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

Living with a chronic illness

I’ve not written much about my health lately, mainly because I’ve been super busy with like a trillion appointments!

It feels great having such a great team of doctors around me but that comes with a lot of appointments. The team of doctors and nurses looking after my care are incredible and I am so grateful for them. I love the NHS!

My Rheumatologist over sees everything, but he is just one Doc apart of my team, I also have a Ears nose and throat doc, physiotherapist, and podiatrist. I also have to go to the hospital for a blood test every 8 weeks. I have two other appointments for my medical transition, I see a nurse every 3 weeks for my testosterone shot and also the gender clinic.

Since January I’ve had a total of 9 doctors and hospital appointments and I have another 7 coming up in the next 6 weeks!

Appointments mean a lot of early mornings and a lot of bus rides and days of recovery from these appointments.

My treatment is going well but like the appointments its takes up time as well. I take medication in the morning and in the evening, which have two pill boxes that I have to fill up every Monday, I do a sinus rinse twice a day, morning and evening but sometimes in the afternoon if my sinuses are playing up and physio exercises.

The treatment itself seems simple but if you add in the human element of chronic pain, chronic fatigue, getting ill, depression, dysphoria, disassociation, insomnia, memory issues and no motivation, then its not so simple.

Some days its so hard to get myself up an organised and get everything done before even leaving the house, that I often can’t get out until 2-3pm. Some days its such a struggle, some days are a bit easier but everyday is hard work.

Mental health has a huge impact on physical health and visa versa, which complicates matters. Even after all these years of dealing with these things it only feels like recently things are more under control and I am being properly cared for, but its still not easy and I’m still learning about myself and learning different ways to deal with whatever is thrown at me.

I don’t think living with a chronic illness will ever be easy and I don’t think its something I’ll every truly accept and its something I’ll never stop learning to deal with. But all I can say is that I am trying my hardest to maintain good physical and mental health, which in itself is a full time job.

Overall things are on the right path, at the moment its about maintaining good physical health with medications, physio, insoles in my shoes, sinus rinses and hospital appointments.

Peace out

Zak