I have had ME/Chronic Fatigue now since the birth of my first Son in 1984, although it was not diagnosed until 2004. In the early stages, I just felt continually tired. I would get my baby washed, dressed and fed, then go back to sleep until 4 pm sometimes. I struggled every day to do simple things. Taking the children to the park was hard, as I would feel so shaky and have to get home quickly, as I did not have the strength to be out for very long.
Then years later my family and I moved down to Suffolk in 1990. Things seemed to get even worse. I did not have the strength to get my children to school in the morning and had to wait until my mum moved down to help me. Later we got two cars, so I was able to drive the children to school, although even then, I would come home and sleep until it was time to pick them up from school.
My mum sadly died in 1997, so things really were tough. Then my husband was diagnosed with lymphoma cancer and I felt so bad, as I had no strength to do anything and I should have been looking after him, but he was having to keep up with putting the washing on at times, as I did not have the strength to lift anything. By the time I'd, had my bath and got down stairs, I had no strength to even make a cup of tea and would have to rest most of the day. Then sometimes I would get energy late at night and start to do things that I could not do during the day.
When I went to my doctor, which I did on numerous occasions, to say how tired I was, she just said I would be, having four children and a sick husband! My memory got so bad, one day I cooked my husband a meal and forgot I had done it and cooked another one. I then found I already had done him one and put it under the grill! Once again, the doctor put it down to having to look after 4 young children and my husband not being well. In between this, I did get times when I started to be able to do more, although I think it was sheer determination that got me through, plus the strength of a loving GOD who gave me the strength that I needed for each day.
Then in 2003, my 14 year old daughter got a really bad virus. This made her so ill, she did not have any strength to do anything. Time went on and the doctors kept saying she was fine and that she was only recovering from a virus and she would soon be alright. Things got progressively worse and in the end after having 4 doctors say there was nothing wrong with her, I went over my doctors head and found the telephone number of the doctor that was head of the ME/Chronic Fatigue clinic. I called and left a message on his telephone answering machine. He called me back the next day and said he had been recovering from back surgery, but from what I had explained, he had no doubt in his mind that my daughter had ME/Chronic Fatigue. He set the ball rolling and called the hospital to arrange for my daughter to be seen. Eventually, Dr Terry Michelle, the head of the ME/Chronic clinic, came out to see my daughter and within a short time diagnosed she had the condition.
From then on, we had an occupational therapist come out to see my daughter, as she was too ill to get out of the house for 3 years. It was during these visits to my daughter, that I started to talk about my struggles and the occupational therapist said it sounded an awful lot like I had what my daughter had and that I had been what was called ‘busting and booming’ This is when you suddenly have energy, after resting for some time and then you go mad, doing all the things you could not do before, but then it hits you like a tone of bricks and you are then zapped and laid out for the next week or two. I went back to my doctor and was fortunate enough to see another doctor, who referred me to the ME/ Chronic Fatigue Clinic. Before I received an appointment, I was sent a very thick large questionnaire that I had to fill in, asking me about my symptoms, which I had to send back to the hospital. I received my appointment after about six months, as it takes that long to eliminate other conditions which I had to have tests for.
During this time, things reached crisis point. I got a terrible chest infection and was so ill. I was sleeping 24 x 7. I only woke to have a bath, eat and go to the loo, the rest of the time I slept continually for three weeks. I started to get terrible pain in my ribs, as if I had been kicked from the inside. My knees felt like someone had taken the skin off and put freezing cold ice on them, then put the skin back. Friends of mine were so worried they came round and took me to the hospital, as they thought I was dying. I felt I was dying, it was the worst journey of my life. I felt so weak and numb all over. They held my arms as they walked me to their car. How I did that walk, I will never know. When they got me to the hospital, I had to wait a while. I just wanted to lay down but couldn't. I felt numb from top to bottom, I just wanted to lay down and sleep. When the doctor called me in, he checked me over but could not find anything wrong, other than recovering from a chest infection. I thought, dragging me out and putting me through all that for nothing!
The day came for my appointment at the ME/Clinic and as I walked through the door the lady doctor said to me before I had even sat down. “Good morning Mrs Brewitt, I have read through your file and I am sorry to have to tell you that you have ME/Chronic Fatigue and there is no cure, it is something you just have to learn to live with!" I could not believe it, she said it out so quickly, before I had even been able to sit down. I was really hoping it wasn't, as people asked me if I was relieved that it had actually been diagnosed at last. But I was really hoping that it wasn't that. The cause was traced back to a really bad virus I caught while pregnant with my first son.
Since then I have had to learn to cope as best I can. My lovely husband sadly died April 2009, so it has been one big battle after another. I hate the days when I just can’t do anything. Short term memory is affected and I get lost quite a bit even when driving to town. Right now I am fighting falling asleep. The joint pain only came about after I caught a severe chest infection in 2004. Also, having my daughter and now myself with the same condition was a double whammy, although in a way I am glad that I now know what she has to go through. On a positive note, we are better than we were, but we have to listen to our bodies, as if we don’t, it can set us back months. Also, if it was not for JESUS CHRIST my LORD and SAVIOUR, we would never have got through this and reached where we are today. This is not the end, there is life after ME/Chronic Fatigue. If anyone who may be battling the same, or similar condition, would like to speak to me at any time, I would be more than happy to help and encourage them in any way I can.