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

Inner monologue

I wrote this early hours of this morning and thought I’d share the sort of stuff that runs through my brain.

Inner monologue

Body needs to rest but my brain needs that’s physical stimulation which is maybe where/when/why I get so agitated and frustrated as I’m not physically working moving enough and my brain needs that stimulation/sensation in order to be able to focus and function better

But obviously having a chronic illness rest time is hugely important and essential to keep my body well.

My brain is also easily overstimulated which can either leave me feeling drained and overwhelmed or hyper and unable to sleep or settle down.

It’s been such a great journey learning more about myself and how my brain is working and connecting those dots.

Pretty much everything I write isn’t based in science, just my own personal experience, discovery and exploration of myself and how I work and function, which is fascinating.

I’m heading towards 35 and I’m finally figuring myself out, in a way I’ve never really looked at before.

When I have counselling before it’s was always based around dealing with the situations I was currently dealing with like self harm and depression. I never really delved into my past and never really spoke about the why, why I am the I am, what’s making me tick.

This round of counselling, I mean yeah I was struggling big time with anxiety and depression. But I feel like I’ve been way more open with my current counsellor, I’ve delved deeper than just surface stuff and I’ve been given the space and opportunity to look at things completely differently and it’s been super fascinating and now when I’ll just get random thoughts much like how this post started from a light bulb moment I suppose and I’ve just been writing and writing and a lot of my scribbles don’t make it into a blog but I’ve got so many notes all over the place I will type them up and turn them into some kind of order as I think it’s such an important part of the process and journey of rediscovering who I am outside of friendships and relationships and outside of my transition.

I don’t think I’ve ever really known who I am and where I fit. But I’m slowly learning and discovering more about myself and it’s exciting.

I’m starting to like me and who I am, what I represent and what I can contribute to this life.

I’ve always felt like a lost soul, just kinda floating around, not really fitting in or not even really needed.

I’m started to feel more grounded in my body, in my mind and in my soul, the essence of who I am and why I’m here. Feels super weird but also pretty cool.

My sessions end this month and I’m feeling pretty confident that I can continue this journey myself. Just gotta keep writing out all these thoughts in my head and continue to listen to myself and the different aspects that make up me and make sure all needs are met where possible so I can continue to be the best version of me.

I did write another note of stuff I was thinking about last night but I will post that separately as its pretty long.

Also reading this back I have little recollection of writing this, I knew I wrote it but I was so in the moment and everything was just flowing, which I think the real me is able to come into power and be at my most raw and vulnerable.

Peace out

Zak

Grumpy boy

The last couple of weeks have been a bit of a struggle, I’ve been feeling so agitated, grumpy, achy and exhausted. A lot of it has to do with having stopped taking trazadone, which is slowly working its way out of my system.

I’ve been feeling a bit overwhelmed by everything as well. I’ve taken a bit of a step back from life, by not answering messages straight away, as it feels too much and I just need that time and space and also taken a step back from people, some days the thought of having other people near me, especially a lot of people almost feels like a physical pain, which is really hard to explain Even just going to the shops to get food is difficult and I put it off until I really have to go. I also feel like I need a protective bubble around myself as I’m always nervous about people being near me, touching me etc, especially random people I don’t know.

Being just on my own is so much easier, as I don’t have to explain myself, or feel like I have to perform, or be happy or whatever. I can just be grumpy and irritable, without upsetting anyone by accident.

Its just much less pressure and feels freeing. 1:1 with someone isn’t as daunting, I think my social anxiety has really been kicking in due to coming off my meds. But I’m sure with a little time and patience I’ll be alright again. Just need to give myself some space to breathe.

I get so frustrated with myself for feeling grumpy and irritable and I know its usually because I’m trying to stop myself from feeling low, as if I let myself feel low, its a hard work to make myself feel better again. So I fight against just allowing myself to feel how I feel, which just makes the whole process longer, then if I just let myself feel sad in the first place!

I’ve also come to realise that I’m an introvert, I also used the think I was a bit of an extrovert. But I don’t think I am at all. I’m still really quite shy, which has something that has never really changed since I was small. I need my own space to be and recover from social interactions, I prefer my own company, being around lots of people is exhausting.

I think because I am quite good at coming across who is someone who is fairly confident but I’ve spent my life being my own advocate to get what I need from services, mainly hospitals/doctors etc.

But yeah I’m a pretty shy, anxiety filled human lol.

Hopefully in the next few weeks when the trazadone has come out of my system fully, I’ll start to feel a bit better again.

I got a SAD lamp, which I’ve been using most days. Haven’t noticed a difference just yet, but I’ll keep with it and maybe use it in the morning rather then the evening.

Peace out

Zak

Self Care

I’ve not written much about self care recently, as after surgery self care was kinda a given. I had to listen to my body and look after myself.

Recently I haven’t been feeling great, I’ve been feeling absolutely exhausted and generally just been feeling unwell, but not enough to definitely say I have an infection or something. It maybe a delayed reaction to surgery. But I see my specialist tomorrow morning so I’m hoping to get more answers.

So because of feeling so exhausted all , I’ve been listening to my body and resting and sleeping when I’ve needed too. Which sometimes is a little frustrating as I feel like I’ve wasted a day. But self care isn’t a waste of time.

Today I’ve been resting and sleeping, as I’ve felt so exhausted. I eventually got up and did the housework which always makes me feel like I’ve accomplished something.

Took the dogs out for a quick wee, it’s been so grey and miserable today. Despite that I decided to go into town. I got myself some frankincense essential oils, as it’s meant to help relax the chest and help with colds and infections. I went to lush to take in my old pots in exchange for a free pot of face mask stuff, I also got myself a shower bomb too. I then went to Asda to get a few things.

I could have easily just gone to Asda, but I knew I needed to get out for a bit. Even if it was just to a couple of places.

I’m pleased I treated myself to some self care things 🙂 It’s important to me to look after myself and my needs. It’s keeps me relatively well, physically and mentally.

It’s important to slow down and listen to what your body needs. You only have one body, there is only one you.

Certain self care aspects of my days are non negotiable, like taking my meds in the morning and evening, making sure I sleep when I need too, eating as and when I feel hungry, putting my incense sticks on in the morning and evening, doing housework every other day, attending appointments. There are more I could list but it would take a while.

I’m feeling pretty exhausted now, so I’m going to wrap it up. I’m not sure this blog will make much sense lol.

Peace out

Zak

The light at the end of the darkness

I feel happy again and I can say that now and actually mean it.

Just a few months ago I was in the darkness, struggling to get through a day. At times I felt so tired, I just didn’t want to keep going.

I recognised that it’s not that I wanted to die, I just needed the pain to end.

At that time if you had told me to just hold on because you’ll soon be surrounded by some amazing people and you’ll soon be having top surgery, I probably wouldn’t have believed you.

My world was so dark, I just couldn’t see that there would ever be light and happiness again in my life.

But sat here now late at night, I feel happy, I feel content, I feel understood, I feel connected, I feel loved, I feel like I’m wanted. And it’s the most amazing feeling ever because I don’t feel I’ve ever really experienced it, I’ve never been around a group of friends who encourage each other, genuinely care about each other, have different passions and talents, who build each other up, help each other without question.

Most of my past friendships have come with conditions and they were about what I could offer, non of those friendships have endured and non of them really helped me grow, but they opened my eyes to the fact my kind nature attracts damaged souls and can easily be taken advantage of.

But now it feels different and for that I am eternally grateful, I let myself be vulnerable and open, which was scary but it’s paid off.

I know these people won’t all be in my life permanently and I’m ok with that, I know we were brought together to help each to continue to grow through our each individual journeys, by coming together as a collective, who’s knows where this will take us in 6 months/ a years time.

Its already helped me and started to heal some of the hurt I was carrying inside, I feel happy, I want to live, I’m actually excited about life now, I want to start looking to the future and what that will bring.

The only changes I made was I let myself be open and vulnerable and fuck that was scary but it’s something I’m going to continue to do, so I can keep experiencing life and hopefully new friendships and opportunities will arise.

You know who you are and I’m so grateful 💜

And to everyone in my life, know I love you, I appreciate you and I support you 💜

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 💜

A day in the life of a trans guy – Selfies

This isn’t something I’ve spoken about much, mainly because it’s something that’s happened gradually over my transition.

Looking through Facebook memories and the last year I’ve taken a less selfies, compared to previous years where I’ve posted multiple selfies a day.

I think a lot of it is that now I’m nearly 2 years on testosterone, I’m more self conscious, so don’t want to see pictures of myself.

Maybe after top surgery I’ll feel more myself and much more confident in myself.

I’ve become really closed off and extremely anxious about like everything. I shut people out, cut people off, really easily. Which is not me at all, I’m slowly starting to open myself up again and pushing through the fear, anxiety and negativity.

Again I think top surgery will help with a lot of it. I know it won’t be the absolute solution and I still have a lot of work still to do on myself. But I think it will be a big relief.

I took a couple of pictures today with my dogs which was cool, I felt ok about it.

^ me and Foxy girl

^ me and Scrappy doodles

I’ve also been shaving my face once a week to get the hair growth to come through. Because I gets spots around my chin and upper lip I don’t want to shave more often than that as it makes them sore, so once a week is enough for now. That’s another thing that makes me anxious/gender dysphoric is that my legs are super hairy but my face isn’t yet. I know in time it will get more fluffy but it does get a bit frustrating.

Anyway that’s all for now

Peace out

Zak