Silver Sufferers

Blogging for ME/CFS Awareness

Way back in 1955 there was an outbreak of M.E. at the Royal Free Hospital. It mainly affected nurses and doctors, they would have been young people back then. Now they will be pensioners, and I wonder how well they are doing now. Hopefully some will have made a recovery, but how many of them went on to become some of the 25% group who are housebound and/or bedbound?

Recent campaigns by M.E. Charities have concentrated their efforts on young people with M.E. This is a good thing, as it is a very difficult thing to live with M.E., and it is sad to see young people suffering, losing their teenage (or even younger) years to this horrible illness. It impacts on their education as well as their social life. So even those who recover have lost a part of their lives, and will have difficulty catching up on qualifications they need for the careers they wish to pursue.

But I begin to feel that older people with M.E. are being forgotten.

Even in "the prime of life" (whatever that is!) M.E. is a difficult illness to live with. It is hard to meet friends; let's face it, it's hard just to make a cuppa tea or coffee!

Last year I turned 60. I now receive my Old Age Pension. At least I will never have to fill in another IB50 form, sweat over it for weeks, and worry that I will lose my Incapacity Benefit.

In the previous few years I saw my parents becoming more and more frail, and eventually dying after some months in nursing homes. I was not able to help them in the last years they remained in their own home.

My Mother pleaded with me to go and stay with her after she had a fall, was in pain, and couldn't manage at home. I couldn't. The next day she was admitted to hospital, descended very quickly into dementia, and after a few weeks in a nursing home she died.

While my Father was in a nursing home I hardly managed to visit, as most of our energy went on trying to continue to help my Mother, and then visit her in hospital.

As an only child I felt stretched between them, unable to help either.

I am one of the lucky ones. My husband continues to care for me, to do nearly all the shopping and cooking (we gave up on the other housework other than the most basic cleaning!). Our daughters help when they can. And because of the help that I get from my family I am lucky enough to be able to enjoy the little energy I have, to take some photos, to do a bit of gardening, and currently to be staying at our caravan in Abersoch - John has left me with a large pan of delicious stew, and plenty of other easy to prepare food.

But what happens to those M.E. patients who live alone? After many years of struggling with the most basic of life's chores, as they age, how will they manage? I don't see that Social Services will be of much use - already I hear stories of how "carers" provided by them are refusing to do things that in the past they might have done, such as shopping and cooking.

We all are getting older, we read in the papers that the aging population is a time bomb, there won't be the money to look after us baby boomers. But how much worse is it for those who for years have had this damned disease? No job, so no comfortable pension, no circle of friends, no supportive partner or family for many. And as we age, those of us whose parents have looked after them may see their only support become too incapacitated themselves to help any more. So who will help them then?

Perhaps it's time for the M.E. Charities to begin to campaign for us old age pensioners with M.E.?



Sunset at Bwlchtocyn

International ME/CFS Day 2007

Not sure what this flower is - bulbs planted in a hurry between showers. Might it be a ranunculus?

Today is International ME/CFS Day. It's also Florence Nightingale's birthday - some people believe she may have had ME. She certainly had some sort of disabling, relapsing and remitting illness. She may have had chronic Brucellosis, as suggested by D A B Young, formerly principal scientist, Wellcome Foundation. Maybe that's another thing that could be checked for in ME/CFS patients.

Was very pleased to see that Dr Crippen included a post from Mary in this week's BritMeds about her recent consultation with her (locum) GP over her DLA renewal application. I have always been looked after both well and kindly by my GPs, but I have heard many stories similar to Mary's.

Dr Crippen also included a link to an article in the Scotsman about the spread of Ticks and Lyme Disease in Scotland. The lady in the article was misdiagnosed with ME, and I wonder how many other ME patients may be misdiagnosed when they really have Lyme.

This time last year we were staying with Sarah in her shared house in London. We demonstrated outside the Department of Health, and I presented documents from the MEACH Trust to 10 Downing Street. We did some gardening too.

This year we have had too much on our plate with Dad's hospitalisation and then discharge into a nursing home to have been able to travel that far - we haven't even made it to the caravan yet.



I like the way the raindrops have spattered the black pollen around the petals.

PS The knitting is going very slowly (and is also very mistakey!). About 1 or 2 rounds a day. But I think (hope!) it's longer than it was the last picture I took. I don't think John will mind the mistakes (he's not a knitter, so probably will think it's supposed to be the way it is), nice soft warm wooly socks, who cares about mistakes.