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 :(

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.

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*

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 :(