Tuesday 23 April 2013

Decision Letter

Hi everyone,

I've been a bad blogger again but I've been waiting to have a decent amount to talk about that wasn't just a 'woe is me' post. I think I annoy enough people on social networks with that as it is!

I somehow did my hip in yesterday! It was a similar pain to when I kneel down and my knees sort of 'dislocate'. It's not as bad today but I was hobbling about so much yesterday. No idea how I did it. All I did was walk a few feet to the kitchen and it just went. With the kinds of pains I have and the 'grinding' feeling I get with my knee joints etc, I'm extremely surprised I don't have arthritis. My dad has osteoarthritis which is spreading at an alarming rate and I can actually relate to the kinds of pains he describes. Mine are much more ongoing and widespread (alongside the other symptoms) though. I can definitely see why people say Fibromyalgia is similar to Arthritis.

Ok so I sent my ESA application off (with sick note) and received my decision letter yesterday (Monday). I had been accepted! Big big relief as I thought it'd be much tougher than that. If I'm not well enough for work though then what can be done. I'm being honest, transparent and doing everything required of me in the time required.

So today came with a good thing and a bad thing. The good thing is that my first ESA payment has gone through. Contrary to popular politician belief, this does not mean I can laze around, go on holiday and buy fancy cars haha. It means I can afford to pay my bills without getting seriously panicky beforehand. I think I have done really well so far to avoid more than one bank charge.

The bad thing (well nerve racking thing) was that with my payment came the ESA50 form from ATOS that I have about a month to fill in and get back to them. I should probably get a letter or fit note from my doctor again to back it all up too. At least my payment allows me to pay for a doctor's letter if I need to so no real worries there.

I guess I'm just nervous about how the assessment will be. I don't know of anyone who's had an assessment where they felt respected and dignified. I just have to make sure I'm prepared for it. I really hope I get a morning appointment because my dad works afternoons and he'll have to take me. There's no way I could make it on my own as I seem to have lost all my confidence with travelling out of the house alone. All my symptoms get worse especially if where I'm going is crowded.

I think I'll get started on this form tomorrow. I've had a read through today and know I'd at least score 15 points on it. Some of the questions seem very irrelevant to an actual job though. For example:

  • Going up or down two steps: Why the word 'or'? Surely if, in a small office, you need to go up two steps, at some point during the day you'll have to go down two steps. So shouldn't this be 'and'? Also, I don't know of any workplaces that only have two steps at the most. The smallest office I worked in had a flight of stairs and no lift. If you could be situated in the ground floor office that was fine but meeting rooms were upstairs and there would be quarterly meetings (if I remember rightly). 
  • Can you lift at least one of your arms high enough to put something in the top pocket of a coat/jacket while you are wearing it?: I guess you have to check just how bad the disability is but again, being able to do this doesn't necessarily mean you're fit to work. 
  • The Picking up and moving things section: These questions involve carrying small cartons of liquid and a large empty box. In most (if not all) jobs, you would be expected to at least carry a couple of folders of work at some point in your day so these questions seem to underestimate the requirements in the workplace. I understand workplaces have to be accessible and accommodating for people with disabilities but I don't think an employer would be happy to carry things for you if it is part of your role. I think a more relevant question would be "Can you pick up and move a packet of printer paper?"
One thing I'm glad of though is the fact that there is an "it varies" tick box. This, at least slightly, includes the possibility of a variable chronic illness or disability (such as what I have). Also there are boxes to give more information. I only hope that these extra information boxes are read by the assessors/whatever you call them as I intend to fill these to explain the limitations of my illness as much as possible.

Anyway, I need to get some lunch so I should go. I'll keep you updated!

Monday 8 April 2013

Sheer Exhaustion

This post is half an explanation to my friends, half a bit of a rant about how I've been feeling the past few days (or weeks? I don't remember)

I've had so many things I've needed to do, since moving back in with my parents, and only recently got some of it done. This includes unpacking boxes, sewing up clothes that needed mending for ages, cleaning round the house a bit because mum can't.

I'm really really trying to pace but it's proving impossible. I feel like there's even less I can physically do than I originally thought. It terrifies me that I might actually be getting worse. I'm not dying or anything so I guess I shouldn't be so terrified but it's the ambitions I have that I feel are disappearing into the distance at an alarming rate. I have to stop myself from using the "By now I should have achieved....." phrase which kills me inside.

I also feel so so incredibly guilty that I have become this incapable of doing things. I know it's not my fault. I've not abused any substances, led an incredibly unhealthy lifestyle or got into lots of fights or anything. I just got ill. It's because I'm not the only ill person in my household. My mum has epilepsy and is currently recovering from an operation on her leg that is taking a long time to mend. She's really been through the wars and also has to learn to pace herself in order to let herself recover properly. My dad has arthritis which is getting worse and spreading through every joint it can find. He holds down a full time manual job and is exhausted by the time he gets back from work. I don't know how he manages it. So I feel guilty when asking either mum or dad to help with things such as changing bed sheets, washing up, cooking etc. When I see them wincing (sp?) in pain, although I'm doing the same, I feel incredibly guilty.

I wish we could afford a cleaner or something but it's just not possible. So I have to push myself most days to just get stuff done, otherwise it won't get done. We need clean plates, clean sheets, food on the table etc.

I realise the past few days just how much these things are taking a toll on my own health and energy. I guess you could say I've put myself into 'spoon debt' haha.

It's just got to a point where I'm finding it hard to concentrate on conversations on facebook/twitter/text/phone even and I feel bad because my responses are very lacking or just don't make much sense. I worry about rubbing people up the wrong way because I'm too tired to sugarcoat things either. I'm sitting here close to tears because I'm just so fed up of my body not doing what I'm telling it to do. Or being very slow about it!

At the moment I feel completely out of it, I'm sort of hobbling around in a daze and being forgetful about things. I made a salmon and cucumber sandwich earlier. I kept going to the fridge and wondering why I needed to go there. I'd got the salmon and cucumber out and I needed to get a knife (in the drawer), a plate (in the cupboard), the breadboard and the butter (in the cupboard). I kept going to the fridge to get the knife, what!

I do joke about getting confused sometimes but it is extremely frustrating.

My back is still very bad from when I was last with my partner, helping him put his clothes away. Everytime I walk, or bend, or stretch, or turn, it's like my body thinks it's a bad idea. It's what I'd imagine arthritis to feel like (although my blood tests don't indicate any bone problems) with the wearing away of the cartilage and feeling like your bones are rubbing together and being damaged.

I'm definitely not ready to work again yet am I? Everytime a period of employment has ended, my body has felt worse for it.

Anyway, I must go now and reply to the message I was sent quite a while ago.

Friday 5 April 2013

Sick Note and New Meds

Hi everyone,

Just keeping you all updated :)

So last time I talked about my meeting at Citizens Advice Bureau to see what sort of benefits I should be applying for. As much as I'd love to get better quick and work soon, it's not really possible, especially if my symptoms keep flaring up!

My doctor had told me to do as much as I can and not limit myself, as ESA would be very difficult to get nowadays. I did try to do more; such as a bit of hoovering and helping my partner unpack some of his clothes. What that resulted in was a real flare up of pain; especially in my back. I was in tears yesterday, it was so painful.

I printed off the ESA form the other day. It says to call your jobcentre and get them to post you the form, but you can print it off the gov website now. My printer didn't know what hit it haha! I think it was about 56 pages long? I'm surprised my cartridges managed to survive lol. Ok so that's done and I'd filled it in as much as I could over the past couple of days. The part asking about medical certificates confused me because it talked about needing a certificate from the 8th day of your illness? Well if I took that literally then I probably hadn't even seen a doctor about it after 8 days back in 2010. It took a while for me to give up and go to the docs as I'd never been ill for so long before. Anyway, I digress. I decided to get a sick note from the docs at my next appointment now I've had this Fibromyalgia diagnosis.

I was actually really worried that it'd be difficult to get a sick note as my doc had told me not to limit myself. I know how I feel physically though and I'm definitely not ready for work just yet. I can't say when I will be ready either, I guess it'll just be when I'm on treatments that work and am seeing the correct specialist. My referral seems to have flown out the window though! I did ring my old doctor's secretary the other week and he'd 'forgotten' to do the referral. Still nothing from this TRAQS place so I'll try again next week and if there's still nothing then I'll just leave it. According to fellow fibro sufferers, I talk to occasionally, I should be referred to a neurologist or rheumatologist because of the types of pains I have. Docs I've spoken to have said that Fibromyalgia doesn't call for a particular specialist though. I don't have the energy to argue. As long as I get the right treatment I'll be happy!

I'm rambling again. Ok! So I had my doctors appointment earlier today and I (sort of) prepared what I needed to say to her. Basically, reminding her of last appointment and what she advised, telling her I took her advice and relapsed, explain why I feel I'm not ready for work yet, ask if she could do me a sick note, say about Amitriptyline not working for me and mention about not hearing anything from referral.

Luckily I remembered all that and explained. Now remembering about her saying (at last appointment) that I should do as much as I can and not limit myself, I thought she might say no to doing me a sick note! In hindsight, I think this is me being extremely cynical (a learnt trait). But no! There was absolutely no problem getting it and she even asked me how long for. I'd heard somewhere that a month sick note was acceptable for ESA. I hope I didn't get that wrong. She also has changed my meds to Pregablin and will look to prescribe me strong painkillers if needs be. I don't want to be too doped up on meds so I didn't ask for them as well. Will just see how I go on these. Also, she will look to refer me if my referral still doesn't come through (I don't hold out much hope tbh!)

So, altogether a pretty good day! I've filled in my ESA, included my P45 (looking at the date on this, I'm now technically "long term unemployed" blah) and sick note and posted it off. I'll just have to keep my fingers crossed about this and probably be careful with political twitter rants. You can never be too careful these days!

I'm sort of erring on the side of cynicism (again) though. Unless I have limbs dropping off, I'm likely to be rejected so will have to prepare myself to appeal. The good things are that I now have Citizens Advice and my doctor on my side and they all know that I've applied for ESA etc.

Ooh also, another thing! My lovely mother called Orange for me yesterday to see what we could do about my contract. At the moment, each time my phone bill comes I get nervous about having enough in the bank. With VAT it's around £28 per month and I barely use any of my allowance. I think I get about 300 or 500 mins, unlimited text, email and 500mb internet. I only use about 100 mins (if that!), about 300ish texts and about 20mb data. I read my emails on my phone but I don't send emails. The laptop is much easier to use for that.

For the past few months I've been using my overdraft to pay for phone bill and ask parents/partner for money in very exceptional circumstances (I hate owing people money) but my overdraft is fast running out so I absolutely need to have some sort of regular income. Well mum phoned and I ended up discussing options. As of next month I'll have been on this contract a year so can downgrade my tariff. The next one downs about £20 a month, not brill but a lot better and probably pretty fair for what I'd get. The woman on the phone was lovely too, very flexible with options. The £20ish tariff includes about 100 mins, 500 texts, some internet (which is perfect for me)

So yep! I think that's me up to date for now. Will keep you posted about what goes on next :)