ME Awareness week:
Gwyneth’s ME story part 1 – trapped in my useless body
Gwyneth Hopkins is one of a small percentage of people who has recovered from ME within 5 years. Here is her story, told in 3 parts.
I suffered from ME from September 1998 to October 2003.
Getting a diagnosis
In November I was rushed into hospital with what was diagnosed as a mini stroke. I was kept in for nearly a month undergoing endless tests, a lumbar puncture and multiple scans. In the end by a process of elimination they diagnosed ME. It was useful having an early diagnosis but they wanted to keep me in hospital because I was so weak. In the end I had to beg to go home. Hospitals are noisy and being in a stroke ward the lights were on all night and there was noise as the other patients were being attended. The lights hurt my eyes and I was very sensitive to sound.
The trouble was that to do the tests, they were injecting me with different chemical substances and eventually they were injecting me in the stomach twice a day with something to thin the blood because I had become bedridden and they were worried that I’d suffer from blood clots.
I didn’t realise it at the time but now I know I’d been getting weaker as a result of even more overload on my body caused by foreign substances (injections) on my already overloaded immune system.
Year One
The first year was spent suffering from multiple symptoms and pains and on an average day I spent 5 minutes out of every hour out of bed, usually just enough to wash or go to the loo. Sometimes the short walk to the bathroom exhausted me so much I’d collapse and be unable to move for nearly two hours when I was then able to walk or crawl back to bed.
In the first few months I had magnesium injections on the suggestion of my GP and they helped a lot with the muscle pain. I also tried Amitriptyline to help with the lack of sleep. I did sleep a bit longer when I eventually got to sleep but I took myself off it because of the side effects and took Bach Flower Remedies instead.
By the end of the first year I had experienced all the following symptoms:
- Fatigue sometimes so bad I couldn’t chew food.
- Falls where I would suffer temporary paralysis for up to 2 hours
- Sore throat and swollen glands
- Headaches and sinusitis
- Muscle pain and tingling in the arms and legs mainly on my right side
- Feeling freezing cold for months
- IBS
- Gritty eyes
- Sore face and cheek bones
- Lack of concentration
- Unable to co-ordinate brain and hand to write properly
- Short-term memory loss
- Often sore to touch & sometimes-itchy skin
- Mood swings
- Found it hard to get to sleep even though I’d feel exhausted
- Suffered vivid dreams and nightmares
A visit from my granddaughters, summer 1999. I couldn’t pick up my youngest granddaughter so she was placed on my arm.
Years 2-5
By the end of the second year I could spend about 15 minutes out of bed in an hour. I could occasionally manage a walk in the garden in slow motion or just sit in a chair. I had a reclining wheelchair at first because I couldn’t hold my head up for more than a few minutes, then I progressed to an ordinary wheelchair.
In the third year I hardly ever went in a wheelchair, except on outings. I could occasionally manage to walk 1/2 mile (as others with ME will know, when you manage something like that you never know how long it will be before you can do it again) but I still spent a lot of time in bed. If I overdid it I ended up back in bed unable to do anything, sometimes for days but more likely for weeks. It can seem so cruel because just when I thought I had a bit more energy I seemed to be punished for using it. It was very frustrating learning how to pace myself.
I still found standing still and lifting difficult but I could now lift the kettle. 🙂
During the worst years of my ME not only did I feel trapped in my useless body but I also felt guilty that I was so helpless and my husband had to wait on me as well as hold a full-time job. I had to lie there seeing him getting more and more tired and stressed with it.
I made gradual improvement with a few short relapses until after 5 years I was completely recovered by the autumn of 2003. I believe that my recovery was due to going down the complementary route.
By the end of 2003 I was back riding horses and walking in the hills and even went to college, all unimaginable 2 years before!
Gwyneth Hopkins, West Wales
Part 2 of Gwyneth’s story will describe the complementary therapies she found helpful on her way to recovery.
My daughter has had ME for the last 27 years, since she was 11 years old when she suffered a bad attack of glandular fever. She was a few weeks into a public school, where she had gained a place on merit. She was extremely bright and enthusiastic, playing cello in a junior orchestra and she excelled at sport.
Staying at home in self isolation is nothing new for her. She has her bedroom blind closed most of the time. Her body clock is reversed and she is asleep during the day, despite several attempts to change this. She has pain in her muscles, is light and sound sensitive, and suffers with brain-fog and extreme unnatural exhaustion. She is only just able to go to the bathroom herself. She is an immensely independent and private person, and sometimes it is a struggle. Often a conversation is too much for her and she shuns any company most of the time.
May 12 was chosen as it coincided with the birth date of 
ibbons are used by many groups as symbols of support or awareness. The ribbon colour used for ME/CFS is blue, for Fibromyalgia it is purple and for MCS it is green. In all cases, the ribbon colour is not unique to the cause but is used for other causes as well.
You have always been there
Now you stand back a little as walks become longer,
We feel like sitting ducks, just waiting to see if COVID-19 will strike our nursing home. If COVID-19 does hit us – how many of us will die? Surely our nurses and carers won’t abandon us, or will they?…
Not knowing what has happened to you.
In early March 2020 I spent two weeks with a virus, which may or may not have been C-19. The route of infection was probably via my brother, who appears to have been infected by a friend returning from a skiing trip to Northern Italy at the end of February. I had all the symptoms but couldn’t be tested, as no-one in the chain of contacts had been formally diagnosed with C-19.
