The two bus journeys back, even though simple and with almost no walking in between, have wiped me out. Much of the weekend itself was spent asleep or horizontal. My palpitations (after the recent massive diabetic hypo), nausea, pain and dizziness have been very much part of the celebratory weekend.
Thankfully, I managed to rest up enough to do what I'd promised at Mum's local church on Sunday. It's a small congregation who have known me since I was a child. They're too kind to spot mistakes I know I made, or judge me for having to slump in the chair at times instead of standing in the pulpit non-stop.
I had to lie down and sleep at a friend's before the lunch she'd invited us to share afterwards. Words didn't come so easily when I didn't have them painstakingly prepared and written down in front of me. Small talk can be such a big deal with M.E., can't it? I felt like I'd got both eyes in the same socket after a few hours. I still count my blessings at what I can manage, compared to me at my very worst with M.E. though.
Coming back through my own front door yesterday, I found myself paddling through a mountain of mail. Much was the usual junk. Some was belated birthday cards. One was the dreaded brown window envelope so many of us have been waiting for so long. D.W.P.'s return address in Belfast was printed on the reverse, and these were the first words my eyes picked out in the whole untidy pile. I opened it before I even took my coat off. Better to know than yet another day wondering.
It was good old IBM01, all four "helpful" pages, telling me about the changeover from Incapacity Benefit/Severe Disablement Allowance/Income Support to Employment & Support Allowance. Explaining that as "customers" (don't you love that meaningless, patronising term in the circumstances?) "will be considered and assessed for Employment and Support Allowance between 2010 and 2014", "We are writing to you because you are affected now".
They check they have the right contact phone number and promise to phone some time in the two weeks following date of posting (8th October). It's almost exactly three years since my last DWP medical assessment which I passed. Although I face the same health problems most days as I did back then, plus some extras, I fully expect to be disallowed this time. We all know it's no longer about disability. It's a cost-cutting exercise in which nothing and nobody is treated with medical insight or even the wisdom of common sense.
So now the sickening wait for the first brown envelope to fall is over. Now I'm waiting for my mobile to ring so they can confirm my identity, and begin to find reasons they can brand me a workshy scrounger. I don't recall being that cynical the last time I was assessed. I had no reason to.
After that, I'll be sent the chunky health questionnaire, "Limited Capability for Work", struggle my way through that, then wait to be called to the WCA (Work Capability Assessment) and then the sword of Damocles will fall. I don't know whether I would have the strength to grind myself down and waste my last few "spoons" in an appeal. Another visit from the church next week to see if, one way or another, there is something I can do with the little sporadic health I have. That will be a lifeline, not least if the little I have to live on is snatched away.
I recently read a shocking story that these forms are first opened by postal staff! I can't even decide whether to mention this to the person who rings me. Or will that cross me off from credibility right away? Que sera sera. I just pray I have the strength to stay positive and gracious now this terrifying ordeal is beginning at last. It can never be quite as trying, draining and humiliating as living with chronic illnesses is, now, can it? Or can it?
I have to stay strong, so in future I can still be some use or encouragement to others faced with this disease. We can do this, but not alone!
In other news: tomorrow I see my GP for the first time in a while, about the recent hypo leaving me further weakened by palpitations, just to check my heart is behaving itself.
In the best news of all: my 50th birthday fundraiser for Invest in M.E. has already made over £800 for the charity, smashing my £500 target with an amazing 161% of total! Further donations are still being promised, and my page is still open for donations till 31st October at the end of the month!
Joyce's 50th Birthday Gift For Invest in M.E.
A HUGE thank you to everybody who has given whatever they can to make my birthday wish come true! You are potentially helping all those with M.E. to have the chance of a brighter future! Bless you! Please know what a difference we can make together. We need each other more than ever in these difficult times XXX
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