Monday, 26 December 2011
I hope everyone's Christmas was wonderful and that you all got lots of lovely gifts which you appreciate and those you gave prezzies to were just as pleased. As for myself I knew what I was being gifted in advance from my parents, clothes and a new wireless keyboard/mouse for my desktop computer. I also knew my aunt had been busy knitting ponchos for most of use nieces so I knew I was getting that from her as well. The only unknowns were from my brother and his family where I again received clothes in the form of a new pair of boots, slippers and a woollen top from my three nephews.
Sunday, 25 December 2011
In the time of festive cheer and goodwill to all I am once again faced with the selfishness of some. My two single aunts always spend Christmas Day together for as long as I can remember. The single one would visit the divorced one and her children and spend Christmas Day with them having Christmas lunch together. This has been the habit/ritual for as long as I can remember.
Even though the children are all grown up and only the youngest sharing the family house they still spend Christmas together, so the single aunt who is older just went through a knee replacement operation a couple of weeks ago.
So the elder aunt is unable to travel across to her sister's home for the Christmas lunch so common sense would dictate the other aunt who is mobile travel to the other aunt's flat and prepare/have lunch there. But her excuse not to do this is that she would have to pay for a taxi both ways on Christmas Day which is one of the two most expensive days to travel via cab in the year.
So my single aunt has been alone all day and only got Christmas lunch because a neighbour upon hearing she would be alone for Christmas is bringing her lunch over from her house so at least she would get a proper Christmas lunch.
Never mind that the immobile aunt has had to pay the same taxi fares each way every Christmas for more than 20 years. Rather poor excuse if you ask me to leave a relation alone on Christmas Day given the many years she's spent with them on Christmas and paid taxi fares herself every time.
Unfortunately we had our own family to see to today and I'm unable to travel due to ill health and all my limited store of energy is gone with the travelling we had today to my brother's.
I think a cousin of mine finding out she would be alone all Christmas Day is going to try to get across and spend some time with her so that's she's not alone all day. Merry Christmas indeed.
Thursday, 22 December 2011
This time a unknown male physio went through a assessment which took 45 minutes to do. I was a bit uncomfortable to be honest I was expecting the female I saw at the hospital who was supposed to be my therapist along-with the OT who brought her into the case.
He asked a slew of questions and did a routine examine which showed basically what was already known. I had no swelling around any joints but that doesn't say I don't feel pain non-stop from them. At least there was questions about pain levels which I stressed were always on the very high end of the scale.
He asked if I had seen a OT, which I said I was referred to initially and it was her who brought in the physiotherapist which triggered the referral to the appointment I was attending but I hadn't got an appointment through yet for the OT. This I find disturbing as I was referred to OT not PT but this is the only assessment/appointment I've been to.
I was given three exercise for my left shoulder which was badly affected and little to no mobility and told just to keep doing my other exercise given for my spine/RA joint problems. So the PT is concentrating on my left shoulder joint and regaining mobility with it.
My entire body is hurting all over now and I'm in even more pain and more exhausted than I was before I went.
I have an appointment three weeks from Monday with the same therapist so see my progress with using these exercises at 3 to 4 times daily in sets of 10.
But then the same problem occurs my other joints are able to be manipulated easily by therapists/doctors but that's not to say I can do the same moves independently and without pain. There seems to be this belief that if there is no swelling it's OK.
I explained how my hips/back/knees were worse now than before and my severe loss of balance even worse than before and the therapist explained that my body has been dealing with RA putting pressure on these joints since day 1 and now 12 years on this is be expected. So that means my knees/hips will never get better than they are now which is quite a degeneration on when I was diagnosed 12 years ago.
He asked if I was working! I doubt an employer would take me. I don't sleep at night which I explained, wake up more tired, stiff and in pain that the night before, and it takes at least an hour to an hour and half before I have able to get relief from the extra stiffness/pain and go back to the continual stiffness/pain that stays with me all day. Standing/walking puts a lot of pressure on my back/hips/knees which make my pain worse which he accepts and understands. While sitting isn't as bad as the pressure is off these joints I can't sit comfortably for long and have to use my leather padded adjustable chair.
All in all a mixed result for me. I would a whole lot better if I would get my OT started as I belief that that will be more important the PT for my condition. He started asking what my usual day was like but I got as far as getting up and the extra stiffness/pain wearing off to allow me to go out if I need to go shopping but he didn't ask about tasks like cooking, making a hot drink, and so on that the OT mentioned, the only daily tasks he covered was getting up out of the bed when I explained my difficulties with that and showering which I said I needed help with as I couldn't get in and out of the bath safely, and help with my back and other parts I couldn't reach/do myself - the same with drying myself.
Must be the OT job to help with these tasks as they weren't covered. Only the showering problem I have was covered. Along with my problems getting in/out of bed.
Also very disappointed as the original therapist I was supposed to see was a specialist with fibromyalgia as well as RA and he didn't ask/mention anything about my Fibro and the problems it causes. Only my difficulty sleeping was covered because he asked about my tablets.
Glad to get home afterwards. Hopefully both my delivery will have arrived and my three nephews picked up by the time I drag myself home again.
I'll be glad when Christmas Eve arrives and all shops are closed, all presents wrapped, all shopping in and I can finally relax for what seems like the first time in forever ............
Monday, 19 December 2011
I ordered three shake and go cars to go with a present we bought Friday for my youngest nephew as the shop didn't have any available. I double checked before placing my order that I would get the delivery before Christmas and even paid for expedited despatch/delivery and my order has sat on Despatching Soon since Friday afternoon and here we are Monday afternoon and my order which I paid extra for quick despatch/delivery is still not been sent out and it's stating delivery estimate on the 20th which is tomorrow and still haven't despatched the order.
Frustrating to say the least. If I don't get my order through by Christmas which I paid double postage price for I will not be a happy camper.
Another order sent out Friday for next day delivery from City Link is still on it's way from the collection depot and not further update since Friday night when it was sent out to the collection depot. It must be walking to the local delivery depot that's all I can say. So next day delivery - total fail.
My last order - of the three placed last week - was split in two my Amazon and has been despatched by Royal Mail. I wonder if those two parcels will beat the two expedited ones!
Tuesday, 13 December 2011
I have to leave no later than quarter to three to get across town to the school and here I am with only a half hour to spare till this time and he says he is only now heading over to the doctor's surgery, then he will have to get a bus and walk in from wherever he gets off the bus to my brother's house as it's a fair distance away from any bus stops.
And he's surprised we're upset!!
Grr ... and they wonder why there is so much domestic problems when men don't listen, no offense to any men who actually listen and do what the say they will when they say they'll do it.
Friday, 9 December 2011
As well as at least £6 lighter in purse. It's fair to say that their Christmas Craft Fair was a success, started at 2pm and when we left with the boys at 2.40pm most cakes, sweets and Christmas decorations were almost gone.
My nephews are totally sugared up and luckily they seem to not be too hyper just yet. Hopefully any sugar high will occur when their parent come to pick them up not beforehand.
Didn't manage to get anything for my sister-in-law as I ran out of time and needed to get back to have my second doses of medication before heading out to my nephews Christmas Craft Fair.
Already exhausted but at least this is my last journey out - that I know - till Monday when I will again endeavour to battle the city centre and succeed in getting my sister-in-law's gift in.
I finished by Father's gift by getting the diabetic gift box from Thornton's which isn't available on-line for delivery so I had to visit in store. Went in for that worth around £12 and came out with £30 worth of pressies. Got a nice box of mint selection at half price and some stocking filler type plushies with chocolate penguins which I can either use in my nephews advent calendar which I will be filling up this weekend for them for when I have school pick-ups next week.
Thursday, 8 December 2011
Before anyone panics I am not contemplating suicide but if you are reading this and either you yourself or someone you know is battling such thoughts please please please reach out and get help. Nothing is worth ending it all, regardless of how you feel now, I've had my own dark thoughts and even tried ... and I stress the word tried ... similar as a teen and remembering how I felt then still terrifies me immensely. Think of the positives, if you have family, think of them and reach out there are those who can help.
I want to have a life again, where going out to something as simple as a winter craft fair at my nephews primary school doesn't fill me with dread. But it does.
The current climate towards those who you know are physically (or mentally/emotionally) disabled has made doing the simplest of daily tasks which require you leaving the sanctity of your own home nearly impossible. As well as stressful and terrifying.
Monday, 21 November 2011
After my relief about my WFI my good mood, and relaxed deposition which has allowed me to actually achieve a few hours uninterrupted sleep which hasn't happened since this whole WCA review began months ago, has come to an abrupt end.
My nerves are once again shot and building up as I now face an appeal process which could include an ATOS medical and a firing squad face to face appeal to the DWP and whoever else attends such boards.
I got a letter just an hour ago saying that the decision maker at the DWP had looked again at my WCA and other documents that he used to make his initial decision taken into account the points I made - which is ludicrous as I meet the first descriptor on their own paperwork for the ESA Support Group - and can see nothing that would make them change their decision.
So apparently meeting one of their own noted descriptors for the SG isn't good enough to allow you to actually be placed into said group?! Sounds about right for this whole process which is supposed to be fair and give help to those who actually need it.
No time limit, no information on how meeting one of their holier descriptors wasn't enough evidence to get moved into the SG, nothing except my appeal would now move onto the next stage and I would get more information on the appeals process later. Again no time frame or anything.
I had hoped that if I didn't meet the descriptor I would be informed how I didn't regardless of my proof that I do meet said descriptor.
So my happy relaxed period is now over again. I had hoped that I could now enjoy at least the coming festive season without the pressure and depression that this whole process has brought onto me but alas that is not to be. Every time I feel I can relax a bit and concentrate of myself and my health when I overcome some hurtle thrown in my path something happens to scupper it. Last time it was the less than 24 hours that came between my lodging my appeal and my WFI interview date/time arriving. This time I got a whole week where I didn't suffer nightmares, depression and nerves before I now get this appeal hurdle - my biggest hurdle yet - thrown in my path wrecking any inner peace I've achieved in the past few days.
Monday, 14 November 2011
Well D-Day - as in the day I've been dreading - is upon me.
Tomorrow first thing is my first WFI with my personal advisor who I only know by her first name supplied in my letter from the Job Center Plus.
I didn't manage to get my hair washed today as my mum's back was too painful and stiff to bend over.
If my hair looks too greasy I will resort to my emergency can of dry shampoo so I don't go out with greasy or dead and dull hair.
I sincerely hope that the advisor I've been given doesn't turn out to be one of those Stalin wannabes that I've heard about who ignore all evidence of illness or disability and steamroller you (and in some cases threaten or intimidate) those they are supposed to be simply providing options for their possible future possibilities into any scheme like workfare regardless of their medical and health at the time.
In some ways I just want this over and in others I don't want it to ever come around.
Quite frankly I'm a complete nervous wreck at the moment and expecting the worse starting by being forced to sit listening to a total stranger dictate my future while sitting in a uncomfortable plastic chair for an hour.
Saturday, 12 November 2011
My mother who is attending this stupid WFI with me first thing Monday morning is insisting on washing my hair tomorrow so I can be 'all neat and tidy' for my appointment.
I'm not so fussy to be honest. My hair is clean and non greasy and doesn't need it in my opinion and as I pointed out to her the more effort and dressy I attend as could backfire badly on my claim as I can't do this for myself, let alone on a daily basis as mentioned on my claim forms and turning up like I'm attending a job interview would be misleading on my actual circumstances.
But she's insisting that's better than showing up scruffy - which I assume she's saying my normal appearance is - will make my advisor think I'm too lazy to dress as I should when attending appointments.
Can't win, can I?
As I am relying on her to accompany me as a witness as well as support I have no chance of changing her mind. I will get my hair washed regardless of my physical condition tomorrow but I am intent on dressing only in my usual comfy clothes as regardless of the terminology my mum uses this isn't a interview that I see necessary to dress up for.
Especially if I can be expected to sitting in an uncomfortable chair for an extended period. Something I am unable to do in the most comfortable of chairs let alone those found in JCP offices.
Well I've moaned enough about my appointment on Monday for today, one last thing to mention before ending my posting for today. I got an appointment through for the physiotherapist today, no sign of any for the occupational therapist yet. Rather stupid to send a physio one through before I'm fully assessed which was supposed to be this month in a dual appointment with both therapists together where a therapy course would begin to take shape before I started the actual therapy courses.
But then this first physio isn't till December the 22nd so there is plenty of time for my dual assessment appointment to be sent through before my first physio date arrives.
Friday, 11 November 2011
Well it's now Thursday 10th and another day closer to my first WFI (Work Focused Interview) at our local JCP (Job Centre Plus) which is this coming Monday (the 14th) at 9.45 am.
As well as struggling from the nearest disabled parking spot and the early time I'm not looking forward to this meeting at all. The form and initial phone call I received at the start of re assessment to move me over to ESA it was made clear I was unable to begin functioning before 11 at the earliest due to my diseases as well as my medications and they give me an interview over an hour earlier.
Also I can't manage to walk more than a dozen steps without stopping due to pain, fatigue or in most cases both. The nearest disabled parking is quite a distance for me although the shopping centre the JCP is housed in has a car park with disabled parking the hourly charge is too much for me on my limited income especially as this interview can take up to an hour plus the time it would take me to travel to and from my car could take be at least an hour combined for me to walk said distance.
Once I make it to the entry to the JCP I pray frantically that the lift is working OK and there isn't too long a queue to use it as it only holds 3 or 4 adults at a time and I can't walk up the 5 or 6 flights of stairs to the actual office.
Once I wait my turn I can look forward to up to 60 minutes sitting, or in my case moving painfully about in a chair when I am unable to sit for more than ten minutes at any given time in my own luxury padded leather chair at home.
The only light at the end of my tunnel is my cousin attends interviews with his advisor regularly and says although his letters mention an hour he is generally finished in about half an hour each time.
My assessment with my hospital therapists haven't come through yet but my check up with my specialist has for May 10th.
So I'll only be able to tell me advisor Marion about what the therapists said at the hospital last week, mentioning my injection and other concerns that my specialist and therapists had when attending.
Still no response to my appeal which I put in exactly two weeks ago yet but not so surprising given the backlog on appeals lodged so far. Another person who appealed on a board I belong to put in his almost two months ago and has also heard nothing back yet either.
I'm ready to call it a night now and try to get some sleep with try being the objective word here.
Thursday, 3 November 2011
I am still experiencing a lot of shoulder pain (and elsewhere) and am finding using my keyboard/mouse very painful and slow.
Usually I touch type and don't actually look at my keys now typing on one hand only has me looking at the keys to find each one I need, nearly impossible to do as several of my keys are faded and show no letters to make sure I'm using the right one. Making me too slow in creating any posts, not to mention very painful when I do attempt.
You will also note misspelling and wrong letters ... so on not making sense in my previous posts. This is because I am struggling through and posting only to find errors later when I reread them. If it's not glaringly obvious and readers can still understand what I'm trying to say I haven't bothered editing the post ... so sorry for that everyone.
I have finally remembered that I have a budget tablet sitting next to my keyboard, in front of my hard drive tower, which would be easier to type on as the small built in keyboard in my case is best used one handed. Also using my one fairly decent arm/hand/shoulder I can type out more concise and understandable posts. I tested this theory tonight while waiting in my car for my eldest nephew to return from his guitar lesson and found while typing posts this way is slower than I am used to, I tend to create more concise well thought out posts which have little or no editing needed to 'fix' them for posting.
Also the on screen keyboard I'm using suggests words as you type and for long words that I repeat it makes the process of typing out posts a lot easier and a bit quicker.
So hopefully I will be posting more about my views on all thing I consider pertinent as a disabled woman who happens to blog. I'm currently working on a post on being a disabled blogger and how I see the internet - and blogs/forums for disabled and ill person - as a positive thing for people who can find themselves cut off from the outside world by their disability.
Monday, 31 October 2011
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
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
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.
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
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
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
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
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.