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

Red Nose Day

We made it to the caravan yesterday, so are celebrating Red Nose Day in Bwlchtocyn.

Poem from 1989

I'm sure daughter won't be terribly pleased that I've posted this here... But I want to keep it somewhere it I can find it, and not lose it merely because the tatty piece of paper it's written on disintegrates. I think it's a great poem for an eight year old. Proud Mum!

After all these years am still a proud Mum of both my wonderful daughters.

25th April 1989

The Snail

Mrs Snail went out for a slither one day
And the sun was shining bright and gay
But Mrs Snail gave a silent wail
For a small thin bird was out for a glide
And of course Mrs Snail didn't want to be spied
So she quickly went to hide.
The hungry bird flew out of sight
And Mrs Snail felt Joy and light.


(It must be fairly obvious that I wasn't a gardener back then!)

More at the flat

We went back to the Flat again today. John washed the bathroom floor, and I did more hoovering. It really was hoovering, as was using Mum's Hoover. But between all of that I sat and watched the sky some of the time.



We packed up yet more stuff and have brought it home. We need to do some decluttering as a matter of urgency!

John picked up some Chinese meals from Morrison's as on special offer for Chinese New Year. Spring rolls for starters, which I am eating now, but they're a bit on the hot side, so am only nibbling till they cool a little more.

We've cleared most of the stuff from the flat now, last few bits need help to shift - eg bookcase still there is too heavy for John to manage on his own. Helen may be able to help on Thurday - last day before Completion of sale.

John had fun watching a boat practising sailing skills.

Still clearing the flat

Went over to the parental flat again today after John took the Band to catch their train back to Cambridge and did the shopping.

I washed the fridge really thoroughly - it wasn't that dirty, but now I would happily put food in it. Before my feelings were it was a bit iffy.

Cleaned bath and basin. Hope we can wash bathroom floor before Completion on 30th.

We brought more stuff back. We have more stuff to bring back still. Prob 2 car trips still.

I am shattered! Sorry no photos - while it was sunny and still when we arrived, wind got up and clouds came over while I was cleaning the fridge. Fortunately the wind abated before we left - was beginning to worry about negotiating the wind tunnel outside the front door to the building!

We may go back tomorrow, depends if I can move at all after today's exertions.