Conflicting reports

Exhaustion reigns at Dusty Towers. I'm still struggling to get back to my pre-funeral trip baseline. Mornings are a blur of getting the basics done and then I collapse on the sofa. A sleep helps in the short term but then I don't sleep at night.

So, back in January I had the dreaded work capability assessment. Unusually, the health practitioner doing the assessment managed to get under my radar. I have a problem of always painting a picture better than the reality. I can't help it, it's a defence mechanism because if I get in touch with the reality it is very uncomfortable. It is also an ancient survival ploy; to appear strong. Anyway, her perceptive questioning got past this and I crumpled like a crumply thing.

It being March already and no sign of a brown envelope I decided to give the DWP a ring to find out if I'd been found fit for work. Always a possibility. It has happened in the past and I have been stripped of my benefits. Apparently, on this occasion they have put me in the support group. This is the first time I have had my disability properly recognised and I have mixed feelings about it. Who wants to be classified as that disabled in a world where there is still so much stigma? I also have to confront my own internal prejudices about it.

If you don't already know there are two strands to Employment and Support Allowance: the Work Related Activities Group (WRAG) and the Support Group. If you are put in WRAG you are expected to carry out work related activities in preparation for employment. This could be volunteering, doing a part-time course or filling shelves for ASDA for nothing. You can do "permitted work" in WRAG and earn up to about £100 per week for no more than 16 hours work - but only for one year, after which you lose the ESA if you earn a penny more than £20 per week. I fell foul of this when I was well enough to work but not well enough to make the jump from 16 hours to the 25 or so I would have needed to make up the loss of my ESA. I tried and relapsed.

What the job centre doesn't tell you is you can get around this fiscal cliff by doing "supported permitted work". Find an organisation which helps peeps with disabilities into work. If you work under their aegis this rule is waived and you can carry on earning after the year is up. Pity I didn't know that before.

Also in WRAG you get bothered by summonses for work focussed interviews. I have always found these to be absolutely pointless. If you don't attend though they can take your benefits away. These are called sanctions, which is another name for punishments. The job centre sent me on a health pilot which was a programme designed to help me set targets, make better lifestyle choices and so on. It got me no nearer to getting better and, in fact, I found them quite stressful since they were so patronising and there was no continuity. One of the four different people I saw in the process suggested I try fostering to boost my income. My jaw just dropped. 

The support group is a slightly better place to be. You get an extra £7 a week, you can work up to the permitted work limits indefinitely and they don't expect you to attend work focussed interviews. It's where I expected to be with my level of decrepitude but it has not been recognised before. 

If you've read some of my previous posts you'll know I also applied for Personal Independence Payment and had the assessment within a month of the work capability assessment. I scored zero points according to the PIP criteria. I asked for a reconsideration and sent in some extra evidence. The reply was still zero. Apparently I chatted with my friend and went up the stairs to the loo. So I am appealing that decision.

What I want to know is this. How can I be so disabled I need to be in the support group on the one hand, but on the other I appear to have no disability that warrants even a point? The two assessments were within days of each other. Well, I think the answer is that the assessments are not fit for purpose and, of course there are plenty of other factors. Different companies assessed me, different places, different day, one at a centre and one at home, my fluctuating condition and so on.

Meanwhile, I'm working on recovery. I'm pacing and resting, looking at my diet, doing as much as I can outside of the house without overdoing it. Trying not to rant too much on Facebook and failing. Till next time. . .

Coming home.

I've been too devoid of energy to post at all. It took me a week to attend a funeral which was four hours' drive away. I broke the journey at my daughter's and she accompanied me on the day. There were people there I hadn't seen in years and who didn't know about my illness. It was hard to stand and chat. I could feel my energy clock running down and still a drive back in traffic ahead of us. I was well out of my window of tolerance and it was three days resting at my daughter's before I could make the two hour drive back to my home.

I feel angry about it, angry with the illness for stealing my ability to participate fully. I was glad for what I could do with the support of family - it was important for me to be there. In terms of energy cost though it was like a trip abroad with jet lag. I felt the same as when I'd come back from Malaysia once on an alcohol fuelled twelve hour flight. 

The brown envelope of doom was waiting for me when I finally got back. I have been turned down for PIP on reconsideration. Zero points. I will have to appeal. What some members of this government are doing to sick and disabled people is just wrong. I say some members advisedly. It is not all of them, just the elite Eton Boys. They are tearing through our society like some sort of unstoppable juggernaut. I will do my bit, I will appeal this PIP decision.

I have picked up a virus whilst mixing with The Normals as I call them. It almost feels good to have something everyone else gets. My colds are not particularly any worse because of my CFS/ME. I often think it is a good sign, I have enough energy to produce an old-fashioned immune reaction.

Back soon.

Preparing for a funeral - part 1

I'm getting ready to go to the funeral of someone who was quite important to me as I was growing up. Some families are issued with an instruction book which contains details of the how to's of child rearing, getting on in life, sensible money management and so on. I think my family had an instruction book but it was largely written in cuneiform script. The family that lived over the road, however, had the English version which was well-thumbed and regularly consulted.

I spent most of my spare time over there escaping from the chaos, cold and relentlessness of our unbounded lives at home. I think my friend's parents semi-adopted me as a sort of charity project but I was also a good friend and sort of sibling for their only daughter who is still my friend some half century later. It is her mother who has died.

When the father died twenty years ago I was inconsolable at his funeral. My friend pulled me onto the front pew to sit next to her and I just broke down whilst she and her mother sat bolt upright like statues. My own father had fled when I was six and this kind man had not replaced him exactly, but had shown me extraordinary kindness and given me some of those instructions I was so badly lacking. 

The mother I was a little afraid of. She was made of that stern Victorian stuff that so many of my school teachers seem to be stitched out of too; although she wasn't a teacher, she'd been a chemist and was now a housewife. My lucky friend had a whole person dedicated to her care and I hung around the periphery soaking up the left overs. My own mother was out much of the time cleaning, or later at college trying to bring up the three of us without the benefit of alimony. 

At times I hated my friend's mother. She disliked long hair thinking it dirty and I had long, thick and rather knotted tresses. I would have to endure hours of painful combing before I was allowed to get on and play whilst listening to rants about hippies, especially Tiny Tim for whom she nurtured a special horror. She was openly critical of my mum and horrified at how little I ate. I couldn't stomach the difference in the diet, their's was so much reliant on stodge and the servings were bigger. I remember having to tackle her cheese scones and pretend I was enjoying it between sips of orange squash. I did have my own table napkin and carved wooden ring in the shape of a parrot. A thing of wonder to me more because it was mine to use and mine alone, except when I had to share it with an aunt. I'm hoping my friend kept the parrot and it will find it's way back to me somehow.

On juggling.

I'm just sitting here trying to get my legs back after a shower thinking about what I need to do today, what I can do and what can be left. Living with little energy one has to be very choosy.

I really need to vacuum as I can tell my allergies are ramping up. It doesn't help that I have two cats in the house. One is mine, one is an interloper. If I vacuum though I risk going outside of my window of tolerance for effort which could result in a couple of days on the sofa crashed, or worse, a back spasm leaving me in awful pain for days. So, I can vacuum maybe one room but not thoroughly today judging by the state of my legs. Perhaps it's better not to vacuum today since I've had a shower.

Another priority I have is getting to the post. I have collected my further evidence for my PIP reconsideration and it needs to go today. I should have already posted it but it got pushed down the priority list as I've been too buggered to go out for a few days. Oh the irony. They've refused me PIP because I'm not bad enough apparently.

So no vacuuming today but a short drive to the local post office and I can pick up a prescription at the same time. Do I do that before or after lunch? I haven't got anything made so I'll have to cook. This is where it gets interesting. If I leave going out until this afternoon I may not get out at all, thus delaying the PIP letter further. So I'll have to go this morning but then I risk not having a proper lunch because if I cook AND go out I will exceed my window of tolerance. The answer then, is to not cook but buy a sandwich which is the less healthy option. At least then I will be able to save my "spoons" enough to get through the rest of the day and make myself a simple but healthy dinner.

The dust and cat hair will live on. I really ought to change my bed but that's a whole other dilemma best left to another day.

Making bread

I made bread yesterday. When I have the energy I like to bake, it's a good way of processing. It was also my turn to host our weekly craft night and I couldn't face going out in the cold to buy nibbles.

I made a wholemeal sharing loaf with olives and rosemary with a view to dousing it in garlic butter. After it's second kneading I shaped and cut it and left it to rise with a clingfilm cover. I think, but I can't be entirely sure, I put it in the oven with the clingfilm still on it. Later I noticed little hard globules around the edge which I picked off. When chewed they were definitely plasticky. I checked the packaging and it was non-PVA clingfilm so I served up the garlic bread anyway. It had a nice glaze.

I told my daughter about it and she said it was on a par with the time my mother buttered a photograph of a cracker on the packet rather than the cracker. She thinks I may have given all my friends cancer. I am unrepentant.

Getting a PIP reconsideration.

This week I have mostly been gathering evidence for my PIP reconsideration. Personal Independence Payment is a welfare benefit designed to help people with the extra costs of being disabled - allegedly. I was assessed at home recently and found to be completely ineligible. I did not score at all against the criteria, although they do accept I have disabling conditions. Cunning wording that. It means I can't challenge the decision against the Equality Act.

I get the chance to have this assessment reconsidered by a DWP manager but I need to explain why I think it was incorrect and submit some evidence to support my assertions. This is hard when they plainly do not believe me to start with. On the day of the assessment I had little pain, was moving freely and was more relaxed than I expected to be. What do they want me to do? Act ill? They just did not take my own account of my own condition as the truth.

I am asking my friend (who helps me with budgeting and financials), my daughter and my counsellor, all to write with hard evidence contrary to the findings of the assessment. It all feels like some elaborate game I have to play just to get my entitlement. The assessments are clearly not fit for purpose - tests only test what tests test. They didn't see me in Tesco's this week, leaning on my trolley and having to get the assistant to unload it and pack my shopping for me. They didn't see me crawling up the stairs to the loo or struggling to get my socks off at bedtime. The assessor, if she had come on one of these days would have found shopping and washing piled up in the kitchen, washing up not done and me incoherent with fatigue and pain. 

All of this is massively stressful. I am still recovering from the months of fear of losing my home, which made me suicidal, and then the sudden relief of negotiating terms to stay. It does mean though, that my PIP application is not critical to me keeping up with the rent. I see clear water ahead for the first time in a while.

A reprieve.

I saw my doctor yesterday. I had two pressing things to talk about and two non-urgent things, but since she's informed me in the past that she can only focus on one thing, I asked her to choose. I suppose it was a bit passive aggressive of me and, to be fair, she did cover the two pressing things: my suicidal ideation and my newly-developed asthma. She also dropped a bit of a bombshell, she's leaving at the end of the month. Being the sensitive practitioner she is, she well understood the ramifications especially since we have worked hard to establish a good relationship.

Anyhoo, I promised I wouldn't kill myself until I'd spoken to her first. I am trying to hold onto my home and have made an offer to my landlords of a rent I can afford in the hope they will prefer to keep the place occupied, rather than refurbish and let again. They were thinking about it and I have yet to hear. I have an extra bedroom you see. If I sub-let it the council will take the income from that off my housing benefit and the DWP will also take the same amount from my ESA, so I'd actually be twice as badly off. They would allow a joint tenancy and that, I suppose is the next step. I would have to convince my landlords it is worth the hassle for them, and I would also have to find someone I could trust to live with.

Better by far though than what I could afford on my own around here. I've lived in places like that before and I can't go back. Which is where the suicide comes in. Logically I know it is better to survive in a dump than be dead. There's part of me though that won't do it again because I would become terminally depressed with no chance of recovery this time. I've lived with the dealers on the landing, the alcoholics with their fights and chaos, the crazies running amok with a carving knife. The dog shit on the stairs and the constant thump, thump of a sound system somewhere.

I have worked hard to get out of all of that. I've worked hard to be a part of my little community, to keep myself afloat, and to give back. To get out of the lay-by of life and be part of things.

-0-

Just heard! My landlords have come back with an offer I can just manage. Just. I was going to delete the above but I'm keeping it there as a reminder never to give up hope.