Scandal !! How people with Severe ME are simply ignored.
I have not posted anything in Stonebird for ages - that is because I am too busy trying, somehow to cope, to survive, Linda is so ill. It is fair to say, I think, that right now Linda and I are being pushed way beyond the limits of human endurance.
Can you imagine that ?
If you do not have direct experience of Severe ME, no you probably can't
I have just received this heartbreaking, desperate letter from a fellow sufferer - who has kindly allowed me to publish it, names removed, to highlight the plight of people with Severe ME, the scandal that the most ill are given NOTHING !!!
Far too ill to accept help, far too ill to access the likes of Facebook, as this mother says - what do you do ? How do you survive the daily torture and torment that is this awful illness ?
Going through hell here, sadly, I have stumbled upon the following equation - the amount of help, the amount of understanding, the amount of friendship you get in is inverse proportion to how ill and how desperate your situation is .
Dear Greg and Linda,
Thank you for your site and being there as a source of support and a voice for people like yourself and others who are suffering from this terrible illness.
I am in a state of torment and like probably thousands of others have absolutely nowhere to turn, and just really need to relieve myself of the severe worry and stress I endure every minute if every day.
I am a 50 year old woman and a single parent to my wonderful caring Son .I have been housebound for the around 12 years with severe ME and tortured every day with severe symptoms, isolated alone and basically left by the medical profession, after the usual routes which is probably just as well.During that time I have been cared for by by son and my ageing Mother, we have no other family and my son's father has never been there for him, or cared about him.
During all these years my son has never had any support, never complained and managed to gain a degree in Economics despite not being very well himself during that time.
Just after completing his degree he started to become very Ill, and now suffers from severe ME also.
We are now both housebound very Ill and living with my 95 Year old Mother, we have absolutely no support whatsoever, I am bedridden although I can manage personal needs and can get to the bathroom, my son has enough in him to still look after me as far as giving me my meals but he has to lie down constantly throughout the day.
I am far too ill to have social services in as when I enquired they said they would only consider coming in if it was 3 times a day to wash and feed me and I definitely don't want that and neither does my son and my mum, it would be too much for us.
I have rung (a charity) , and they said they would ring us every week just to see if we were okay and if we needed anything, and then the bloke who came to see us said I know what your going through I have been diagnosed with chronic fatigue and get very tired! What the hell can you say to that! I just told him that we were seriously ill and didn't feel tired.My son felt some sense of relief though when he said they would ring and call if we needed anything, unfortunately they haven't kept there word and have stopped calling.
My greatest fear is that my son is going to be left completely without anyone and housebound without any family and very ill for the rest of his life.
I just need someone to call now and again to see if my son is OK, he is going through hell, worrying about me and having not one person to support him, we are both far to ill to have social interaction online.
I know you are both suffering a lot, but it just gives me a release to tell someone who understands.
Lots of Love.
X
Thank you so very much for posting this. This is the most heartbreaking part of the illness: "Going through hell here, sadly, I have stumbled upon the following equation - the amount of help, the amount of understanding, the amount of friendship you get in is inverse proportion to how ill and how desperate your situation is."
ReplyDeleteSadly, I have to agree with you. As I have become sicker and sicker over the decades I have been suffering with M.E., I have seen the support of family and friends dwindle away, and what is worse, the community of M.E. patients has become more and more callous.
Those who are healthy enough to attend meetings in distant cities and court the government agencies only present their own concerns while ignoring the people who are desperate--and many near death, isolated in their homes.
Sadly, I think these people will never understand unless it happens to them, and then it will be too late.
People who have the annoying and inconvenient symptoms of light or moderate M.E. obviously fear to even acknowledge that severe sufferers exist. To do so would be an admission that it might happen to them also, and most cannot bear to face that fact.
I am grateful for your articulate voice for those of us who are desperately ill--too ill to speak for ourselves.
Bless you, Greg Crowhurst.
Patricia
Dear Patricia,
DeleteLinda and I think you are absolutely right -in our experience the most severely affected are not being properly represented, in fact they are often being badly let down, by those well enough to attend meetings etc. That is such an important point you raise.
Re family, friends, again in our experience , the more ill Linda gets the less they stay in touch. I think there comes a stage, perhaps, where people do not want to know or cannot cope with knowing. To our neighbours here, it is extraordinary , Linda has long ago ceased to exist - one especially has completely blanked her out. Even though we are both Christians, in fact that is how we survive, our local church has nothing to do with us either - Linda is profoundly ill and we are profoundly isolated right now.
Bless you too Patricia
Patricia
ReplyDeleteI think you are being too harsh tbh
I have moderate ME. Today I have been confined to bed and seeing Greg's letter is heartbreaking. TBH I haven't been able to read it fully because I find it upsetting. "There is always someone worse off than yourself" is of no comfort. To know that there are people with ME worst than mine is hard to bear. Mine is bad enough to cope with.
People with severe ME must be in a living hell. If people with mild ME turn their backs on more severe ME sufferers then they should be ashamed. Am really sorry if that has been your experience though.
Take care all
with hugs
Paul
Thanks so much Paul. I have to say Patricia's experience corresponds with ours. In terms of people turning their back, the local ME movement has very little to do with us. Truly Paul, the most severely affected are suffering untold isolation and deprivation.
DeleteDear Greg,
ReplyDeleteI absolutely agree that there is a direct correlation between the worst a patients is physically, the less support and assistance is visible. I would use your writing skills to alert your local newspaper and ask to post what you are describing here. I can't remember what county or town you are in. Believe me,I have been through this and am still reeling in shock at peoples' behavior. I just want you to know that there are people out there who will help, if they are asked. Prayers going up for you and Linda. Mary
Bless you ! We are in the UK. I have made good use of my local paper over the years. You are so right about reeling in shock, I am dumbfounded - if I was not going through this with Linda, I would not believe how someone, suffering so terribly could be so ignored. Thank you for your prayers Mary.
DeleteI am so sorry to hear that you are suffering, and so horribly. I assure you, that as someone who is more high functioning we have not forgotten about you. My doctor, Dr. Jamie Deckoff-Jones, includes those who are bedbound in her patient population. Any treatment that can be rustled up by anyone is sure to benefit all levels of the patient population. And in saying this I realize right now that there is a discrepancy between those who have money and those who don't. Dr. Deckoff-Jones has published all of her treatments of which I find oxygen the greatest help. A 10L oxygen concentrator, a non rebreather oxygen mask, take twice a day for 30 min.
ReplyDeleteMy thoughts and prayers are with you.
I'm so sad reading this blog. I'm a 25% ME group member and just wanted to say I care about whats happening to people especially the very severe sufferers who are bedbound.
ReplyDeleteI just wanted to send a hug out there to you all x
Dear greg thanks for publishing the letter.my circumstances are different from the letter writer ,but oh so similar too.i live alone,about 80% bedbound with little help or support.i have had similar probems with social services.it seems if you don't need ,or able to accept/cope with ALOT of help [which isn't always m.e sensitive or appropriate either] you don't get any help at all.
ReplyDeletehave difficulty with online interaction too,it has taken me days to write this.
my life is just trying to survive somehow ,one day at a time.
thanks for your website.i look in when im able,find it so helpful and real, and thanks to the lady who wrote the letter,for writing the letter,saying how it is for some of us. Alison
I was bedridden more than a year before social services agreed to put care in place and when they did, three visits a day (never knowing what time they would be) from noisy carers wafting perfume and cigarette smoke into an otherwise sealed environment made me so sick the harm outweighed the benefits. The social worker knew 'all about ME' (She did a course!) but clearly thought I was just depressed (which I'm not) and a little fatigued (as if that would ever stop me). The first care agency they sent was a rehab agency that thought they could cure me with a bit of tough love (trying to make me go downstairs everyday to cook my own meal when I couldn't even get to the bathroom).
ReplyDeleteI live alone so have to have care but refuse to have more than an hour a day just to make sure I have food and water. It is a constant battle to keep my care package because they assess entitlement based on the number of hours you receive so as I only have one meal, no trips out and no personal care it is assumed that I am showering, dressing, shopping, doing my own housework, getting outof the house and making at least two meals for myself everyday. None of the 5 agencies I've tried have any knowledge of ME, refuse to listen to anything I try to teach them about it and assume that the less care I receive the less important it is to stick to consitent care times or familiar carers that understand my needs. I can fully understand why the family in your letter would avoid care even though they clearly need it.
This is exactly the issue - the lack of understanding of how hard it is to provide help in a tolerable way. The needs are massive but the possibility of accessing help is misinterpreted as no need, this is why the systems are failing people with ME - but it has not been picked up on by the Charities in any meaningful way. There needs to be a campaign on how to properly provide care to people with Severe ME. The problem is the psychiatric lobby constantly undermines the reality, needs and experience of the most physcally disabled, leaving people desperatley in need of inaccesible care , leaving people isolated in immense suffering and distressing cirumstances. Thank you so much for this comment.
Delete