#it's been a very stressful and expensive week and i'm just. very tired. and anxious. and depressed.

[genericpuff]

emergency vet trip: $700

me: "oof okay that's a lot but we can manage from our savings still"

catalytic converter suddenly got stolen: $600-$1200 (tbd) "ahaha okay that's scary but. maybe i can put out an emergency commission call or smthing???"

pink bisexual chair:

me: "i will work tirelessly to purchase this quality item, take my kidneys and sell them if you must"

[aamethyst000]

April 8, 23 7:21am - going home~

I woke up an hour ago and couldn't go back to sleep. I'm feeling anxious this morning because we are flying home today! our flight won't leave until 1pm but we gotta get there to check our luggage and how many people are boarding the plane. it was pretty packed on our way down here, which I did not like. it's probably why I avoid taking the plane as often as I do and why I always prefer the trains over taking the bus. anyway, I am also excited to go home and be in my own bed~ and see my cat ♡

being in this city is so exhausting and fckn expensive! I'm so glad I don't live in this area, I prefer PG over any other city. catching one train to another, or even a cab that is nearly 50 per trip. an Uber is not that cheap either. I got so stressed that my appetite could not keep up. I'm glad no one worried over if I actually ate or not. I don't know if they'd understand that I could no physically force myself to eat a big meal like that. on top of that, lots and lots of walking from one building to another. not to mention the new additions (at least from the last time I visited here) like the pets they have now and proper blankets. they definitely did not have that the last time I was here. I'm glad that they have little companions though ♡ I am so very thankful for this opportunity to travel again ♡ me and the rest of the group will be leaving the hotel at 10am to head to the airport. I'm going to be so anxious throughout the whole thing.

8:18am - I am really hoping that I can sleep while we are on the plane today. I am actually getting sleepy again. then again, I might get too anxious while we are at the air port. the place is so bloody huge, I genuinely get a little afraid to get lost there with how big it is. I am going to double check everything in my suit case and my laptop bag before heading down into the lobby. it's gonna be a long wait, that's for damn sure. some of the students love to wait until exactly the time we said we are gonna meet. I can see why and how it is so irritating when my mum asks me for something. I can try and fix that, for my own sanity and everyone else's. now that I realize it is a really bad habit to get into.

12:04pm - we made it to the air port and through security. despite my anxiety saying other wise. we are almost home, me and the group will be boarding the plane at around 1230 and departing around 1pm.

I have been feeling drowsy since I woke up early this morning, I am also feeling cranky too, so I am hoping I can nap on the plane ride back. it looks like it is going to be a full fckn plane again. it is going to be so bloody warm then. I'm a little upset about that but all I am thinking about is home and my beedddd, along with seeing my cat again ♡ he has been such a Lammy pants since me and my little brother left home lol poor thing. I think I am just going to meet everyone down at the ferry docks when we land. I don't want to bump into the sperm donor again. if danny isn't beside me, I might just strangle him on the spot.

1:49pm - we are on the way to home now, I tried to take a nap but I seem too anxious to go home. I had like a quick little nap before departing but that was about it. now I am just listening to music on Spotify and just zone right out during this flight. the sun is blindingly bright. that's probably why I can't have a little nap.

5:00pm - we all made it on the ferry and now are on the way home! I am so excited to go home and rest, dude. I am so tired I am ready to go hermit mode for 2 weeks. just as I predicted, we had to go straight from air port to the ferry docks. my little brother did not like that, he wanted to buy more gift cards for his gaming system. he couldn't, since we didn't have enough time. supper will be made by our favorite takeout lady tonight 😋 and I get to have NORMAL coffee as soon as we get home ♡ I should've waited u til today to have a bath but I get the feeling as soon as we make it home, I will be too tired to do anything else lol so I think ill just be having supper and unpack some time tomorrow.

this trip was fun but fckn exhausting.

10:30pm - we finally made it home at 630, I am so happy! I felt myself relaxing after coming back home, our takeout also made it here half an hour later. it was so yummy~ I had a pizza sub with a side of zingers. I even had two cups of coffee~ I feel so much better after smoking a few joints as well ♡ I feel back to normal~ I am not going to bath tonight, im just gonna relax in my room and pet my cat ♡

[finsterhund]

My roommate wanted me to pay him back for food but I reminded him that for the first half of the month I was buying him food so we're basically even and he just went "oh I guess you're right" and dropped it.

Still very anxious because financially I'm on the "just barely able to cover the next chemo treatment in two weeks provided I don't spend money on literally anything" and he's already made me buy gas. My grief counselor said this is me being exploited. I'm just too tired for any sort of conflict right now to bring it up and make a deal about it. Especially since Cazza gets physically ill when my mental health plummets. But if push comes to shove I'm getting at him if I'm down to the wire.

I think I'm getting a tax return thing a few days before the appointment. But can't be certain. It'll definitely be cutting it close.

The special edition of Paper Beast finally arrived (remember that? I ordered it before I even knew about Cazza) and I want to enjoy it, take photos, but just doesn't feel right. Other than that I have one more package in transit from before the diagnosis and I feel so bad when things arrive. At least with the present my friends sent me it was a birthday thing.

I am regretting buying epsalm salt even though it helps so much with pain. It was something I put off to save money but I foolishly thought that today's dose of the dox-whatever was going to be 50 like the last dose of it but turns out it was almost 200 and I have no clue why. It's written out differently on the receipts but on my CHOP chemo guide it's apparently the same dose amount and shit. It was right after I complained about how expensive the vincristine or whatever it's called was too. Like "you think that's bad? Look how much the doxy shit costs this time lol"

Speaking of, this is all the treatments we have left until she's scheduled to go into remission.

If my math is correct (and my math is horrible so it probably isn't) Cazza should get her last chemo appointment on October 13. The original projected time was early September but she also missed several weeks due to low white blood cell count so I think other than that it's the same.

Cazza's next appointment is in two weeks and I get paid again in four weeks. She won't have another appointment (supposedly) until after I get paid next so I only have to scrimp by for two weeks if my math is correct.

With the money I have now I can cover it, but obviously that assumes I won't be buying food so obviously donations are gonna really help me out. Cazza also needs another bag of food for herself it'll be out in a week or so.

Thank you to the anonymous person who donated the cost of her food through go fund me today. Cazza's food is now secured for another month or so even if mine is still up in the air for now.

I've been stressed about Cazza's appetite pretty much through this entire process but when they weighed her today she actually gained two pounds since the last time so I guess I'm just being an overly paranoid dad and she'll eat when she wants to.

I really should be dead tired right now but I think I slept once Cazza brought back home. Also had bath with the epsalm salt which does really help.

I need to remind myself to record Cazza licking Ope (my penguin) because it's very cute and I haven't filmed her doing that yet. I also need to attempt to record her little puppy dream noises (the "upp"s)

The heat is extremely deadly right now. Might get to fucking 40 it was 34 at one point this week. I can't even handle 10 so it's horrible. Luckily I've got a medium fan to replace the three fans of mine with the motors wearing out. It really gives my room s breeze and Cazza appreciates it too. She usually is scared of moving air but loves this fan.

Once we've rested I'll be doing another charity twitch stream. Doing casual Minecraft probably. Still need to plan an Among Us stream with friends at some point.

I really want to participate in Artfight again this year but I don't think that's doable for me due to chemo stress and heat. Kinda wish it happened in the winter instead.

I'm scared that if I go to bed Cazza will lick off her bandage and she knows how to remove a cone collar now (took her a week!) so it's like "hmmm" but I have to sleep at some point.

Shout out to packages of expired Walmart cupcakes that cost a dollar by the way. Really lucked out today when I found them.

Also don't worry about iced tea. I'm covered for now. Pain meds not so much but I do have epsalm salt which honestly I think may help more considering the meds aren't prescription.

I want to do something creative soon but don't know what. Open to suggestions.

[soovaryit]

Bear with me here I'm a Tumblr noob

The most difficult part of beginning this is trying to remember where it began, because chronic pain has been deeply ingrained in my life since I can remember.  Another thing I hesitate over is the eye rolls it might already have received – when you’ve lived your life not always in the best health emotionally and physically, you become hyper aware (and anxious) of peoples impressions of you. I have tried to carefully manage these impressions all my life. But I am tired. This is in no way intended to be a sob story.  I am a hugely privileged and happy person with a life full of wonderful supportive people who astound me with their patience and love every day. What this is, is brutal honesty on a subject I have never felt able to be truly honest about. And that is living with constant pain from conditions that cannot be cured. It is a specific set of problems with no real answers and as far as I can see, something that is not addressed in the truthful way that it should be. It makes sense to me to start now, today, as I’m sitting here feeling some sort of manic no-fucks-left-to-give urge to put it all out there. I have always told myself I should write about it because reading about other people’s experiences has always given me new strength and insight made me feel less isolated. Physically, I feel the usual: aching in my back, legs, shoulder, fatigue and slight nausea but today is a good day. I have just returned from the doctor after at least an hour of reviewing medication, discussing the next invasive investigations (that have become so routine) as well as blood tests. This is because of a sudden a new symptom: a rash that looks like bleeding under the skin coupled with intense itching and dermatographism (he suggests I write my name on my skin to ‘impress my friends’ and of course I immediately try it out – I appreciate a doctor with a sense of humour). He suggests weakened capillaries, possible problems with liver function and stresses the importance of no more anti-inflammatory tablets and no more alcohol if I want to limit the already sky high risk of bleeding in my gut. In front of him are my medical history and list of medications and he almost laughs as he tells me that it has got to a very complicated point. Several of them interact, one that keeps my moods up and another that keeps my pain down (as much as it is ever down) and then there’s the fact that this new rashy itching ridiculousness could actually be a side effect of the SSRI’s and be worsened by the anti inflammatories that I have been taking for 18 years without so much as a days break. More medication leads to more complication, everything has a side effect and going cold turkey means days in bed wondering what the point is of ever getting out of it. At this point in the post, I’m already apprehensive of sounding overly dramatic as well as feeling guilty because I know that people suffer much worse than I do. But over the years I’ve become expert at dismissing my own pain as well as not giving myself any credit for coping with it, and that has revealed to be a very unhealthy and damaging attitude for me. Anyone with chronic pain will understand the intensity of the situation and how it becomes a part of you whether you resist it or not. Anyone who hasn’t experienced it can try their best to understand or dismiss it as an exaggeration, which is their prerogative. I grew up in a typically British culture of ‘get on with it’, ‘don’t be a malingerer’ and ‘get it sorted’.  These are all very helpful attitudes until you reach a point where emotionally and physically there is no getting it sorted. When the three main problems (endometriosis, sclerosing osteitis and anxiety/depression) are incurable, you have to adopt a significantly different approach. On a daily basis, I look fine, so I am expected to act fine and as soon as that mask starts to slip I see the people around me getting frustrated. I know they do. I can sense the irritation when I call in sick to work, again, and bail on a night out and wince in pain as soon as I get out of bed and attempt to explain to the person I’ve just been on a date with that it’s more complicated than us having a stress free, casual situationship, whether I want to or not. These feelings are not exclusive to me or my conditions, they are something that people with all kinds of mental and physical difficulties will feel but that people generally don’t want to talk about or even listen to.  The feeling that your body and mind is inherently broken means you run the risk of being involved with the wrong people, in my experience.  At my lowest point I searched for some kind of sustainable romantic connection (that I often don’t feel capable of having) in all the wrong places and at the expense of my own wellbeing. It’s all fun and #romance until the point at which I seem to shut down because I don’t feel comfortable with the burden that I am on a partner.  My last long term relationship was with someone truly kind and understanding and patient and even though it broke down for a number of reasons, the pain was a big factor. Unless you experience it, which I would never wish on anyone, it is the most difficult thing to get your head around. Long term pain, fatigue and depression affects every single aspect of life: work, leisure, socialising, friendships, relationships, sex, your personality, the way you feel about your body, your finances (people generally don’t want to employ someone who can’t get out of bed for a week every month).   There’s also the fact that long term physical problems often come with mental health problems. The two are intrinsically linked and, without fail, ignored by every medical professional I have ever seen. Endometriosis in particular is everything to do with your hormones – how to manage them, control them, stop them, start them - and so you pump your body full of medications, contraceptives, coils, herbal remedies, even alcohol just to forget it’s there for a while until that just causes more discomfort than it’s worth. I don’t have a particular point to make here other than needing understanding, and more than anything the support to tell the truth and be listened to. Chronic pain might give you the reputation of being lazy, a whinger, a hypochondriac, a party pooper and quite frankly it is boring as fuck to defend yourself against that but I am truly done. This time last year I applied for universities but felt pessimistic about what the future would be like living like this. Today I am studying a subject that gives me purpose in a city that I love. The list of things that I appreciate about my life and where I’m at is endless, and thankfully I’ve reached a point where I can truly appreciate how lucky I am. But every day is difficult, a balancing act that I often feel I’m losing. If it’s not my body it’s my mind, or both, or people around me not understanding, or explaining for the thousandth time what endometriosis and chronic pain sufferers have to deal with. Through here I will continue to write openly and honestly about handling a difficult set of circumstances. It is for anyone who might take any amount of comfort in it or just wants to be able to have a rant without judgement. I will not be telling you that cutting out wheat, dairy, caffeine, sugar and alcohol is the only option or that you should do yoga a thousand times a week or take sole responsibility for your health and wellbeing because for so long trying to perfect my lifestyle drove me insane. It is hard, an uphill battle where all you need is good people, empathy and a never ending supply of shitty tv and chocolate on those bed bound days and the knowledge that there will be better days even when it doesn’t feel like it.