a wondrous thing and it continues to amaze me, even if it needs a bit of work and tlc. 

Stay tuned....

B.

[mutantinthefamily]

top tip: purple porridge

If the beige blandness of Porridge puts you off eating it then this is definitely one for you! The blueberries give it a nice flavour and a colour to brighten your morning. 

Ingredients

for one serving

2 heaped tablespoons of regular Oats 

About 125ml of your own choice of milk (I prefer Goats) the amount depends on how milky you like it. 

Handful or more of fresh or frozen blueberries 

Topping:

Anything you want really, I always go for Rasberries, Blackberries and maybe some Banana. I also sprinkle a mix of chopped nuts and seeds over the top for a bit of crunch, and a good dollop of almond butter (it just tastes so good).

Instructions: 

1. Combine the oats and milk in a saucepan over a medium heat, simmer for a couple of minutes till it starts to bubble. 

2. Add the blueberries. 

3. The blueberries will start to pop whilst the porridge cooks, oozing the purple colour into the mixture, give it a stir. I quite like popping the softening blueberries with a spoon, you get the satisfactory feeling similar to popping bubble wrap. 

4. Add a bit more milk depending on what consistency you prefer, give it another stir.

5. Serve in a bowl of your choice and top to your hearts content. 

You know what they say, breakfast is the most important meal of the day. This will fill you up till lunchtime, is full of goodness and tasty too. 

B. 

[mutantinthefamily]

oh so tired

I previously mentioned Chronic Fatigue Syndrome, this is something I’ve had for a while but only recently has it become something more. I think that maybe because I have become more aware of it and also begun to receive more support and information. 

To be scientific, CFS causes persistent fatigue (exhaustion) that doesn’t go away with sleep or rest. CFS is also known as ME, which stands for myalgic encephalomyelitis (get your gob round that mouthful). It can be triggered by a viral or bacterial infection, problems with the immune system, an imbalance of hormones, psychiatric problems, such as stress and emotional trauma. 

I put my bout down to the joint pain and emotional stress. As really it’s obvious they all come hand in hand, feeding each other in a never ending perpetual cycle of misery. 

I first went to my GP complaining of fatigue about 4 or 5 years ago, and their response was for me to fill out a depression questionnaire on the computer. That didn’t go down well at all, because of course the answer is to stick you on anti-depressants and hope for the best. A nation popping pills to feel better, when really depression isn’t always the problem, it is just a side effect. Needless to say I didn’t pick up the prescription, I went for a fortnight in the Costa Del Sol instead. A dose of Vitamin D and Sea went down a treat, but it doesn’t last for long, especially when you arrive home to rain, but that’s a burden to bear when you live in God’s Own County. 

So last fast forward up to now, the pain and fatigue were getting progressively worse. So it was back to the docs to see if they could come up with something else, after a few blood tests to rule out my thyroid etc, I was referred to the Chronic Fatigue Clinic at Seacroft Hospital. I had an assessment with Carole Clegg, Occupational Therapist, and have been seeing her every month ever since. It has been a huge relief to finally have someone to talk to that has an understanding and can reassure me that I am doing all the right things to manage the condition. It has also been a help being able to talk to someone outside of family and friends. (just so I can talk about them all, right!) 

At the clinic you get a personalised treatment plan so this might include a physio, dietician and also CBT (cognitive behavioural therapy). So far I have just been seeing my therapist, I feel so American. Dealing with it through CBT, as I already have the diet in the bag and well I don’t want to see yet another physio. 

Through completing daily activity sheets, I was able to recognise where I was using different levels of energy. This helped me reorganise what I was doing in a day and highlighted activities that I probably didn’t need to do at all, so saving myself some energy for more important things. A lot of people talk about the ‘Spoons’ theory. The spoon theory is a metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished. No I don’t have the cutlery drawer in my pocket but you get the picture. 

I don’t think I am a worst case scenario in terms of Chronic Fatigue as I have actually made progress very quickly, it is different for everyone, you just have to give yourself some time, some slack and know that you’ll get there in the end. I think I moved through the acceptance phase quicker because I had already had to do that with the hyper mobility. It might take someone else the whole treatment plan to deal with their acceptance. I think that is probably the hardest thing of it all. I was so hard on myself at first, but you know what that isn’t going to help change anything. Give yourself a break and look after your body, it can do wonderful things if you give it the chance and strength. 

It isn’t just physical activities that use up a whole lot of energy but also mental as well. So I decided to stop giving a fuck about things that weren’t important, things I actually didn’t like or want to do and also vampire people who sucked the energy out of me. Nobody wants vacuums, only radiators. Stress was and is the biggest factor that affects me, so the logical answer is don’t stress. Obviously I haven’t turned into a zen master that goes around smiling ALL of the time, I hate that. I just decided to be a bit more selfish so I could be selfless. If that makes sense, by not doing things I didn’t want to do, I could be more invested in the things that make me happy and in turn be a better person to be around. This is still a work in progress as you can imagine it’s not an easy thing to do in one go what with everything else. 

I am on 3 out of 10 treatment sessions, so a way to go yet, but already I am feeling better. At first I was totally devoted to my wellness, reading all these self-help books about happiness blah blah, watching everything I did and ruminating over everything in my life. But that did not help one little bit, so I stopped reading those books and stuck to fantasy stories, nothing like living out of reality. It’s been better being aware but not obsessive, I can take care of myself without having to think so hard about it, letting it happen naturally. 

I even went to an ‘event’ at the CFS Clinic, this is something I never do, as it is usually full of pity parties, apologies but there is no use feeling sorry for yourself because it won’t change anything. The only person who can actually help you, is you! Anyway I reluctantly went along, and was pleasantly surprised, I mean there were a few pity parties, but the most intriguing part of it all was listening to the guest speakers. One was a recovering patient and the other was the husband of a patient. It made me feel like I wasn’t alone and gave me an uplifting sense of hope. Getting support and speaking to others that understand is hugely important. But that doesn’t mean I will be frequenting all these meetings on a regular basis, no way Jose. 

I have always been brought up with the mentality to get things done and quickly so you can move on to something else. Time is money afterall. In fact, I think we are all conditioned this way, rushing around our lives, then in a blink of an eye it’s gone. I have been forced to slow down, I just can’t keep up with the demands of modern life and you know what I am glad. I can now appreciate everything so much more, taking a slower pace allows you to savour the moment. I have learnt that if something isn’t finished today, well I’ll do it later or the next day. It hasn’t just been me that has had to reassess they way they live their lives, but also my parents. They both have their own businesses and they are relied upon to keep it all ticking over and fast. We live in the instantaneous age, where if we don’t get something straight away it blows our minds! So what, just learn some patience and wait! What is so terrible about that? I think we would all be better off if we took a step back and just enjoy the small things. You never know you might actually feel less tired and happy. It’s okay to do nothing sometimes. Be warned I will probably rant on about this at a later point, no that’s a definitely. 

So to sum it up, I’m still tired and need a nap in the afternoon, but I am dealing with it a whole lot better. And I think once I get ironed out it will be break in the cycle and I will be pretty much human again. I will still take that nap though. Actually I think a house by the sea in a warm country, perhaps the Caribbean, would solve it all really. 

B. 

As everyone loves a diagram, here’s one to illustrate the perpetual cycle of misery. 

[mutantinthefamily]

top tip

for any aches, pains or tiredness (or hangover) try:

1-2 cups of Epsom or Himalayan Pink or Dead Sea or Magnesium Salts or even a blend of all of them (these also help dry skin and are detoxifying)

3-4 drops of Peppermint and Black Pepper Essential Oil

In a warm bath

Light a candle, breathe it all in and have a good long soak, not just a dunk.

The peppermint might make your skin tingle but it’s quite a nice feeling, make sure you add it when the bath is full, as any earlier it will evaporate with the steam. 

I also like to add Neals Yard Seaweed and Arnica Foam Bath for some bubbles, a treat but it really helps as well.

http://www.nealsyardremedies.com/bath-and-body/bath/foams-salts-and-oils/0917.html#cgid=%0930-off-selected-Items&start=1

Drink a glass of water before and after to keep hydrated

Massage skin with a body oil afterwards, your skin will thank you especially in winter. I’m liking Ginger and Juniper at the moment, really warms up over-tired muscles.

A bath is the one thing that really helps me when my bones ache and the cold seems to have burrowed deep inside, it is especially good just before bed to help relax and get rid of any tension.

[mutantinthefamily]

twisting my melon man

I got through Christmas without too much bother, which is a first, although I can’t say the lead up was all plain sailing. I had a couple of ‘bad’ weeks as I had a bit of pain flare up in my knees and just felt a bit under the weather. I was also on my own a lot, which never helps as I begin to ruminate about everything. Times like that always make me realise however much I like time on my own, I also really appreciate spending time with people and getting out doing things. Even if I feel johnny rotten and it wipes me out, I always feel a lot better and uplifted. Even if it is just a trip to Ikea. 

Just before Christmas I paid a visit to see a Podiatrist, Jonathan Stanley at the Valley Clinic in Ilkley, why oh why I didn’t do this before now I’ll never know. Anyway it was an eye opener to say the least! He took one look at me wobbling up and down the corridor in my Dad’s shorts and knew exactly what the problem was. Apparently the hyper mobility isn’t as severe as I was lead to believe! I am still in the club but it isn’t really the problem! Wow, well that threw a spanner in the works! Apparently my skeleton is twisted, so my pelvis goes right to left and my upper body goes left to right. I sound like the Hunchback of Notre Dame! I don’t know how they can tell these things because I think I look straight, alas no my head tilts to the left and my legs are all out of line! So no surprises I’m in agony. My Physio had picked up on these twists and turns but didn’t treat me appropriately. Jonathan asked straightaway if I had been diagnosed with ‘growing pains’ as a child, which don’t actually exist, it was all to do with this condition that I can’t remember the name of. A condition I was born with, my Mum’s insistence at the Doctors that when I was born my feet looked funny turned out to be true after all. She never did get a refund. He also asked if I went over on my ankles a lot as well, which I did. I just thought it was down to pretending to be an over-enthusiastic Muskateer and mole hills getting in the way at playtime. 

Jonathan performed a miracle after prodding the sore points, he shifted my pelvis into a ‘normal’ position, then prodded again and hey presto the soreness had reduced if not disappeared! Then he let go and it was back, in true Arnie style. By moving my pelvis he also re-aligned my shoulders to where they should be, Mum couldn’t believe her eyes! He did the same with my legs and I could see clearly how out of line they really are, no wonder my knees are in agony every time I walk, imagine standing on bones that aren’t where they should be! So all of this explains the headaches, as it also affects my neck and jaw. As well as the fatigue, cause really trying to function in this twisted melon state is exhausting! No wonder I haven’t made any progress with exercise to strengthen my muscles, as they aren’t where they should be either! The messages my brain is sending to my muscle groups just aren’t coming through, earth to glute, hello is anyone down there! As soon as I was re-aligned my strength shot up, I felt like Pop Eye, I mean I should be really with all the spinach I consume! 

Anyway Jonathan used the analogy of how a dress will hang on a straight wooden hanger without any creases, whereas if you put it on a wonky wire hanger the folds starts to appear. I am the wonky wire hanger. Not the worst description I’ve ever had but I suppose it explains itself. It all sounds pretty terrible but actually this is the best news I’ve had in a while as it means I can be fixed!!! Jonathan explained that he had been treating this condition for over 20 years and also actually knew about Hypermobility, which made a change. My faith has been restored! 

I will be going for a Chiropod appointment at the Lawrence Clinic in Pudsey, so that’s a mixture of Podiatry and Chiropractic. Where I will be seen by Jonathan again and also his side-kick Dr Tomer Gilboa. So this is To Be Continued........ 

This news was probably the best Christmas gift as it has given me a light at the end of the tunnel. There is a remedy and I can actually begin to build myself up again properly without thinking so much about the what if’s and future obstacles I thought I would have to face. I was struggling to accept that this was my lot and trying to think about how I would have to change my goals in life. But now I am hoping that I will get ironed out and that my health won’t have such an impact on everything I want to do. I will be on that snowboard this time next year!! 

B. 

[mutantinthefamily]

slack

I was first diagnosed with hypermobility when I was around 14 years old, well I say that, the Rheumatologist told me I had slack joints and probably should have taken up gymnastics, ballet or even joined the circus. But that didn’t explain why my right shoulder felt like nails were being driven into my bones every single day. The only up-side was that I got the chance to experience an MRI scanner and also see an x-ray of my shoulder, plus I scored a day off school. The injury was put down to trauma received in a minor car accident, a plausible explanation perhaps. So I went away thinking that I was ‘slack’, a term my Mum found incessantly hilarious, but something we just accepted and thought that was that. 

However, at 14 it didn’t seem normal to be popping co-codamol every other day. It certainly made me feel nice even if it did nothing to stop the agony. Anyway after a few years of enduring this, my left shoulder recovered through vigorous physio and that seemed to be the end of that, or so I thought.  

As I approached 18 I hadn’t had much gip from my shoulder or from any other joints for that matter. I took up a ‘Bootcamp’ exercise programme, I know what you’re thinking, what on earth possessed me! Well it seemed like a good idea at the time, a good way to get fit! Well I think it was the beginning of the end for me, in terms of what it actually did to my body. Surely it isn't normal to be hobbling for days after, well doing a 60 second squat might not help, but still! I started experiencing wrist pain and the shoulder started playing up again. Alas I persevered and stuck with it, convinced it must be doing me some good. 

In 2012 I decided I wanted to be in a scooter club, I had done a photography project about local clubs and became enthralled with the idea that a scooter would be an excellent way to get around. So I went for my CBT, during which I realised I wasn't as fearless as I was when I had previously done it at 16. Especially after driving within a metal box for about 4 years. Anyway when lifting the scooter of its stand I suddenly became aware that my left shoulder definitely wasn't where it was supposed to be. I initially shrugged it off and went onto failing the test spectacularly, my dream of a scooter gang didn't last long. I came home and after the adrenaline had worn off began to experience what I can only describe as being stabbed repeatedly in the shoulder. Not this old chestnut again! And in the other shoulder no less. The pain worsened and after an ultrasound scan (yes that was all!!!) It was found that my shoulder pain was caused by subluxation, a partial dislocation,, apologies if you're squeamish. So it doesn’t fully dislocate, just likes to give it a half arsed attempt. So I ended up back in physiotherapy, hoping it would recover just as well as my other one did! 

I still continued with my exercise, now taking up Pilates, which is actually very good for us elasticated ones. However, now I realise that my flexibility isn’t something to be pushed it is meant to be controlled, and that was the mistake I made in the earlier classes I went to. More on Pilates later. I had abandoned Bootcamp and began a programme with a personal trainer, thinking that a more focused workout would be beneficial. It involved a lot of boxing and jumping up and down. As much as I loved packing a punch it didn’t do much for my joints. 

At the same time as all of this I was also studying Photography full time at Leeds College Of Art and also working as a sales assistant at Dr Martens. So I could definitely have joined the circus as a class act in spinning plates. It was all very high energy and physical (try lifting 8 boxes of Dr Martens boots), so inevitably my body surrendered and I crashed one Christmas, much to the disdain of my Manager at DM’s. I got through it on a cocktail of painkillers and tears. In fact, I couldn’t tell you a single a thing of what happened that winter as I felt blindsided by pain and depression for most of it. On top of it all I was feeling guilty for not being able to do my job properly, which really in the grand scheme of things wasn’t important at all. I was also hugely aware of how my parents must feel, they were helpless and worried and there was nothing I could do. 

I came out the other end, just. And carried on following a pattern of bad flare-ups and periods of ‘wellness’. I continued to struggle with my shoulder being the main issue, but I also struggled with hyper-extension in my wrists and also pain in my lower back. Now we realised this wasn’t just a case of slack joints and proceeded a very long and frustrating battle of trying to get some answers and help. 

This brings me up to the last 3 years, which honestly haven’t been the best, as I think I was just bumbling along and getting by with quick fixes after a bad flare up. However, I think it was all unavoidable as I was so unaware of what I actually needed to do. This was mainly due to the lack of research and resources for Hypermobility. I continued with physio and doing exercises I thought would be strengthening my body, but I was caught up in a viscous circle. I was in pain so therefore didn’t exercise, without the exercise my muscles were becoming de-conditioned and causing me pain. On top of all of that I fatigue a lot quicker than normal people and use up so much energy just keeping my body in the same position. So the fatigue just perpetuates everything else. Sounds like a nightmare right?! Right! So that’s what I’m trying to do at the minute, break this bloody circle, which isn't so easy so bear with me. 

In 2014 I went down to London to visit the Hypermobility Clinic, what a trip that was. Anyway, to cut a long story short, I was officially diagnosed with Hypermobility by a Professor who I think must have been brought out of a forgotten cleaning cupboard. I was told I was like an owl, due to the flexibility in my neck and that really there is nothing to be done. Nonetheless, it did give me an explanations for various injuries I sustained as a child. I mean I did sprain my ankle an awful lot, I just put that down to mole hills and bombing up and down the field at playtime. So after been prodded and twisted 360 degrees I hobbled home safe in the knowledge that I could always go to physio down South, because that would really be a good idea. 

Anyway after that you’ll be glad to know I left Dr Martens, a job which I enjoyed and met some of the greatest friends, however I think it was probably the fuel on the fire. I will tell you more about all of that at a later point.

In January of this year after a trip to Paris I came home with a souvenir, no before you say it wasn’t a miniature Eiffel Tower or a bottle of Chanel No.5. It was a dislocated knee cap, disappointing I know!! My physio put it down to my thigh muscles weakening, causing my thigh bone to shift across and press down on the meniscus (cartilage in the knee joint) Well something like that has been happening.After spending most of the summer abroad, in the sunshine and swimming, I felt great, write me a prescription for this medicine as it works! Then I was back to reality and the world sped up again, tripping me over at the same time. 

After trips to the GP, a cocktail of different painkillers and blood tests, the fatigue became a bigger problem. I already had a brief diagnosis of CFS but hadn’t really had much more information or support. So eventually I was referred to the Chronic Fatigue Clinic, and properly diagnosed. Hallelujah Hallelujah When Shaun William Ryder....... Apologies, I digress. So now I am visiting the clinic every month finally getting the support I needed all along. I am also taking a slower pace and building my muscles back up again with a new exercise programme and physio. Still struggling with the old knee, shoulder not so much thankfully! But never say never, I just have to be careful, maybe bubble wrap is the answer. Its frustrating not having the body strength to match my mind asI have always been one to just get on with it, but I've taken a walloping over the years and I’m finally holding up the white flag.

So this leads me up to this point in time. A point at which I’ve decided that enough is enough and I can’t live my life this way anymore. A point at which I can be brutally honest with myself and accept that my life isn’t going to go the way I always imagined it to. I will just have to make some adjustments and come up with the some new aspirations. 

So far writing all of this down has actually been quite cathartic for me, I think I probably needed to get it all out. 

B.

[mutantinthefamily]

hello

So where to start, when everything seems to blur into each other, a beginning that never seems to have an end. I suppose I should begin with explaining myself a bit. I have started this blog as a way to tell my story, give others more of an understanding and I hope help those in a similar situation. And actually give me an outlet for everything that’s going on, I suppose another way to talk to myself. Especially now I’ve got a bit of time to actually take a step back and take a long hard look at everything. 

Since I was about 13 years old, I have knowingly suffered with EDS hyper mobility, for those that don’t know EDS is short for Ehlers Danlos Syndrome and hypermobility means that the connective tissue in my joints is weaker and therefore allows my joints to move about more. So technically I am just incredibly over-flexible or as l like to call it, my elasta-girl power, I could have been a contortionist or even a gymnast! Alas, it was not to be, I never attended the ballet classes either. The problem is with the joints moving about, they tend to pop out of their sockets or attempt to at least, not so fun really. It sounds pretty bad, but I think myself lucky as it could actually be a lot worse. 

The second problem is that all this happens on the inside and to everyone else I look completely healthy, it is an invisible illness. It has only really had more of a gradual impact on my life in the last 6 years, seemingly getting worse. I’ve had a few earthquakes in my life and now I am really feeling the after-shocks. (WARNING: There will be a lot of analogies) 

The third problem is that it makes me really really really tired and I fatigue a lot quicker than normal. This leads me onto the other thing, I have just been diagnosed with CFS/ME, short for Chronic Fatigue Syndrome. I think you can guess what that entails, but more on that later. 

As you can imagine all of this doesn’t make for a happy girl. I have good and bad days, I just try and make the most of those that are good and know that the bad ones won't last forever even though it might feel like they do. 

I have recently reached a bit of a conundrum in my life and have realised that I will never be cured but I can make myself a ‘better’ human being in all aspects of the word. I am the mutant in the family and I know I will probably never lead a ‘normal’ life, however I would never want that anyway. As a born non-conformist I feel safe in the knowledge that my path is my own and doesn’t have to be like anyone else’s. I am able to do most things, in fact that is what drives me on. However I might just have to do it a bit slower or in a different way. The quick fixes just won’t suffice anymore, so I’m having to start from scratch and develop a new programme of recovery. Bringing all of the balloon strings back into one hand again. 

At the minute I am attempting to re-tune the way I think and approach everything day to day, creating a way of life that will serve me for the long term. I won't lie it is really hard and I am only at the start, but I have never felt more motivated and optimistic, even though the future is more unclear than ever. I think this is due to not have any pressures or expectations of myself. I am learning to pace myself, understanding that not everything has to be done to the best of my ability, saying no to others and yes to myself. Which is very difficult for a Virgo. 

Fundamentally I am just focusing on re-aligning Mind, Body and Soul, enjoying what I do have and spending time with those that have a positive affect on my life. Taking a bit of time out to just appreciate what really matters, take a slower pace and give myself a bit of TLC. La Bella Vita. 

So I will witter on about how it all came about, how my life has changed and is still changing and what I have come up against so far. Just so its not all about being tired and stretchy, I will also talk about things that I am interested in, creative stuff and also the things that help me manage it all. And yes I will bang on about being mindful, because you know what, it actually really works! I think a bit more consideration and respect would do everyone the world of good. I can usually function pretty normally, but sometimes I feel like my bones can’t even hold me up.  I am not useless or incapable, I am just different and bit more delicate. 

I have only just starting talking about it all and being honest with how I am. And as I am quite a private person and don’t really like to publish my life, I feel a bit anxious about this, however I think it will be a good way to let it out and I hope open a few more eyes. 

So come with me on a journey through time and space as I navigate my way through the life of a mutant.

B.