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.

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.

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.