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

In the the darkness he follows me

I’ve not sat at the laptop at this time of night for a long time but I feel that I probably won’t sleep well tonight, I didn’t last night so pretty pointless in going to bed just yet. I still have adrenaline running through me, I feel agitated, somewhat anxious and generally just fucking shit.

I’m going to start with the poem that I quickly jotted down last night before bed,

I was trying so hard not to fall into the darkness, that I didn’t notice I was already there.

Deeper and darker then ever before

Scrambling around trying to figure out who I am, where I am and how the hell I get back out.

Soon enough the calmness comes, knowing if I want to get out I have to fight some how or accept that this is where I am for now.

Am I scared? Yes

Do I want to fight? No

Will I? Maybe

The darkness makes me forget things, it disconnects me from myself and its plays tricks on me

I am no longer in control, the darkness is and it wants to keep me here.

So yeah, that’s pretty much how I was/am feeling. To say today was ok would be a lie, it was pretty crap but its no ones fault its just how it is right now. I am just so filled with darkness, it has pretty much swallowed me whole and there’s nothing I can do about it.

This is the poem I wrote this evening after succumbing to my darkness

My dark passenger took control tonight

I had no energy or will to fight him

So I cut my skin and watched the blood run down

The relief is short and sweet 

I want to do it again and again and again and just not stop

It’s who I am, he’s apart of me and I like it.

Do I feel better for cutting? A bit

Will I do it again? Possibly

Am I beating myself up about it? No, usually I would but I am at the point where I don’t give at fuck about anything right now, so yeah I cut and what?!

I feel very defensive and shut down because I am trying to protect myself from further hurt, stress and whatever.

Don’t really know what else to say, there’s nothing else to say really.

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