Surviving self isolation

I’ve spent the last few days thinking about stuff, I think being forced into self/social isolation has a tendency to do that. Whilst I am used to social isolation, its something that is really bad for my mental health. So I’ve had to really think about how I am going to get through this, without spiralling into the darkness.

The first thing I decided was to start back on trazadone, I decided to stop taking it as I felt like I no longer needed it. Although having stopped it, I realised they were helping more then I thought they were. They helped me focus, stop disassociating as much as I am right now, took the edge off anxiety and depression, all which have come back but I’ve been able to keep on top of them a bit. Now we are in this self isolation and not being able to do everything I enjoy I know my mood, anxiety and disassociation will get worse, so I know I need to get on top of this. Not something I really wanted to do but I need to do.

I need to write down a list of things I need and see if I can try and get hold of them, I don’t need much just a few bits to get by. But as I’m vulnerable to this condition I need to try and be as prepared as possible.

I also need to write a list of things I can do inside, things I can do to keep the fur babies occupied as well. I can still take them for walks but with my chronic pain and fatigue I can’t always be outside with them.

I need to write out a rough routine that I can try and follow, I do better with a routine. Although I know I easily get bored of routine, so it won’t be something I will follow strictly just guidelines really so I don’t feel like I’m just floating around.

My asthma clinic appointment was cancelled as my doctors aren’t doing face to face appointments unless they are an emergencies, which I understand. I can still get my testosterone injection as that is something I need, so that is booked in for 14th April. I did ask if I can get paracetamol on prescription just for now, as I cannot find it anywhere and I don’t want to search the shops. I was told to ring back, but wasn’t able to get through, so I will try again tomorrow.

I plan on writing more, whether that is a blog or just scribbling down in my notebooks. I’ve felt so disconnected from myself I’ve struggled to write anything that I felt connected with.

Once I have some stuff written down about how to get through this self isolation, I will share it on here and hopefully as a community we can come together and help each other get through this.

Peace out

Zak

A day in the life of a trans guy – How I prepared for top surgery.

I thought it might be helpful to write about how I prepared for top surgery, as I don’t think there’s enough information out there about it. There’s lots on the surgery itself and not much about post surgery, especially if you don’t have family to support you.

As soon as I got my date for surgery, I wrote a list a big list of everything I thought I would need and what I would need to do running up to surgery. I’m a bit of a control freak, so I’m pretty good and planning and organising myself and being over-prepared.

I also have 2 cats and 2 dogs, who are my absolute world so I needed to make sure not only was I prepared but they were also going to be cared for and had everything they needed.

LISTS! cannot express enough about how helpful lists are and also feels great when you finally get stuff ticked off. Plus they are a great visual aid to see how much you need to get and for me its just a great way to help organise my brain and figure out when I need to get things and in what order.

I belong to a great facebook group called TMSA social and support, they have two separate groups. They have files for surgeons which is where I picked mine from and everyone is super friendly and were so helpful when I asked for advice about what I needed post op top surgery. Highly recommend this group.

So here is what I bought and organised for top surgery pre and post op.

One of the hardest things was asking for help, I created a FB group chat with friends asking for help, I needed a lift to my pre op appointment and back, then a lift to hospital for surgery and a lift home again. I needed someone to stay at my house and look after my fur babies. I needed people to come over and help me take the dogs out, help with housework etc.

Everyone was amazing I got the support I needed, which was amazing. I had friends who took me back and forth to the hospital for my pre op appointment, surgery itself, post surgery and post surgery check up appointments. I also had friends stay at my flat and look after my fur babies, who had the best time.

Unfortunately I didn’t really have the support once I was back home, which sucked but I managed. I did have a couple of friends who came over and cooked for me, which was great but I was hoping for a little more help. Maybe I expected a bit too much, but I’ve made my peace with this all now.

I bought myself a amazon fire tablet, heaphones and microSD card, so I could download films to watch while I was in hospitals. I’m glad I bought it, it came in real useful, I watched quite a lot of films.

After surgery you aren’t allowed to shower for a while, so I bought some Clinitex body wipes from amazon and man am I so glad I did they were amazing, they made me feel pretty clean. I definitely recommend them.

I bought slippers and a dressing gown but I didn’t actually end up needing them, as they were provided but if in your paperwork they suggest them I’d buy them just in case, that’s if you don’t already own them.

I bought 2XL vest tops to wear after surgery, as it was in August and they were easy to slip on and off. I wore zipped hoodies as they were easy to get on and off too, as after you have limited movement in your arms for a few weeks. I bought the vest tops from Primark as they were only £2 each.

I am on lots of different prescribed medications and over the counter medications. I asked my GP for 2 months worth of all my meds so I didn’t have to worry to much about them and then I made sure I had enough of my over the counter medications, paracetamol, sinus rinse and vitamins.

I am on a key meter for my electric, so over the weeks running up to surgery I kept adding more then I usually put on my electric, so I knew I would be covered, same with my rent, I made sure I put extra money on my rent too.

I stocked up on basic household stuff, toilet rolls, washing up liquids, you know the boring adult household stuffs lol!

(NOTE I did a lot of stocking up no stuff! lol)

I stocked up on dog/cat food, cat litter, poop bags, treats.. again general stuff I would normally get to care for my gorgeous fur babies.

As I had a few friends stay over, I made labels for all the cupboards so it was easy for them to find stuff. I also made a list of instructions for the fur babies and just general information…yeah I said I was a bit of a control freak, which stems from anxiety.

I love my incense sticks and candles so I made sure I had them in.

I have a battery pack I took to charge my phone at tablet whilst I was in hospital, I made sure that was fully charged the day before I had surgery.

I made sure I had snacks, drinks and easy to make food in the flat. I mainly ate snacks and takeaways lol!

I bought these great hydration tablets O.R.S hydration tablets from amazon, they were great and I still use them now, especially for days I don’t drink enough.

These last few things were probably the most helpful of all.

So after surgery you aren’t meant to lay flat for a while, so I bought two V shaped pillows, two regular pillows and a memory foam neck pillow.

The neck pillow came in handy whilst I was in hospital after surgery, I used it when I was sleeping and it made the whole experience more comfortable.

The V pillows and two other pillows were great for when I was at home recovering, I spent 4/5 weeks sleeping on the sofa, as it was just the most comfortable place for me.

I honestly can’t say enough at how much those 3 particular pillows helped so much.

So for me that was is really, I’m pretty good at self care and looking after myself, so that part wasn’t too hard.

I couldn’t have done it without spending months of organising and planning, without the people who helped me.

If you’ve found this helpful, please feel free to share and use this as a guide to going through top surgery.

Peace out

Zak

Psych app!

So a few months ago I asked my GP to refer me to the my psychiatrist and I was meant to have an appointment last month, but I had to to reschedule.

Anyway I had my appointment first thing this morning. 9am… why do they book such early appointments lol!

I felt fairly awake this morning though, so it wasn’t too much of a struggle and I had enough energy for to get the bus up there.

I didn’t have to wait too long before I got seen.

I knew what I wanted to say and what I wanted from the appointment. I think that always helps, to have an idea of what you need/want etc.

So I told him everything that’s been going on recently and what I’ve been struggling with. About the anxiety, depression etc.

I said I would like to maybe do DBT again, maybe not the main therapy group but maybe the group people do whilst waiting for the main therapy.

I also said that it’s been 6 years since I finished DBT and then there’s no follow up. And he thankfully agreed that it would be a good idea, he also gave me Trazodone to help me sleep better and hopefully it will help with my anxiety too.

My next appointment is in 3 months and then I’ll have an appointment with Deirdre, she heads up the DBT group.

I last saw my psychiatrist January 2018 and I wasn’t open, I didn’t know what I wanted or needed and I didn’t want to be there. So nothing happened as a result, but I don’t think I was ready.

This appointment was different from most appointments I’ve had there, because I wanted to be there, I know things need to change and I know I can’t do it alone. I’m ready for the extra support and I need the extra support.

I’m glad I have things put in place for now and after my surgery in August. Feeling pretty proud of myself 🙂

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

*Insert*Title*Here*

I don’t often write in between my weekly transition blogs, but I feel like I needed to write today, I got things I just need to get out and maybe it will help me make sense of everything.

It’s probably gonna come out a bit all over the place and scattered, but that’s how my brain is feeling at the moment. It probably won’t be strictly transition related but a bit of everything that happening in my life at the moment, so transition, physical health, mental health, family etc…

I can’t even remember the last time I just wrote a regular blog entry, must have been a while ago now.

I literally don’t know where to even start… Ok I’ll start with the good stuff going on, so I can get into the flow of things and unpick my brain as I go along.

My name change is all official now, which is really awesome and feels so good. I am now legally Mr Zak Dyllan Mills! Woohoo! I’ve already changed it at the bank and the doctors and I’ve written some letters too, they just need posting. It just feels really right and just the next part of my transition, I feel much more like me now. Which probably sounds weird as its just a name but for me a name is quite an important part of my identity and how the world views me and how I view myself. So yeah feeling pretty awesome about that.

Last Sunday my new little nephew Alex came into the world, weighing in at 9lbs 3! the lil fatty lol but he’s so damn cute. I already had cuddles on Tuesday with him, he was just so content just laying on my lap fast asleep, he’s so chill. Proud uncle to 3 nephews, which is insane! the eldest will be 9 this year, its just flown by so fast. I absolutely adore all of them.

Physical health hasn’t really been too great this year, I’ve had infection after infection. Over the new years I kept getting nose bleeds, I then had a sinus infection, then last month I had a ear infection and at the moment I’ve had a chest infection for about 3 weeks and I’ve had lots of really bad nose bleeds as well. So I’m not sure what’s really going on, but I went to Southampton hospital this week and he took some blood to see what was happening. As he didn’t want to up the cellcept and make me more immuo-suppressed just in case its just been back luck that I’ve been getting ill and not due to my Churg Strauss Syndrome playing up, but he can’t tell until he gets the results. I’m hoping I’ll hear about the results soon and I’mm also kind of hoping its just been a bad run of luck getting ill and nothing more serious then that. But when nose bleeds are involved I know its more likely to be my condition as nose bleeds were one of my first ever symptoms. I’ll just have to see what happens with all this… I am hoping its nothing serious, I’d rather not up any medication if I don’t have too.

My mental health has been a bit of a mixture recently, its been quite difficult to deal with and I know its made me a bit harder to be around as well. Its not really been the bipolar that I’ve been struggling to control, although fighting with the depression and bad thoughts some days seems like the easy part of it all. I’ve been really struggling with the gender dysphoria, it hits so hard and its overwhelming and intense beyond words. The slightest thing can kick it off and I feel like I have zero control over it, which in itself is kinda frustrating and a bit scary.

Its my chest that is causing all the distress, anxiety and stress. I want top surgery so bad. I’ve never liked my chest, its always made me feel uncomfortable and embarrassed. When the dysphoria hits, I feel so detached, I feel like a ghost, I just want to be as far away from myself and my body as I can get, so I just disassociate but then I find it hard to get back in my body again. It really effects my mood, it makes me feel so depressed and really agitated because I’m not comfortable in my skin, because it doesn’t feel like it belongs to me, its never really belonged to me. I know I have to do some work around acceptance of self etc, as I know surgery will not fix all the emotional stuff but it will ease it. But right now that seems like a big thing to work on by myself.

I’m already starting to stress about summer and the warmer weather, as I get hot easily so it wont be as easy to cover up while remaining comfortable. I’m already aware that its gonna cause me a huge deal of stress and anxiety and it may make me less likely to go out far, I’m already anticipating how I’m going to feel, be etc… So I don’t know how I’m going to handle that and get through it.

Not being able to bind my chest makes it all the worse, I think maybe if I could bind that would take a bit of anxiety and stress out of it, I’ve been still trying on the high impact sports bras as they were the most comfortable out of everything I tried but its still not comfortable enough, especially with my chest problems I experience anyway. Its just so fucking frustrating! and doesn’t seem to be getting any easier to deal with, but the longer I’m on T the worse its getting to deal with and most days I feel pretty agitated and anxious. Its not so bad if I’m just at home and not really going anywhere, but as soon as I’ve got to go out for any period of time, especially on my own then I feel so self conscious, agitated and anxious.

I feel like I’m stuck in a limbo, like life can’t move forward right now and I know I’ve stopped moving forward, I wouldn’t know where to go now anyway. I just feel stuck, waiting for life to start again but I can’t find the button. I know I shouldn’t be waiting for top surgery but that’s what it feels like, I feel like after that then my life can start going again, where too I don’t know. I know my life can be better then it is right now, but I don’t know where I’m going, what I want, what direction, what I should or shouldn’t be doing… I’m in a rut and I hate it. Desperately trying to find things that make me really happy and not much is making me as happy as before. I mean I’m not totally unhappy, but I know things can and should be better, I just lost the drive to find it, I feel lost.

Ok… so maybe I needed to write this a more then I really realised but feels good to get it all out, I can breathe now. Been feeling mostly ok today, as I’ve stayed close to home, I’ve only been out to take the dogs for a run. Have felt so so tired today, I’ve just been chilling and looking after myself. I also finished writing out my ESA forms, I just need to get my paperwork together and then Monday I can post it all off recorded delivery, so they can’t say they didn’t get it. But I’ll sort that out on Monday I think, gonna spend the rest of the weekend just relaxing and looking after myself.

That’s it for now, am getting hungry…bloody steroids lol! Gonna go cook myself some food, although I’d really love a take away but money is low.. so cooking it is lol!

Peace out

Zak

Trying to survived in a messed up system

Where to even start?! I suppose I’ll start with the GP appointment I had on Friday.

I had written some notes down the night before so I could just hand it over to my new GP. It was hard to write as it made everything real, it made me feel vulnerable and exposed. I was already feeling vulnerable and exposed, because on Thursday I was open and honest with someone about how I was feeling and what has been going on and that was really difficult. But I felt heard and I felt cared about.

I walked over to my GP surgery, I hadn’t eaten anything so I was feeling dizzy and sick. I felt so anxious, but I had my notes I’d written down, I’d also brought some blog posts that I had printed out and my wellness journal. My new GP called me up to her room, she came across as quite abrupt, unemotional and not particularly empathetic. It didn’t make me want to open up to her, I just gave her the notes I had written and she read them.

She asked me what was the main problem at the moment.. um like everything! I started with the cellcept, I said to her I am not sorting it out with Southampton, I don’t have the capacity to at the moment, I can’t deal with anymore bullshit right now. It isn’t my responsibility to sort out funding for a medication that I take. They approved my last prescription, so I have two months worth but she didn’t seem like she was going to do anything about it. But whatever..I really don’t care.

She then asked me about my physical health and she examined me, I was so on edge I freaked out a bit when she wanted to listen to my chest. I don’t know why they can’t just do it on the top of my t-shirt and why docs have to actually put the stethoscope on my skin. Because she didn’t make me feel at ease, I was so freaking anxious, it was almost like I felt threatened. I really didn’t want her touching me, it felt so invasive. The weird thing is I am so used to having my chest listened too and never usually freak out.

As per she couldn’t really hear anything but said there was a slight wheeze, my temp was up slightly too and my throat was red. She said its viral but gave me a script for antibiotics anyway.

Finally got around to talk about my mental health, which was the main reason I was there. She asked me some questions but she was so cold about it, she asked me to show her my self harm! I out right refused! in all the years I’ve self harmed which is a really long time, not once have I ever been asked to show where I cut. I was so fucking shocked, she acted like she didn’t believe me. She asked me a few other questions, but I had just shut down by this point I could barely talk. She just didn’t really care and just referred me back to the community mental health team, although I don’t know how long I’m going to have to wait to see anyone… but whatever.

I left this appointment feeling worse then ever. I got home and just sat and cried.

Later on in the day I got an email to say my medical records where ready to pick up and that they would be £10 instead of £50. I walked back into town, got some money out and went back to the doctors. I asked to have a look at these so called ‘medical records’ before I paid for them. But what I found made me so fucking angry, upset and frustrated. These so called medical records, where just printed off from my online records, which I have already stated several times are inaccurate! and there are huge chunks of my medical history missing. Like WTF?! this isn’t what I asked for. There was a few letters in there but only a few and they only go back till last year… Non of these shitty online notes are detailed enough, they’re all coded entries. So will make no sense to anyone other then doctors! The surgery knew what I needed it for! Yes I can use the letters but I need way more evidence, its far too little. Last time was fucking horrific! and the main reason was due to lack of evidence, I don’t want to go through it all again. I can’t go through it all over again.

I was so upset, I was already feeling like total shit from the appointment with the GP in the morning, that I just couldn’t hold myself together and I started crying in the doctors reception, while the lady was sorting out a receipt for me. I decided to pay the £10 as I can use a couple of letters, she suggest I write what’s missing and book an appointment to see a doc to see if they can find what’s missing on my notes.. but that’s a waste of time. There’s huge chunks of stuff that’s missing, so I’m going to speak to patient advice liaison services and see if they can advise me on what to do next.

I am so emotionally drained, I don’t have an ounce of energy left to keep fighting for my life. I feel like I’m just fighting for my survival every day, getting by on a minimal amount of food, because I’m just not hungry. I wake up feeling anxious and lost, I go to bed feeling the same way, there maybe brief moments of relief in between.

I read my GP notes after my appointment, she wrote that I denied being suicidal… I didn’t deny anything because I’m not suicidal! I’m depressed and she writes that I said my cuts are superficial, which they are but to me she’s written it like she doesn’t believe me because I refused to show her. Anyway this is what she wrote.

IMG_E6046

That’s it for now, I needed to get everything out of my head.

Peace out

Dyllan

 

Update – I’ve not written in forever

I haven’t written my blog for about 4 months now, mainly because my old laptop SUCKS! So I since have gotten myself a nice new laptop, it’s a gaming laptop and its a good spec for what I want it for and a decent price too. I have it on tick so paying it off monthly.

Jeez so much has happened in the last few weeks let alone four months. I’m not going to cover it all right now, but I’ll write the basics of what’s been going on and then I’m going to start writing more regularly again.

I don’t even know where to start right now, ummm ok I’ll start with the gender identity stuff. 6 weeks ago I went to the Gender Identity Clinic in London to see the psychiatrist, he was super nice and we talked for about an hour. He gave me the 2nd yes I needed to start testosterone. I was flying high that day I can tell you, I was so happy that finally things are on the move and I’m getting to where I want to be. However I am still waiting on the letter for the GIC about starting T, which is pretty frustrating it’s like dangling a carrot in front of a donkey. But I’ve been ringing up every 2 weeks and tomorrow I’m going to ring up again and chase up the paper work so I don’t get forgotten. I know they have a 8 week backlog of paperwork, which is why I need to keep chasing until  I get my paperwork sorted. I’m starting to get impatient now, I just wanna get started on my new journey. I feel as though I am in some sort of limbo just waiting, not really anywhere.. just here not really anywhere. I do also have some levels of anxiety about starting T, I’m anxious that it will make my bipolar harder to control then it already it at the moment. I’m anxious about my chest, as I don’t/can’t bind my chest.. so yeah that’s my biggest anxiety really. Anyway that’s the basics of that aspect of my life, just waiting.

Physical health stuff is doing alright with my new med regime that I started earlier on in the year. The only thing I stopped is the steroid nose drops, as they gave me a migraine every day. I’m not having any side effects from the mycophenolate which makes a nice change and physically I’ve been feeling alright on it. I’ve not had any sinus infections yet, which again is such a relief as pretty much all of 2016 was one big snot fest of a sinus infection, that was my punishment for stopping methotrexate against the doctors wishes.

Mental health stuff…where do I start with this, its been a hell of a 3 months regarding my bipolar. As soon as it became sunny my mood went up but I didn’t think anything of it really until a week or so ago my mood crashed. Looking back on it I was having a hypo-manic episode, it’s not as bad as a manic episode its like a level down from a manic episode. I think I was more annoyed at myself for not seeing it sooner but it is what it is I suppose, I think it took me by surprise a bit.  But on the plus side I got loads of stuff done, made some awesome memories and that so it wasn’t all bad. The come down have been pretty fucking shit though, some days I’ve been so depressed I just wanna die, although I haven’t felt suicidal I just didn’t want to exist any more. Other days I’ve felt really agitated, angry and just really on edge but with loads of energy so I think that’s been a mixed mood state. One day the agitation was so bad that I cut myself… but I don’t really remember much of that day or what happened it was a bit of a blur. I’ve been dissociating a lot as well, so I don’t remember a lot of things that have happened, some days I can’t even remember if I’ve eaten or not. I have big gaps of time missing and trying to recall anything is really difficult and that’s super frustrating. I find the dissociation the most difficult to deal with above everything else. I feel so absent like my body is just floating along and I’m above it with strings like a puppeteer moving the shell of my body along through the days and nights that just merge into one. Even writing this is difficult as my mind keeps wandering off into space somewhere.

This past few days I’ve just taken some time to myself to look after myself and my needs, I’ve slept lots, upped my meds, ate sort of well and I’ve just binged watched tv and played with my fur babies. I think I’m starting to feel a lil more human but I don’t want to get too excited about feeling alright.

I forgot to mention that I started Slimming world 14 weeks ago and I’ve lost 1 stone 3 lbs. Super proud of myself, I never thought I’d be able to lose weight in a healthy way but I have and I especially never thought I’d be able to sustain the weight loss on all the medication I’m on. Highly recommend Slimming world to anyone who wants to lose weight in a healthy way.

So yeah that’s me really in short, there’s probably tons I’ve missed out but I think I’ve gotten the most important things down. Now I have a nice new laptop that takes seconds to start-up, I’m going to write far more regularly than I have been.

Peace out

Batman

Psych app – Not where I want to be but where I need to be

Thought I would write a quick update from my post the other day as I had my psych appointment this afternoon.

My appointment was roughly 10 minutes long, barely that I would say. I wasn’t able to actually express myself properly and how bad I’ve actually been feeling, I was able to say my mood was low but that was about it. So yeah he really didn’t get the extent of what I am feeling right now.

He didn’t want to try me on Lamotrigine, he wanted me to see how I felt after the tribunal for benefits. He so didn’t get that I didn’t want to go to this appointment in the first fucking place! It took a lot for me to ring up and book an appointment as I feel like I’ve failed!

But I put my foot down and said no I really want to try it, even if its for 6 months just until I get back onto my feet again. So he reluctantly gave me Lamotrigine to try and I am glad I was able to put my foot down and get what I wanted.

I left feeling really fucking angry, mainly because I just felt rushed and that he just didn’t understand me at all! It took a lot for me to go there in the first place let alone say yeah I’m really fucking suicidal all the time…

But whatever its done, I got the meds I wanted so I shouldn’t hang on to it too much.

My OT rang this morning and she has done the paper work for me to get a social services blue pass so I will be able to renew my bus pass without waiting for PIP results, so I feel a bit more relieved about that I just hope it comes through quickly.

I’ve also decided to go on homeswappers just to see whats available, because if I leave it up to the council it could take forever, after all 1% of people are being adequately housed right now..URGH!

Oh my ESA assessment on Mon went well, the lady was a nurse and it was all over fairly quickly. She was really nice and totally understood my situation. So I am hoping I will here pretty soon.

Not really sure how I feel, I’m trying to let go of the anger about my appointment and just get over it but easier said then done right now.

So yeah I’m not where I want to be but I am where I need to be

Peace out

Batman

I feel into the darkness

A month ago since I last posted and I was attempting to write more regularly but life and my poor mental health has kinda got in the way and to be honest I don’t remember a lot of the past month. I know I’ve had a few good days with friends and my brother but the rest of the time has been pretty dark. I recently spoke out loud to someone about how I’ve been feeling so yeah now its like real so I can and need to talk  about it.

So I suppose I’ll quickly update about benefits and stuff..

Tomorrow is my ESA face to face assessment, so not looking forward to it but luckily I have someone coming with me. But I am still super fucking nervous, although I have heard ESA isn’t as hard to get as PIP.

I have my PIP tribunal on 23rd of this month.. which I am really not fucking looking forward too! proper freaking out! But again I have an awesome friend who is coming down especially to come with me. He is awesome.

I had a letter yesterday to say my bus pass will run out in a months time and if my PIP isn’t sorted by then, then I will be unable to renew it and I won’t be able to get to any groups or appointments. But I have emailed my OT about getting a social services blue card so I will always be eligible for a bus pass. Definitely not a stress I need right now.

Health hasn’t been great, had a sinus infection which went to my chest and out of hours and a&e wouldn’t help me… which they usually do! So ended up waiting to see my GP and he gave me a steroid injection in my bum and it made me feel so much better, energy wise anyway as I literally had no energy to get out of bed. My referral to Southampton has been sent! So I am mega happy about that and cannot wait to be seen by someone who’s got a clue how to treat me and will actually fucking listen.

I am off Tramadol altogether now which is great but the Gabapentin has caused me to gain a stone in weight, which has gone to the places I want it the least, my chest, stomach and hips and because I’ve not been well, I’ve not been able to get out and exercise and because my moods been low I’ve been binge eating… which makes me feel even fucking worse.

That brings me to the my mental health.. Well its not been fucking pretty I can say that for sure.

I thought I was doing ok but only because I was keeping my true feelings inside and not really being true to myself and probably lack of insight as well didn’t help. But I’ve not been well for months, I’m just an expert at hiding it well.

In Oct when I had a bit of a manic episode due to lack of sleep, it did take a few weeks to recover but then I think I was doing ok, from what I remember. (memory at the moment is so poor) I was fairly stable and coping with everything ok.

When my money first got cut in Feb, I was like ok this is fine, I’ll cut the bills where I can, change my outgoings where I am able to etc and I will just make it work and that was ok for a bit.

As time went on it got harder and harder, my physical health got worse, I was more isolated then I ever have been before and my mood became lower and harder for me to control.

So right now I am in a place where I am struggling to stay or be grounded because I keep disassociating all the time, to the point that I am losing hours of time just by sat staring into space, so if I have an appointment I have to set like 6 alarms just so I get out of the house on time but usually once I’ve had a shower and I’m back in my body again then its not too bad. But its so fucking difficult to deal with on a daily basis, its so fucking draining.

That I can sort of deal with though but what I am finding harder to deal with is the depression, the suicidal thoughts which are fairly fucking regular and the self harm thoughts, which are so strong and I’ve gone as far as going to the shop to buy razor blades, I did manage to walk out without any but that took every little bit of strength I had left that day and its something I think about doing every day because nothing is giving me the release I need! Even writing about it my whole body is just itching to do it! Trouble is at this point I wouldn’t be in control of it or myself…I probably wouldn’t want to stop once I started either.

So yeah right now I am in a really fucking dark place and I cannot get out of this myself, only medication will help and I refuse to up the Quetiapine! So will ring the mental health team for an appointment to see if I can try Lamotrigine as that is a non weight gaining medication. I really don’t want to as I feel like its going backwards once again.

I feel so helpless, fucking useless, hopeless and like I really don’t give a fuck anymore and for me feeling like this is not good, especially with the disassociation, that’s when really bad things happen because I am not aware and I am not in control.

It’s a scary place to be, I used to love feeling out of control because that’s all I knew for all my life, then I got well and I liked that even more because I felt some level of security in that.

Just hope my psych can see me this week..

Peace out

Batman

Catching up again – Staying afloat

Once again its been about a month since I’ve written anything, it feels much longer though. I am going to try and write more regularly this month and hopefully I’ll get back into the swing of it again. I really enjoy writing and I’ve missed it but I haven’t had much to blog about really as nothing much has changed, I’m kinda just stuck right now, nothing has really changed, nothing has moved forward, I’m just still waiting and its all out of my hands, there’s nothing I can do. Its frustrating but it is what it is I suppose.

I’ll get the B word out of the way… Benefits, PIP. I am still waiting for a court date and it should be around September when I get an appointment through. So that’s that… this has been going on since, September 2015! I am absolutely disgusted by this entire process and to know I am not the only one going through this makes it worse, because I know I am strong enough to deal with whatever life throws at me, but there are those that aren’t as strong and have killed themselves as a result of being deemed fit to work. My heart hurts for those people… I’ll end it there or I will just keep writing.

So gender clinic and gender stuff – I wrote Charing Cross a letter with my new NHS number and I asked if I was going to be seen soon. I’ve not heard anything back yet..that doesn’t overly surprise me. My referral was done last July and the then waiting list was 13months so I will hopefully get an appointment next month! Fingers, toes and tits crossed everyone!

I have totally given up on binding, I simply can’t do it. I’ve tried 2 different brands of binders and a high intensity sports bra, they all worked great but I can’t deal with how they feel, the tightness, the material, the fact they make me hot and they hurt. It’s all just too much and I can’t deal with it, it makes me feel weird just writing about it. It fucking sucks! It makes me feel like shit, just a daily reminder that I’m not even close to being who I feel on the inside. While I am out and on the phone, I get misgendered and it feels like being stabbed in the heart, it makes me not want to go out and do things, it makes so fucking self conscious. I already have anxiety about talking on the phone but this makes it even fucking worse. I feel safe at home and I’ve noticed this year I haven’t done half of the things I did by this time last year. Most of this is down to my physical health being awful but even on the days I feel well, I just don’t want to go out and face the world because the world doesn’t see me the way I feel inside and its hard. So I have been hiding away more then I usually do and if I do go out, its with people I feel safe with and to places I feel safe to go. I get more excited at the prospect of staying in and doing my own thing then going out and doing stuff… But it is a fine balance of staying at home feeling safe and completely isolating myself, which is difficult. I think staying in and feeling safe is the most important thing for my mental health at the moment, I need to keep myself safe.

Physical health stuff – I saw my Thoracic medicine doc last month and he’s happy with my breathing test results, as they have remained unchanged for a long time, so he’s discharged me. But I can be referred back if I need to be. I am happy with this, its one less appointment to go too. He looked at my CT scan of my sinuses and my left side is so inflamed and the inflammation is just less then a inch from behind my eye, which explains why I get a lot of headaches and why that side of my head always hurts so much. I see my ENT doc this month, so I will be able to discuss more with him about my awful sinus pain etc and hopefully we’ll be able to come up with something that will be able to help it. I don’t even know what the options would be to make this better, right now I’d say yes to whatever he suggests.

The Gabapentin is going well, I have put on 10lbs which really bothered me at first but I don’t care anymore. I have gone past the stage of feeling the need to eat all the time, so my appetite has returned to being somewhat normal again. I am sure the weight will fall back off again. Coming off the Tramadol is going well, I am now down to 5 tablets a day down from 8 a day. It’s been really hard, as it caused insomnia the start with and it made me clench my jaw so hard it gave me migraines. That’s all starting to get better now, the insomnia is a lot better. I’m not waking up several times a night and I am actually sleeping right through, I am loving being able to sleep all night again. The jaw thing is ok now most days but if I don’t take my Tramadol right on time, then I really start clenching my jaw and it hurts so bad but its out of my control, I try and stop doing it when I notice it happening but it doesn’t work. Overall I am pretty happy with how this med change has gone so far and I am hoping that the Gabapentin continues to work well on its own.

The practice manager at my doctors surgery is still on the case to get hold of my notes, from the mythical place they go to when you change your gender lol. I hope this is sorted soon.

My knee has been alright since the steroid injection and I think the Gabapentin has helped as well. My over all pain levels have been far more manageable on the Gabapentin, well as long as I’m not doing a lot.. As soon as I do “normal” daily life stuff and social stuff, I ache a lot and the fatigue kicks in.

So that’s me really, still feel like an anxious, emotional wreck. I don’t know how I keep going but I do, somehow. I just keep trying to find the little bits of positivity in every day and every situation I come across.

I’ll wrap this up now,

I’ll try post again soon.

Peace out

Batman