This section is dedicated to our members who wish to share there experiences of living with ME (Mylagic Encephalomyelits). Some of the stories may be disturbing to the reader, but they are telling their own story about the reality of living with this dreadful desease, while other ones will be offering helpful ways to cope on a daily basis.
As an organisation, we are here to portray the truth and reality of living with this condition and will not try to 'cover up' anything in order to please others
Lynn Gilderdale DOB -
News stories concerning Lynn
(Picture of Lynn in 'header' of website)
Lynn’s case has been in the news recently, not because she died and not because she had severe M.E., but because of the public interest that surrounds assisted suicide. The issue of assisted suicide is of course extremely important to me. No one should be trapped in that place where there is no escape, no choice. However, my priority is to highlight what took Lynn to that place of no escape. It was M.E. M.E. led her there, minute by minute, day by day, year by year, slowly and painfully. It destroyed her body and put her through indescribable suffering on a daily basis for 17 long years. Morphine toxicity might have been the ultimate cause of death, but it was M.E. that took her there.
Lynn had a wonderful life before illness struck; she was healthy, happy, vibrant and beautiful. It started suddenly in November 1991 after a BCG vaccination. She deteriorated rapidly. By the time she’d been ill for 6 months she was totally bedridden, unable to lift her head of the pillow, or care for herself in any way at all. She was tube-fed, her legs were paralysed and she couldn’t sit up. She was unable to speak, read or write and her memory had gone. The list of symptoms seemed endless - sore throat, swollen glands and lymph nodes, nausea, dizziness, fainting, muscle spasms, fits, headaches, noise and light sensitivity, poor temperature control and severe pain throughout her body. Vomiting and diarrhoea would go on for weeks, necessitating feeding through a vein.
This degree of severity continued over 17 years of illness. Lynn had between 55 and 60 admissions to hospital, often critically ill. [During her first year of illness, she had been treated so badly that she became terrified of doctors and nurses. Consequently, I would not leave her alone in any hospital and stayed with her day and night throughout any subsequent admissions.] She contracted innumerable infections, including pleurisy, septicaemia and MRSA four times. Blood clots, pulmonary emboli and medical mishaps threatened her life several times; on one occasion ending up in King’s Intensive Care Unit on a life support machine. Yet, unbelievably, we still came up against accusations and disbelief. This hurt Lynn greatly.
Eventually, with the help of our GP who had been very supportive, we set-up a system that reduced Lynn’s hospital admissions. After training, we were allowed to give intravenous fluids and medication at home at a level of care that one might expect to see in a hospital or nursing home. This made a huge difference to our daily lives as Lynn’s hospital admissions were reduced to about 3 a year. She was still extremely ill every day, but being at home for longer periods allowed her some respite from the strain and drain of the hospital life that inflicted noise, lights, injections, prodding and procedures. There was no rest, no understanding, just constant pressure to do this, that and the other.
Lynn was amazingly courageous throughout all this. She was going through so much but somehow held on to her fighting spirit and wonderful sense of humour. Her memory improved and she was able to type on her little handheld computer. She made friends and shared her wicked sense of humour and caring ways with others.
Although every system in Lynn’s body was badly affected, for a long time she truly believed she would recover, but gradually, as a result of chronic illness, more and more conditions were added to the already lengthy list [hypothalamic dysfunction, liver dysfunction, adrenal failure, angina, renal tubular acidosis type 1, osteoporosis, to name but a few ] and she started to say to me in her sign language, ‘Mum, you can’t fix me any more – I’m too broken, I’ve had enough’. It broke my heart.
Here is an extract from what Lynn herself wrote about how she felt:
“I'm tired...so very, very tired. And I just don't think I can keep hanging on 4 that elusive illness-free existence, that could, technically, be waiting 4 me just around the corner...but 4 which I just can't keep blindly holding on 2 ever-diminishing (& now pretty-much non-existent) hope that I will, 1 day, be well again.
I just can't do it.
I'm just tired...my body is tired, and my spirit is broken.
I've had enough - can u understand that? I hope u can, I really, really do.
Please don't be angry; try 2 understand....
Try 2 put yourself in my situation. Re-read the online newspaper articles about me 2 see - only a tiny part of - what I've been thru in the past 16yrs, & continue 2 go thru every day... Spending every second of your life in intense pain, feeling permanently extremely ill (NOT just lying in bed resting - oh, if only!!), & being 100% relient on others 2 care 4 your most basic needs, only surviving because tubes & medications & pumps & feeds are keeping u alive artificially - without all this modern technology, I wouldn't still be here. Imagine that u had led your life from inside 1 small room (apart from regular hospital stays), & from inside 1 single bed, for 16 LONG yrs, since u were only 14yrs old...
Imagine being 31yrs old & never having kissed some1. Imagine having the painfully thin bones of an 100yr old woman & not being able 2 move without the risk of a serious fracture... Imagine not being able 2 get the spinning thoughts out of your head because you're unable 2 speak & are too ill/weak 2 properly converse with others in any meaningful way, except by slowly typing emails 2 ppl on a little PDA... Imagine not being able 2 turn yourself over in bed or move your legs without some1 lifting u...
Imagine having 2 use a bedpan lying down (not easy) & having 2 have your own mother wipe your bum 4 u... Imagine having never been in a pub or club at 31yrs old... Imagine never being able 2 fulfil the 1 thing u want above all else (except your returned health), the thing that should just be a given right 4 all young women: 2 have your own child. As I've already said, obviously I know that alot of women can't have their own children, for 1 reason or another...but that doesn't stop MY heart from aching with the need 2 hold my own baby.
Imagine wanting 2 die - knowing, with every fibre of your being, that it's what u desperately want - but being too ill 2 actually be able 2 end your life yourself, & therefore being imprisoned inside the miserable existence which is your "life"...
Imagine that all of the above is only 4 starters; that there's SO much more going wrong in your body than u would have ever believed is possible, & u only discover the extent of what's going wrong as each new pain/symptom is investigated & shows up yet another serious abnormality...
Proof of organic illness; yes.
But how does that help me, really?
The drs have no idea how 2 piece 2gether all the parts of the jigsaw that are my condition(s). Right now, they just don't make sense.
1 day, I KNOW they will. But not now; not yet; not 2day; not for me....
I don't have 2 imagine any of the above.
This is my reality.
And I've had enough.
My body & mind is broken....& I want peace. God, I'm SO desperate 2 finally end this seemingly never-ending carousel of pain & sickness & illness & suffering....
But altho the love of my friends & family has kept me going when at my absolute lowest, I can't stay here just 4 u guys anymore... I just can't.
I have nothing left.
My mind drifts back to Lynn at the age of 14, a lively, fun-loving teenager, with a bucketful of hopes and dreams. Dreams that were eventually destroyed, not only by M.E., but by the doctors and nurses who just didn’t believe in M.E., who, with their preconceived ideas of what M.E. should be, denied Lynn the care and respect she so rightly deserved.
Lynn is an inspiration not only to me, but to others, whose lives she touched. Right up to her last days she wanted the general public and the medics to understand that M.E. is a serious neurological disease and to recognise how damaging, treatments such as, graded exercise can be. She repeatedly asked me to make sure her body went to M.E. research and told me answers would be found within her – she was right. Lynn was so brave. She struggled on for so long, but in the end she desperately needed to be free.
So here I am without my beautiful girl. I watched her dreams disappear as they were swept away by an illness more complex and cruel than any I have ever encountered. Lynn will live forever in my heart and in the hearts of all who knew her. I was truly blessed to have such a daughter.
I hope beyond hope that there will be no more cases like Lynn’s. That proper funding will be put into quality research to find the desperately needed answers that Lynn knew were there to be found. Then maybe everyone with M.E. will be given the proper treatment, care and respect that Lynn so badly needed but sadly never received.
‘Just living is not enough. One should have sunshine, freedom and a little flower.’ - Hans Christian Anderson
1973 - 2005
Extract supplied by Sophia's mum, Criona
Sophia died from M.E. in November 2005. The day before she died I promised her that her life would help many other people.
The object of this site is to show how and what was done to Sophia, so that maybe through this, others will become aware of the horrors perpetrated on her and on many others suffering from this terrible disease. I believe that it is incumbent on each and every one of us to find a way to ensure that all doctors and psychiatrists must conform to the guidelines of the World Health Organisation.
My youngest child, Sophia, suffered from severe Myalgic Encephalomyelitis (M.E.) for at least six years. This disease is also controversially known as Chronic Fatigue Syndrome (CFS). Since 1969 the World Health Organisation (WHO) has categorised M.E. as a physical neurological disease. The doctors and psychiatrist threatened Sophia with sectioning in a mental hospital if she refused to go into a particular M.E. Clinic. They carried out their threat in July 2003. The effects on Sophia's health were devastating. She died on 25th November 2005. She was only 32.
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