Monday 31 October 2011

Functionality

Well, happy Halloween again to all of you, I have been to my rheumatology clinic today. Given the effect of my RA and Fibro on me I was given a steroid injection into my left shoulder which I can move making me left side of my upper body unusable.

I am currently typing one handed as I have been told not to use my left arm/shoulder for a few days at least. Not that I could use it anyway.

I am waiting for appointments for both an occupational therapist and the physiotherapist, both of whom I met today after my appointment. I have no functionality which means I can't wash/dry myself, take care of hygiene, cook, make myself a drink or basically do the everyday tasks people do everyday.

I am looking at a lot of therapy over the next months, it could be a couple of years before I have even enough functionality to take care of my own basic needs. Then the therapists intend to help me tackle my extreme fatigue. Just to allow me to take care of my own everyday needs independently.

I was given two new 'comfy' crutches to replace the one basic one I've been using for years. I am due back with my doctor in six months instead of the usual year I've been attending.

This therapy is just to help me live independently as much as possible so that when I am alone I can live independently in my own home.

Hopefully my letters, both therapist and the clinic, will come through before the 14th when I have my first WFI as part of the WRAG group.

It's been made clear to me by the therapists that I am completely unfit for work and am looking at months and months of intense therapy to allow me to take care of daily tasks like dressing, hygiene, cooking, eating and so on. Including any special adaptions to my home I might need and any special aids I will need to start beginning to use.

Just now I am learning to use two crutches and it's like learning to walk all over again. I had the same problems when I first starting using 1 crutch.

Hopefully the DWP (and ATOS if they get involved due to my appeal) will see sense and not add to my intense workload as I learn to live with my now officially recognised regenerative condition. I am relieved to be honest as my future was scary as I can't even wash myself or cook for myself let alone everything else and without my Mother I would be in big trouble. Now the therapists have promised to help me gain the skills to help that future not seem too impossible.


Sunday 30 October 2011

Happy Halloween

Happy Halloween and more importantly Happy Birthday to my lovely sister-in-law Catriona.

The clocks went back overnight here in Scotland for the end of British Summertime, a summer we never got if you lived in my area. Two hours here and there of sunshine on a frigid cold rainy day do not a summer make.

So clocks went back an hour, so one hour longer in bed eh?! Not so for someone with my disabilities all this amounted to was an extra hour of painful tossing and turning while attempting to fall asleep. At quarter to 3 this morning I was still trying to get comfortable enough to actually fall asleep. I was awoken barely 4 hours on with a crippling back pain which I had to try and move through gritted teeth and some tears I am not ashamed to admit to ease the pain enough to rest for at least an hour or so before even thinking of getting up and starting my Sunday.


Friday 28 October 2011

An Hour?!

Just re-reading the letter from JCP about the WFI and find it can last up to AN HOUR! I couldn't believe it, I can't sit for more than 10 minutes without moving or getting up etc., and they expect me to sit for up to an hour while going through steps to return me to work.

Just great, my cousin who attends the JCP regularly while trying to find a new job - he got made redundant without warning a couple of months ago - says the interviews are on the upper levels. There is a lift, the security guard unlocks it and let's you in so hopefully it will be in order. But an hour way outside my endurance at home and I sit on a leather executive chair, padded complete with both lumbar support and arms. So regardless that is going to be some painful interview especially given the fact that I am in the midst of the winter weather flare ups. Temperatures are making me feel totally craptastic and pain at the top of the scales.

So definitely not looking forward to the coming few weeks, between hospital appointment, nurses well check up which my GP wants me to have at the surgery and now the monthly WFI starting plus any activity they decide I should do to get back to work. Strangely though I don't think there are a lot of businesses lining up to employ someone like me with my limited abilities and disabilities.

Craptastic!

Well, my relief of having written and had my appeal for placement in the Support Group due to having the very first descriptor for this group only lasted 24 hours.

I struggled home after an exhausting trip for groceries worried about the appointments I have to attend next week and not looking forward to them in the least to find a letter from the DWP had arrived.

Instead of any confirmation of my appeal or such it's my first WFI appointment at the Job Centre Plus, at the top level of our local shopping centre (hope their lift works - hope they at least have a lift no info on their site - as I can't manage all those stairs up to it) at 9.45 am two weeks on Monday.

So they obviously didn't take note of the whole not able to travel safely before lunchtime on my forms did they?  I'll need to get up at around 8 as it takes me up to an hour to get up, dressed and take my first doses of medication. Then there is the travel time to the JCP and that's not taking into account the drowsiness caused by my muscle relaxant the night before to aid me having some sleep which can last till at least 11am.

This whole WRAG is turning out to be a major pain already and I haven't attended my first interview yet.

Wednesday 19 October 2011

Appeal

Well I'm busily beavering away on my appeal to be moved to the Support Group on the ESA rather than the WRAG that I was placed in.

Had a bit of a 'duh!' moment when reading the descriptors for the Support Group for writing my appeal letter and found that the first descriptor provided for mobility (walking/wheelchair etc) applied to me as I can't mobilise the distance stated without frequent stop and rests due to pain, stiffness and exhaustion.

So that makes me more confident in my belief I should be in the SG and not the WRAG. I did an online form where I clicked the boxes and found what my points results should have been and found that I should have got 39 points total and put in the SG due to fitting one of the descriptors in the DWP ESA rulings.

That makes it a little bit less frightening to appeal the decision. I am now busy trying to narrate how all my disabilities affect my day to day life and daily activities. Including the more embarrassing details I was sure would be covered in the second part of the assessment process when I should have gotten a face to face meeting before deciding whether I belonged in the SG or the WRAG.

So I am targeting the weekend at the latest to post the appeal by registered next day delilvery so I know it will arrive before the 1 month time limit provided by the DWP. Actually according to the letter I got exactly 2 weeks ago today is when I officially switch from IB to ESA.

Fingers crossed the DM at DWP will realise that I fit the descriptors for the SG without having to go through the long elongated appeals process with the inherent medicals and other appointments it incurs. I really don't think it will help either my health or my anxiety levels otherwise.

Saturday 15 October 2011

Flu Jab

Well, Thursday I went for my usual blood tests and was given my flu jab at the same time. So my left arm is now sorer than my right at the moment. It's been murder trying to sleep as I keep feeling the pain shooting through my left upper arm every time I move or do something stupid like attempt to roll over!!

This morning I got an early (6.10 am) wake up call when I felt myself about to throw up, I managed to deep breathe through it and after half and hour or so it had abated a bit allowing me to lightly nap till it was time to get up. Not the greatest start to a Saturday morning.

After going to my brother's house to let out his two cats I had a couple of errands to run for him. Post 2 letters and pick up a members pack belonging to my eldest nephew which was now available at the football shop.

I'm having to be very careful about what I eat or drink to avoid the burning need to throw up but I think it must have something to do with me just now recovering from the virus my nephews had in the last few weeks and getting the flu jab on Thursday.

Funnily enough I got a letter from my GP informing me that the flu jabs were in and no phone in to get mine but I beat them to it. Letter was dated Tuesday and I got mine Thursday while getting my usual 3 vials of blood taken.

Tomorrow my Mum wants to go to my brother's house and give it a tidy so I'll work on my letter to go with the GL24 form so I can get it back to the DWP this week. Well before the 1 month stated in the award letter.

I was wondering what to ask, a explanation of the reason the DM placed me into the WRAG then await their response before deciding whether it would be worth appealing or not, ask for the DM to look again at my information to see if I do belong in the WRAG or the Support group. Or skip past and go straight for appealing against the decision altogether.

I'll decide in the next couple of days. As I only have till the 1st of November to contact them in either case.

Tuesday 11 October 2011

Tuesday

Yesterday was my eldest nephew's 11th Birthday, he's currently in France with his family at their holiday home, aka a trailer like home on a patch of ground. I've never actually seen it but I figure there is a park of holiday homes like this all inside their own pieces of land. It was a Christmas gift 3 or 4 years back from my brother's in-laws who own the house directly next door to them.

Anyway, still no letter about my first Work Focused Interview and it's been a week (tomorrow) since I got my award letter and 10 days since it was written. I am sending out an enquiry on a GL24 asking how the decision was made to put me into the WRAG rather than the support group. Until I know the reasons I can't appeal or decide to appeal as I need to know if by their standards if I belonged in either group.

Also I'm supposed to get 2 extra weeks to appeal if I put in for a written explanation of the decision on top of the month you get to appeal from the date of the award letter.

I will get that out and posted this week that will be over 2 weeks of my initial month to appeal plus 2 more weeks due to asking for an explanation. I'll also cover some of the reasons I'm surprised they state I *will* be returning to work on the basis of only the yes/no answers on the ESA50.

Sunday 9 October 2011

Hello

Hello and welcome to my newest blog!

Fibro Not Fiction is my blog describing how someone with disabilities copes with the welfare reforms happening within the UK at the moment and how this effects their existing health issues.

I have 3 different disabilities which I developed at far different points of my life. I was advised to by the Job Centre Plus in my initial contact about the re-assessment to describe all existing disabilities and health problems on the form and how it effects me day to day.

So the form arrived and I explained my original diagnosis of RA (Rheumatoid Arthritis) and the unexpected diagnosis a year later by the Rheumatology Clinic at the hospital of FMS/FM (Fibromyalgia) which caused me to become too ill to work. Loosing me my job of 12 years in the process. I also informed them of my pre-existing spinal deformities that were diagnosed in the teens and how these were affected by my later diagnosis as well as how they still impact on my life.

After it taking me a month to fill in the complex form due to be unable to write for short bursts before fingers/wrist stiffness, pain and cramps would stop me making me unable to hold my pen for several hours after. I sent it away and nervously awaited the call for a medical.

So after waiting more than 2 months I was sent two letters, one awarding me ESA (but placing me directly into a WRAG and telling me I have to attend a series of work focused interviews to come up with a plan to return me to work not see if I can return to work but start me back to work!), so on one hand they say I am disabled and have limited capability to work and two paragraphs down they practically assure me that I will be back in work. The second letter was telling me as I was on Contribution Based ESA that it might only be for 12 months maximum come next April when the government are putting a bill before Parliament to limit CB-ESA to this time period. Although I got it by having put in the NI contributions for the years I worked, so basically they are penalising those of us to actually worked and put into the system rather than supporting us when we most need it.

I'm not at all sure of my future. My RA and FMS are currently going through another flare up - this bad weather this year has been no aid to us sufferers as anyone who either has these diseases (or similar) or their friends/family can attest - and now I am feeling very anxious about my immediate future. I feel pressured and the anxiety I'm feeling is feeding into my FM and then my FM is making me worse and increasing my anxiety.

It's a very vicious circle with no end in sight.