Image description: picture shows an open book with My Story written on the left page. A fountain pen sits in the middle of the open pages. The MEA logo bottom right.

The Count ME in campaign: My story


Part 1

I’m a 71-year-old lady, who started with symptoms at the age of 16 years, after an influenza C virus, and subsequent blood tests showing an adenovirus.

I never fully recovered. I started my nursing training, completed almost 3 years, but after several long bouts of illness and time off, I was not able to complete the training. I got married instead, had 3 children, and coped reasonably well, on the whole.

That’s how it stayed, periods of being well, but constantly plodding on.

That was until the Covid vaccinations, I had 3 and was really not good at all, and since then have just deteriorated a lot, being virtually housebound. I’ve not had to be bothered with Doctors, as I was a married woman, so didn’t need certificates

Doctors never  appeared interested, especially in the early days, and l just knew to plod on the best I could.

It’s been a different sort of life from the norm, but I was / am content to centre my life around my home, and I was in a privileged position to be able to do that. Doctors always made me feel that the ball was in my court, they couldn’t help me, no cure, make the best of it.

Of course, there are many other issues, but that’s the bones of the situation!

Part 2

I just wanted to add what life for me is like now, as I know how helpful I find that, reading about other people’s lives helps enormously, and I don’t feel like I’m the only one suffering from all sorts of weird symptoms!

I mentioned I’m virtually housebound, only going out to get my hair cut every 5 weeks, and every three months I have a blood test for a thyroid problem. I hate it and am so very weary for about a week following. Often too weary to get dressed and I sleep a lot. Having visitors is lovely, for a short time, but then it’s the same thing, just feel so poorly and weary for days afterward. Stress has the same devastating effect, but life IS stressful. I also have fibromyalgia, or maybe it’s just the muscle pain of the M.E/CFS who knows, the pain is constant.

One of the hardest things to cope with is being misunderstood.

People don’t understand, they think they do but they really don’t and can say the cruelest things, like ‘make an effort’, ‘the less you do the less you want to do’, ‘surely you can walk that distance, it’s not far at all’ ‘you look really well’ etc. etc.  They can’t handle it and get exasperated with me because they just don’t get it! It all just adds to the stress. 

I cope best, just being at home, going at my own pace, and doing what I can when I can.

The thought of having to see a Doctor, or hospital visit fills me with horror, there is no way that I would cope with it. That is the reality of the situation, not just for me, but for many other silent sufferers.

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