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.

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.

The Big Apple

After Cincinatti we wandered off the beaten track again to see Falling Water the Frank Lloyd Wright house which was worth the effort! Though the snowy mountain roads were a bit scary. Amazing how you can go from snow to sunny in such a short space of road in this country. So here we are in sunny and cold NYC (well NJ to be precise) and a much needed day of rest. My husband has gone into the city with plans to spend the afternoon in a bar watching Chelsea v Liverpool which is even more bizarre cuz he's a Man City supporter. Oh well no accounting for taste....

Oh and I thought I hated mobile phones at home....at least at home it is now illegal to use them while driving (tho I can't help but feel they shd be illegal to use while walking too) but the Americans haven't quite grasped that idea. On the road yesterday there were sooo many people wandering around the road, suddenly putting brakes on for no reason, changing lanes with no warning all because they are either yapping or dialling or in one case READING A TEXT whilst doing 70 miles an hour! Surprisingly we saw at least three accidents over the last two days and I doubt people walked away from any of them. Add to that their somewhat casual attitude to drink driving and the roads here are certainly dangerous places to be. I love the traffic signs warning you to be alert for drunk drivers. How bizarre, that the sober driver needs to be careful because so many others may not be and how exactly are you supposed to know they are drunk until they're heading towards you in a threatening manner by which time it may well be too late. Thankfully they have superb public transport systems both above and below ground and the bus network in NYC is fantastic for someone like me cuz we can get a bus and go just a couple of stops so I don't have to walk that much and where the buses don't go the subway does. Tomorrow we go into town and I don't really know where we'll go. My son wants to obviously hit the comic shops but he says he also wants to do some sightseeing so we'll see. There are parts of Central Park we haven't seen and his father and me can do a museum or two on Friday. There is always something more to do in NYC.

My life with ME

I have called this My Life with ME because I truly believe I have had this problem all my life. I had a traumatic birth followed by every childhood illness known to man before I was two. A touch of polio, chickenpox twice, scarlet fever, etc etc etc. Clare Francis the yatchswoman who has had ME for many years once said how she had been a sickly child, often being collected from school complaining of stomach pains and just generally feeling sick. Several years ago I spoke to an old family friend about my condition and she said she remembered my mother doing that. Then in the last few days an article appeared in Canada http://tinyurl.com/2zqtpj about a woman who was severely disabled with this illness for many years and it suddenly occurred to me that I was in that state for years when I was about 18-19 only we didn't have a name for it. I was always sooooo tired and depressed but sheer bloody-minded independence and willpower forced me to carry on pushing myself to at least try to live a "normal" life. I still had a social life, I tried to keep working, I even tried to go back to college when working was obviously too much to cope with. I was absolutely as low as this woman but I simply wasn't in a position to "give in" to it. I was not the most rational person during this time, often hysterical and always weepy but I fought on for years until my first major collapse when I was 23 and I came home from work one day after feeling very low with a series of bad colds , went to sleep at 6 o'clock and woke up the next morning at 9.30!! feeling like I hadn't slept a wink. I continued to deteriorate over the following months until I got to the stage where I cd only eat toast and plain pasta and I cdn't bear to hear the phone ring let alone answer it. It was another 8 months out of my life before I cd cope with getting on a bus without having a panic attack. Once I felt capable of working again I was lucky enough to find a job in a very small company 5 minutes down the road from my flat. From then on for a few years I lived a reasonably normal life though I tended to go through periods of months where I did not feel up to going out at all, it was either work or social life but both was too much. Shirley Conran was another woman with ME who has described her battle to carry on running a business, having kids, dealing with a marriage all the while feeling so tired you can barely even breath anymore and crying almost 24/7. A huge problem with anyone accepting that I am really ill is this fact that I will carry on regardless and I try very hard not to show just how bad I feel so people don't see the reality. I am my own worst enemy in that respect.
When I met my husband 19 years ago, I was in a reasonably normal phase though the party I met him at was the first I had been to in probably years. I was working until after about a year I began to have panic attacks and spells of unexplained dizziness and nausea which eventually cost me the job I had. Then when the nausea became almost permanent throwing up and the exhaustion was 24/7 we were sent to a consultant at the local hospital who did every test he cd think of including a nasal endoscopy, berium meals and various xrays all of which came up fine. We had a certain amount of articles and info about this ME but I don't think that influenced him. He eventually concluded that this was the right diagnosis simply because there was nothing else wrong and the symptoms fit. At last I had an explanation for how I've always been but even then it didn't occur to me that the way I was at 18 was the same thing. I believe if I were any less strong, stubborn and independent I wd have sunk as low as the woman in Canada. But the pushing myself so hard to live normally resulted in the relapses and if I had ever got that bedridden etc maybe I wd have had a diagnosis earlier and my life cd have been so different. I now have an autistic son which I may also have had a lot more help with if the medical profession had been a bit more willing to look beyond my illness and believe that his behaviour was indicative of a problem with him rather than a problem with my ability to cope with motherhood (a comment on my medical records that I found motherhood to be overwhelming - well anyone wd if you had a child like this!!!!). When he was 8 I got a diagnosis from one of the world's leading experts in the field but it has still been a battle with the local education authority and if we had not been able to afford to have him in a small private school I doubt I wd be talking to you now, I wd have killed myself by now. That may sound over dramatic but anyone who has dealt with illness, depression and an autistic child (plus a husband who can't cope with stress and has undiagnosed problems of his own but that's a whole other story) - and trust me there are MANY of us - will know that I am not exaggerating, there was a time when I cd have driven a car into a brick wall without thinking twice about it. I have wanted to get all this out there for years because I believe it is important for anyone newly diagnosed or struggling with the symptoms without a diagnosis yet to know that they are not alone. I have often gained a great deal of strength from other people's history and experiences and if I can help even one person through that awful misery this illness reduces your life to, then it's worth the effort of all this typing! Many friends have said I shd write a book about my experiences but this is going to have to do for now. I guess this shd go under the "About me" section but for now it can stay where it is. I don't care if anyone's interested really I am doing this more for my own therapy I just hope it might interest someone.