chronic fatigue syndrome & fibromyalgia sufferers
Meet Jo, Sleepydust Forum Manager
I'm Jo, Sleepydust's Forum Manager, and I have Chronic Fatigue Syndrome
(also known as ME/CFS).
When I Became Ill...
My ME/CFS symptoms developed after I caught a summer cold/'flu
virus back in 2000.
At first I was told that I had a bad chest infection. When the antibiotics
I was prescribed didn't work, my doctor then thought that it was perhaps
pleurisy, so I was switched to different antibiotics. Unfortunately they
didn't help either.
After more symptoms developed quite rapidly I was taken into hospital for
tests. I got sent home without a definite diagnosis and was told I would
be given an appointment for the Out-Patients Department, only to be re-admitted
about 3 weeks or so later when yet more symptoms emerged.
I couldn't stop vomiting - so much so that when I crawled into my GPs surgery,
she took one look at me and told me to get to A & E pronto. Because
I was so dehydrated, I was in danger of my kidneys failing.
Again I was admitted, patched up, and sent home a few days later without
knowing why I felt so ill.....
After about 4 months my doctor began to wonder if I might have ME/CFS.
But I still underwent 2 years of tests, [and a few further hospital admissions
inbetween], to rule out other possible causes before that diagnosis was
'officially' written on my medical records.
Looking back though, the signs were there for quite a while before I succumbed.
I think catching that cold virus was the straw that broke the camels back.
Meeting Sleepydust's Founder &
How Sleepydust Was Born
Once I'd received a diagnosis, I typed in a few keywords into a search
engine and found an American website dedicated to ME/CFS.
Unfortunately at that time there didn't seem to be a great deal of information
available to people in the UK, (or if there was it was very difficult to
find), so I ended up joining the American support group provided by the
website I found.
This was where I first met Claire, Sleepydust's
Claire was the only other UK member with ME/CFS at this particular support
group and we 'hit it off' immediately. We began to e-mail each other regularly,
and often talked at night via an 'Instant Messenger' (IM) when we were unable
One night, during one of our IM conversations, we started talking about
how little information there seemed to be about how to 'live' with
Most of the sites we had come across were either written using stark medical
terminology (that most people couldn't relate to), or they would have just
one page of 'advice' (usually written by someone who didn't have ME/CFS
and who usually didn't realize how the extent to which this illness can
have a devastating effect on someone's life).
During this particular conversation Claire said, 'Wouldn't it be great
if there was a web site that covered all aspects of actually living
with ME/CFS (PVFS) & FMS?'...
... and the idea for Sleepydust was born!
My Role At Sleepydust
I have to admit, although we passed ideas back and forth between ourselves,
I wasn't really involved with Sleepydust at first. It was only about a year
and a half after Claire first created the Sleepydust website that she invited
me to take on a full-time position.
My main role is to oversee the Sleepydust
Forum for Fibromyalgia & ME/ Chronic Fatigue Syndrome sufferers , to manage and support the wonderful Sleepydust Forum Moderator
Team, and to do my best to ensure that the forum is a friendly, welcoming
and helpful place to visit.
As part of my role as Forum Manager I also deal with the technical side
of the Sleepydust Forum. This can involve anything from helping forum members
with any technical queries they might have, to carrying out necessary maintenance
and/or support to ensure that the forum runs smoothly.
I often spend about 3 hours a day, (although not all in one go as my health
won't permit me to), on the Sleepydust Forum, writing responses to people's
queries and/or offering advice and support where I can. I do this because,
above everything else, I remember how alone I felt when I first became
But as an added bonus, I truly do enjoy reading what our forum members
have to say.....
I enjoy watching friendships grow between members as they get to know each
other better, and I enjoy helping if I can. In some respects, I feel that
if I can use what I've learned about my illness to help other people, then
my own suffering won't have all been in vain.
There are various boards at the Sleepydust Forum including:
- Medications Questions & Answers
- Hints, Tips & Coping Strategies
- Teens Talk
- The Chatter Box
- Moan Zone (where people can receive a 'virtual hug' if they're having
a difficult time)
- Girl Talk
- Mens Room
- Good News To Share
- Thought Of The Day
- Armchair Addicts
- Music Mayhem
- Birthdays & Special Celebrations
- Benefits, Welfare & Work
- Symptoms Questions & Answers
- Alternative Treatments/Therapies
- New Research & Treatments
- Experiences With Doctors
- M.E/CFS/PVFS/FM In The Media
- Nutrition, Diet & Kinesiology
And to visit the Sleepydust Forum itself click
A lot of the other work I do at Sleepydust is 'behind the scenes'. Much
of the remainder of my time is spent responding to email enquiries and researching
ME/CFS-related topics to assist Claire with expanding the main web site
I've also written an article
and some news items for the popular free
Sleepydust E-Magazine, have coded and helped set up The
Sleepydust Newspaper and Claire's
Online Diary, and occasionally I come up with more ideas for Sleepydust
in general, whether that be new sections for the forum, suggestions for
E-Magazine articles, or something else entirely.
Where Do I Find The Energy?
Someone from the Sleepydust Forum once asked me where I find the energy
to do as much as I do for Sleepydust.
The truth is that, like Claire, I don't have much energy at all most
of the time. I'm pretty much housebound these days and I'm not well enough
to work or go out with friends etc. (the only places I really go to at the
moment are my doctors, the hospital or to therapy sessions!)
So I have plenty of time on my hands.
In fact, I am just as sick as most of the people who visit this web site
looking for help or advice. But luckily for me, I'm fortunate enough not
to suffer too much from 'brain fog', (although boy do I notice
it when I do!)
I'm also fortunate enough to have a lap-top, which I can use when I'm in
bed. So often, even when I don't feel well, I'll be working on Sleepydust
from the comfort of my duvet!
My Message To You...
If you've been diagnosed with ME/CFS/PVFS or FM, I truly hope that you
are as well as possible at the moment.
Remember - even if you have been unwell for some time, it is
possible to recover from this illness. There is always hope!
I hope that you find the information on this web site helpful. Perhaps one day soon you'll visit me at what has become my 'virtual home'
- The Sleepydust Forum!
Sleepydust Forum Manager
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