“Will I ever get better?” replaced ”When will I get better?” as a constant question to my GP as the months went by and I saw little improvement.
"My illness began in November 1995 following a severe bout of flu that lasted two weeks, during which I felt as if I had an egg whisk in my brain. I thought I had avoided the flu which had been rampaging through Britain for several weeks but, one morning, unable to get out of bed or even lift my head off the pillow, I realised I hadn’t.
"Three weeks later, after one week of feeling better, I awoke to find no power in my muscles, severe pain in all my joints and muscles, a blinding headache, rapid heart beat, raging adrenalin, a feeling of panic and an inability to focus or even think. For several weeks I had only enough energy to crawl down the stairs, sit in a recliner until 9pm and then crawl back up to bed.
"When I did try to shower I had to drip dry because my arms wouldn’t work and eating even half a piece of toast was exhausting.
"Each time I felt a little better I would try to do a simple job only to relapse the next day. It felt like having the flu, running a marathon, being terrified and having dementia all at the same time.
"My daughter, who was at university a few miles away, came home several times a week to help.
"In my first career I was a college lecturer with an excellent memory. Suddenly I was unable to retain a sentence I had just read or even make sense of the written word. I could not watch the television as it was too bright and noisy. All I could do was lie flat for hours on end. I felt as though I was going mad.
"For months I was only able to tolerate a conversation with friends for about five to ten minutes before exhaustion set in. I soon learnt who my real friends were. Many friends couldn’t and still don’t understand as I can look quite well. I tell them that I only go out on a good day and I have to pace myself to achieve that.
"As my energy improved a little I sought help from different sources though none were successful. Despite my GP’s reassurances, I asked him to refer me to a psychiatrist as I thought I was going mad. The diagnosis was that I was perfectly sane but that my brain was being screwed up by a virus or viruses.
"No suggestions for recovery were made. My GP helped enormously by suggesting that I just visit him every month to talk about what he diagnosed as Post-Viral Fatigue Syndrome. His kindness helped and I felt uplifted after each visit.
"Months and years went by and I sought help from nearly every conventional and alternative source. I spent an incredible amount of money trying to get better and reading everything I could on M.E.
"As well as the loss of my social life and many friends I also lost my career overnight. My second career as a physical therapist working with a chiropractor in a busy practice brought me into contact with many people from all walks of life. I had loved meeting people and being able to help them. I was now isolated and the sudden loss of all power in the body (as though I had been ‘switched off’) made me afraid to go out in case I couldn’t get home.
"Now that I am 60 per cent recovered some friends can recognise the signs of an imminent collapse and make sure I have somewhere to lie flat and recover for two or three hours.
"A distressing symptom of M.E. which still continues for me today is the inability to sleep. A racing heartbeat and the constant surging of adrenalin means the body never relaxes. When I do doze my head is filled with bad dreams and nightmares and when I do wake I am even more exhausted.
"This is not normal exhaustion. It is like walking through a sea of thick mud carrying a back pack and with your head full of fog.
"The experts suggest relaxation tapes and graded exercise. The relaxation tapes may work whilst you’re listening but even they can sound too grating on the brain. The graded exercise programme left me even more exhausted.
"The distress of both parents dying and the practicalities of dealing with their effects contributed to this fatigue as did an operation for gallstones.
"Looking back to the years before my illness, I can see some possible precursors. Whilst at university I was seriously ill with glandular fever and almost died. This is now known to be in the background of many with M.E. I always tried to fit 36 hours into 24 hours and for 15 years gave an immense amount of support to family members during times of severe stress. In 1995 I had a series of injections for a once-in-a-lifetime trip to India which left me feeling ill and a recurrence of a serious back injury resulted in the India trip being cancelled.
"A year into my illness major spinal surgery resolved the back problem but left me with a long recovery period and little energy. At least friends and family could now relate to me being unwell as they all understood back surgery. I no longer felt guilty when I couldn’t help, lift the shopping or clean the floors.
"I was able to rest at regular intervals instead of pushing on until I collapsed but I was caught in a vicious circle. The exercises I needed to do to strengthen my back exhausted me, putting me into the downward spiral with the M.E. The lack of sleep meant the healing process was slow.
"Fourteen years have gone by. Sometimes I have felt much better. Sometimes the relapses have been severe. The immune system takes a long time to recover only to be challenged again by any infection or virus around.
"All my savings have been spent on trying to recover. I have explored every possibility with the help of my GP but my reactions to drugs are so strong that it takes me at least three months to recover from the side effects. Clinical homeopathy together with visits to warm, dry climates have been the only treatments to help, though the first two weeks of each five week course leave me feeling dreadful.
"I am now well enough to socialise with understanding friends and have a part-time job of seven hours a week. This has been a godsend as, whilst at work, I can forget about the M.E. I have to go to bed for an hour before working to build up enough energy but the rewards of feeling nearly normal are worth it. I work late afternoon or evening as this is my good time.
"Unfortunately M.E. has reorganised my body clock so 11pm-3am is my time of maximum energy. Not quite the right time for a social life. The rest of the time my eyes tell me I want to sleep but my body refuses to do so.
"When I am going through a good patch I enjoy reading, going to the theatre, studying and meeting friends. I try to keep up with all the research on M.E. and find the Action for M.E. magazine a great help. It also reminds me that I have come a long way since 1995.
"I need mental stimulus but too much has the same effect as too much exercise. When I am going through a bad patch I try to pace myself and hope it will only last a few weeks. I hope the headaches, the brain fog, the aching muscles, the low mood, the chronic exhaustion will go away but underneath I know that they may always remain.
"Over the years I have learnt what makes me feel better but it is not always easy to achieve. When the energy is low it is very easy for it to reach rock bottom just by being in the presence of certain people, by eating foods which take a lot of energy to digest, by trying to do what is expected of you, by not saying ‘no’ and trying to push on instead of easing up.
"I try to equate this to a car whose battery has run down. You charge it up a little and expect it to last with all the lights and radio on. Each relapse reminds me of what it was like in the beginning. I am grateful for my daughters who understand the illness and keep me positive during the low times.
"But will I ever feel like ‘me’ again? For three days after an operation I felt great. The anaesthetic slowed down the adrenalin, helped me to sleep, increased my energy and cleared my head. I felt invigorated and motivated. Suddenly I was ‘me’ again. But the M.E. symptoms slowly sneaked back. I felt cheated. I had felt what life used to be like, only to have it snatched away again. But I live in hope that, one day, I will be ‘me’ again.
"Advice for someone diagnosed with M.E.? It can be a long, hard, turbulent road but the following may ease it.
- Listen to your body, not to what people tell you. If it needs to rest, give in.
- Try to deal with the anger and frustration as best you can, it will be there for a long time.
- Avoid being with people or in situations which drain you of energy.
- Say ‘no’ and don’t try to appease people.
- Accept all help offered without feeling guilty and learn to ask for help.
- Work out which foods make you feel worse and which better.
- Take supplements particularly in liquid form as your body may not be processing food well.
- When you’re feeling depressed have a good cry and then think of some distraction.
- When you’re feeling better treat yourself.
- When your brain is fogged or confused, don’t panic, it will ease even if it takes a long time.
- Try to ease physical pain before it gets too severe.
- Try to do, on a lesser scale, the things you enjoyed before being ill.
- Learn to enjoy being on your own.
- Get help with any financial problem solving. Don’t try to do everything yourself.
- Nag your GP to get you some expert help.
- Thank those who help and support you. Let them know how much it means to you.
"Remember. There may never be a cure for M.E. but you may be able to learn to live with it."