ME Awareness: The Lost Years, Cancer and ME by Sylvia Hine | 08 May 2020

May 8, 2020

By Sylvia Hine.

My story began 30 years ago. I was ill off and on for about a year then I got pharyngitis and I have never felt well since then.

I was so ill I was bedbound most of the time and yet I didn't know what was wrong with me and the doctors didn't know what was wrong with me either.

Sylvia and her husband.

My children were in their teenage years and I felt useless as I was asleep most of the time.

After 1 ½ years I was diagnosed with myalgic encephalomyelitis/encephalopathy or M.E. I was told there is no cure and nothing I could take for it other than paracetamol.

I always thought when my children grew up I would go back to work or further my education, but I got to do none of these things.

After about 10 years I was prescribed Amitriptyline and for the first time I felt a lot better. I have also learned to pace my life the best I can but is not always easy to gauge it right.

I feel like I've missed so much. It’s like I've lived only half a life for 30 years, and then to cap it all in 2016 I was diagnosed with bowel cancer. It has been another cross to bear and I was back to being bedbound while going through radiotherapy, chemotherapy, 2 operations and then more chemo.

I feel like I'm getting back to normal slowly, but I will never be fully recovered. I do the best I can most days. I still look back and think about how much I have missed in my life, but I have come to terms with it.

One of the worst things I have faced is other people who don't understand M.E. and who think you are just lazy or putting it on. I've learned to disregard these people and realised that while I know the truth – they know nothing.

The last few weeks have been quite busy for me – despite the coronavirus lockdown. Hospital appointments, blood tests and a colonoscopy.

I am sorry I don't have any more photos. I was far too ill. I have experienced; pain all over my body, headache with light headedness – it felt like a tight band around my head – shoulder pain, constant sore throat, neck pain, face pain, arms and legs, fingers, toes, teeth, gums; my skin hurt if I was touched, I could not stand noise, or light…

I was stuck in my bedroom constantly; I felt like a prisoner. I only got up to go to the toilet and that took me ages as my legs were wobbly. When I got so fed up being stuck in my bedroom I tried to venture downstairs, I had to bump down on my bum as I had no strength.

Help with energy management and pacing.
Help with M.E. symptom management.

I would manage to sit down and watch about 10 minutes of TV and I could not stand the light and noise so I would crawl back to bed to stare at the ceiling.

I missed at least 10 years of my life because of M.E. and my children's life during that time. After about 2 years of living like this I managed short visits out but as soon as I got home I went straight to bed.

Gradually I managed a little bit longer awake and succeeded in making tea, but then I would be wiped out. It took me a long time to master the art of pacing because I'd do something and feel I could go on a bit longer and that was a mistake because I had done too much.

I soon learned to conserve my energy. I lived my life in this sort of limbo for at least 10 years. If I had to go out I would stay in bed until I just had enough time to get ready, and then come home and rest again.

I was like this until I was put on the Amitriptyline, when suddenly I found I had more energy and felt better but I still don't have my full strength.

The only way I can manage is to do a little bit then I make myself sit down and by doing this I can manage. But this is still only living half a life.

Looking back over 30 years, my life has not panned out as I had hoped. I have learned to make the best of the life I have now, but one of the worst things I have had to cope with is other people’s reactions.

They tell me I look well enough, but they never see me when I have a relapse. If they did they would perhaps understand because I can look like crap.

People need to be made aware of M.E. and learn not to treat us as if we were lazy when we are ill and are simply trying to make the best of a very bad job!

The ME Association

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