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

LIFE IN LOCKDOWN..CONT

This feels like a never ending saga… Although things are starting to slowly get back to normal-ish. More places are starting to open and you’re allowed to travel a bit more and the level has been lowered to 3.. which I’m unsure of the exact do’s and don’ts but for me I am meant to be isolating now till the end of this month, although that could change. It’s just a case of waiting to see what happens next, I do think a second wave is inevitable as that’s just how a virus works.

For me I don’t feel quite comfortable going to any shops in town just yet, although I will have to go to primark at some point at I have one pair of shorts and the ones I’ve seen in Asda either don’t feel right or just aren’t my style. I’m also feeling quite anxious about using public transport, luckily at the moment I don’t have to go anywhere, despite bursting to take the dogs out for the day somewhere, I think for me right now the risks still outweighs the wants. Plus I need a mask which I don’t have and don’t feel comfortable wearing due to not being able to breathe properly. I think I’d feel to claustrophobic wearing a mask, especially on the bus. So for now, I’m staying local..which is boring AF but I got to keep safe.

I wish I could say I was coping better with this lockdown life, but sadly I can’t. I’m still really struggling, my depression is pretty bad, anxiety is bad and the disassociation is really crippling.

I decided that today I was going to try my best to actually participate and engage in life, rather then the disassociation take over and its been extremely exhausting trying to stay present and in the moment. But I’ve been able to get things done that have just been impossible to do in the last few weeks.

Most days I am so disconnected, disassociated and switched off that all I can do is sleep, eat snacks as cooking has just been too difficult and walk the dogs. I haven’t even been able to really watch anything either, I’ve just been watching things I don’t have to concentrate on, things I’ve seen a million times as its kind of comforting and eases my anxiety. There’s a few new seasons of shows I love on netflix that I’m bursting to watch, but for some reason I can’t start them. I feel too anxious, I know it makes no sense. I’m not really enjoying doing anything either, I just feel so numb, I can’t remember the last time I actually felt something other then feeling so numb and just nothing. I feel like most days I’m just going through the motions, just to get through another day of monotony.

I struggle to even start a task, it takes forever to do the basics, as I’m so trapped my anxiety and fighting to stay in the moment that I spend a lot of time sitting down trying to motivate myself enough to unfreeze and move. Its such a battle every day just to do the simplest of things and its so exhausting. I’m meant to be taking my blood pressure every day, but I’ve been unable to do that, as I just don’t remember and for some reason it feels like an overwhelming task, even though its so simple.

I’m just trapped inside my head all by myself all the time and my head is such a dark place to be but I’m stuck there. I need outside stimulation and interaction, I need outside help. But it’s just not there right now.

I’m so withdrawn from life, that I just don’t reach out anymore, I just can’t bring myself to it. I’ve kinda resided to the fact that this is life now, just on my own, loneliness forever. I’m not ok with that but I’m too tired to keep trying to insert myself into people’s lives.

Even when I’m out with the dogs and people talk to me, I keep stumbling over my words, I feel super awkward and incredibly anxious. I love being out with the dogs but I hate being seen, I just want to walk and chill on my own, which just isn’t me at all. I usually love talking to random strangers but now it just makes me feel so vulnerable and awkward I really don’t enjoy it and I wish I didn’t feel this way as I am quite a social person usually. But my anxiety is so strong and the constant negative thoughts is making everything impossible.

I’m kind of dreading everything getting back to normal, I can see myself keeping myself very withdrawn and isolated, it feels a bit scary getting back to normal. I don’t know how I’m going to get myself back out there into society, just thinking about it freaks me out. I’m not agoraphobic but the thought have having to go a bit further a field, like say to a hospital app is terrifying. Not just getting public transport but also interacting with others and also being able to organise myself enough to get myself somewhere on time. This lockdown has had a huge negative impact on my mental health and its not something that I’ll be able to easily fix.

I’ve had very little sleep today, under 4 hours I think. I got up early and did the house work and made some breakfast and I was out just before 10 am, I took the dogs for a walk and sat down where we scattered dad’s ashes which was nice and peaceful. Spoke to him and wished him a Happy Fathers Day, something I do every year. After our walk I had some lunch and watched and film, then jumped onto the laptop while my brain was still engaged in real life and I’ve been sat here for about 4 hours now. I feel a bit better for blogging and getting stuff out, I’m bloody exhausted now. I’m going to try and get an earlier night.

A couple of weeks ago I decided for my own mental health and sanity to cut ties with my ex completely, which meant deleting messages, blocking on FB and burning the break up letter they gave, which wasn’t as satisfying as I thought it would be. I couldn’t keep tormenting myself and I felt like I was still holding on, waiting, hoping that maybe I’d be wanted again. I didn’t really want to remain friends in the first place, it’s what they wanted and rather then be strong and stand up for myself I just went along with it. But I can’t heal from the situation whilst stuck in it and still wishing and hoping we’d get back together. I kept thinking I was over it but its still just as painful as when we broke up. I hate feeling so deeply, cuz sure as hell they don’t miss me or were even hurt by the break up, even if they did they didn’t show it. But why would they be hurt, I mean its only me right. Not speaking to them is so painful but being friends was painful, I can’t win.

Man, writing all this shit out makes me feel so broken.. no wonder I’m alone! lol who the fuck wants to take me and all my baggage on?! I don’t even want me.. Maybe this will always be the way, maybe one day I’ll find the light in all this darkness.

Peace out

Zak

Living with a Chronic illness

Having a chronic illness is hard work, especially at the moment, with the current pandemic. As I’ve mentioned in previous posts I am classed a vulnerable and I’m meant to be staying inside for 12 weeks, but I’ve had to go out for various reasons.

Now I have finally been given a priority delivery slot with Tesco, which means I don’t have to go into any shops to get my food shopping. There’s also a service provided by the council where someone can pick up medication for me and do any other bits I need doing. Which is a relief as I was starting to get more anxious about going food shopping and collecting medications myself.

So now I have things in place for essentials I can relax a bit more, the only thing I’ve still been doing myself is walking the dogs as I need to get out an exercise as I’ve been really feeling the effects of not moving around as much as normal. I didn’t realise that just by getting out each day, doing general stuff like food shopping, going to hospital appointments, going to the cinema etc was so good for my physical health. In the last few weeks since everything has closed and I’m stuck in the local area, my joints have been super painful, especially my lower back and knees and my chronic fatigue has been much worse as well.

I’ve spent many years building up the strength in my legs to combat the chronic pain in them and same with chronic fatigue, I’ve spent years building it up to a point where I rarely needed to rest or sleep in the day time. But now I feel like I’m back at square one, which is really frustrating.

Now I’m have more clarity about dog walking, I’ve been out walking more, so I can build myself back up again, so I can feel a bit more human again and have a sense of well being.

Yesterday I had to have a 24 hour blood pressure monitor, as my blood pressure has been quite high recently. I think its mainly down to anxiety and possibly the change in testosterone. I don’t know why they haven’t prescribed propanaolol yet, it’s a beta blocker but also helps with anxiety. I get the results next week and I’m going to ask about the beta blocker as I think its probably the best course of action.

The blood pressure monitor went off every 20 mins, which was really annoying lol as I had to stand still when it was taking my blood pressure because it didn’t read it if I was moving around. Then in the evening from 10pm it went off every hour. I went to bed at midnight in hopes I would fall asleep before it went off again. I managed to get comfortable and I managed to get to sleep, I was conscious a few times throughout the night of it going off to take my blood pressure but apart from that I slept pretty well lol! The world could be ending and I still be asleep haha!

A couple of weeks ago they did an ECG which was fine and some blood test and only one flagged up as a not normal. Turns out I am borderline under active thyroid, which really makes sense, I’ve put on weight recently which I’ve been struggling to loose. They’ll repeat the bloods again in 3/4 months time to see if it’s still the same or its sorted itself out. Hopefully it will have sorted itself out by then, as I really don’t need anymore illnesses on top of what I’m already dealing with at the moment.

It’s been really difficult dealing with everything at the moment, but I am trying to keep a sense of normalcy. Each day is different, some days are much easier then others and that’s ok, just trying to go with the flow and trying not to push myself.

Well that’s it for now,

Peace out

Zak

A little blue

I am at my brothers right now, looking after my little nephew. Not long put the lil monkey to bed, he’s sound asleep.

My mood isn’t much better today, still feeling a bit down, a bit flat but it’s not too bad, I can deal with it. Still just trying to let myself feel it, deal with it rather then instantly distracting myself from it. Because that’s not always helpful.

The weather is really crappy today so I’ve been able to wear trousers and my hoodie 🙂 yay! made me feel comfortable with my body. Which I’ve not really felt since the summer started, I’m so glad we are heading towards the cooler weather again.

I slept ok-ish last night, I did wake up for about half an hour at about 4 am, I ended up just getting up for a bit and went straight back to sleep until my alarm went off and rudely woke me again at 7:30 am which by then I did NOT want to get up and I wanted to stay asleep….typical lol.

I was up at the hospital just before 9 am, I found where I was meant to be going ok too. Thankfully I didn’t have to wait long, a nurse did my weight, height and blood pressure before I went in to meet my new doctor. I was a bit anxious about it but it went ok, it was a lady doctor and she was really lovely. On my notes it does say I am male, but she asked me if it was Miss or Mr so I said genetically I am a Miss but I prefer Mr because I’m trans* and she was like ok cool, so that was pretty awesome. We talked about my condition, how it effects me, how it started, my symptoms etc, just my whole history up until now. She’s agreed that for now I can slowly come off the steroids, which is cool. I start by taking them every other day and see how I go, if I have a flare up then she will look at putting me on something else. I see her in two months time 🙂 so yeah I am pretty happy with that outcome.

I had a nap mid morning, after I’d taken the dogs out for a quick wee. I definitely needed that lil sleep, I was out for an hour and a half and I felt refreshed.

This afternoon I had a health check up with the nurse at the doctors, she did my weight, height and blood pressure. Got her to do me a prescription of a few bits I needed, we had a good chat about things too. I asked her if I absolutely have to have my smear test, which I am due to have in March and I explained my situation to her and she said they will send me a letter asking me to book an appointment when its due and all I need to do is ring them up and explain my situation and I may have to sign like a disclaimer or something but I may not. So yeah that’s good. I checked with reception if my forms had been sent to the gender clinic and they definitely have which is cool! and she’s going to see what’s going on about the pain clinic…again! I got referred in January, they sent me forms which I sent back but I’ve just not heard back since, which is so annoying!

I managed to sit down for about 10 mins before I was off out again.

I’ve been at my brothers since half 4 pm. Little Leo has been fed, had play time, had a bath, had a bottle and is now fast asleep. He’s such an easy baby to look after. It’s Jack Jack’s 6th birthday tomorrow, 6! I can’t believe where the times gone. So I’m seeing him on Fri to give him his presents.

Got group tomorrow and I am taking about 20mins of it…EEEP! I have a rough idea of what I am going to do, but I need to plan it a little bit more, so I need to do that in a min. Bit nervous about it, I hope people behave and I hope it will be helpful to them. We are doing about managing emotions and I will be doing a bit about how to be mindful of emotions and I will be doing a mindfulness exercise.

Well I better get my butt into gear and start planning my lil piece for tomorrow.

Peace out

Batman