Christmas and New Year 2020 Round up

Wow what can I say about this year… It certainly has been a wild ride, I’ve had to learn how to adapt quickly to new situations and be ok with the things that are completely out of my control and I’ve had to learn how to be ok completely on my own, which has been incredibly hard but interesting.

I’ll jump back to Christmas before continuing with the round up of the year. I thankfully was able to spend Christmas and Boxing Day with my friend, which was good fun. I got some great presents, I cooked a delicious roast dinner, we went for a walk, watched movies, ate and played games. I really had a good time, it was very much needed after such a crazy year.

Yesterday it was announced that we are now in Tier 4 which means sadly my friend can’t come over for New Years.. but thank god for technology! We’ll still be able to chat which won’t be the same but it’s the safest way.

Oh on the 19th Dec disability benefits decided to send me assessment forms! Absolute assholes! They’ve got to be back for 13th Jan, which just isn’t long enough. So I rang up for a time extension.. although its not much better and I booked myself in for a form filling service because I’m not doing it myself, its just too stressful. So all I really need to do now it gather evidence to send off with my assessments. I really don’t understand why they’re assessing me every 2 years, its not like I’m suddenly going to be healed! But whatever… they’ve extended my money until Oct 2021 so hopefully non of my payments will stop which will take a lot of stress out of the situation… But yeah URGH! they suck!

Speaking of my health, this year it has definitely got worse. I not only have Granulomatosis with Polyangiitis, but I have high blood pressure and borderline under active thyroid… and my fatigue has been so bad that my whole body sometimes feels like jelly and I feel so shaky and sick. My fatigue hasn’t been this bad in years and its just so awful, whatever I do I have to have a sit down and rest afterwards, which is really frustrating. I can’t even really explain how bad my fatigue is some days, but I really hate it so much.

Other then all of that I’m actually mentally feeling alright, I’m getting used to being on my own for very long periods of time, not being able to just go out and do anything. It doesn’t really bother me now, earlier on in the year the lockdown and all the change that came with it was extremely stressful because I wasn’t really sure what was happening, what I was/wasn’t allowed to do. But now I feel like I’m more settled, I’m used to not doing the things I would usually do and being home more. I mean in the winter I’m home more then I would be in the summer anyway, so its not so bad. Although there doesn’t really seem to be an end of this in sight just yet, but I’m sure at some point in the new year life can slowly start getting back to normal.

It’s not easy everyday though, some days I’m still finding thigs really difficult. Even simple things like making breakfast feels like a mammoth task, but I do what I always do and just push through. However I am trying to sit more and try and really concentrate on connecting with how I’m feeling because pushing through regardless is easy but doesn’t always acknowledge what you really need/want and can make how I’m feeling worse. So I do try and connect with myself to see how I’m feeling and what I need in that moment. Most of the time what I need is a nap lol! which is easy enough and its actually a good way to have a little break from everything.

I think overall this year has been a good one, despite the strange circumstances that we’ve all found ourselves in this year.

I like a lot of people have experienced loss this year, I lost a friend to Covid-19 and my stepdad also passed away this year, which I don’t think the grief for either has entirely hit me yet, but I think that’s been my brains way of protecting me in order to get through these times safely. I think the sadness and grief has come out when I’ve watched a movie that’s made me cry, which happens quite often as I’m a sensitive soul but that’s ok.

I’ve made huge progress through counselling which I am so proud of! I feel like I can tackle any friendship/relationship and relationship with myself in a much more healthy way and finally healing those deep routed trauma’s, which feels good.

I feel like I’ve changed so much in just 12 months, I am unapologetically myself and I am confident in who I am now and that feels good. For the first time ever I know myself, I listen to myself, I know what I want and need and I know what I won’t put up with and I don’t feel guilty for asking to be treated better. I don’t feel embarrassed to be seen or even to exist, I feel solid.

So 2021, I have no idea what this year will bring and I’m not going into the new year with any resolutions. But I am going to continue to heal and continue on this journey with myself.

That’s it really, see ya all in the New Year.

Stay safe

Peace out

Zak

This f*cking suck!

I don’t even know where to start right now, once again my heads in a fucking spin! I feel so full of anger and frustration. I really fucking hate my life! Now I’m not one to say that very often, I try and feel grateful for my life. But some days its just fucking impossible to remain hopeful and grateful when there’s fuck all the be grateful for.

The catalyst to all this anger is Personal Independence Payment (Disability Benefits) They gave me 4 points in each component which isn’t enough to qualify for it. You have to get a minimum of 8 points.

I’m sick to death of being ill and I’m sick to fucking death of having to prove it to the cunts that just don’t give a fuck about anyone’s life! Its so fucking soul destroying and it points out every single failing of my life, which is every fucking aspect of it.

I left school with a few GCSE grades, non of them really mean anything now anyway. My highest grade was English…I can’t get anywhere without maths. I have no qualifications in anything, I have no skills, nothing. I feel like such a fucking failure. I have nothing to be proud of other then I’m still fucking alive! Which how I don’t fucking know cuz right now I’m struggling to see the fucking point at all. I’ve done nothing! and no employer is going to employ someone who’s been on the sick as long as I have and no one will want someone who they can’t rely on 100%. I can’t even fucking drive..

I feel like I have no fucking future, no life nothing. Nothing is moving forward, everything is standing still, life is just moving around me. Everyone else is moving forward, I’m still stuck in the same fucking place, all by myself.

Just the same old little fucking loser kid that I always fucking was. Absolutely pointless waste of fucking space.

I can’t keep doing this bullshit over and over. I’m so exhausted, my heart hurts so much. I’m just wading through mud, not moving forward, just sinking further in.

Its not just job wise, I’ve literally done nothing, been no where. Just been here, doing nothing, just barely existing.

I just want to disappear and stop existing so the pain would just stop.

Just a waste of space..

Peace

Zak

Transition update – Week 23 on T

Woohoo! Today was injection day, that always makes me feel really good. Not that I wasn’t feeling good before but its just something I always really look forward too.

I update twice last week as my GP rang to say my T levels were low and I could inject every 3 weeks, rather then every 4 weeks.

He also wants me to get my injections done at the doctors surgery rather then me doing it and to be honest I’m happy with that. My surgery is literally across the road so its not far to get too and I’ve been struggling to open the testosterone bottles because I have hyper mobility, I just don’t have the power in my hands to crack them open safely. So I don’t mind someone else jabbing my in the butt.

Hopefully now I will see some significant changes, as its all been super slow and very minimal. Although some of my friends don’t agree with that, I don’t see the changes they do and I don’t feel it either. So I’ve been feeling really frustrated with the whole thing, hopefully this will sort it out but I’m still sceptical that its still going to be too low.

I’ve gotta have some more bloods in 9 weeks before my 3rd injection and then another blood test 7 days later. Then we’ll be able to see if my testosterone levels have improved or not.

Other then feeling frustrated with low T levels, everything else have been going alright. My PIP forms are currently being assessed, I so hope I don’t need to go for a face to face assessment, they’re so horrible and so degrading.

My mood has been a lot better then it was in December, I feel much calmer and more settled. Anxiety is still an issue but its not as intense as it was, its far more manageable now.

Week 23 on T

^ This weeks picture

^ This weeks video

Well that’s it for now

Peace out

Dyllan

Trying to keep it together

I decided to write today, mainly so I can get all this crap out my head and stop it from just going around in circles.

I finally managed to get onto my doctors notes… I can’t use any of it though! Its so inaccurate and just not detailed enough. I’m so angry because I was hoping I would be able to use it for my PIP evidence. But no yet another fucking obstacle has been put in my way. I’m so seriously over this bullshit already! I’m done.

In my notes it says I was diagnosed with granulomatosis with polyangiitis when in 2003, which is wrong, I was diagnosed in 2000 I only remember this really clearly because I was still in secondary school and I was ill a lot of the time and I struggled to keep up with the work. It also keeps saying I’m an ex smoker! which I’m not, I’ve never smoked. There’s just so much that is either wrong or just totally missing altogether. Its s fucked up!

And to top off yesterday I waited in all day for an Amazon delivery but I got an email to say delivery attempted! which was fucking bullshit because I was in waiting! I was so furious because I could have taken the dogs for a walk or whatever.

I was so angry and so stressed out and I just couldn’t see how I was going to get this shit sorted out. I was so close to cutting because I just felt so angry and like nothing was within my control and I felt out of control as well. I just felt so intense and just didn’t know what to do and cutting is my crutch, my go to thing to do for release. It has been for most of my life. I managed to control myself and I didn’t cut because I knew if I did I would have momentary release and then I’d beat myself up about giving in. I wish that cutting still wasn’t my instant reaction when I’m stressed out or feeling intense feelings. I have a much better control over it now but it still bugs me that its my brains default setting when things become unbearable.

I don’t know what more I can do other then control the urges, I can’t seem to change this default setting because its been like it since I was like 9-10 years old, so well over 20 years now. There’s a part of me that loves cutting so much because its a buzz and makes me feel great, hence why I’m covered in scars, but it also comes with a lot of shame a guilt and that doesn’t feel so good. Because you’re told its wrong, its not the right way to deal with your emotions etc.. but that guilt and shame isn’t always mine, its given to me from others.

Anger seems to be default mode right now, I seem to tap into it really quickly. Sometimes I can calm myself down quickly, sometimes its takes longer. It depends what’s pissed me off. Again its something I wish didn’t happen so easily, I can go from feeling ok, feeling calm, to just feeling enraged and such intense anger and frustration. Although its not like it every day, I think often it depends on how much I’ve already just dealt with, how I feel physically and what the trigger is that’s made me so angry.

Benefits make me instantly angry because claiming PIP last year was just so traumatic and so stressful and I was just pushed to the edge of sanity. So now my instant reaction is anger because I’m still not over how badly I was treated.

People shaming me for being ill and not being able to do what they want me to do on that specific day also makes me instantly angry. I will not be shamed for something I have no control over.

I’m sure there are other triggers, I don’t want to list them all. I don’t want to get rid of my anger because it often motivates me to do something to change the situation, like today I got up and I was straight onto the laptop writing and letter to the practice manager and my GP surgery to get them to sort out getting me a copy of my actual notes. I just wish it wasn’t my instant response to certain situations. I wish I was more level headed and calmer.

I feel a bit calmer and less crazy today, although as its now midday and Amazon still haven’t delivered my package I’m starting to feel more agitated because I do actually want to take the dogs for a walk today. I don’t want to sit in all day again.

Last night I remembered I was given a health journal ages ago now and I’ve never used it. So this morning I dug it out and started to fill it out for this morning, I think it will be really useful for myself and my doctors that are all involved in my care to be able to see how my day to day life really is. Often when I go to appointments and they ask me how I feel, I answer how I feel that day. I can’t remember how I’ve felt over the last 6 months and that’s another thing I’ve not really discussed is my poor memory. I swear its got worse over the years, I struggle to remember anything and nothing is in order either. Anyway I am going to make it a part of my routine to fill this in on a daily basis and build up a better idea of my over all health. It may also be helpful for PIP, I can copy the pages and print them off.

It’s going to be difficult writing down everyday what hurts and where, what doesn’t feel good etc. But I think its going to be a really important tool for myself and my doctors.

^ This is the health journal

That’s all for today, I think I’ve spilled my guts enough lol.

Peace out

Batman

*Insert*Title*Here*

I don’t usually write in between my weekly posts but I just needed to write tonight to get everything out of my spinning brain. I struggle admitting how I feel because I don’t like to feel so raw and vulnerable but I suppose in order to move forward the first step is actually admitting that you’re struggling and that you need extra support, so yeah this post will be the raw, vulnerable version of me.

My mood is so low that I have the constant feeling of dread in my chest, I almost just want to collapse into myself and just disappear and not exist anymore, though its a different feeling from being suicidal, I don’t want to die, I just want to disappear. Its hard to explain how its different.

Everything just feels overwhelming and just doing small things takes huge effort and energy in order to just complete small tasks, say like brushing my teeth. Even just thinking about it feels too much and feels its just impossible, even though rationally I know its just a simple every day thing.

I feel almost paralysed by the depression, I have to will myself to move to do anything and its exhausting.  I just want to curl up and stop existing to end this pain that I feel inside, its almost like a physical pain that I just can’t get rid of, nothing works, nothing helps. I can’t even explain this pain, I don’t know what it is, it just hurts, so much. I can feel it coursing through all of me and its so uncomfortable.

Sometimes I feel like I’m watching over myself doing things, I’m not really here grounded in reality, just floating around in a endless void. Looking at things that I know I should recognise but I just don’t. I just don’t feel like I’m here, like any of this is real, which impacts the depression because everything seems pointless.

Overwhelming urges to self harm just to get rid of this pain inside, I don’t want to do it and I know the release will be short, but right now any release would be welcomed. But my rational mind knows its not the best thing to do.

I don’t know what to do to help myself.

I know this will pass, it has too.

I know that having to make a new claim for PIP was the tipping point for all this, last time it was such a traumatic experience and it was only a year ago that it was all finally over. I’ve only just recovered from the experience of it all and the thought of doing it all over again, makes me just not want to be here because I just can’t do all that again.

My whole existence is about to come under intense scrutiny again, I’ll be talked to like I’m lying, I’ll be treated as though I’ve committed a crime. This is how the UK government are treating those of us who are most vulnerable.

I already carry so much guilt for my life being the way it is, I feel guilty for being ill with a chronic illness, I feel guilty for having a mental health problem, I feel guilty for being transgender, I feel guilty for not being able to work, most of the time I just feel guilty for even being alive. But that’s made worse by the benefits system, even though I know I am ill and not fit for employment, I still feel like I should be trying more.. I don’t now. I wish I wasn’t ill, I hate it.

I think I spilled my guts out enough for tonight. Usually writing helps me feel a bit better but not tonight. It’s just good to get it all out though I suppose.

Peace out

Dyllan

Quick catch up – Big News

I haven’t posted for a while as my head hasn’t been in the best place for the last few months or so because I’ve been dealing with so much bullshit. But a few things have changed since the last time I posted, so things are moving forward slowly.

My biggest piece of news is that I finally won my PIP case and its all sorted, which is a massive relief. On the flipside of that I have to reapply for ESA next April/May and my PIP in September. I’m trying not to worry about it too much but its hard not to as I’ve been through 14 months of hell with PIP. I am just trying to concentrate on the now and getting through this coming “Joyful” season.

So that’s my main news, its a bit bittersweet but hey such is life. My other good news is that I finally have an appointment at Southampton General Hospital to see a Vasculitis specialist in January and it couldn’t come sooner, I’ve been waiting for a long long time for this to be sorted out. I know exactly what I want and need out of this appointment, so I am almost bursting to get there and start getting the ball rolling.

I’ve also had an appointment through for the endocrinologist and that’s in March. They’ve already started me on Vitamin D tablets as my levels are really low and they need them to be at a certain level before I can start hormones. So super excited for this appointment but I know that until I come off my steroids I cannot start hormones, which is why the Southampton appointment is so important.

I think that’s all the big stuff that’s been going on over the last few months. My head has been all over the place recently, so its hard to remember things. My mood has been up and down as well but I am starting to feel a bit more settled now.

This is just the tip of the iceberg really, there’s tons of other stuff that I haven’t even mentioned but I will try and post again soon.

Peace out

Batman

Benefits saga – Continues

I’ve decided to split up my posts about my life into sections, so my posts are shorter and a bit easier to read and digest.

So as the title states this one is about PIP and ESA…Oh the joys!

Well after having to go to a tribunal, the DWP decided they might appeal the court’s decision. I am currently still waiting to hear from them.

I did get the statement that the tribunal sent to DWP but that’s all. I am really hoping I hear this week, as the wait is killing me! I just want it over with and I just want it sorted. It physically hurts, the wait is just agonising and just unreal.

The sad thing is I know I’m not the only one going through this and its heart breaking to think about all the pain and suffering that has been caused by this benefit change-up.

I feel like as a person with disabilities, I am being picked on and treated like a criminal. Even though my issues are legitimate and real, whether you can see them or not. My disabilities are there and they affect me every day.

The system certainly doesn’t cater for people with physical and mental health issues. For example, I would love to be able to work on the days I felt well enough and then on the days I need to rest then I could take off. But I just doesn’t work like that, jobs aren’t that flexible. Most jobs these days are zero contract hours, so I wouldn’t be entitled to statutory sick pay and benefits takes months or in my case over a year to sort out. Or similarly people with mental health issues, could be well for say 3 months at a time. So they could work that 3 months and then take time off to rest or if they become unwell then to get better again. But as I said it just doesn’t work like that and to me it doesn’t make much sense and I feel that it should be working this way, so then at least people who are unable to work all the time are at least paying taxes, even if it’s for a short while, not to mention the fact that it will give people with long-term health issues purpose, self-esteem and pride in themselves. I despise not being a productive member of society but we have a system in place that’s all or nothing. You are either able to work or you’re not, which is silly to me.

Well that’s my personal opinion and views on where the system is going wrong.

I am also still without my bus pass, which is making me feel trapped because I’m unable to pay for the bus with the little money I do get. I’ve emailed my OT again to get her to chase it up, as it was meant to have been processed last Monday and I should have got it last week, so I don’t know what’s going on with that. It’s so frustrating having to always chase things up. I just wish things would start running a bit more smoothly so it’s not so bloody stressful.

Anyway that’s all for now, I will post more when I know more.

Peace out

Batman

Apparently it’s not over…

Last week I wrote about my PIP tribunal results and that they had awarded me 8 points which meant I still qualify for it, well just. No I wasn’t overly happy with their decision but I was just happy it was all coming to and end.

Well I was fucking wrong to feel relieved and to think that is was all nearly over! Because this morning the DWP sent me a letter saying that they are going to request a statement from the tribunal service for them to explain exactly why I was awarded the 8 points and if they do not think their reasons are good enough they are going to request to appeal to courts decision about me being awareded PIP, if they do appeal it means they will be taking it to the high courts, which means they will still continue to withhold my money.

WTF?! I didn’t even know they could do this. Surely once HMC’s have made their decision that should be final.

To say I am angry and upset is just a total understatment, I am absolutely devastated and absolutely furious.

They simply cannot take this further, I just don’t have it in me to do anymore. I can’t keep proving over and over to these people. They have made me feel like I am a liar, that I am a criminal, they have made me depressed and on the edge of suicide.

Sat here in disbelief, I wanted to write as I needed to get some of the anger out but I’m at a loss for words. For the last year I’ve said all I’ve had to said about how angry I am about this whole situation and it just seems to keep getting worse and worse. I feel like all my rights, my voice, my dignity has just been stripped away by these people. I feel like I’ve been left in a dark, cold cell, stripped of clothing, of warmth, light, food, everything. I simply cannot beleieve our goverment is doing this to the disabled and vulnerable people, its disgusting.

2,380 people from 2011 – 2014 killed themselves after being deemed fit to work. Who is speaking for them? Who is fighting for them? Who even cares? I do not want to be a statistic BUT I fear I maybe if the DWP appeal this.

I feel the need to speak up about this but right now I am not in the right head space and I wouldn’t know where to even start.

I can’t write anymore, I feel like I’m going in circles in my head.

Peace out

Batman

PIP Tribunal Results are in…

I had my PIP tribunal Tuesday afternoon, I had my awesome friend come with me. He came down from London for the day just to help me. I was so so grateful as I definitely wouldn’t have got through it without him there with me. He also treated me to ice cream afterwards.

J and I hung out all morning, we didn’t do much just watched tv and chatted mainly. It was nice to catch up and hang out, even if we did have to go do grown up things in the afternoon lol.

The tribunal itself wasn’t too horrific, it definitely wasn’t as bad as I thought it would have been.

There was a Judge, a doctor and a disabilities adviser, the doctor seemed to have heard about my Granulomatosis with Polyangiitis, which was good and the other two were actually nice. I didn’t feel too judged by them, like I thought I would, so I didn’t feel to awful when I left.

I didn’t get their decision there and then, as they said its a lot to talk about and digest so they wanted to take their time, so they sent it in the post which I received today.

I want to list once again what my medical issues are, I wont go into how they affect me as I just can’t go through that again.

Anyway I have:

  • Granulomatosis with Polyangiitis
  • Bipolar disorder
  • ADHD
  • Hyper mobility

I got awarded PIP but I only got 8 point for the Living component and NOTHING for the mobility component. When I was on DLA I was on middle rate care and mobility, my health issues have not changed, if anything they have got worse. So how I do not qualify for mobility is beyond me. It means I have lost £100 a month as well, I do still qualify for the severe disability rates on ESA but I do not now qualify for the free bus pass, so I am hoping my Social Services blue pass comes to me very soon, so I can re-apply for my bus pass.

I am not happy with their decision but I am not going to challenge it because I have only been awarded it until Feb 2018, which means I will have to do the forms again by September 2017. Which is absolute bullshit! My conditions won’t have changed in the next 12months I will still have them. But it does give me a chance to get as much evidence as I can in that time.

So as you can all imagine I am angry but I simply don’t have the energy to fight them any further then I already have.

Once again I have a raging sinus and chest infection, I saw a doctor today but she wasn’t my regular GP as he was busy. I asked for another steroid injection, she said she can’t do another too close, its got to be 6 weeks apart really. I asked about re-starting Methotrexate just until I get to Southampton hospital and she said no…But she did give me 40mgs of oral steroids which she said would make me feel better in 4 hours of taking them but it didn’t. I did leave a message with my GP but he didn’t ring, so I’m going to ring in the morning and see if he can ring me and get something sorted, because I am soooo fucking over this right now.

Anyway gonna wrap this up,

Peace out

Batman

Let the good times roll – Things clicking into place

It’s Monday afternoon here right now and as I’m feeling OK and had a good weekend, I feel up to writing a new post.

So Friday was good, I met L and the boys off the bus in the afternoon and I took the boys over to my brothers and L went back to mine to rest as she wasn’t feeling well. We spent a few hours there and Albert and Harvey loved playing with my two nephew Jack and Leo.

My bro got my a PS4 😀 he put it on his Argos card and I’ve got to pay some of it off but not right away. But YAY! So so so happy with it, as I’ve been wanting one for so long. I love my bro he’s awesome.

Saturday was so busy and long but it was good. So it was Jacks 7th birthday and we all went into a indoor play area for a few hours. It was so noisy and busy in there but all the kids had fun. Went back to my brothers after for cake, which was nice and Albert didn’t want to leave bless him.

We got back and I picked up the post and opened it and I was jumping about with excitement! I had got a letter to say my first appointment with the Gender Clinic in London on the 15th September!! which is like 3 weeks away! I am so so fucking super excited its unreal! I am so nervous as well. It’s a really long appointment too 75 mins, then a hour and 15 mins of admin… Finally on the path to being who I really am now.

Sunday was spent my best friend, we just chilled out and watched Stranger Things which was really cool. It was a day well needed 🙂

I spent a few hours with my bro, sister in law and nephew today, went to the pub for a drink and the arcade and played on the 2p machine and won loads of lollies.

Why is it the good things always happen after you’ve given up? I’m glad that I’ve had a good few days and that I got a PS4, its really picked my mood up. I do still feel really stressed but I feel able to cope again for now.

I have PIP court tribunal tomorrow afternoon, I am so anxious and stressed about it. I can feel that its all so close to being over with now and I am just so anxious for it to hurry up and be over with already. I am glad I have my J coming down for the day especially to help me, I am so grateful for that. I should know tomorrow if they are going to give it to me or not, I am just trying to stay positive about getting the outcome I deserve.

I am hoping these good days are going to keep rolling and the good news keeps coming and that everything is now finally starting to click back into place, that this is the break I need.

So yeah I’m feeling fairly ok, feeling confident about tomorrow, although I’m trying not to feel cocky about it and I am trying to read up about the PIP tribunal as possible and I am going to make notes as well.

Well I better start sorting some notes out, so I’m gonna wrap this up.

Peace out

Batman