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meandme: (ME/CFS Awareness)

Me and M.E.

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Created on 2009-05-26 12:03:02 (#388328), last updated 2011-05-26 (321 weeks ago)

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My name is Sophie. I'm a British woman creeping into her late twenties with moderate to severe CFS/ME. I hate using the "CFS/ME" term but in my case I have been officially diagnosed with CFS (Chronic Fatigue Syndrome) because British doctors use that term officially. There is lots of debate around terminology that can be found in other places fairly easily. I was going to make this something of a CFS/ME 101 blog, but in the time since setting it up and actually starting to write, I changed my mind.

What all this means is that in practice I'm on a lot of pills (most of them supplements like vitamins and echinacea to help strengthen my body and immune system and fight infection) and I don't get out and about nearly as much as I'd like. I'm housebound or nearly housebound most days. I also try and save up some energy for travel occasionally so I can get on a train and see one of my close friends. I'm lucky in that a lot of my good friends understand chronic illness and if I visit I can then chill out, nap when I want to, and not have too many demands on me. This is a huge relief and it's allowed me to keep more of my social circle than many people with this illness do.

Surprisingly, the main symptom of CFS/ME isn't actually "fatigue". Yeah, I know, misleading isn't it? Fatigue can and does exist as a major symptom, alongside muscle weakness/paralysis, sensitivity to all kinds of things (light, sound, smell, temperature, textures, taste, and pretty much anything you can think of), digestive problems, new allergies and intolerances, pain (muscles, joints, headache, stomach ache, and my personal favourite is feeling like my skin's on fire). I bruise insanely easily and often feel like a walking warzone. Dizziness, vertigo, and Postural Orthostatic Tachycardia Syndrome (POTS, which basically means stand up/fall over/rinse and repeat) are also huge factors and due to these particular lovlies and muscle weakness I use a walking stick if I have to go out of the house to help make sure I don't fall into traffic. I still have to sit down a lot, even then. Showering or being in the bath are impossible some days - yes I can sit down in the bath, but getting in and out and tolerating warm water temperatures all around me can be harder than showering some days.

Being around people or in crowds can also take a lot out of me (and bring on other symptoms for anything from a couple of hours to a week) because you'd be amazed how much subconscious processing is going on in the back of your mind to be aware of where people are around you. I can't do that, I feel every bit of effort, and frankly it hurts. Even just sitting up and talking to one person for a while can be a nightmare. The amount of time I've ended up half-lying on my doctor's desk instead os sitting next to it during appointments is kind of hilarious. I'm not safe to drive, and the discomfort, noise and crowds on buses make them hard for me. In can mange trains a little easier when I have to, but trips to the doctor and such require a taxi.

Some people are only minorly affected and can continue to hold down work, friends and daily life, so long as they carefully monitor themselves and don't overdo it. Some manage to work part time. Some, like me, can't work at all (believe me, I tried, and nearly killed myself doing it in an almost literal sense; I've tried voluntary work since to test myself and four hours a week was more than I could handle).

A few facts for you:

*M.E. is not "in the head" except for being a physical, neurological disorder, as classified by the World Health Organisation (WHO). It's kind of a "kissing cousin" to MS.

*ME is four times more prevalent in the UK at this time than HIV,

*And more than three and a half times more prevalent than HIV in the US.

*No one knows how it is caught or spread, though there has been 'epidemic'-like incidences throughout the 20th century as well as scattered, apparently 'random' cases that people usually hear about.

*It isn't just 'Yuppie Flu', which most take to mean a kind of over-worked burnout. People of all social classes have suffered with this illness, and contrary to a popular argument I myself have heard, yes there have been cases found in third world countries too, but where the healthcare is poorer these things get reported less. This isn't a disease of the rich or well off, it affects everyone, though that does include the priviledged.

*There has been some biomedical research pointing to certain genes being more active in ME patients than in others.

*The UK still offers no real treatment for ME on the NHS (and in many cases private care is the same). Instead they offer advice on pacing yourself (though by the time you get an appointment for the cognitive behavioural therapy that's supposed to help with this, most of the time you've got that one figured out yourself).

*Contrary to misinformation there are some biomedical treatments available, including certain regimens of antibiotics, antivirals. If the latest WPI research on XAND continues to show interesting results, antiretrovirals might be added to the list.

*The UK has sent no one to the last four annual ME conferences (run by Invest in ME) despite them being held in Westminster and other attendees coming from as far as Australia.

*Despite a review following Sophia Mirza's death in 2005, which had strong recommendations about the treatment of ME patients, nothing seems to have been done in response to the review.

*The US and UK governments have never funded a penny of any biomedical research into ME. I did read Hillary Johnson's (writer of Osler's Web) coverage of the fact that the Centers for Disease Control in the US had money flagged for ME research at one point some years ago but they used it elsewhere. Congress told them off and then gave them more money to start over.

This research has come from a combination of the following websites and some of my own research into news articles and medical websites.

Links:

Invest in ME (please donate) - A charity focused on funding research into ME.

Action for ME (please donate) - A charity also working on research funding, but largely focusing on support for people with ME and their carers.

A Hummingbird's Guide - This is a website run by Jodi Bassett, a woman with ME, put together over many years. It is a spectacular collection of comprehensive information on symptoms, tests, treatments, research, and pretty much every other kind of ME information imaginable (including "why is there so little help and funding?"). It's an amazing site, I highly recommend it, but it will take a long time to get through everything!

A couple of other websites which may help inform you on some of the background to my personal views etc:

Faces of Fibro - I don't have Fibro, but the explanations and views regarding chronic pain and disability on here are good reading.
FWD or Feminists With Disabilities - Yes, I am a feminist. This explicitly means that I wish to treat everyone - men as well as women, disabled or abled, people of colour and caucasian types - as individual human beings and not lump them into groups that I can just dismiss. Ergo, I do not "hate men". I intensely dislike bigoted behaviour of all flavours, but I judge people on their actions and behaviour, not on anything as ridiculously arbitrary as genes or chromosomes.

Any comments or questions you'd rather send me directly? Email me! sophie.meandme(at)gmail.com. Replace the (at) with @, I'm just making some effort to avoid spammers if possible.
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