After not being able to sleep for quite a while, I finally managed to knock myself out last night with some hash and 32% flower. My brain’s been doing circuits for the past few days, thinking about things I could have perhaps have done better given the chance, but that's easy to say retrospectively.
I worry pushing most people away currently isn't in my best interests, given already struggling with the holidays, really bad suicidal thoughts and self harming and it just being me and the doggo. I’ve been struggling to get him out the past two days where I had a flare up of muscle tightness and stiffness which was causing some of the worst pain I've ever had, not sleeping definitely didn't help and nor did forgetting/missing tramadol doses.
I need to keep somewhat of a routine for my meds as opposed for using them when it's too late, but when I'm feeling functional it slips my mind I guess and then things slide from manageable to unmanageable pretty fucking fast.
I wonder a lot why having this condition has been treated like a punishment, from abusive health care workers to lack of social help from the council. I'm pretty sure 70+ safeguarding referrals with no help instated has got to be a record. I've considered taking it to the social care ombudsman, but I feel too deflated at the moment.
The hostility I've had for becoming more and more ill and needing help is nothing I can get my head around, and whilst it sounds like I've complained about a fair few different organisations, that is because they haven't acted in my best interests and passed the responsibility from place to place.
I guess the hidden problems that come with functional illness such as MPS, FND & PTSD is that when you look or feel fine, people assume that when you’re at your worst it's nothing more than false. I met someone on the train on the way to London last week who had a connective tissue disorder and their body nonstop crunches like mine, and we had really similar day-to-day impairments, which gave me more reason to think it is indeed a connective tissue or something similar I have alongside the MPS.
I get what feels like pressure moving throughout my muscular system too, from my legs to arms, and only cannabis seems to be settling that and the irritation that comes with it. I've been offered a daily pickup for a month straight by my doctor, then switching over to a normal prescription, however I'm not sure I can get myself reliably there every day, and if missing one day equates to the whole thing restarting, that's really not something I'm willing to put myself through.
It amazes me that my doctor said to just take my blackmarket tramadol to London because three weeks later, she still hadn't initiated the daily pickup, which seemed to have taken all of but five minutes when she did write it up. "Lots of people carry tramadol, you'll be fine." Yeah, I'm sure lots of people also haven't had their legally prescribed meds taken by police either. You would have thought there would be some understanding considering she's the one who diagnosed me with PTSD.
Hoping to be able to get out of bed tomorrow but I'm not putting money on it. I think the recent ruptures I've had with relationships are impacting me more than I can cope with. As long as Marleys got everything he needs I guess there's really nothing I can do about it.
I've tried to fix things in places with people, but the overwhelming theme with most people is I take on a lot of things I find insulting just to keep relationships going as I fear speaking out or people will leave. Then I end up having somewhat of an outburst, due to the things that have compiled over time, and the other person ends up withdrawing from an overreaction to the situation, which is somewhat justified I guess. And I end up feeling like one little outburst after all the hurt I’ve taken on board and that person just gets up and leaves. Then it just feels like punishment, but I guess that's what I deserve, who fucking knows.
I can't say this in terms of family, as I've bent over backwards with them just to prove that whatever I do they'll always have hate for me. But in relation to pretty much everyone else, this seems to be an overwhelming theme sadly. And if I had to take a guess, maybe some of it comes from neurodivergent tendencies, and the other PTSD-like stuff for worrying about people leaving and taking anything hurtful on board just to prevent that.
I find that cannabis helps with most of these issues, but my relationship with it is back and forth. Not because it doesn't help, but if I use as much as I want (or rather need) I'd be looking at using 160-200gs a month. I take breaks, limit myself, which brings that number right down, but gives me a worse quality of life. Tramadol helps somewhat with mood, but nothing compares to cannabis, particularly medical, since we now get such high THC concentrated products. I've been waiting for the rosin to come into stock for like 3 weeks, and that's had a big impact on me, I know it. Hash is the closest I've found combined with flower that helps take the edge off the mountain of symptoms I'm dealing with daily.
I know a lot of the PTSD-related symptoms are directly related to living somewhere where I don't feel safe or even safe to call medical services should I need to. After having heart arrhythmias and a pneumothorax with subcutaneous emphysema (that one definitely took me through a loop) you would want to feel safe calling someone if needed.
Getting given two shots of adrenaline in the ambulance because they didn't know what the fuck they were doing when I couldn't breathe, being forced to have a nebuliser whilst I had a hole in my lung they didn't know about, and then being left in a room whilst my neck became like bubble wrap because no one knew I had a hole in my lung… yeah, not great.
So I've decided to put in for a transfer out of Bristol and hopefully that won't take too long, given I have nice accommodation where I currently am.