I am a 34 year old British woman and I have Chronic Fatigue Syndrome (CFS). Sometimes it’s called Post Viral Fatigue Syndrome (PVFS), Mylagic Encephalomyelitis (ME) or Chronic Fatigue Immune Deficiency Syndrome (CFIDS).
I am a moderate sufferer (although on some criteria I am borderline severe). I suffer many varied symptoms which tend to cycle and change. I was diagnosed with CFS in January 2007 although I had been ill for at least 18 months before that.
I am mainly housebound but am able to go out from time to time with planning and support. My laptop is my lifeline to the outside world.
This blog is about me and my illness. My illness isn’t everything I am. I enjoy many things and I also have a blog focused on my art. But this ChronicallyMe blog is focused on my life with Chronic Fatigue Syndrome – my ups and downs, frustrations, revelations and joys (yes joy).
I like to try and imagine I am a little bit anonymous when I write here (even though it’s easy to make the connection to who I am elsewhere). I feel I have things to say, that others may relate to, which are difficult to say in front of my loved ones. Not because they can’t or won’t listen – but because there’s so much of it rolling around in my brain and my heart. Things which are often difficult to say to other people.
So this blog is a vehicle – but hopefully not selfish. Maybe some of you will relate to things you read, some of you might have the chance to see the world through the eyes of a recently debilitated normal person.
Other (minor) medical labels of mine I have discovered on this voyage of ill health include:
- Eczema
- Vasovagal Syncope - the sight (and thought) of blood and gory injuries makes me light headed and pass out/faint
- Mittelschmerz – (mid cycle pain) I get cramps sometimes around when I ovulate
Last updated: 26 September 2008
I stumbled across your blog while poking around on WordPress. I do not know much about your ailments ( that is a long list ) but they do sound quite daunting. My wife was diagnosed with fibromyalgia almost two years ago and it has been very challenging for her and the whole family. She is always in pains and switching from one pain medication to another. I can only imagine how you feel and I am sure that sometimes she must feel quite alone.
Plus, the lack of sleep keeps her in what she call “fibro fog”.
I have taken on a project to build an social networking web site to create a community for people touched with fibromyalgia to share their experiences and become connected. Please take a look at http://fibromyalgia.ning.com/ Join or share with others who might have an interest.
I hope that someday they find a cause and a cure for these painful chronic illnesses.
Hi! I wanted to see if you wanted to exchange links with me to another chronic illness blog I have. It is called IC Disease and the link is at http://icdisease.today.com. I will go ahead and add you over there. Hope that’s okay! I try to stop by here on a regular basis to read. Take care.
Your post on “Dental Sedation and ME/CFS in the UK” is great! I’d like to invite you to be a featured health blogger on Wellsphere — please email me for details.
Cheers, Geoff
–
Geoffrey W. Rutledge MD, PhD
Dr.Rutledge–wellsphere.com
http://www.wellsphere.com
Have you considered a possible problem with your methylation cycle?
Read this research
http://www.drmyhill.co.uk/article.cfm?id=407
You’ll need a username and password for this second one
http://www.immunesupport.com/chat/forums/message.cfm?id=1242897&B=FM
Its helping a lot of people
S
Hi Rachel,
I was searching for information on CFS as I used to suffer from it for a number of years after having epstein bar and found your blog very helpful.
My company is doing a ‘Shoes for Reviews’ promo at the moment to get real user info about our products. Would you like some summer sandals like Birkenstock or Crocs to review on your blog?
Email me back if you’re interested.
Hi there! I found your blog through other ME/CFS/CFIDS bloggers’ sites, and I have added a link to your blog on my own site. (I hope that’s ok!) I’m trying to find other bloggers with ME/CFS/CFIDS who are 35 years old or younger. Do you know of any? Thanks!
There’s my blogroll and links here http://delicious.com/rachelcreative/blog+cfs
but I don’t know about everyone’s ages.