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
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
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
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
I feel quite unsure for my future.