Wednesday 29 June 2011

Thank you

In June of last year, my husband Ian, and I, went to Egypt. I became ill in Egypt, presumably having caught a bug on the aeroplane. On return to the UK I did not recover, but became far more ill. At first it was a chest infection, but as I failed to recover for months I concluded that CFS had got me, and was going to take me away from this world. Honestly, that's how bad it felt. I was bed-bound. Telling someone you were bed-bound does not sound so severe until you describe what it implies. No, I did not have a few months rest in bed. I was in bed because I could not move without agony. I was so weak that I could not lift my limbs. Eating physically hurt; my jaw ached, my stomach hurt, my eyes hurt and felt weird, the smell of the food actually made me retch at times, and when I did eat it was not accepted particularly graciously by my body. Simply sitting up in bed was frequently too uncomfortable to be realistic. I wore incontinence pads, as I was scared that I would not get to the bathroom when I needed to because of the pain and fatigue in my limbs. Every part of my body felt useless .. dead. THAT is what being bed-bound means.

So, in November, when Ian sat on the bed next to me and simply said 'I want a divorce', I honestly didn't know whether to laugh or cry. Had I had the ability to do so I would either have hit him with a brick (there were no bricks available mind you), or told him he was a selfish bastard with the timing of British Rail. Nevertheless, he was right, our relationship was crap, and doomed, and I'd wanted out of it for ages myself. So I agreed to a divorce. It was a struggle. My first struggle was getting my head around everything, not even just getting out of bed. It became apparent as soon Ian had asked for a divorce that his intention was not to play nice. He threatened me that if I didn't do things his way, if I sought legal advice, he would make all the money disappear. So I found a solicitor who did legal aid and would do home visits when Ian wasn't here.

It was been a slow, torturous process, the last eight months. The first step was getting myself well enough to get out of bed. Amazingly, knowing that freedom was ahead of me helped. My doctor had been telling me for months that if I was free from Ian, I'd start recovering. He was right. I have no idea of how I managed it, but with Ian being gone I had to start looking after myself. It's mostly been bread, tinned fish, and water, but I've been doing it.

Early in the year, Ian cancelled my credit card. It was linked to his bank account so I do understand this, but it was my life line; I used it only to buy food and fuel for the car. His reasoning was that he could not trust me to not drain the account. So I applied for benefits. While I waited for a response from the DWP I asked my mother if she could loan me some money. She wrote back to me telling me that she had no money to loan me, and then she gave my sister £4000 the next week. With sick notes from my doctor I started receiving ESA (Employment & Support Allowance). It took only a couple of months for them to call me up for a medical assessment, one of the most stressful experiences of my life (yes, more stressful than the divorce). As anyone who has been reading my blog will know; I have been extremely close to the edge of another breakdown.

I've had an amazing support network. For the last ten years the only social life I have known has been Ian's family, and occasionally interaction with Ian's university friends. I've made friends on the Internet though, who have proved to be the only people there for me. Thank you everyone.
Thank you N for always being online, listening to my complaints and daily gripes.
Thank you M, for coming to the solicitors with me and looking after my babies.
Thank you BV, for being a refuge, a sister, and a best friend to me.
Thank you A, for being an escape route.
Thank you BW, for being a shoulder, and strong for me, again and again.
Thank you J, for bringing me joy.
Thank you L, for all of the legal advice you've given me over the last few months.
Thank you S, for listening and caring.
Thank you T, for sharing my pain, and helping me laugh.
I wouldn't have survived without you guys.

I've had so much to deal with. I just cannot fathom that I have made it through. The divorce is over, except for needing the house to sell. The medical assessment for benefits is over. My health is nowhere near as good as it was at the beginning of last year, but I am no longer on deaths door. I feel like I'm at the end of the tunnel, in the light, looking back into the tunnel in complete disbelief and awe that I made it through.

Thank you so so much.

Friday 24 June 2011

Proud but Pissed!

I'm kind of proud of what I've done today, but at the same time I'm all pissed off. I really need to google strategies for coping with anger, but keep forgetting.

I woke up this morning to cramping in my tummy. I wondered what had happened to my period. It started a few days ago, but vanished again after about three hours. The cramps were HURTING me already, so I took a bunch of pain killers and buried my head under a pillow.

I was woken up at about 12:45 by a phone call from my lovely doctor. He had received my urine test results, and indeed I have e coli causing me cystitis, which would explain why I'm in PAIN. He had surmised that it was probably e coli when I saw him on Tuesday, but now that we have proof he can prescribe me the most suited anti biotic. The reason I still have cystitis after the first course of anti biotics a couple of weeks ago is because e coli is becoming resistant to the standard anti biotic being prescribed for it. The anti biotic I actually need (and have a prescription for) is Nitrofurantoin. Never heard of it before. He has also written me a prescription for Mefanamic Acid, since I was complaining of the agony I am in with period pain.

I was happy. In pain, but happy. I dragged myself out of bed, got dressed, did my best to not look like I have manky greasy hair, and drove myself over to the doctors to get the prescription. Picked it up, went to the pharmacist, where I hit the problem. 'It's the pharmacists lunch hour, you can come back in an hour and collect it!'. Actually, I can't. I was struggling to stand up, as she could see, in a lot of pain, already groggy and shouldn't be driving; I'd be worse later on. I asked about prescription delivery; oh sure, yes they do that ... they could deliver it next Wednesday. So I asked if she knew which pharmacy would be open now ... she offered me the one in the centre of town as an idea; one I'd have to walk to .. when I was evidently in no state to be walking. I left the chemist feeling frustrated, sat in the car and cried, and came home. I am basically going to have to settle for being in pain til tomorrow :( By then of course I'll not need the Mefanamic Acid. Doh. Oh well, at least I'll have it for next erm ... menstruation.

Well, the good that came from this is that whilst at the chemist I picked up the number to phone in order to change the name on my medical exemption certificate. So I came home and phoned them to ask how to go about changing my name. So I have written the letter, and included the right documents etc. And since I was in the mood for doing so, I prepared the letter to change my name with the DWP, and to send my driving license back to have them amend their error too. I phoned my solicitor to find out why he wanted to speak to me, but no one was available. I made an appointment with my dentist for next week. Made an appointment with Doctor Niklaus so that I'll have a sick note in time. And phoned HSBC.

My intention in phoning HSBC was to find out how to go about changing my name with them. First of all, there is no specific department that deals with this. Second of all I was put through to India, where the lady I spoke to at first didn't seem to understand the concept of changing my name. She put me on hold to go and ask someone for help, and I got cut off while she was gone. Sooo, I spent ages going through their frustrating phone system to speak to someone again, and whilst SHE was gone seeking help, the first person I'd been speaking to tried to phone back. She tried my mobile first, and then the land line, so since I was on hold on my mobile I answered ... and explained to her that I was on the phone with someone already. I was basically trying to find an address to send all the documents to in order to change my name, because with my health being the way it is at the moment I'm unconvinced of my ability to get to any of the HSBC branches that are around here ... basically, they're all a hike from their nearest car park! Eventually I was put through to a Customer Solutions Department in the UK. The lady I spoke to was lovely; she completely understood the limitations of M.E., and really did try to help. She contacted my nearest HSBC to request a home visit so that I'd be able to do it here, and phoned me later to see if a solution had been reached. The local branch contacted me to say that they can't do that though. What I didn't realise is that they actually have to witness you signing the new signature. So as it stands I will be unable to change my name at the bank until I can physically go in and do it. They should offer a Skype service! The lady did put my mind at ease by telling me that when benefits payments go through they only use your account number, rather than your name, so it shouldn't make a difference.

And now I'm completely wiped out. No chance I could have gone and collected the prescription if I had left it with them.

Wednesday 22 June 2011

We have looked again at our decision

Mrs Olana Voljeti
Address 1
Address 2
County
Postcode


We have looked again at our decision.

You made an appeal against a decision about employment and support allowance issued to you on 3.5.11.

We have looked again at the facts and evidence used to make our decision. As a result we have changed that decision. You are still entitled to employment and support allowance.

What happens now

Your appeal will not be sent to an independent tribunal as the decision has been changed in your favour.

Your papers will be passed to Hanley employment and support allowance section to pay any arrears due.

As explained in our previous letter, if you still think the decision is wrong you have the right to appeal. You should normally appeal within one month of the date of the letter.


Yours sincerely,


Squiggle


Mrs J M Adams
Appeals Officer

Wednesday 6th June 2011

Wow, my mind is spinning, so this isn't going to be easy to write. I've had a really really hard few days. Really hard. I'm not quite sure where to start though really, coz my mind's in a completely different place now.

I can't remember Friday, so let's start with Saturday. G picked me up a little after 1pm. I had a bath in the morning, and got kind of bored so listened to my happy songs. (I have a happy folder in my Firefox bookmarks). He's a late riser at weekends, which I can understand since he works hard all week and is exhausted by it, but I find it frustrating using all my spoons in the morning and then zonking out on him in the afternoon. It was good to see him. When he arrived I just wanted to drag him inside and hug him. I'd not seen him for two weeks after all. But I'm a wuss, so I didn't. I can't really remember what we actually did now, to be honest. I do know however that we had an absolute disaster of an evening, which was entirely my fault, and I feel horrible for it. It affected the whole of Sunday. He went out briefly to see one of his neighbours. I started crying. He didn't know this obviously. I managed to compose myself before he got back. He went out to the shop a bit later though, and I started crying again. I was just starting to get a handle on it when he walked back in. He caught me crying. Holy clap on a bike, that's the worst thing psychologically for me, it really is.

As a child I was depressed, but obviously I didn't have any concept of depression, and no one seemed to pick up on it. I spent my childhood and teen years crying myself to sleep probably every night. Occasionally my sister would hear me and come to see what was wrong. If my parents or my step brother found me crying I was .. told not to .. to put it politely. I learnt to cry silently. In fact, pretty often I can be sitting next to you crying and you'd not know it. I still have this mental block. No one can see me crying. It's terrifying. So while he comforted me, it made me worse.

Why was I crying? Well, because I'd failed him. I failed him Saturday night, and then again on Sunday morning, and a little song I wrote for my dad when I was about 11 years old, about how everything I ever do goes wrong, just kept going round and round my head. I felt like that child again.

On a rational note; it could have been PMT causing that. I'm not quite sure whether PMT causes the negative thoughts, or whether it turns them into tears, but occasionally I have emotional PMT. Not every month thankfully.

So, I came away from the weekend feeling that I'll probably never see G again. Oh, he's assured me otherwise, but I feel like I keep pushing and pushing, but I'm not doing it on purpose. It's just that since I've known him things have got steadily worse (and no, I'm not implying that it's his fault at all). The stress from the medical assessors notes has seriously been pushing me to my limit, which has lead me to me being a giant psycho cry baby, and to M.E. crash after crash after crash.

I've spent the last two days in tears. Well, mostly anyway. I don't remember much about Monday, other than I was in tears and banging my head against a wall at one point. Yesterday I started to feel a bit more rational ... my period started and my mind seemed to clear. But then I had a massive crying attack in the evening again. Notably, my period had stopped ... which is odd. I keep thinking I'm having a nervous breakdown again. I do not want one. Obviously. The fear of the fear can cause the fear though.

Well, this morning I woke up feeling melancholy. I lay in bed listening to the rain, which inspired me to write a poem which I've shared on FetLife. I may share some poems on here eventually, now that it won't be scrutinised. I got up and went to the bathroom. Now here's a weird thing, I keep getting emotional, cystitis, and constipation all at the same time. I wonder if they're related. Anyways, I sat on the loo and I decided that I need to force myself to have routine again. Just a simple thing. So here's my resolution .. which I'll probably not stick to ... but anyways:
- lie in bed and try to write a poem or read a little, listen to the birds or rain, or whatever is going on outside
- brush my teeth
- wash my face
- drink half a pint or a pint of water
- do ten sit ups
- take my medication
- make the bed (unless I'm getting back in it)
And later on in the day:
- wash plates as soon as I use them
- don't use a plate if I'm not up to washing it
- put clothes away as soon as removed

It's pretty basic, but it's a start. So, I got dressed, thinking these things through in my head. I want to remain in a tidy, clean house, despite the fact that I am technically not really able to maintain it. If I don't have the spoons to clear up, then I'll not make the mess to start with. I was not feeling positive. I felt as miserable as sin, but I had decided that there was no way in hell I'd let a breakdown happen, and the first step is to force myself to have a routine. Or so I've read anyway.

DWP smell about it. I was loathe to open it, but open it I did. Low and behold; they have reconsidered my medical assessment and allowed me to retain ESA after all, with no tribunal.

This is why my head is in a spin. The thing that has been causing me to stress out beyond my own control, has just been whipped out from beneath me. I mean .. yay, obviously. I hope it's that simple. I hope that means the stress is gone. But you know, what if the damage is already done. I guess we'll have to watch this space won't we.

Monday 20 June 2011

Do you know how it feels?

A lass named Sarah Warren, who is going through the same things I am, wrote this, and shared it on Facebook today.

Do you know how it feels to be
invisible
ignored
invalid
dismissed and devalued?

Do you know what it's like to be
labelled as lazy
thought of as fraudulent
to be told you're a liar, a faker, a cheat?

Do you know how it feels
to fill in a form
that reminds you of every last thing
you once dreamed, you once hoped
and that forces you to see your
       hope in tatters your
       dreams in shreds your
       life beyond rescue?

Do you know what it's like
when the world looks at you
and then looks away?

Do you know how it feels
       to be
              invisible?


To: The DWP, the NHS, NICE & successive governments
on behalf of people with ME/CFS

http://www.facebook.com/notes/floot-writes/anger-19611/181504528570851

Wednesday 15 June 2011

Asking my MP for help.


Dear MP,

I am hoping you can help me.

I moved to Staffordshire in 2002. I was and still am ill with M.E.. I am not sure whether it was 2002 or 2003, but I wrote to you for help regarding the problems with benefits, at the time, and you helped me then. I am hoping you will have it on record somewhere. The short version of my request is that I’m hoping you can write a letter stating that you helped me then, and knew that I had M.E. then.

The slightly longer version is as follows:
I’ve had ups and downs with M.E.. At the beginning of last year for example, I was seeking work. In June I got a bug, I crashed severely, becoming bedbound until mid December. In November my husband decided he wanted a divorce. Early January he decided to stop supporting me, so in February I started claiming ESA. I was called for the medical assessment in April, and failed. I therefore find myself with the daunting task of preparing for a tribunal when I am struggling to walk, let alone feed myself, or prepare for a life on my own. I cannot find a representative for the tribunal, so I am seeking references such as the one I am requesting from yourself.

Upon receiving the medical assessors notes last week I am disgusted to find that the nurse who assessed me has not only lied throughout the form, but has twisted things I said, completely failed to take my back problem into account at all, made assumptions (which I now realise are based upon the training they receive for assessing people with M.E. / CFS), and contradicted herself. This woman should not be assessing people. She has hinted that I am faking my condition, and awarded me zero points on every criteria. She has stated that I was working until five years ago, which is why I am seeking the reference from yourself saying that I was seeking your help well before then.

I could go on, but I will not for now. I am merely seeking such a letter from you, but later on I would be happy to share the assessment and my notes with you if you are at all interested in the welfare reform. Needless to say I am absolutely beside myself over all of this.

Kind regards,



Olana Voljeti.

Wednesday 15th June 2011

Well, I completely screwed up today.

I had a bath this morning. It takes a long time for the bath to run. It makes me sleepy watching it, and waiting. The hot water helped. My legs and arms were soothed, and it was nice to stop feeling pain for a while. But as always I couldn't get myself to relax, so just basically washed, and got out again. It probably takes longer to run my bath than to actually have it.

My plan for the day, basically, was to get a Fathers Day card for my Dad and post it, and to get a thank you card and bottle of wine for Brian. Because of the bottle of wine, I figured Tesco would be the best place, even though it's a bit further than driving in to Rugeley.

I don't really know what I was thinking. As soon as I got out of the car I knew it was a mistake. My legs were shaking with every step, but not in the same pigeon-impersonation way they had been before. I used my stick, until I had a trolley to lean on. I took the lift up to the store. I walked straight past the card aisle, finding myself in the store before realising I'd done so, so I went back and picked up some cards. Making my way to the alcohol area I found I was going past the gluten free section, so I figured I could buy some food whilst there. So I picked up some items there, then picked up some items from the fresh area, and since I was going past the refrigerators I picked up some yogurt ... you get the idea; I did shopping!

By the time I got to the checkout I was leaning my full body weight on the trolley. My legs kept giving way beneath me. I was beside myself with embarrassment. There was no way I could have gone through the self service checkout, which is what I usually do. So I queued behind an elderly guy. He was taking absolutely ages to get through the checkout; I don't remember what it was that he was doing. I had tears running down my cheeks by the time I got to the checkout. I asked the lady if she'd mind packing for me. She asked me what was wrong, I explained that my legs weren't working properly, that I'd not be able to stand to pack the bags. She asked if I was ok, if I wanted any help (other than bag packing). I said no, I'd be ok. So she told me to go sit down while she packed my stuff. But she then called over her supervisor, and people started descending on me from all sides. I had to explain that I have M.E., that my legs and arms were trembling due to fatigue, that I'd be ok, it was just a bad day. I was so embarrassed. Everyone was staring at me.

The most annoying thing is that I forgot to buy paper for the printer. I realised just after unpacking the trolley too .. but there's no way I'd have been able to go and find it and get back in time to pay.

The rest of today has been spent resting. I baked a potato for dinner. Nearly forgot it was in the oven mind you. I'm aching all over, but I'm seeing Tim for acupuncture tomorrow, so hopefully the aches will go away for a while.

Tuesday 14 June 2011

Monday 14th June 2011

I wasn't going to write a post today, coz I've done absolutely nothing. Then I realised that that's kind of the point of the blog. Duh!

I woke up just after 7am this morning, having had a nightmare. It was nasty and I couldn't get back to sleep, so I turned my computer on and wrote a blog post about it. I had a cry, and I texted G to tell him I required a hug. He was already up, getting ready for work, and proffered the requested hug via text. I read a couple of pages of The Truth, before going back to sleep. 

I woke up at about 11:45. Listened for signs of life from Bev upstairs, but none emerged until gone 3pm. I spent a little time fiddling around online, read a few more pages of my book, and cuddled the kitten, who is extremely cute, and naughty, and filled with widdle.

I had decided that I should drive home this evening, because I am worried that I'm making Bev crash. She said not though, so we had a lazy day. Neither of us have even got dressed today. Tomorrow I'll go home. I'll need to rest properly, both tonight and tomorrow afternoon. We talked too much this afternoon, so no rest was had. And now I'm exhausted. My legs are working today, but I ache through every limb ... even the little ones like fingers, which probably aren't limbs.

Monday 13 June 2011

I hate nightmares.

I just woke up sweating from a nightmare, and since I can't get back to sleep decided I'd blog it. It'll probably sound pretty banal to the untrained eye.

Just to give you a bit of background; I grew up with my father and step-mother. My full sister and I lived with them from when I was about 3 years old and she was about 18 months old. My step-mother had three sons of her own, the youngest of whom is eleven years older than myself. By the time I was a teenager, only the youngest of her sons was still living with us. He had had a few problems in life and turned to alcohol. He had also turned to bullying me, and very occasionally being violent towards me. It was enough to give me a fear for my life, however occasional it may have been. I did not speak to my parents about it, but that in itself somehow lead to massive conflict with them (or so my counselor told me at the time). 

In this dream, some friends of my step mothers were staying at the house. They used to do this frequently; the man of the couple very much took my step mothers side in any argument, probably without thinking logically about it, and as such also had a nasty attitude towards me. Something for which I've never been able to forgive him.

I had been in the kitchen earlier with my step mother shouting at me about something. My step mother and her friend were still in the kitchen, presumably happily going about adult gossip having forgotten that I existed after shouting at me. I had gone from the kitchen to the living room, where I had sat and stared out of the window at the pond. I didn't use to cry; I just stared into space. I saved crying for night when no one could hear me or shout at me for doing so. So I stared at the pond for a while. I left the living room, and started to mount the stairs hearing my dad in the dining room say the word 'printer'. My step mums friends husband came out of the dining room. I don't remember how he approached me, but he addressed me. I slumped down on the stairs, looking down at him through the bannister's, and asked 'What threat now?'. He said 'That attitude; either you get rid of it and you can have the printer, or you don't and you can't!'. My parents were always making promises like this, but no matter how I behaved, how much I bit my tongue and took the bullying or shouting, I never got whatever it was that had been promised.

I was then in my bedroom. Oh hang on, no I wasn't. There was something to do with my nephew; the son of my oldest brother, and trying to take a photo of him. It was a family event, and everyone was taking photos of him with his father. I kept trying to get to the front of everyone so I could take my photo too. The youngest step brother kept getting in the way though. I gave up, and went and sat at a table alone feeling sad.

Then the dream skipped to my bedroom. I was half sitting, half lying on my bed, doing something or other when my brother (the youngest one who lived at home) came barging into my room. The door flung open against my bed, and looming over me, he started shouting at me. I don't remember what he was shouting now, but I could when I woke up earlier; it was something to do with when I'd been trying to take a photo. The weird thing with him was that while I can give him the excuse that alcohol caused his behaviour, he actually behaved in this way without drinking too .. sorry, I just remembered that.

He shouted at me, which in my memory of the dream is just a very loud threatening roar, but did actually have words that made sense in the dream, then he slammed the door. I grabbed my mobile phone, started to type a text to Gareth, but then decided I didn't want to bother him. It had said 'room for one more?'. My brother slammed the door open again, and roared some more. I now cried in my dream, which I would not have in real life, though probably would in real life now I guess. I took my mobile phone and stood by my bedroom window looking at the gravel of the drive below. I had a vague escape plan as a teenager; to jump out my bedroom window if I ever needed to. I didn't seem to realise that it would break my legs. I texted Nomi telling her that I couldn't cope. For some reason she had thought I was in a hospital and texted back saying that she knew the hospital was green. Typical dream; has to have something completely nonsensical in it!

It's a kind of confusion of memory and dream really. I would have had no use for a printer for example, and obviously did not have a mobile phone until years later. I did not know Gareth or Nomi back then either. The feelings of the dream were very real, and I will probably have a good cry when I close my computer down. One of my friends suggested the other day that I may have PTSD because of the things my brother did to me as a teenager. I don't really remember very many of them, and I'm not familiar with PTSD so I couldn't guess. I suspect that conversation is what triggered this dream though.

Sometimes I wish I had done things differently. But I don't think it would have helped. Had I told my parents what my brother was doing, it would not have helped me have a better relationship with them, which even now is very strained over 15 years on in my life. Instead it would have meant that both he and I had a strained relationship with them, or I had no relationship at all with any of my family, since they have a tendency to disbelieve anything and everything I tell them, up to and including that I am ill with CFS. It makes me sad and angry that he does have such a good relationship with them, and I never will. I have come to terms with it in a way, but will always mourn losing my father, even though he's still alive.

Sunday 13th June 2011

My body sucks.

Woke up this morning at about 10am. I tried to be quiet, as I didn't want to wake Trudie. Once I'm awake I'm awake though, so it was a bit of a struggle. I can't actually remember clearly the process of this morning, just remember lying there trying not to breathe, but then having an allergic reaction to something so having to get some water to take anti histamines with. My legs didn't seem to be collapsing so much when I stood up to do so, which was good, but as soon as I stood up I had shooting pains all the way up my legs. I've spent the whole day with deep muscle pain throughout them. I try massaging my legs, but can't press hard enough to make it go away, and just end up bruising myself instead. Or at least it feels like I'm bruising them. It hurts!

Bev and Trudie played with ferrets for a bit, so I took a sneaky nap. I actually zonked out pretty convincingly. I hardly ever sleep deeply. Shame it didn't last long.

Mark and I took Trudie home. Mark drove obviously; very little chance of me driving at the moment. The seat was leaning a little forward; Mark had put it that way so that Trudie could lie down more easily in the back. But the angle of the chair was hurting my back, which in turn was making me grumpy and tired. And Mark was trying to hold a conversation with me. I hope my replies to him were making sense, it was very hard to focus.

Got back, ate chicken, fell asleep. I was woken up by a text message at 9pm. I hate being woken up artificially as it renders the rest I was having null. Rest only seems to count for me when I allow it to begin and end of it's own accord. I feel like a groggy, grumpy, pain infected lump of uselessness. I'm so sick of this illness. I want it to end. I want to move on with my life. Be useful to someone. I know it's probably a stupid worry at this point, but I'm really worried that my stupid illness, and this crash in particular will affect things with G. I don't want to scare him away :(

Friday 10 June 2011

Personal letter for ESA Tribunal

Dear Sirs,

I would like to tell you a little about myself. Please understand that people who have M.E. / CFS are often not honest about how ill they are. It is an illness that people cannot see, so people pre-judge and second guess us all the time. People do not like to hear about how ill you are. Therefore we put on a face most of the time, pretending we are healthier and happier than we are. As such, it is extremely difficult to do an about turn in our heads; to be honest about how ill we are, even in the context of a medical assessment.

In order to attend the medical assessment I took complete bed rest the day before. My ex husband drove me to the assessment as I would not have managed the journey by public transport (due to anxiety at being alone in public, anxiety at meeting the deadlines, and the likelihood that I’d be so tired on the return journey that I’d get lost). It took an hour to drive there, and an hour home. We were at the medical centre for approximately an hour too I believe. Following the assessment I crashed; CFS is a fluctuating relapse remission condition, when I refer to a ‘crash’ it means a mini relapse. A crash for me, at the moment, means becoming bed bound again. I was bedbound following the assessment for nearly two weeks; this means that I was bedbound when someone from the DWP phoned me to tell me I had failed the assessment.

As a side note, I would like to say that it is unfair that the fact I am well versed in my illness is used against me. I have been ill for ten years; if I was not familiar with the condition it would be surprising.

As I write this, I am wearing dark glasses because at the moment I cannot stand the light. I slept on the settee last night because my legs are very unsteady at the moment so I am scared of falling down the stairs. I am still wearing my pyjamas, as I do not wish to waste the spoons  (I hope you know what that means) in getting dressed, particularly when I will not be leaving the house today. I feel giddy and nauseous, but will not throw up, so know I will feel this way all day. My legs have the burning dull ache in both the calves and thighs that I have come to refer to as ‘CFS pain’ (as opposed to sciatica). I am drinking a small glass of water, because I dropped the bigger glass yesterday due to my hands being unsteady. My ability to multi task has completely gone; every distraction is causing me to have to re-read what I have already written before I can work out what to write next.

A picture of my life before I was ill:
•    I weighed 9 stone.
•    I worked a full time job in the marketing department of a Biotech company. I loved that job. I had fantastic colleagues (except my line manager, who was a bully). I adore administrative work, so was completely in my element.
•    I went swimming three times a week; swimming 50 lengths each time I went.
•    I went to nightclubs with groups of friends.
•    I attended morning and evening church services on Sundays, and church meetings on Wednesday evenings. I attended two other church groups during the week.
•    I also still attended the university Christian Union on a Thursday evening.
•    I did shopping for elderly people who couldn’t shop for themselves.
•    I worked part time in Oxfam on Saturday mornings.
•    I spent time preparing food for, and walking around town giving it to the homeless.
 [Sorry, I do not mean to sound like I was a saint; this is genuinely how my life was. It is supposed to illustrate how active I was.]
•    I played the cello, piano and recorder, and spent time singing with my friends. Creating music was a passion.
•    I left the Biotech job due to bullying from my line manager. I did not claim benefits, even temporarily, but sought work. The only job available at the time was working part time in a retail shop; Game. Again, I loved the job. I love being on the front line dealing with people, helping people, and again, my colleagues were great company and great fun.

I left Game due to ill health. It got to the point where I was only getting out of bed to go to work, and then going straight back to bed after work. My manager said to me one day that it was ridiculous to keep forcing myself to work, so we agreed that I should resign.

Here is a comparison of my life now. It is not a description of my illness or how ill I am.
•    I weigh 11 stone. The only reason I weigh as little as 11 stone is because I lost two stone last year when I was bedbound and unable to eat. Obviously, no one likes being overweight; if I could be active I would not be overweight.
•    I have no friends in my area.
•    I cannot go swimming or clubbing.
•    I attend no religious or social groups.
•    I can do no good works for anyone, and dare not offer my services for voluntary work because of the unpredictability of my condition.
•    I cannot prepare adequate food for myself, let alone others. In the assessors notes she says I can stand to cook a meal. I cannot. The only cooked meal I can prepare is a baked potato, of which I have several charcoal lumps in my bin because I often forget they’re in the oven.
•    I cannot cope with music, so cannot sing, listen to music, or play my instruments. Listening to music makes me giddy and nauseous.
•    I sit alone, at home on a settee, all day, every day.
•    I have the TV on very quietly for the noise. The assessor said that I like to have the TV on. This is not true. I pay little attention to it. The reason it is on is to protect me from anxiety. I am still living in the marital home, but my ex husband does not. He has issued various threats and behaved very strangely, and he still has a key. When I do not have background noise I become anxious at every sound, in case it is him entering the house.

I do not enjoy being ill. I do not enjoy spending all of my time alone, in one place, being unable to focus on hobbies, follow storylines in TV programs, etc. I hate having no social contact. I miss being around people, going out with colleagues from work, socialising with friends in the evening, and I miss the contact of dealing with customers throughout my day. I even lost my husband because he could not cope with my being ill. I feel like I am living in nothing land, waiting and waiting for this illness to go away so I can continue with my life again. I do not enjoy my life being on pause. There are so many things that I want to do. I have been patient, but facing the reality now that I will never do some of those things, is very depressing. I will now probably never have children for example.

Is it really worth my while to sacrifice my life, everything I had, and everything I wanted, for a measly £67 a week?

For your information, my aspirations are to recover from this curse of this illness, and to then help those in my area with their fight against M.E./ CFS. I want something good to have come from this nightmare.

I apologise for this letter being so long, and so emotional. Your system is not designed to assess conditions like M.E. / CFS, so this is the best way I can think of to help you see that I am not a scrounger, a malingerer, or a fake.

Yours faithfully,

Olana Voljeti.

Not a good week

I guess I should start at the beginning of the week. On Saturday morning, I finally received the assessors notes from the DWP. I had a quick glance through it before going to Gs. Just reading it made me anxious, and angry. He did a good job of calming me down though. So Monday I decided to read it properly, type it up for everyone on the M.E. group, and add my own annotations as to why it was wrong. It was a long hard day. I'm not good at reading at the best of times, so I kept re-reading parts, not comprehending parts, and reading bits without them actually going in to my head. It was exhausting, and I had to rest several times.

I was becoming more and more stressed as I read it, because of the connotation of everything the assessor had said. She scored me 0 on every single criteria. She has told lies. She has twisted things I said in the assessment. She has jumped to illogical conclusions. Basically, she's decided that I'm a fraud, and done her utmost to prove it with every single thing she has said in her notes. And thus, the panic attack happened, which I already blogged about. It angers me so much that this woman is probably sitting at home with her feet up, enjoying a film and a glass of wine, having screwed up several peoples lives on purpose every day. And even if I do get through the appeal process, she'll never know the damage that she's done. Or care.

I was exhausted on Tuesday morning, not surprisingly, and covered in random bruises. I'm struggling to sleep at the moment, without the added stress the DWP are giving me. When I got up I noticed that I had an odd itch when I peed. As the day went by it got worse and worse until in the evening it felt like red hot pokers being stabbed up my flu. I phoned NHS Direct who said I had cystitis (which I'd guessed), and needed a course of antibiotics. The problem being that I was going to Bev's the next day. So I had to go to the out of hours doctor. I don't think I was really in the right state to drive, but I went to Samuel Johnson in Lichfield anyway. The out of hours doctor was lovely. My urine was tested and bacteria found; I wish it was that easy to test for and prove CFS. So I went to Tesco, got my antibiotics, and went home. And of course, when I got home I found I'd left the oven on with my dinner in it ... oops.

So, Wednesday I drove to Bevs. It was an ok journey. I couldn't cope with music, which is unusual for when I'm driving, so I just had Radio4 on fairly quietly. When I got here, I got out the car ... and went splat. My legs were like jelly .. having to concentrate on every step I take, because it feels almost as if my foot isn't properly on the ground. I came in, and I flopped down on the settee, and went straight to sleep. Some visitor I am.

I texted Bev to let her know when I was awake again. We had a long natter about G. I met Beano, Bevs new kitten . I was so exhausted that I couldn't support myself to sit up, so just lay on the settee to talk. I checked my email and text messages and found that all but three people had cancelled coming to the party at the weekend. This annoys me particularly; why wait until I make the effort to come here, and then let me down? I hate that I always make effort for my friends, and rarely get it in return. I hasten to add that Bev and Mark are absolutely wonderful. Bev left me to have another rest, and I just cried into my pillow until I fell asleep again. She tried to feed me in the evening, but my appetite had gone.

I woke up yesterday (Thursday) morning at 8am. I couldn't go back to sleep. I had all of the DWP stuff going around my head. I kept drafting letters in my head, and thinking of things I wanted to say for my appeal. My head was spinning, and not in a good way. So I turned my computer on. First of all I wrote a cover letter for all of my appeal bumf. Then I wrote a personal letter to whoever it is that receives this stuff. I then looked up my old managers online. I found Eamonn on Facebook, contacted him and asked if he could write a letter saying that I used to enjoy my work, that I didn't take liberties with sick days, and that it's not my character to be a fake. I can't find Kevin. I found Lee on LinkedIn.

By the time I had run out of steam it was 11:15am. I could hear that Bev had just woken up and was starting to move around. I was exhausted and needed to go back to sleep. She came down and said hi, told me off for getting myself in a complete tizz again, and then let me rest. I sobbed my eyes out. It is ridiculous how much this is stressing me out. I got through an entire divorce without needing to go back on anti depressants, and THIS is what's pushing me over the edge again.

When I tried to stand up I failed. Every time I try and rise my knees fail me. With concentration I manage to become upright, but with every step I bob up and down, like a weird curtsying maniac. I've become light sensitive again, so am wearing my dark glasses. And my appetite is just gone. Bev's feeding me anyway. I rested for the remainder of yesterday.

I was hoping that when I woke up today I'd have my legs back, but I don't. We've cancelled the party. I'm already stressed and hurt at the fact that nearly everyone has cancelled at the last minute, but I just don't think it's sensible to go out when I can't even stand up. Plus why waste money on food I won't be able to eat?

I'm supposed to be here, at Bevs, for a week. All I can say is it may be longer if I am still in this state by next Wednesday. On the other hand, if I recover sufficiently before then I'll go home while I'm able, as I just don't know when I could crash again.

Monday 6 June 2011

Mortified :(

I'm so ashamed. I thought I was over anxiety attacks, but I nearly had a really really bad one this evening. I never know quite what is happening when having an attack. I don't actually lose consciousness, but do kind of lose awareness. I 'came to', wracked with sobs, teeth chattering, on my knees on the living room floor. My left arm has massive scratches down on it, and when I regained awareness I was just starting on my right. I can see massive scratch marks on the carpet from here .. and my right hand is hurting, so I think I must have hit something. I can't believe I've let this happen. I'm so so disappointed with myself :(

So why am I all worked up?

This morning I received the decision about my DLA application. They turned me down. I didn't really expect to get anything. I have never got anywhere with DLA applications. It's the fact that they used my ESA assessment as 'evidence' to turn me down that got to me.

I received the assessors notes on Friday. I have spent today going through them. It's taken me absolutely hours. I have cried my eyes out over it all day. I just cannot believe how these things work. The nurse that did my assessment should be sacked. She's lied. She's twisted things I've said. She's ignored things I've said. She's made assumptions, and contradicted herself in the report. I just don't know what to do. There is no way I'm ever going to win.

I've been wondering if it might be worth claiming JSA instead. Basically I'd be relying on getting a JSA advisor who could see I was ill and refer me back to ESA. Knowing my luck I'd just get thrown off JSA as well.

At the end of the day I'm aching so badly all over. Sure .. assessor woman, I don't have anxiety issues, and CFS doesn't affect me at all.

*sigh*

Wednesday 1 June 2011

ATOS Assessment Interview - YouTube Spoof

My understanding was that the assessors were doctors or nurses actually, but the rest of this is exactly what it's like.



Limited Capability For Work Assessment

One of my friends sent me a couple of links a couple of weeks ago. On these links they go through the criteria you are assessed on in the Medical Assessment. She suggested I go through the websites and work out what points I think I should have scored on the assessment. Since she sent them though I've been too foggy to make any sense of the websites, let alone go through them. This evening I have felt up to going through them. I hope this doesn't mean I'll slip back into fog land tomorrow.

Bare in mind I was scored zero on every criteria. Also bare in mind that M.E. is a fluctuating condition. I have gone through and been as honest with myself as I can. I've made notes regarding how I am at the moment, and added notes regarding how I am at my worst, and how I am when I'm not as bad as I am now. I have found that the least I think I should have been scored is 69 points. The maximum would have been 108 points. To put this in perspective; the minimum you need to pass is 15 points. 

Anyway .. here's my assessment of myself:

1. Mobilising unaided by another person with or without a walking stick, manual wheelchair or other aid if such aid can reasonable be used.

c or d

I use a shooting stick. I had it at the assessment, and it was discussed. I use it for walking to take the pressure from my lower back because I have back problems that cause me a lot of pain.

I am uncertain of how far 100 or 200 metres are. If I walk without the stick I will be in pain very quickly.



2. Standing and sitting

C) Cannot, for the majority of the time remain at a work station for more than an hour before needing to move away in order to avoid significant discomfort or exhaustion.

She asked me how long I use a computer for. I guess they assume that using a computer means at a desk. I can't sit at a desk for more than ten to fifteen minutes, because it is uncomfortable. I cannot explain the sort of discomfort; it's an ME thing. Sort of as if being up right feels wrong. I sit on the settee with my laptop .. I still have to change position every half hour or so to avoid back discomfort though.



3. Reaching

d)
None of the above apply.
a) Cannot raise either arm as if to put something in the top pocket of a coat or jacket.

Recently I went through a phase where I just could not lift my arms at all. I want to get benefits in situ before I get back to that state again, as I simply will not be able to  make applications and stuff in such a state.



4. Picking up and moving or transferring by the use of upper body and arms.

d) None of the above apply.



5. Manual dexterity

Varies between
b) Cannot pick up a £1 coin or equivalent with either hand
d) None of the above apply.

I have phases when it feels like I'm wearing boxing gloves on my hands. It's so clumsy that I just can't hold things. This is not the norm though.


6. Making self understood through speaking, writing, typing or other means normally used; unaided by another person.

c)
Has some difficulty conveying a simple message to strangers.

I am fine at communicating with instant messengers and the likes of Facebook. Putting a letter together will take me a couple of days to make it make sense. I am telephobic, so if you get me on the phone I freeze up. And apparently I am not good at communicting my meaning verbally (according to my counsellor).


7. Understanding communication by both verbal means (such as hearing or lip reading) and non-verbal means (such as reading 16 point print) using any aid if reasonable used; unaided by another person.

d)
None of the above apply.

My vision is fine and my hearing is nearly fine. I struggle sometimes to consciously acknowledge that I am being spoken to, but that's not a sensory issue.



8. Navigation and maintaining safety, using a guide dog or other aid if normally used.

d)
None of the above apply.

All of the available options involve sensory impairment again. And again, it's only because of brainfog that I struggle with this.



9. Absence of loss of control leading to extensive evacuation of the bowel and/or bladder, despite the presence of any aids or adaptations normally used.

c)
none of the above

My back problem can cause incontinence at times, but Tenna lady pretty much sort it out til my osteopath fixes me again.



10. Consciousness during waking moments.

a)
At least once a week, has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration.

Brain fog!
I'm not sure I'd actually want to admit this though in case they took away my driving license.
It's hard to explain brain fog to those not familiar with it themselves. It's like trying to think through soup. Like everything I see or hear has a bit of a delay on it, like it's in queue waiting to be processed. I'm often mistaken for being drunk when I'm fogged; both by friends online and people in real life. Usually it comes on slowly, but sometimes it feels like a switch is flicked in my brain and I go from being fine to fogged. (This is why I'd rather have someone with me all the time).



11. Learning tasks.

c or d
c) Cannot learn anything beyond a moderately complex task, such as the steps involved in operating a washing machine to clean clothes.
d) none of the above apply.

Since I've had CFS I've developed what is very much like a learning difficulty. I normally tell people I'm dyslexic coz it's the easier way to get round it. The reason I'm not sure which to put, is because I *can* learn things, but I have to do them myself .. multiple times .. and even then they won't necessarily stick in my brain. I won't learn by reading, or by someone showing me.



12. Awareness of every day hazards (such as boiling water or sharp objects).

c)
Reduced awareness of every day hazards leads to a significant risk of injury to others or damage to property or possessions, such that they occasionally require supervision to maintain safety.

It's hard to explain this. I've been ill for ten years, so my entire house and life are geared towards me not having such problems.



13. Initiating and completing personal action (which means planning, organisation, problem solving, prioritising or switching tasks).

c)
None of the above apply

Brain fog. I will frequently forget what I am doing, what I was about to do, or what I just did.



14. Coping with change

c)
Cannot cope with minor unplanned change (such as the timing of an appointment on the day it is due to occur), to the extent that overall, day to day life is made significantly more difficult.

I plan my time meticulously so that I can rest before and after any actions. If someone changes the times of anything I'm required to do ... erm .. I'm bollocksed!



15. Getting about

c)
Is unable to get to a specified place with which the claimint is unfamiliar without being accompanied by another person.

When navigating by foot I often forget where I'm going even when going somewhere familiar. If going somewhere unfamiliar I have to repeatedly ask people for directions, and then still go the wrong way.  I generally avoid trying to find new places because of the extra fatigue the stress causes, and the pain walking round in circles causes to my back.



16. Coping with social engagement due to cognitive impairment or mental discorder.

c)
Engagement in social contact with someone unfamiliar to the claimant is precluded for the majority of the time due to difficulty relating to others or significant distress experienced by the individual.

I am assuming that precluded means avoided, or cut short. Ten years with no social life has rendered me terrified of meeting new people. Very high anxiety levels. The fact that I'm forcing myself to do it since my husband left is probably something I shouldn't mention to the DWP.



17. Appropriateness of behaviour with other people, due to cognitive impairment or mental disorder.

c)
Occasionally has uncontrollable episodes of aggressive or disinhibited behaviour that would be unreasonable in any workplace.

Apparently. The way I behave seems natural and normal to me .. I'm never really aware that it makes people uncomfortable until someone tells me :(