Person with ME


I've always been an optimist. As a child had all the childhood ailments and was often prescribed antibiotics 3 or 4 times a year (which I now believe has had some impact on my adult experience).

Had a melanoma skin cancer excised in December 1999 (and had in the previous year had recurrent bouts of sinusitis not cleared by antibiotic treatment). I concentrated my efforts to eat the best diet, meditate-find ways of not worrying and being self absorbed-and look after myself.

My job was very stressful, in Summer 2002 I had stomach pain in November I took acid inhibiting drugs prescribed by my GP. I have read since that your stomach acid is responsible for eliminating at least 50% of bacteria and virus that enter your body so with hindsight I was stopping pain but not helping myself.

I caught a cold at Christmas it was the sort of virus that causes bouts of sneezing. 2 weeks later in the New Year I had another virus. The same week my throat hurt and I went to NHS direct and saw a nurse. She told me I had 'dirty tonsils' i.e. tonsilitis (which had been one of the recurrent childhood conditions). I explained I didn't want a prescription for antibiotics as since having cancer I preferred to rest, eat well and let my body recover in its own time. She told me I was making a good decision.

Then next day my gums were hurting too, I had an ulcer at the back of my mouth about the size of a ten pence piece. I wasn't able to eat or swallow very well. I got bitten by a gnat, - in January! This happened at night the following morning I had a red welt about a foot long between my shoulders I had scratched in my sleep! 5 days later I saw my GP I could barely walk and itched. He said his only option was to give me an antibiotic. He said he thought I had cellulitis in the skin on my back. I left not knowing what this was. The following morning I saw him again as an emergency (when they still did Saturday emergency surgeries). I had a rash all over my body and itched. He said I must take the antibiotic and was considering sending me to hospital but thought I'd be better off at home. I thought I would die that afternoon I don't know if it was the cellulitis or the antibiotic but I didn't! I had to stay in bed, a fortnight later exactly I was back in the emergency surgery and being told I had shingles that had started at the place the cellulitis had begun.

Six more weeks in bed, I had to be helped to the toilet in the morning and have food made for me. I didn't tell my husband until last year but he would ring me at lunch time and I would drop onto the floor and crawl to the phone and lie on the floor while he checked I was ok because I didn't want him to worry. I'd lost weight and couldn't bathe myself. I then began waking in the day with my heart racing so fast I thought I would pass out. I stayed in bed 4 days and on the 5th felt better so drove my car round the block and back home. On the 6th day the heart racing didn't happen so I drove to my mum's house. Then it started. My heart was racing so fast I couldn't lift my arm. I was so weak I had to force myself to tell her to get me to a doctor. My sister in law and mum carried me to the car and doctor. That's when he told me it was M.E.

I was 42 and was told by my GP I had M.E. in April 2003.

I told him that people with M,E. are largely thought of as 'mad' with a 'made up illness', He told me it was a real condition and that I had it. (I had been testing him, I was really frightened he would think like doctor's I'd heard about - I had met 2 people through my job who had M.E.).

I asked what could I do? I was told go home and lie down for as long as it takes.

My supervisor at work suggested I try coming into work for 4 hours a day for a couple of weeks to see how I managed, in May. She had been ringing me every week to see how long I would be off work, I felt really pressured to return to work. I really wanted to be 'normal'. I went.

Every day of the first week I went into work in my car. My job was at a desk part of the time, but at the end of the 4 hours I was so exhausted I went home to bed, didn't eat a meal too tired. On the 4th day I rang my union advisor and said I couldn't cope and didn't know what to do because I needed my wage so much. He asked me when my back to work plan had been arranged between me and my supervisor and my doctor. I hadn't heard of a back to work plan. Apparently I should have been advised to see my doctor and discuss with him how many hours I should work and if I should have a gradual increase back to work, then this should have been put in writing and discussed with my supervisor. She had said nothing.

The second week he met me and my supervisor and basically told her that I hadn't been managed and she should now begin the process as explained in our Terms and Conditions for the job. I was told they wanted me in work at lunch time, I explained I had only got any strength and energy in the mornings so she agreed as she said, with reluctance, to allow me to work when I could, not when she wanted. My GP wrote a letter that said my condition was improving, albeit slowly and I should not be expected to work more than 4 hours a day for at least 3 months. I was interviewed by this supervisor every Monday and every Friday from then on. I felt like I was a criminal. She took me into a small office and every time asked how I was doing and how long would it be before I worked full time again because I was straining the section as they had to cover for my absence. I increased my workday a quarter of an hour at a time and in the following March was told I was to be transferred to a people facing job which would involve me being on my feet all day. My job and that of my section would no longer exist. I saw a manager and demeaned myself by actually begging to be put into a desk based post. I was told there were no jobs available other than the one on offer. I found out 2 days later that another person in our building had been given the choice of 2 desk based jobs by the same manager on the same day, so what I was told was to give me the choice of a mostly standing job or for me to go. I resigned the following month.

A few weeks later I was given a part time job at a local charity which I have managed to maintain, but I am really concerned I could lose it as I had to take 3 weeks off last November and a week in February, there is a small staff but when they catch a virus they come to work with it and I catch almost all of them. I know that I'm not well enough to go in this Monday.

Since, I've realised I try to cope with almost all the symptoms described as being M.E. I've had recurrent bladder infections, I had anaphalaxis when another GP in the practice didn't read my notes and gave me something from the Penicillin family. I also know now the medicine I was given for the cellulitis can cause severe reactions for some senstitive people and can increase sensitivity to any medication in the future. So, I am hypersensitive due to the medication and perhaps also because of the M.E. A medical herbalist prescribed me with a herb tincture and a homeopathic pill which take the pain from bladder infections and help me clear them altogether in under 7 days - this has been one reassurance for me. I told my GP about using alternative therapists and was told the practice endorse anyone helping themselves as long as the GP is informed to check for contraindications which is a breath of fresh air to know!
When I am tired, which is most days, I risk 'talking scribble' which is how my husband describes me saying something with a random word in the sentence. Or worst random words. I've met people who have had strokes and it seems that they and people with M.E. can have this in common. I stumble and sometimes fall on flat ground, indoors mostly I try to laugh or I would cry I think. Not being able to think clearly has been with me since the beginning but I took some drops from a Swiss Company called Spagyrics in 2005 and within 6 weeks the feeling anyone with M.E. understands of the dead weight in you head and body actually lifted. I have only re-experienced this all body sensation one or two days since.

I work part time now often I need to lie down at the end of a work period.

I do thank my husband regularly, he has actually been my carer all this time, no other person should have to take on this role. If he hadn't have been here I know I would have had at times to be admitted to nursing care?

My family have told me that they don't understand. One sister in law who was doing a nursing degree told my other sibling that I was making it up and pretending to be ill for attention because I had gone back to work part time. She told the whole family that if I had M.E. I should be in bed and if I wasn't I was a malingerer.

Most of the people I thought were friends don't ring or call. Always in the first 2 years I was too tired or ill or both to socialise so they stopped asking and stopped ringing.

Since March I have had a recurrence of the over production of stomach acid. I have cut sugar out of my diet and also any yeast product but it has got more and more painful. Yesterday after no sleep for 48 hours I went to the on call doctor at our hospital and asked for an acid inhibitor. I tried to explain a little of the history as I told him I was frightened not to be prescribed something that may cause anaphylaxis. He told me he didn't want to hear and did I want the prescription or not?

So today I am a bit worried, I have read on-line to avoid sugar and I will totally, although my diet was without unprocessed foods and sugars prior to this stomach problem. So, I'm taking a pill because I couldn't cope with the pain and this pill will reduce my stomach acid and possibly my ability to fight infection.

I feel quite unsure for my future.