Auto immune disorders suck!

My year has been pretty shit with the whole benefits thing but my health has really taken a dive this past year and all the stress hasn’t helped with that.

I keep looking back at all the things I did last summer and I feel sad because this years been a wash out. It’s been a mixture of being ill and having no money to do anything.

Yes last year I fractured 5 bones but I had a great time. Other then the fractures my health wasn’t that bad, it was manageable.

Being off the methotrexate has definitely caused most of the issues but I was put in a catch 22 situation. I either carried on taking methotrexate and just put up with the vomiting all the time or I stopped and chanced it. I chose the latter mainly because I had zero quality of life, I was sick at least twice and month and each time it would take me a few days to recover from it. It wasn’t pleasent at all and this had been going on for 2 years and I’d just had enough.

So last November I think, I decided enough was enough and I stopped it. Not really knowing what the knock on effect would be, so I chanced it. After all its better then vomiting twice a month.

The consequences of me stopping the methotrexate have been constant and horrific sinus infections, which often led to chest infections on top of that and its been a huge struggled to get it under control as I’m allergic to loads of antibiotics and one stopped working, another one gave me lots of side effects.

I stopped my antibiotics last week because of the horrible side effects, so I’m just winging it at the moment in hopes it doesn’t rear its ugly head again. But so far so good and I think its the longest I’ve been off antiobiotics this year and felt fairly ok.

Having a chronic illness is frustrating and unpredicatable, which is the worst thing because I can never say for certain how I’m going to feel until the day and how I’m going to feel after a certain activity, for example doing the housework. Some days it wipes me out for the rest of the day and other days I’m still able to carry on with my daily activies, it just depends.

I had a steroid injection in my knee again before I went up to London a week or so ago now and by now the swelling should have gone down but it hasn’t and the knee joint is bulging out still. It’s still quite painful most of the time but I’m waiting to see a physio about my kneecap. So I’m undecided about whether to wait for that appointment or make an appointmet to see my GP about it…This is my life lol! Organising what doctor to see about what and how long do I wait? Do I wait until it’s so painful I can’t walk? or go now when its just about bareable.. ARGH! Maybe I’ll chase up what’s going on with the appointment with the Physio, so I can make an informed decison.

So yeah, I’ve really struggled to keep well this year. No matter what I did nothing helped and there’s only so much resting I can do before I want to blow my brains out.

As you can imagine all of this has had a knock on effect on my mental health, because I’ve ended up being quite isolated, lonely and really depressed. I’ve even felt suicidal, with thoughts of self harm and one self harm incident. Yes that was a culmination of the benefit saga too but its all relevent. It just sucks! I wouldn’t wish my life on anyone.

I’ve kinda lost concentration now and the flow of what I was writing. So I’m going to take a break and wrap this up for now.

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

First appointment at the GIC

A week ago yesterday I went up to London Hammersmith and had my first appointment at the Gender Identity Clinic.

I’m only writing now because I’ve not really had the concentration to sit and write. For a few days after I was buzzing! Then I was struggling with being really restless. But today I’ve made myself stop and slow down and relax.

Right so back to the GIC appointment.

My friend picked up my dogs on the Wednesday night and I wasn’t too anxious about them going.

I slept really well Wednesday night, for the first time in days, which was so odd. I had a really relaxing, calm morning just getting myself ready and off to the coach station.

The coach trip up was good, it was a fairly full coach and I got a seat by myself and the plug worked so I could top up the charge on my phone. I couldn’t stop smiling for the whole trip! lol

When I got to London I had some time to kill, so I walked and found a cafe to sit in, so I had a drink and some lunch. I sat in there for about an hour but as I didn’t buy anything else and it was getting busy I decided to go for a walk.

On my walk I found a park, so I sat on the bench in the shade as it was so so hot up there. I was still feeling, calm and relaxed, not a hint of anxiety in me which felt weird but good.

The time came to walk down to the GIC, to the random brown door in the wall and to press the buzzer. I was super exited! I strolled up to the door, pressed the buzzer and said I have an appointment and I got buzzed it! WOOHOO! the first day of the rest of my life is about to happen!

The appointment itself went amazing, I was in there and just answered all sorts of questions, I wasn’t embarrassed or anything. I felt so confident and calm and yeah I felt more like myself then I’ve ever done before and it felt good. It just felt amazing to know that this is the first step to having a body that reflects how I feel inside.

After I booked my next app which is April but maybe sooner as I’m on the cancellation list! 😀 eeep! and this appointment is for a second opinion for Testosterone and I cannot express how excited I am for that! 😀

Then I had to go get my bloods done and I got lost on the way in and on the way out lol! They took loads too! Good job I’m used to getting my bloods done lol.

Had more time to kill for the coach back but I was so happy I didn’t care!

Coach was late but again I was so happy I wasn’t bothered.

Coach back was absolutely fine, I text everyone about how it went and everyone was really happy too. I just smiled all the way home.

Got picked up at the coach station by my friend and my pups 😀

I couldn’t sleep straight away I was too hyped up!

It was an awesome appointment and a massive mood boost!

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