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.

writing about ME

I have just found yet another book on ME, this time a novel written by a long-term sufferer. It's called "The State of Me". The ME Association describes it as 'a remarkable first novel... absolutely word perfect on neurological ME'. Yet the author has posted on her blog a review by a fellow sufferer which contains the following paragraph: 3/10 for the quality of the information given about M.E. It really was very poorly researched and almost entirely inaccurate. Almost all of the information given related to 'CFS' rather than M.E., and these are two very different entities".

I'm confused...whilst I personally wholly agree about the differences between these two illnesses that people are so happy to clump together, the author has had this illness since 1983 and felt that what she was actually doing was describing ME not CFS and that she had the experience and had done the research over so many years! I would expect this antagonism from non-sufferers but isn't it odd that this illness causes such conflicting views even amongst its' own people! No 2 sufferers have the same symptoms. Just because someone has had a different experience to you does not make their experience any less valid. Maybe if we cd all adopt that attitude to everything in life, the world wd be a far more reasonable and tolerant place to be in.

When is enough enough?

It's not like I haven't been here a thousand times in 20 years but every time feels like the absolute last time I can bear. And yet I'm still here. Truth is I can't move, I can't leave primarily because I just plain ain't got the strength. Not because I cdn't live without him (cuz believe me I have reached the point where I soooo cd!) but I mean I really ain't got the physical strength. That's one of the worst things about ME, there's so many things I want(ed) to do with my life and this illness has robbed me of the opportunities. I don't really like moaning like this. I try to keep as optimistic as possible because otherwise I wd have curled up and died years ago. but when is enough enough? When do you reach that point where you have to concede that nothing is ever going to be right with this man, that he is never going to admit or accept that he has problems that are nothing to do with me, that my life is never going to be any better than this!!! god that's depressing enough all by itself. This is as good as it gets.

I put into Google "living with ME/CFS and a bipolar partner" and every page was about either one or the other but not both. Somehow I doubt I am the only person in the whole world who lives like this. Maybe they're all too busy trying to survive to bother writing blogs like this but there must be somebody who can sympathise. Of course that's not including the child. If I looked for people who have ME, live with an undiagnosed bipolar partner AND have an autistic son, I somehow doubt I'd find many pages. If you are out there please let me know. Even if it is just to have a bitch about it all, there must be someone out there who feels as desperate and in despair.

Is there a point to this rant? At this point, I don't think so because I have nowhere to go with anything. I can't move out cuz the child can't be disrupted like that. I can't bear living like this, tensing up the minute I know he's home, dreading what he's going to find to scream about now. I just need to get this all down cuz I really believe someone needs to hear what I live with so when enough really does become enough, there is a record of my side of things. So being as I have to be here, at least I have some way of releasing all this frustration and misery.

We've had a couple of weeks of him being half human and relatively normal but the little things start happening again. He went away with the boys for the weekend and my son and me had the best weekend in years doing absolutely nothing. Not surprisingly when it's just the two of us, we have no stress, he does what I ask, he doesn't argue about food or anything else, and we have a totally chilled time together. Over the weekend, I had put whatever plates etc in the dishwasher. First thing Monday morning, I find him handwashing a load of dishes. We have a dishwasher and yet he had taken the plates OUT of the dishwasher, leaving one plate and one bowl and all the cutlery in the dishwasher (why?!) and handwashed them. Sorry am I missing something here? is the dishwasher there for decoration? Why did he leave one plate and one bowl? I spend my life trying to make him understand the problem is him getting these "manic" episodes where he is looking for things to do and excessively screaming about trivial things and generally acting like the only person who exists and matters in this life is him. He does not see behaviour like this as a problem. The dishes needed washing. Yes but they were in the dishwasher, why did you need to take them out of the dishwasher and do them by hand. No doubt he will justify it by bleating on about how much energy the dishwasher uses, how it wasn't full so it wasn't right to put it on half full, how he had to do a few glasses anyway so he did the plates as well (oh he left about four glasses in th edishwasher too btw). Amazing how if I only did part of a job because I ran out of strength and energy he wd be screaming. I can't really expect most people to understand why this seemingly little thing is so upsetting to me but I think it sums up the problems. It was completely unnecessary to do, he left 1 plate and 1 bowl and all the cutlery so it cdn't have been that important yet he doesn't see the fact that he was even doing something so unnecessary is Manic. Then this morning, my son is sitting there waiting to go to college because his father said he'd drop him off, I'm sitting there in tears and having a bad time trying to get going and he suddenly tells me to turn the tv off and starts trying to discuss the itinerary of our upcoming holiday!!!! Is this the time and place? How come when he wants to discuss something I have to turn the tv off because it distracts him but when I want to talk to him about something he doesn't even have the decency to take his eyes off the tv and actually listen to me! If he's on the phone I am not allowed to try and say anything to him yet the other day when I was on the phone he came up to me and started showing me a little ornament as tho I'd never seen it before and started trying to tell me it was broken apparently or whatever and when I pointed out that I was on the phone, he just gets angry and stomps of ranting. There are so many instances like this every day, I don't know how much more I can take. They all sound like such small things but when you have to live day in and day out with this unreasonable irrational manic response to every tiny little thing in life, it really is too much to cope with.

Fellow ME sufferers will understand, bipolar sufferers might relate, parents with autistic children can relate to how difficult THAT is but even I can't quite believe myself how hard it is to live with all three! I think that's the point, most rational human being wd not still be living with it after twenty years. How much easier wd it have been dealing with this child if it was just the two of us? Wd his father be as bad if we had a "normal" child? I don't even need to suggest how different things wd have been if I didn't have this illness. The fact is I do and I do have these other difficulties to deal with so I shall just put my best Sagittarian foot forward and carry on regardless. I think I just need to do this more often. I feel so much better for just letting it all out. Maybe there is someone somewhere who can help tell me how to keep up this positivity cuz I'm beginning to lose it.