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chronic fatigue syndrome & fibromyalgia sufferers

Meet Jo, Sleepydust Forum Manager

Hi Everyone,

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 Founder.

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 to sleep.

One night, during one of our IM conversations, we started talking about how little information there seemed to be about how to 'live' with this illness...

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! chronic fatigue syndrome

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 ill.

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
  • Partners/Carers/Friends/Carers
  • Good News To Share
  • Thought Of The Day
  • Jokes
  • 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
  • Recipes
  • Nutrition, Diet & Kinesiology

And to visit the Sleepydust Forum itself click here...

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 itself.

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!

Until then,

Best Wishes,

Jo
Sleepydust Forum Manager

 

 

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