today sucks

Now lockdown is easing, I’ve had two different hospital departments ring me up last week to book me in for appointments. It was quite nice to go without hospital appointments for the last few months, its been the only real upside to lockdown life.

One appointment was for the podiatrist, he said my new insoles are ready… finally! Feels like I’ve been waiting forever for these new ones. He said he can post them to me or I can come in for an appointment and I said I’d prefer an appointment as if they still aren’t right then he can write down what adjustments they need and send them off there and then, rather then having them posted to me, them not being right and having to go up for an appointment anyway. Made more sense to me to just go in for an appointment. I go there on Thursday morning, I’m really hoping these are better then the last ones as its been nearly 2 years now trying to get these insoles just right.

The second appointment was for cardiology, which I went to this morning and it was a pretty fucking shit experience for a number of reasons.

The first being the face mask, for some reason is provokes such an intense reaction. It makes me feel really angry, really agitated and really anxious. I fucking hate wearing stuff over my face and around my neck, I can’t wear a Halloween mask for the same reason, I can’t fucking stand scarfs either. So as soon as I put that mask on to enter the hospital, my mood completely changed and its not under my control. I just instantly felt on edge and really emotionally dysregulated, I just wanted to take that mask off an leave.

Then I was fitted with a blood pressure monitor which is completely different from the one I was fitted with at the doctors surgery, which stressed me out even more. This one I have on now for 24 hours is uncomfortable, I have the monitor looped around my belt and the wire is all bunched up around my back and isn’t sat flat across my shoulder, its extremely hard to ignore the fact I’m wearing it and I fucking hate it! For bed time I have a softer belt to wear but if possible I’m not going to wear it as a belt, if its long enough I’m going to try and wear it over one shoulder.

The one I had from the doctors surgery a few months back was way better, the monitor itself was in a little bag with a strap, so I wore it over my shoulder which meant the wire wasn’t all bunched up around my back and sat flat around my shoulder. It was barely noticeable and it wasn’t such a stressful experience as this one is turning out to be.

I feel so fucking angry because I don’t feel comfortable and there’s nothing I can do so make myself feel less angry and uncomfortable. I just have to put up with this bullshit till 12 pm tomorrow and then have to drop the fucking thing back off which means wearing a fucking mask again!

I feel so fucking frustrated I want to smash my head in! That’s how intense I feel right now, I can’t wait for this 24 hours to be fucking done!

How I feel is beyond any self soothing skills or any other bullshit skill, I won’t feel better until I can take this fucking thing off.

Before lockdown I could cope ok with changes and sensory things, I was still effected by sudden changes or something that didn’t feel right but I was able to just deal with it and it didn’t often invoke a strong reaction, occasionally is did but not always. But now because lockdown guidelines are forever changing and things are so uncertain and my anxiety is heightened, I simply cannot deal with the smallest of changes or things that don’t feel right. It sends me into a massive internal spin and invokes such intense reactions, which makes me want to physically act out, in hurting myself. Which admittedly I have punched myself in the head, I’ve pinched myself hard, scratched myself, punched my legs. Just anything to stop the intensity of how I feel, the only things I’ve not resorted to yet is cutting myself. Mainly because I’ve not cut for 2 years and 6 months but also I don’t think I’d be able to control myself and I don’t want to have to deal with going to hospital for stitches and being questioned by people.

I’ve been thinking a lot about the idea of maybe being on the autism spectrum because of my sensory issues, the fact I struggle to deal with change and find it difficult to make friends, I don’t like being touched unless I’m in a relationship with someone then its different, I don’t give very good eye contact as I find it really uncomfortable and social situations make me anxious. I also have stuff that I will intensely be interested in, collect etc and same with foods I will eat something for weeks/months on end until I’m sick of it. Also I have a lot of friends past and present who are on the spectrum, which makes sense as people with additional needs tend to gravitate towards each other. I may bring this up with the nurse next week when I go for my T shot and see what she suggest I do and her opinion on whether I could be on the spectrum or not.

Girls with ASD even now get missed and aren’t diagnosed as often as boys are, mainly because when the DX was written about ASD it had boys/men in mind now girls/females. Also girls are often much better at learning how to pretend and mimic their peers, boys don’t often do this and will ore often act out more aggressively so are more likely to be tested for autism, whereas for girls its not often picked up until much later in life.

I was raised as female and actually there’s a high instance of trans people who are on the spectrum, so these two things makes sense as to why maybe if I am on the spectrum it was missed earlier on in my life.

Anyway I’m so over today, I’m going to try and relax and hopefully the intensity of the mass of swirling mess inside subsides enough for me to chill and feel a bit better.

Peace out

Zak

Trying to keep it together

I decided to write today, mainly so I can get all this crap out my head and stop it from just going around in circles.

I finally managed to get onto my doctors notes… I can’t use any of it though! Its so inaccurate and just not detailed enough. I’m so angry because I was hoping I would be able to use it for my PIP evidence. But no yet another fucking obstacle has been put in my way. I’m so seriously over this bullshit already! I’m done.

In my notes it says I was diagnosed with granulomatosis with polyangiitis when in 2003, which is wrong, I was diagnosed in 2000 I only remember this really clearly because I was still in secondary school and I was ill a lot of the time and I struggled to keep up with the work. It also keeps saying I’m an ex smoker! which I’m not, I’ve never smoked. There’s just so much that is either wrong or just totally missing altogether. Its s fucked up!

And to top off yesterday I waited in all day for an Amazon delivery but I got an email to say delivery attempted! which was fucking bullshit because I was in waiting! I was so furious because I could have taken the dogs for a walk or whatever.

I was so angry and so stressed out and I just couldn’t see how I was going to get this shit sorted out. I was so close to cutting because I just felt so angry and like nothing was within my control and I felt out of control as well. I just felt so intense and just didn’t know what to do and cutting is my crutch, my go to thing to do for release. It has been for most of my life. I managed to control myself and I didn’t cut because I knew if I did I would have momentary release and then I’d beat myself up about giving in. I wish that cutting still wasn’t my instant reaction when I’m stressed out or feeling intense feelings. I have a much better control over it now but it still bugs me that its my brains default setting when things become unbearable.

I don’t know what more I can do other then control the urges, I can’t seem to change this default setting because its been like it since I was like 9-10 years old, so well over 20 years now. There’s a part of me that loves cutting so much because its a buzz and makes me feel great, hence why I’m covered in scars, but it also comes with a lot of shame a guilt and that doesn’t feel so good. Because you’re told its wrong, its not the right way to deal with your emotions etc.. but that guilt and shame isn’t always mine, its given to me from others.

Anger seems to be default mode right now, I seem to tap into it really quickly. Sometimes I can calm myself down quickly, sometimes its takes longer. It depends what’s pissed me off. Again its something I wish didn’t happen so easily, I can go from feeling ok, feeling calm, to just feeling enraged and such intense anger and frustration. Although its not like it every day, I think often it depends on how much I’ve already just dealt with, how I feel physically and what the trigger is that’s made me so angry.

Benefits make me instantly angry because claiming PIP last year was just so traumatic and so stressful and I was just pushed to the edge of sanity. So now my instant reaction is anger because I’m still not over how badly I was treated.

People shaming me for being ill and not being able to do what they want me to do on that specific day also makes me instantly angry. I will not be shamed for something I have no control over.

I’m sure there are other triggers, I don’t want to list them all. I don’t want to get rid of my anger because it often motivates me to do something to change the situation, like today I got up and I was straight onto the laptop writing and letter to the practice manager and my GP surgery to get them to sort out getting me a copy of my actual notes. I just wish it wasn’t my instant response to certain situations. I wish I was more level headed and calmer.

I feel a bit calmer and less crazy today, although as its now midday and Amazon still haven’t delivered my package I’m starting to feel more agitated because I do actually want to take the dogs for a walk today. I don’t want to sit in all day again.

Last night I remembered I was given a health journal ages ago now and I’ve never used it. So this morning I dug it out and started to fill it out for this morning, I think it will be really useful for myself and my doctors that are all involved in my care to be able to see how my day to day life really is. Often when I go to appointments and they ask me how I feel, I answer how I feel that day. I can’t remember how I’ve felt over the last 6 months and that’s another thing I’ve not really discussed is my poor memory. I swear its got worse over the years, I struggle to remember anything and nothing is in order either. Anyway I am going to make it a part of my routine to fill this in on a daily basis and build up a better idea of my over all health. It may also be helpful for PIP, I can copy the pages and print them off.

It’s going to be difficult writing down everyday what hurts and where, what doesn’t feel good etc. But I think its going to be a really important tool for myself and my doctors.

^ This is the health journal

That’s all for today, I think I’ve spilled my guts enough lol.

Peace out

Batman