I'm tired of this tiredness.... (Chronic Fatigue Syndrome (CFS))

Member Name: b-rokscarrie

Product:	Chronic Fatigue Syndrome (CFS)
Date:	06/07/01 (83 review reads)
Rating:

Advantages: None

Disadvantages: It changes your life

Back in 1987 I caught a dose of 'flu and before I was even over it, a bad bout of bronchitis. Understandably, I was laid low for a while, and looked forward to getting back to normal again.

Three weeks later, I still felt very washed out. That's fair enough, I thought, 'flu leaves you like that. I tried to carry on as normal, but always felt 'below par.' A couple of months later, I still didn't feel wonderful, so I decided I needed some kind of health regime to get me back on track. As well as watching my diet and trying to eat healthily, I started trying to exercise more, especially on my exercise bike, and when I ached soon after starting, but with my legs feeling like jelly, I carried on regardless, working through the pain barrier, as it were. Little did I know that was the worst approach and could have made the illness worse at that time.

A couple of months later, although I didn’t have the same awful symptoms, I just didn’t seem to feel ‘my old self.’ I would feel relatively OK for a while, then I would find that even the simplest of tasks – such as washing up – made me feel absolutely exhausted. A pattern started to emerge at these times: I would wake up in the morning still very tired, and struggle through the day, still trying to keep the house and kids together, and trying to achieve some sense of normality. I ached constantly, felt like I just wanted to go to bed, had headaches, and just felt generally unwell.

I went to the Doctor – at last! – who wasn’t really very understanding. ‘It’s tiring trying to run a house and look after children,’ she said. I argued that I wasn’t just tired, I felt exhausted, didn’t feel well and I ached so much. Plus, I added, what about the thousands of women who managed to run a house, look after their children and hold down a full-time job? She had no answer for that, but just
added that I had probably picked up a virus. I went away none the wiser.

It was around this time that my family needed to go for a medical check-up for Health Insurance and we had to go to another Doctor in town, someone who run his surgery on his own, and a Doctor I had always heard fantastic things about. In fact, he was so popular that he couldn’t take anyone else onto his books as he had so many patients already. When I went for my check-up, I mentioned to him that I would love to have transferred our family onto his books, but I understood that he couldn’t take any more patients. He said that he could make an exception in our case, as I was so keen, so we did. He was a lovely Doctor, an elderly man who always called my then 3 year old daughter, Pickle! I mentioned to him at the check-up that I hadn’t been feeling well for a while and he told me to make an appointment to see him, which I did.

At the appointment, I gave him a run-down of my symptoms, when it started, etc. and he reached for some leaflets off his desk. ‘Have you heard of ME’ he asked me. I told him I hadn’t. He had been reading about it, and was fairly convinced I might have that, although he would of course have to send me for tests. So I went to Addenbrookes and Papworth Hospitals, two of the most respected Hospitals in the Country. I spent a day at each, having all kinds of tests, chest function tests, blood tests, adrenal gland tests, the lot. I was told to come back to Addenbrookes in 2 weeks.

When I returned, the Specialist told me that what was showing up on the tests was that my Immune System was constantly trying to fight an infection and I had too many white blood cells. He saw the worry on my face, because he went on to explain that this explained what he had suspected, I had ME, or Myalgic Encephalomyelitis to give it its full name. The only advice he could give was to try and pace myself, don’t overdo t
hings or it may bring on a flare-up, rest when I need to, but try to find a happy balance between rest and movement.

I came away relieved. At last I had a name for the awful way I had been feeling, and I knew what to do. Or so I thought……..

That is where the problems started. I was married at the time and the ME put a huge strain on my marriage. My then husband had recently started his own business and I was hoping to help him get on his feet by doing some work for him, but I could only do a tiny amount before I felt ill. (Apparently, it is not only physical effort that may bring on a flare-up but also mental effort). My elder daughter at the time was 13 years old and she took over the brunt of looking after me when I had to go to bed for a couple of days at a time, cooking the meals and taking over some of the housework, bless her. My younger daughter was only 4. Thankfully I have been blessed with two lovely, caring daughters and they were no trouble at all.

I found the fact that I couldn’t do normal things on a day to day basis very frustrating. If I washed up, for example, I would have to rest afterwards. When I dried my hair, I had to do it in stages because the muscles in my arms ached so much. If I went out on the odd occasion with my husband, I would have to get back early as I was so tired. If there was an occasion coming up, such as a Wedding Reception we went to, I would have to rest for a couple of days beforehand, for fear of overdoing it and not being able to go. All this understandably puts a great strain on a marriage, and we had a few rough times, before finally splitting up in 1994. My advice for anybody in a similar situation is to find time for each other and try to do things together, however minimal. It’s very easy to get lost in the illness and forget to focus as much on your marriage. It is very hard for the carer in any situation with an ill person in the family, and it takes
a strong marriage to come through it, but it can be done. Things were harder for myself and my husband as he was starting his own business, so it meant that we drifted apart.

I have had the ME for many years now. Some people have it for a short while, then gradually get over it, others have it for a number of years, we are all different. There are lots of ways you can help yourself, including watching your diet, as staying on a healthy diet is always preferable in any situation, ill or not. There are alternative remedies you can try, but be careful not to spend a lot of money on these without proof that they work. I had acupuncture for about 6 months and although it seemed to help the muscle and joint pains, it didn’t ease the fatigue. At £35 per session, it didn’t come cheap! Vitamin and mineral supplements are a good idea, especially Efamol Evening Primrose Oil, which I take on a daily basis. This is not cheap, but I have found a place on the Internet which sells it a little cheaper, with free delivery, so if anyone wants to drop me an e-mail, I will let them have the details. A lot of ME patients find that they have a problem with thrush – Candida. I did, at the very beginning of the illness. I went for an allergy test, and the doctor told me I was allergic to quite a few things. She put me on an exclusion diet and told me to cut out sugar and vinegar – completely. That meant no foods with any kind of sugar or vinegar in either – beefburgers often contain sucrose (a sugar) and a lot bread contains sugar and vinegar, that is what preserves it. I followed this gruelling diet for 3 months – under her guidance – and the thrush gradually went.

Although I still have ME, it has settled into a kind of pattern, and I now know how and when to pace myself. I feel below par most days and the aching is constant. I have been unable to work for a number of years because I would be so unreliable, and the
physical and mental effort would contribute to a flare-up. It is believed that rest alternated with graded exercise is the best advice for anyone with ME, although I find it difficult to exercise because the muscle aches in my arms and legs is a big problem for me. The one thing I would recommend is to try and have a positive attitude – easier said than done, I know, when you ache all over, feel shattered and just want to sleep – but I believe this ME will go one day, and I tell myself there are people with far worse illnesses to contend with.

For information of ME, the address to write to is:

4 Corringham Road
Stanford-le-hope
Essex
SS17 0AH.

Tel No: 01375 642466
Their Web Site is: http://www.meassociation.org.uk

Again, if anyone would like to write to me about ME or would just like a general chat, please e-mail me. I would love to hear from you!

Summary: