The Other M.E.

The Other M.E.

yippee someone who agrees about the damages of terminology.

Memorials

http://www.ncf-net.org/memorial.htm

This page is a sad reminder of how Lynn Gilderdale's case is not so unusual. Spare a thought today for those not so fortunate.

http://support-gilderdales.blogspot.com/

Happy xmas all and please add your comments to my Lynn Gilderdale blog when you can. Lynn's family must be having a very much harder xmas than most of us can imagine and they need to know we are all feeling their pain. At this time of year more than any other we must think of others and offer all the support we can to those in need. I have read many articles that come out of the woodwork when things like Lynn's death happen and every symptom described I can honestly say I have suffered at some point but fortunately not as bad or for as long as someone like Lynn. I am one of the reasonably lucky ones who has come out the other side of the pain, depression, brainfog, etc associated with this illness though I still suffer constantly to some degree. I envy hugely anyone who says they are "cured" of this illness but the truth is many of us never recover a full and functional life. In the wake of Lynn's death it is vital we do not give up the fight and that we persevere with the battle for recognition and better services that are so badly needed.

Arrest over ME campaigner's death

The mother of a prominent ME sufferer and campaigner has been arrested on suspicion of murder following the death of her severely ill daughter.

Kay Gilderdale, 54, was questioned and released on police bail after the death of Lynn Gilderdale, 31, on Thursday. Sussex Police were called to Ms Gilderdale's home in Stonegate, East Sussex, at about 0830 GMT. Ms Gilderdale had been campaigning for a better understanding of ME, which she contracted about 17 years ago. Her family, who issued a statement through Sussex Police, said: "Lynn was young, beautiful, loving and caring.

"At the age of 14 years she was struck down by ME - an illness greatly misunderstood - and, as a result, suffered the stigma attached to this dreadful illness. She fought long and hard for 17 years with immense bravery, enduring constant pain and sickness. Every system of her body was affected."

Ms Gilderdale required 24-hour care, but still had time for others, her family said."She was a much-loved daughter, sister and granddaughter who, despite her illness, always gave love and support to others," they continued. "In life Lynn strove to help the medical profession improve their insight into ME, which affects thousands of people in varying degrees of severity."

TB vaccination
Rother district commander Ch Insp Heather Keating said: "This is a very tragic incident, but we are not looking for anyone else in connection with it." Mrs Gilderdale has been bailed until 6 March, 2009. Her daughter fell ill after receiving a vaccination for TB when she was 14-years-old. She then went on to have bronchitis, tonsillitis and glandular fever, before being diagnosed with ME. The condition, which is also known as Chronic Fatigue Syndrome, often left her unable to get out of bed. The ME Association estimates that 250,000 people are affected by the condition in the UK.

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/england/sussex/7771047.stm


A tragic story about a girl who had ME since she was 14 and was mostly bedridden. Doctors had at times labelled her attention-seeking as if she CHOSE to be that ill. I have heard many people say that they resent the implication by practitioners of certain therapies that if a particular therapy doesn't work for you it's your fault because you don't WANT to get better. The arrogance of perfectly healthy people never ceases to amaze me! People like the GP I had when I got my diagnosis who put in my notes that I "seemed content with that diagnosis" - as if yeah ok I'll accept that, it may not be real but I'll go along with it. I don't exactly know how he thought I was supposed to react - very strange. How could anyone for a moment believe that this girl's family didn't do everything within their human capabilities to make their daughter's life better. I personally wd give anything to be able to go back to work, have another child, run a marathon, etc etc etc. This is not a lifestyle choice and this is not how I planned my life to be. For whatever reason everything Lyn's family tried was all futile and she had had enough. Thankfully I have rarely been that low and never been completely bedridden but that sense of futility and despair, the feeling that you have no future to look forward to, the depression every time they tried something new and it failed, I can relate to as can every ME sufferer the world over. Someone suggested all the support groups, all the sufferers, all the supportive medical professionals (they do exist, really) shd consult her parents to name a day when we can all remember amazing people like Lyn and her mother and remind the world what a very real, debilitating illness this is. I know we have ME Awareness Day etc but specifically to honour the extraordinary spirit of someone like Lyn who, in spite of being so ill for so long, still managed to keep hoping, keep fighting, keep raising money and awareness. Sadly it all got too much for her but we must never forget how much she and her family did to further the cause of other ME sufferers. RIP Lyn, may you not have died in vain.

http://news.bbc.co.uk/1/hi/health/334716.stm
This is an excellent article about how this illness is soooo much more than just being tired. For all those ignorant people who make comments like "we all get tired sometimes" and "I'd love to not work and just sit around all day".

Oh dear I seem to be having a campaigning day! Maybe it's because I have no strength today to do anything physical so I'm glued to my pooter. Legs are killing me, can't keep my eyes open and short of breath...and hey this is an average day. C'est la vie.

I find this blogging thing fascinating. It never ceases to amaze me how open and honest people seem capable of being in a blog as opposed to real life...if someone sat and ranted the way people do in real life, they would be treated like a total freak and people would run a mile the other way in case they catch this disease called "sharing". Especially the British. Americans love to talk, love to discuss things. They are happy to hear your life story and you only just met them five minutes ago. They will I might add probably forget every word you said five minutes after you're gone but it's the thought that counts eh? When they say "Have a good day" they genuinely mean have a good day. They just like people to be happy. We the British on the other hand are miserable misogynistic self-centered unfeeling race. We don't want anybody ELSE to have a good day. We want to have a good day but it's an even better day if it's at somebody else's expense. I like to talk to people and people tend to respond by talking to me. This seems to make me a bad person according to certain members of my family. At a family gathering once I got talking to this girl and she was telling me all about how important it was for her girls to go to private school (local schools in London being crime-ridden slums apparently), how they cdn't afford to have another child because they wanted the best for the two they had, among other subjects. She even at one point asked her husband to get her a drink so if she wanted to get away from me she had several opportunities. But as far as my sister-in-law was concerned, she was obviously just being polite, tolerating me, and I was persona non grata from then on. My father let slip some time later that she had made some comment about how much I talked and people didn't like being bored by me. Wdn't it have been nice if she cd have had the decency to talk to me face to face and hear my side of the story. Maybe I was the one who felt her friend was boring me but I just cdn't get away from her! I bet that scenario never occurred to her. As it was I reckon the conversation was absolutely 50/50 but I guess her friend had never talked to her like that so it must have been me that was the problem. My point here is how these blogs give people that opportunity to have a rant, commiserate, celebrate or educate and boy do people not grab that opportunity. I found one this afternoon in which this woman was giving an almost day by day report on the difficulties of living with a schizophrenic husband. I admired the detail, the honesty of her descriptions of her husband's hospitalizations and her own depressions. I found myself reading it with such enthusiasm it reminded me of the above situation and I thought you know what, I bet if you asked that girl how she really felt about us talking for so long as we did, I'll bet she'd say the same thing. Sometimes it's wonderful therapy and sometimes you just find you have so much in common with a complete stranger when those closest to you won't give you the time of day. I got the feeling this girl wanted to talk to someone and I was there. Contrary to my s-i-l's opinion, I was NOT the only person talking in that conversation and she seemed to miss that point. I got the distinct impression not many people were in the habit of listening to this girl and she seemed to welcome the opportunity to talk just as much as I did. Isn't it sad that being interested in others and being willing to share their problems makes you a bad person?