Written in 2003
I was diagnosed with ME in 1998, but I believe it started a long time before that.
When I was a teenager I started with fatigue, headaches and stomach complaints, I spent two weeks in hospital having tests and nothing was discovered except for Scoliosis (a curvature of the spine). I was referred to a psychologist and diagnosed as having school phobia. I continued my education with home tuition and eventually went to a hospital and home education unit where I took O’levels and GCSE’s.
In 1988 I started my first job and was reasonably well for a few years. Then in 1990 I went to train to be a nurse, I lived away from home and in hospital accommodation; it was handy for work, but very rarely quiet. The problems of fatigue, headaches, stomach problems and dizziness began. This time I was told I had IBS. I missed a lot of time at work due to the dizziness and then back pain. Eventually my contract was terminated because of my back. I was told that my curvature of the spine had been aggravated by the job and that I should look for more suitable work. More suitable work meant no health care, no childcare and no social work. I felt my world had ended, as I did not know what I could do.
My health problems continued through the 1990’s, though at times I was well enough to work full time. I began my nurse training in 1990
In 1994 I started a Diploma in Playwork and a few months in to the course I developed terrible dizziness and headaches. I had lots of tests including an MRI scan, but nothing was found and I was told it was just stress. Throughout the course and the extra year to convert to a BA (Hons) I continued to have poor health. I was investigated a neurologist, gynaecologist, ENT specialist and audiologist for many problems including dizziness, periods ceasing, tinnitus and migraine. At this time I was studying, trying to work as well and my long-term relationship ended. The conclusion was always stress.
In 1997 I had a kidney stone, I was in hospital for a few days, but could not afford to take time off work so went back too quickly. I was working in three jobs at the time, a pub, a nursing home and a nursing agency, but none of them paid sick pay. After this I started a one year masters degree in Primary and Community Care, I was still working for a nursing agency and in the pub. My health got much worse and the tutors complained that I always looked half asleep and made me give up my pub job. The dizziness and headaches got much worse as did the fatigue and tinnitus and I started having nosebleeds, my IBS worsened and I developed an irritable bladder. Eventually I could take no more I was exhausted and practically collapsed. I missed time at work and failed modules of my degree. After several tests my GP diagnosed ME and signed me off work. During this time I had no income as I could not get sick pay and could not claim benefit as I was still registered as a student. The only way I could get benefit was to give up the course; I did not want to do this as I had paid £2500 to do it! The course tutors were not much help either as they thought I should give it up, as people failing modules looked bad on them!
After 6 months I did return to work, but on much shorter hours and in a less physically demanding department. I managed to carry on like this for about a year, though my health was not good and it was a real struggle. During this time I was on leave of absence from my course.
In 1999 I moved to Leeds with my partner and found a new job. The job was a co-ordinator for a home care company and involved a lot of hands on care, driving, unsocial hours and on call work. I was having more time off than I was working and having real problems with dizziness, fatigue, pain, panic attacks and fits of temper. I saw several Drs, one said I had migraine, another said it was due to my diet and that if I ate 5 portions of vegetables a day I would be ok, another said I had flu! One day I ended up in being sent to hospital with palpitations. Eventually I found a GP who would listen to me and she said it was M.E again and that I needed to take things easy. She prescribed Prozac to help with the depression and sleep disturbance. I have not worked for over three years now and my health is no better, in fact it is worse. I easily get tired and suffer a lot of pain and terrible dizziness, to name but a few. Taking the Prozac helped with the panic attacks and temper fits and I do not get upset as easily as before.
I was referred to Leeds Chronic Fatigue Service in April 2000. This is a three part process you see a
psychologist, an occupational therapist and the consultant. I saw the psychologist and occupational therapist in summer 2000 and they agreed that I had got M.E, but could not give me any treatment until I had seen the consultant. In September 2001 I got an occupational therapy appointment, as the wait for the consultant was so long they were starting treatment before the appointment with him. I finally saw the consultant in October 2001, I was with him about 15 minutes, he was useless, he did not give me a proper diagnosis, said there was nothing he could do to help and that the only advice he could give me was that I should eat more salt to raise my blood pressure and not lie down as that also lowers the blood pressure!! Oh and I also found out that my weight had dropped to 7st 3, so Rob has been trying to fatten me up ever since!
I am continuing with the Occupational Therapy, who advocated pacing/graded activity, but I am finding it very hard going and never manage to do what they tell me to. The theory is that you find a level at which you can perform without symptoms and gradually increase activity, but I am unable to cut down to the base line so cannot progress. “This is a way of planning your daily activities and gradually increasing what you can do. In Chronic fatigue it is helpful to avoid cycles of ‘Boom and Slump’ and grading your activity allows you to monitor your energy levels and plan your daily activities to avoid prolonged periods of fatigue” (Leeds Chronic Fatigue Service). Easier said than done when you have a home to look after.
My GP also referred me to a counsellor as she felt that I was very isolated and depressed. At first the counsellor said that she could not help me as my M.E affects everything else in my life so there was nothing we could do to improve things. Eventually she did begin to understand a little and realised that I just wanted someone to talk to. Recently I went to some group sessions for people with confidence problems, this was good, but did not help with the M.E and I do not see the counsellor on a one to one any more.
I finally finished my degree course in 2000, three years after I started it. The only problem is that I am now too ill to use the qualifications I hold. I would really like to be able to do something from home, but do not know what I can do.
The year 2001 was very stressful, at the beginning of the year my mum was in a car accident and although she was not badly injured she was off work for a month and I was going backwards and forwards to Sheffield to help out. At the end of March my grandad died. And throughout the year I was battling with the benefits agency to try and get some money, but I am not entitled to anything. As well as all this we were planning our wedding and we married in June. Six months before the wedding I wanted to cancel it because of financial worries and doubts about my health, but Rob persuaded me to go ahead with it. It was a tiring day, but I got through on pain killers and adrenaline. I was not able to dance the night away or anything and I had to sit down during the church service, but it was a great day and worth the struggle.
I finally bought a wheelchair in May 2002, it was very useful when we went on holiday, I would not have got as far as the airport without it! I now use it most of the time outside the house and it enables me to get out a bit more although it is still very tiring. Since having the wheelchair my pain has decreased.
Last year I was asked to become newsletter editor for Leeds M.E group so that is a new challenge for me. I am looking forward to it, but hoping it will not be too much work for me. The newsletter comes out 3 times a year, but involves quite a bit of work at all times searching for information and checking through submissions.
I always use the wheelchair now out of the house as I cannot walk far at all and it is rare for me to go out on my own as my wheelchair is attendant propelled, therefore I cannot use it alone. Driving is extremely tiring even though we have just bought a car with power steering, so I only drive to the doctors the rest of the time I am dependant on my husband to take me anywhere.
I find being stuck in the house very frustrating, especially as I am also limited to what I can do in the house as well. It is a struggle to keep it tidy let alone clean. I cannot cook a meal, only quick snacks. The only thing I manage to keep on top of is the washing as I can just put it in the machine and leave it. We have just bought a washer dryer, so many things can go straight through to dry and do not need to be hung to dry.
Last year we tried to get a cleaner as I was making myself ill trying to clean and getting frustrated because I could not do it. We tried agencies but they were far too expensive, so we advertised in the local shops. The first applicant seemed fine and we said we would give her a try, but the night before she was due to come she rang and said she did not want the job anymore. Number two rang and we said we would get back to her, but the number she gave us to call back did not exist. Number three came and cleaned, but we could not tell she had been, what she did for 2 hours I have no idea as I did not follow her round, but she certainly did not clean! Number arranged to come and see us, but never turned up and had not left a contact phone number! After this we gave up, it was too stressful. I do bits when I can and my husband does the vacuuming, the rest gets left 🙁
We are currently investigating the option of extending our house so that we would have a downstairs toilet and computer room, this would mean that I would not have to cope with the stairs as much, but of course cost is the main issue, these things do not come cheap and despite many battles with the benefits agency I still do not have any income!
On a more positive note, at the end of last year I was able to stop my medication without getting any worse. it is a shame that there was no improvement in my condition, but at least I am not pumped full of pills and potions now, especially as it seems that they were not helping anyway, or that the effects they may have had initially had worn off.
I do not know what the future holds at the moment. I just take every day as it comes and do what I can when I can. The thing that really annoys me is that no one else understands the condition and everyone expects me to be better by now and puts pressure on me to return to work and lead a ‘normal’ life. I am learning now what my limits are, but still try to push myself to hard at times, mainly to please other people, but I always suffer for it afterwards.
I am getting very restless now and despite feeling so unwell I want to be able to work in some way, but everything I explore is not suitable. We are also keen to start a family,
2004 set up website to sell cards that I make. Nephew, born March. House extended Summer. Referred for fertility treatment after trying to conceive for 2 years.
2005 Website doing ok, get regular orders. Started fertility tests and treatment, waiting for IVF appt. Finally got a cleaner! Spend most afternoons resting (hate doing this feel such a waste of time!)
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