a child with Chronic fatigue syyndrome (Chronic Fatigue Syndrome (CFS))

Member Name: mumsymary

Product:	Chronic Fatigue Syndrome (CFS)
Date:	03/11/02 (112 review reads)
Rating:

Advantages: NONE

Disadvantages: CONTIUOUS ILL HEALTH OF CHILD , Pain and anxiety

Speaking as a mother of an ill (disabled) child.

Illness in your own child is terrible, worse than being ill yourself.
The worry and pain your children give you when they are ill is really almost too much to bear.

My daughter Sleepydormouse contracted chronic fatigue syndrome when she was 13 she is now 24 about to be a mum herself. So no longer a child, but my child forever, someone I love and want to protect and want no harm to come to. She still suffers with chronic fatigue but has learnt to manage it and live with it as you do with any disability some days good some days bad. That doesn't mean to say she does not miss being able to participate in a full life, being able to go out all day, to dances, the pub shop till she drops and recovering after a sleep .It takes days to recover from any exertion. She feels cheated that she could not join in.

I work with disabled children. I see their parents coping in different ways. They all love their children .A lot find it too difficult their hopes and dreams shattered and give their children up. A lot support their children in a loving commitment caring for them for life. Enjoying the little responses hoping for a miracle cure, Knowing realistically there is not one.

People react in different ways would you be able to cope with a child who is ill all the time? I do not think you can answer that until it happens to you.

Some parents are over protective some not caring enough I do not blame anyone if they give their ill/ disabled handicapped baby for adoption, some people may not be able to cope and their child will have a better life with adoptive parents who choose to have that child. I do not think I could give my child for adoption but it's an individual's choice in their circumstances.

My first baby died when she was 3 days old I did not have time to bond with her I just have this picture in my head of a tiny baby with dark hair in a glass box. She w
as in a
n incubator very poorly. Heart ?lung complaint contracted bronco pneumonia, which killed her. 1 year later after a worrying pregnancy I gave birth to sleepy dormouse a beautiful healthy baby.

I wanted to protect her from illnesses so she had all the vaccinations that were available kept her warm fed her well.
As a child she had the usual childhood illnesses mumps, chicken pox, I looked after her nurtured her and cherished her, but there was nothing I could do to stop her getting chronic fatigue syndrome (M E).

We think she got it after an ear infection but we do not know!

It was about 11 years ago that she became ill had sore throats, earache, sore aching muscles, was lethargic no energy felt dizzy not sleeping well.


We took her to the doctor who sent us to an E.N.T. consultant at the local hospital he said she had, had an ear infection.
Our DR made an appointment for My husband and I to see a councillor who seemed to be blaming my husband for sallys illness because he expected her to achieve more. WeWent back to our own Dr who said it was possibly chronic fatigue she made an appointment with a Dr Dowset in a town in Essex I think it was in Billericay She was a lovely lady kind and understanding she gave us her Diagnosis

Sally was ill she had chronic fatigue syndrome she gave us advice and although there is no cure it was good to know what the illness was. Sally was not a school phobic was not making it up there was a biological cause to her illness possibly the ear infection started it up.

Sally had a lot of time of school being unable to cope with the busy day Was sent home several times, fainting in assembly once.
School was very good after they had confirmation of her illness from DR and allowed her to go in only when fit enough, to miss PE and anything physical she was very upset when she was not allowed to take music as a gcse lesson as she was too unwell to attend b
and practice after school. She was not fit enough had no energy for after school activities
.

I don?t think words can describe the pain, worry I felt in her teenage years to wake her up and find she was not well, to get home after work find this child flopped on the sofa pale and listless black tired bags under her eyes doing nothing all day.

We saw a homeopathic/ alternative Dr we were not satisfied with her and went to another who was a little better but still not really any help. We could have continued spending lots of money on various DR?s and medicines.
We read books and books and books looking for a cure but found none. The best help we got was from seeing DR Dowsett, who has written several books Our GP set that meeting up and we were not charged for it.
How did we Treat Sally well she had vitamin Tablets, took Stemetil at Dr?s suggestion to ease the dizziness, let her rest a lot tried to be supportive. I do not know if we got it right but no one could give us any help that would cure her we kept getting different opinions from different people. Some people did not believe she was ill, would scoff and scorn at the way she did little, except watch the TV and flop on the sofa. But we had had a healthy happy child, who had friends went to guides went to ballet walked miles with us played the flute, danced at ceiliedhs with us generally a good healthy active childhood. This child changed to one who had no energy, whose legs ached after walking short distances who had sore throats and raised glands
She missed her early teenage years couldn?t meet friends after school didn?t go shopping, didn?t hang out didn?t go to guides, didn?t go to discos, had to stop ballet classes felt ill and exhausted visiting friends a lot of friends dropped by the way side after all she couldn?t go
out with them and when she did had no energy.When she felt reasonbly well and did do somthing
she would pay for it for days after by not being able to get out of bed body musles aching feeling sick dizzy.
There was nothing I could do to make her better. That was the worst feeling in fact nothing may have been the best thing to do just give her support and encouragement when needed.
Where did I go wrong I thought what can I do to make her better there was no real answer. I felt to blame was it something I had done to make her so ill. Fortunately I have gone through that now I know it was not my fault. The emotional pain I felt the guilt although there was none I wish it was me ill not her I have been through it all


She passed her gcse?s with fair grades and went on to do her a levels at school she was allowed to only study and take 2 as she and we thought that she would only have enough energy and stamina to manage 2 successfully she was allowed to attend school only for the lessons where she had A level study one of her a levels was science and for that she had to do a weeks field trip studying flora fauna etc my husband is a science teacher takes a level students on field study trips anyway he arranged with the school that she would do all the work required on a holiday with us . He studies butterflies their habits and habitats most of our holidays are spent looking at wild life anyway so we were on holiday and we did quadrants counting plant species and all the other work required.
Well she did pass her A levels and went to university and survived.
No late night parties no drink no drugs no boyfriend?s just enough work to get her through her university course with prolonged study 3 years work spread over 4 years Has been unable to work
She fell in love with her first boyfriend who was on the same computer course as her got married and any day now is due to have her first baby, and yes I do worry about her still


I have written this as my 100th opp in praise of my daughter who has managed so much and tried to ove
rcome her health difficulties.
And for any mother who has an ill or disabled child we all may react/deal slightly differently with illness but all parents know the pain and hurt you feel when a child is ill and there is little you can do to help.

Thank you for listening Mary

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