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 – Hospital appointments

There are some things that came part and parcel with having a chronic illness and one of those things is having lots of hospital and doctors appointments.

I have a good GP whom which I get on well with, along with the nurses who I do my testosterone shot for me. I also have a good relationship with my Rheumatologist and his nurses and my Ears, Nose and Throat doctor. Usually I don’t find appointments too difficult as I always feel involved in my care and generally feel listened too and well looked after.

But yesterday’s appointment with a Rhematologist was the an absolute disaster. It provoked huge anxiety and anger. It was NOT a good appointment.

So I had made my way to my appointment, now if my Rheumatologist is busy, I will see one of his two nurses, who are both really lovely and I am more then happy to see. So I’m used to seeing one of those 3 people.

However when I turned up for my appointment, a nurse called me in to do my blood pressure and weight, she also needed me to do a pee sample. But she said that Dr Hopkins will see me soon… I asked who he was and why I was seeing him as he’s not my doctor. She couldn’t answer me.

It put me right on edge, it made me incredibly anxious and I wanted to leave. I then couldn’t do a pee sample as I was too tense, it was noisy in the waiting room, there was more people then usual there, which didn’t help with my anxiety.

I heard my Doctors voice, the one I usually see and I saw both of his nurses, who I see if Dr Marks is busy. In fact I spoke with Phoebe and she said I wasn’t on her list so I must be seeing Carole.

This wasn’t the case, I was led into see Dr Hopkins. At this point my anxiety was so high, I struggled to concentrate. He basically talked at me, he didn’t listen, he talked over me when I did try to speak, he didn’t involve me in the plan of tapering off my steroids, he basically told me what I had to do. This for some reason really triggered rage within me.

I held myself together as best I could but I was so enraged. How dare this person just bark orders at me, the guy doesn’t know, he’s never met me before, yet he was like well do it like this.

I walked to the train station as I need to get back for my counselling session, when I got to the station I rang the hospital as I needed to vocalise what had happened and how I felt and I wanted answers and to why the fuck I saw a random doctor and I also let it known that I did NOT want to see this fucking guy again.

The person I said to said some one would call me back, but as of yet I’ve heard nothing, so I will chase it up next week.

I think I was so triggered because it was an unexpected change and no one explained to me why I was seeing this guy, when my usual team where there. I also fucking hate not being listened too, I hate not being heard, it makes me feel so small and angry. I’ve spent a lot of time not being given the respect of being listened too. We all want to be heard and listened too. I also hate being told what I need to do regarding my own health and what I need to do with my medications. I’ve been ill all my life, I’ve been on medications for most of my life and I know my body better then any doctor ever will. I was more then happy to try and taper off my steroids again, but I didn’t agree with the way he wanted me to do it and I want to wait until at least March, as I’ve been really struggling lately as the weather has been so damp and cold, it’s just not the right time to start reducing my steroids.

The whole appointment was almost like a power struggle, he had all the power and wasn’t willing to listen about what I wanted to do regarding my steroids as I didn’t agree with his suggestion. I felt powerless, so ended up just agreeing with whatever he said so I could leave.

I will not be tapering my steroids like he suggested, I will get down to the bottom as to why I saw this guy and I will push to see someone from MY team soon and I will make it very clear that I do not want to see this doctor ever again.

Advocating for myself is something I really used to suck at, but as I’ve got older I won’t tolerate shit like this and I will let it be known. It’s fucking exhausting constantly advocating for myself and making sure I am being heard and that I am getting the care I need and deserve.

Note to any Doctors or nurses who maybe reading this, your patients know their bodies better then you do, especially those living with a chronic illness. Listen to your patients, they are the experts of their illnesses, you may have qualifications but they live it every fucking day! They know what works and what doesn’t, they know how they feel.

As much as I’m not always connected to my body, I know my body better then anyone else, I don’t think sometimes Doctors understand and respect that. I know its something my usual team of doctors understand, but this guy certainly didn’t.

It took me the rest of Wednesday to calm down, I’m glad I had a counselling session that afternoon, so I could let off steam and talk through it. It was quite funny as my counsellor had out some tuning forks which she used near me and she was like woah your body is having non of this and asked me if I was feeling angry and I was like I am furious. It was nice to have a safe place to express myself and my feelings.

I am feeling a bit calmer now about it all but I know its something that I will ruminate on now for a while. It’s hard not too when something provokes such a huge emotional reaction. I’ll get over it eventually.

Peace out

Zak

Living with a Chronic Illness – Ordering Meds

Every single time I order my Prednisolone they give me the wrong dosage ones! Despite having been on the exact same ones for most of my life!

It’s infuriating because they’ve wasted money as those wrong meds will not be given to another person. It means I then have to go to the GO for the thousandth time and sort it out!

Just organising 10+ medications + hospital appointments is like a full time job, which can be so stressful when I’m not being listened to continuously even though I know exactly what I take and when.

It may seem like a small thing to most people, but it gets beyond infuriating. It wastes everyone’s time.

I do see my specialist on Thursday, so I’m going to get him to write my GP a letter to say exactly what dose pills I am meant to be on and have always taken. Hopefully this will clear up the confusion, which started when I started tapering off the steroids last year, but I had to go back onto them when I had surgery in August.

Anyway hopefully this ongoing problem will get sorted soon.

Peace out

Zak

Teeth op

So this week I finally had my two teeth out. I had been waiting since June last year. It took so long for various reasons, the referral to the hospital kept getting lost and twice they denied it. But I eventually got an appointment in April.

I still then had to push for a pre op assessment, they said I could be waiting for quite a few weeks… but I’d already been waiting for a year.

Anyway last month I was booked in for the pre assessment and that all went fine and two weeks after I was booked in to have my teeth out, but it got cancelled and rearranged at the last minute.

So I went in again the next week, spoke to the doctors and stuff, got changed and because it was a Saturday and they only had skeleton staff on and because of my complex health issues they refused to do it just in case anything went wrong.

I was so cross, angry and frustrated! Mainly because of how long it had all taken to get to this point in the first place but also because it was the first time I’d sat in the men’s waiting room, so that was quite daunting but cool at the same time. It was a big deal for me and it’s something I don’t think they really appreciated.

Anyway it got rearranged for this month and again saw all the Docs’s etc. But when it came to the anaesthesiologist, he wanted to sedate me instead of putting me under general anaesthetic. Now this really stressed me out and made me anxious, again because it had taken so long to get here but also I’ve had sedation before and it’s not worked, so I was extremely apprehensive and anxious about it, not really the feelings you want to have before you get put to sleep.

It made me feel like I wasn’t listened too and it was something totally out of my control, which at the moment control over things of sorts helps make me feel better. But I think a lot of that is due to top surgery coming up and that’s a huge deal and a lot of that feels out of my control.

I tried my best to just let it go and trust but I couldn’t. But to my surprise the sedation actually worked! Which I was grateful for but then felt bad for giving the guy a hard time and I felt frustrated with myself that something like that caused such a reaction inside.

I’m trying my best to keep on top of these intense emotions, but I think it’s just apart of who I am and it will be something I’ll always have to work on.

After all that stress, everything went fine and I got home and rested the rest of the day and yesterday. I’m sure I’ll continue to heal well.

Peace out

Zak

Dear friends,

Dear friends, old and new. To those who I’ve known for 20 years and to those who I’ve known for 2 months. I wanted to write this to catch everyone up on where I am and where I’ve been.

In January, I was in a really dark place, which is somewhere I haven’t been for a long time and I feel like I’m only just coming out of the other side of it, but I still have a way to go.

As a result of this darkness I removed everyone from my Facebook for a good 3/4 months. I was angry, frustrated, isolated, depressed and struggling to survive.

But in that time I did a lot of soul searching, I know such a cliche, but I did.

I realised that over the years I’ve been quick to shut people out of my life, I’ve been quick to give up on friendships. I was trying to cut out “bad energies, drama” etc but in doing that I closed myself off to the good energies and good stuff.

I think I became so closed off because I’m so willing to help everyone, that sometimes I get burned. That’s not necessarily down to people themselves but due to my lack of boundaries and respect for myself. I thought if I made other people happy then I’d be happy but it doesn’t work like that.

Then about 5 years ago I started exploring my gender and came out as trans and I began my journey. Which again I was really open about but I was also wary of being people’s token trans friend and I was just anxious about not being accepted or whatever. So again I made my friend circle smaller.

In making my world smaller, I’ve missed out on living. I’ve missed out on friendships with some really great people. I gave in to the negative inner voices and the darkness, I allowed myself to become isolated and alone, the anger and frustration grew within.

January was my breaking point but in the weeks and months after I spent most of time alone, thinking, reflecting and meditating.

I started to allow myself to be open, slowly I began to add people back on FB, I began to reach out to friends. I started to ignore the negative inner voice and the darkness and walked towards the light.

It’s by no means perfect, I still struggle with anxiety and depression but I’m finding it a bit easier to deal with.

I often felt my expectations of people were too high, but I realised I rarely expressed my expectations in my friendships, I can’t have expectations if people don’t know what they are.

My voluntary work has helped me so much, it’s helped me with not being so isolated, I’ve made some incredible new friends who’s friendships I am so incredibly grateful for and hopefully in 20 years plus we’ll still be friends, still having adventures and experiencing this life together.

For those who I’ve not spoken to in a long time, who I’ve recently added back, I hope you’re well and forgive me for being so distant, I had to go off in order to grow into a better version of myself and I hope to hear from you soon, much love to you.

For everyone else, know that I appreciate you, I may not say it as often as I should or even show it but I do very much appreciate every friendship I have. You’ve kept me going even when I didn’t want too. I will continue to try and be open with you about everything, it’s something I’m still working one. But I’ll get there.

Thank you to everyone for your patience, love, support and sheer awesomeness!

I love and appreciate you all!

In 6 weeks time I will embark on the next stage of my journey, my physical transition, my spiritual journey.

I’m excited, I’m a bit scared, I’m nervous but I am so ready for it, I know it’s going to be a challenge but I’m ready to face it head on.

I know I will have my friends by my side helping me through and I’m so excited to have you guys with me! I can’t wait for this next adventure!

Peace out

Zak 💜

The darkness surrounds me

I wrote this last night, despite a nice day the darkness still takes a hold of me and I can’t shake it off

You ever just feel like you’re a total inconvenience to everyone?!

But it’s almost like they only stick around out of duty and pity they feel for you.

You ever feel so lost and alone, fractured and broken that nothing seems to make a difference anymore.

I feel like I’m being left behind, like I’m on the outside of life, peering in to catch a glimpse of things that could have been.

I feel like I’ve wasted so much time doing nothing and I still have no idea what to do.

Like why am I even here? I have no purpose, no point.. directionless child who is just floating around in the darkness all alone.

Faking being ok for my whole life, I can’t keep it up, it’s a heavy weight. But I feel I can’t be depressed all the time because well people don’t like that.

I’m just an old toy left upon the shelf, battered and bruised, broken and dusty. Left unloved, forgotten and alone.

I want to step into the light out of this darkness, I’m tired of going it alone

Peace out

Zak

Warm weather and dysphoria

It’s good Friday today, the suns out and it’s really warm. For most people they don’t think too much about what to wear, how they feel etc.

For me personally I really struggle when it’s warm. Stress about what to wear because I can’t stand being hot but I always want to disguise my chest without binding all day long because it hurts and makes me more exhausted come the end of the day.

I’m so over it, I want top surgery so bad. I just want to be able to enjoy the sunshine without being stressed out, disconnected, struggling with disassociation.

It makes me feel so angry, agitated and anxious. I try my best just to get on with it and enjoy myself but it’s so difficult.

Meh 😔

Peace out

Zak

Still here

Again I’ve not written for a few months for various reasons. One being that I’ve not really been present, I’ve been disconnected and just in my own little world lately.

The other reason is I often don’t feel like I have anything new to say or anything different to offer anyone. I’m not one for “content” and all that stuff. I’ve always blogged for me and part of me does want to be able to make a living from writing, whether that be blogging or whatever. But I always think I’m not good enough at anything, so I don’t try. If you don’t try you can’t fail right? But either way doesn’t make me feel good…

I have been writing a lot, but I’ve just not published anything. I have loads of blogs I’ve planned to do but just didn’t do it. Like 18 months on testosterone update, I just didn’t do it, which is sad for me because I enjoy writing and blogging.

It all goes back to zero self esteem and I’ve just been dealing with a lot too.

Back in January I was just so angry, so frustrated, so depressed that I just shut everybody out, I was just done. I’d had enough and to start with it was really hard being so lonely but I tried to make the best of it like I do with everything and some days we’re really good but ultimately I was still really lonely. I’ve realised I can’t push everyone away, so I’ve added a few people back on fb, reached out to others.

It’s still really hard and uncomfortable and I still feel so fed up with always reaching out and not getting much back, but any rejection is hard to deal with and I suppose it’s something I gotta work on and deal with.

I still feel very much like an outsider, I’m not one of these people who opens up easily to others, I don’t like to insert myself into people’s life, mainly because I don’t feel like I’m wanted… there’s that low self esteem again 😔 maybe I’ll always been an outsider, maybe one day I’ll find my tribe. I dunno.

I need to try learn to take compliments too, I’ve had a few recently and it makes me feel so uncomfortable, it makes me feel really cringy and weird and I always just think people say nice stuff cuz they have too, I always doubt it’s sincerity. It’s not something I’ve ever been good at, I tend to just deflect when I get a compliment. But I need to start saying thank you and maybe writing them down so I can reread it and see that I’m not as worthless as I think I am.

I will update more often and maybe upload stuff I’ve previously written, some of which is pretty dark and emotional but maybe if I get it out on here it will help me work through it.

Peace out

Zak

Mobile phones have killed the conversation

Am I the only one who when I am with people will put my phone in my pocket and leave it there, checking it very occasionally.

I had two friends down to stay with me and I felt so fucking awkward, lonely and left out.

They both spent 99% of the time on their phones, they were chatting with other people, playing stupid fucking games and just sitting there in silence… like wtf?! One of my friends even sent me a couple of stupid memes… like wtf I’m in the same fucking room as me! Show me! Don’t fucking text it!

I felt so fucking awkward, I’m not feeling my best as it is and I just didn’t have the energy to keep starting conversations… cuz they just died off anyway, I felt like I was interrupting and I was just in the way in my own fucking house!

We went out yesterday and on the way back not one of them said a word to me! They were just sat there on their phones talking to each other!

So today I didn’t even try, I just wanted them to go, I was so fucking done!

Yes they had bought me dinner but I don’t want or need things bought for me, I got my own fucking money. All I wanted was some quality time with friends… not too much to ask for? Right? But clearly it was.

I’m so fucking angry and upset! I deleted every single person off my FB! I’m fucking done with people! They wanna be friends fucking prove it!

I’m sick to death of trying to keep friendships going, I’m done! I don’t fucking care anymore! People are so selfish and self involved.

Yes we all got issues but fuck! Sitting on your phone whilst in the company of others is so fucking rude!

I’m so lonely, but I’d rather be on my own then be with people who make me feel alone.

One of them clearly didn’t like what I had to say about how they made me feel so I got blocked on social media’s! Fucking pathetic! Truth hurts!

I’m so tired of crying all the time, I’m just tired… I’m trying so hard to keep going and keeping my shit together but it’s exhausting. I’m tired of pretending to be ok, I have to be ok… no one else is here to help.

Peace out

Zak

Vasculitis sucks! – living with a chronic illness

Yesterday was so long and exhausting, not only did I have to go to Christchurch hospital but I also had to go to the chemist in Bournemouth hospital… but that’s a whole other story.

Yesterday I saw a vasculitis nurse because I’ve been having nosebleeds and I’ve had a chesty cough for a few weeks.

But this nurse wasn’t qualified to write a prescription and she wasn’t qualified to listen to my chest. It was all very frustrating because as my bloods, blood pressure and pee sample we’re all fine there wasn’t much she could do…

So she ended up calling in my Doctor to listen to my chest, which of course was clear. But he gave me a prescription for antibiotics as I have been coughing up green crap so that’s indicative of an infection, but I have no other real signs then that. He also is going to refer me to another ENT doctor as my current one is a jerk! Last time I saw him I was really ill but because my nose looked fine then I must be fine… so hopefully a new ENT doc will be more thorough.

The only good thing the nurse did notice with me is that I’m not steady on my feet and she asked me questions about my legs and I explained my knees bend back and both knees turn in and as a child I had my shoes built up by the hospital and had special in souls made as well, but I’ve had nothing as an adult other then physio on my legs. So she’s going to refer me to a physiotherapist, which is cool and a pediatrist to have a look at me, although I’m not sure in souls will fix this problem but we’ll see what happens. I’ve had problems since with my legs since I was born so I’m not sure how much these appointments will help, but I can only go and see.

After I got my prescription they said I needed to go to the boots in Bournemouth, so I assumed they meant in town, but what they didn’t say was they meant Bournemouth hospital.

I got to the boots in town and they said I needed to go to Bournemouth hospital. I was so angry because by that point I’d been up since 6 am, out since 7:45 am and it was now midday and I was absolutely exhausted and in so much pain with my joints.

I had to wait for half an hour for the bus and when I got to the hospital I was waiting for about 25 mins for my meds.

I didn’t have to wait too long for the bus back but that took an hour. M

I slept for a bit when I got in, which was much needed.

I’m hoping the antibiotics work and my chest feels better and hopefully these nose bleeds will stop.

On top of all that my gender dysphoria was bad but I’ll leave that for another blog.

Peace out

Zak