I just had to come on and say a HUGE thank you to everyone for being so wonderfully supportive.
I have been inundated with emails and messages with words of support, kindness and inspiration. I am overwhelmed with how much love there is out there.
I am telling you because I wanted to share the love with all of you. (Not just because I want to make myself look popular!) And I have been reminded of what I already know, but it never hurts to hear it again:
People do recover from M.E./CFS but everyone's road to recovery is unique.
Amongst the wonderful support people have given me, they have also shared their own amazing stories of how they have improved/or are improving their health: The Lightning Process, Lymphatic Massage, The Gupta Amygdala Training Programme, Supplements, Kinesiology, Thought Force Therapy, CBT, The Optimum Health Clinic and many more.
I think it's good to be reminded of the progress people are making with whatever version they have of this complicated illness. It can be hard when we try something (or lots of somethings!) that doesn't work for us - but maybe the next thing will, or maybe it will be another piece of our wellness jigsaw. I am choosing to carry on believing that recovery is possible.
I have always tried to have an open door policy on the blog - but I think we can safely say that that hasn't worked out all that well for me. So I have implemented comment approval - not to stop people from challenging me but to stop comments which are aggressive and rude.
Take care of yourself lovely, lovely people; I wish you all the best on which ever recovery path you are travelling on.
And I will be back very soon.
xxxxxx
No matter which topic you are writing about you always share with honesty and style. So very happy you are feeling loved and supported. I am right there with the many others who feel you so richly deserve both...xo
ReplyDeleteYou are an amazingly, fabulously, strong person (proper english there!haha). Well done to you and Billygean for your great strength and dignaty through an awful time. I havent had the pleasure of knowing your personally, but your blog gives me a ray of sunshine through the clouds of ME. I have bitten my tongue after many comments with the understanding that feeding something can make it worse but I have felt horror at some of the things that have wrongly been said. Enjoy your break and dont be afraid to come back soon. There are many people who will miss you. Take care, Hayley xx
ReplyDeleteWow. MORE love! Thank you very much ladies.
ReplyDeleteYes, BG has been amazing through this (in both supporting me and in the way she has handled herself when she too came under attack.) Unfortunately for her this is not her first experience of such behaviour.
I think you were wise for staying out of it Hayley. Negative energy is not good for any of us.
Lots of love to you both. And I think you are both pretty amazing too! xx
Well said Karen. I think most of us with this illness have just about gone bankrupt trying to find something that will make us better.
ReplyDeleteAnd you're right, everyone responds to this illness differently and I am very happy for anyone that finds their way back to health.
As for me, I will continue trying.....: )
Thank you Michelle.
ReplyDeleteAah yes the money side - just think of all those shoes and handbags we could have bought instead!
I LOVE hearing about people who recover; I truly hope that you will soon be one of them. And at least by trying we are putting ourselves in with a chance!
Love and energy...xx
Hi Karen,
ReplyDeleteI'm glad to see that you're recovering, and that you're hearing others' recovery stories.
I just wanted to tell you that I have had severe ME for 20 years, and have tried SO very hard to get better. I have tried lymphatic massage (the Perrin Technique) The lightning Process, seen several nutritional/holistic doctors and followed all kinds of complex and expensive protocols, done courses in mindfulness for stress, pain and illness, and spent 9 months at Professor Findley's inpatient unit at Queen's hospital, Romford, following a strict and extremely demanding rehab programme (and this isn't the complete list of treatments I've tried). Through all of this i was told i had the "right" attitude, was positive and constructive and gave everything I had to make the treatments work. And despite my lack of sucess, i still live my life as positively as possible, and hold out some hope.
Unfortunately, over time my health has deteriorated rather than improved. I am now completely bedbound, on morphine for pain, and have developed secondary conditions including severe POTS. Every day of my life, I battle to sit up for a short while, to eat my food, to wash with the assistance of carers etc.
I read the discussion over your last post, and have to say that although you found some comments rude or aggressive, I do share the frustration and anger and offence taken by these other commenters. Because, believe me, there are plenty of people with ME with the most positive, proactive attitudes you could hope for, who despite all their time and money and back-breaking effort, simply aren't getting better. This is why we want to see biomedical research; why we take offence at the vague but pervasive idea that somehow our failure to recover is associated with "negativity", and why we are deeply offended by the suggestion that being ill to the degree that someone like me is, is keeping me protected in a bubble where I don't have to face the difficulties of the rat race. Being ill like this brings daily challenges that the average person couldn't begin to imagine.
I can tell that you want to help people with ME, but would like to point out that some of the ideas that you and some of your blogging friends are promoting (such as your friend BilyGean calling other sufferers the "ME is incurable brigade"), are feeding into a kind of blame culture for those of us who haven't begun to recover (and often we are the sickest, longest-term patients),and feeding the idea that people with ME are just lazy, unwilling to help themselves, or even neurotic. I might be wrong, but i think these (often not-so-subtle) undertones may well be what has inflamed the feelings of others who commented on your last post.
Like I said at the beginning, if you are recovering, all power to you. But please, when you take up blogging again after your mini break, I implore you to think through the significant social, emotional and cultural consequences of some of the ideas you are promoting, for people like me - people who deserve our lives back just as much as you, people who have worked just as hard at it as you, but who sadly aren't as lucky as you.
The thing is, you may congratulate yourself for your recovery, but, you know, you might just be lucky and nothing more.
Respectfully,
Amy
Hi Amy
ReplyDeleteThank you for sharing your perspective openly and honestly in a non confrontational way.
I can't begin to imagine how tough your situation is - and I agree whole heartedly that maybe luck has played a part in my health improvements.
I wish there was a different name for what I have experienced as clearly it is not the same as what you have been through/are still going through.
I would never say - or think for that matter - that someone with M.E is lazy. I only ever write about my own experiences. I do not have the answers; I am just doing my best to get better. I do not think recovery is as simple as being positive but I do believe in the link between the mind and the body; as I do with any physical illness.
I have tried many, many treatments. And like you - I have approached all of them with positivity but that has not necessarily secured a successful outcome. I have only been in this situation for 7 years and I have only ever had moderate CFS; I have found this tough enough so I can only begin to understand how tough it is for you.
I understand why my references to an exercise from The Chrysalis Programme which asked you to consider what benefits you may get from being ill has offended people. And I am truly sorry for that. I have changed the wording on the post as I agree with you, severe M.E. is a different case entirely to mine. I was only talking about my own experience but I accept that the language that I used was inflammatory and that I could have worded it better. (I have already apologised and put more detail on the previous post.)
I am happy to be challenged Amy. I have not experienced severe M.E. so inevitably I will get it wrong some times. Believe it or not I do try to be sensitive - but obviously on this occasion I got it wrong.
However, some things have been taken out of context - which I guess is often the case. And, yes I did find some comments very aggressive.
I take on board what you are saying Amy, I really do. I would like to be in a world where the fight for biomedical research and pursuing alternative treatments are not mutually exclusive. Maybe that is a pipe dream!
Thank you very much for being polite - you have demonstrated beautifully that it is possible to challenge someone without using bullying tactics.
I truly hope you find some way to improve your health.
Karen
Hi Karen, it does look like you needed to institute comment approval.
ReplyDeleteI do think that there are often benefits for us in being ill (any illness). I think that it is largely to our credit that we find ways of getting these benefits. But not always. And this certainly doesn't mean that we wanted to get ill or that our wishing made it so.
My partner had a melanoma (probably due to genetics, she has never been sunburnt), and was surprised to find that she did find some benefits in this. Finding other ways to get these benefits didn't make the melanoma go away (this required surgery) and certainly wasn't the reason she got it (probably genetics for her).
I'm glad that you seem to be able to win your battle with M.E/CFS. I enjoy hearing about your experience.
Hi Karen,
ReplyDeleteI just wanted to say that I very much relate to what Amy said. I'm bedbound also, and very severely ill - though thank God not so badly as I have been at times. I've fought very, very hard for 15 years to get and stay well ... but nothing I've done has stopped my decline into this horrible illness.
I can't really describe in brief words just how terrible severe ME actually is to live with - and I think it's from this that makes people feel so very hurt and angry when issues like this come up - especially when it seems someone is encouraging the belief that ME is in some way a psychological illness, and that a better attitude or more exercise would cure us.
I think it's probably very hard for people who don't have severe ME to really understand just how hard this illness batters our bodies and minds - my experience has certainly been that it's relentless. And yet the majority of the people I know with the severe illness are so positive and try so hard to fight it. Most of us have gone through goodness knows how many treatments and programs to try to get better, and found that none of them make any real difference.
I'm glad you're trying to hear where those who were upset are coming from. I think that's so important. I really hope that will show in your future posts.
Take care,
Susannah
Hi Evan, thank you for sharing a non M.E. perspective - it's always interesting to hear from you. And I think you have described the complexity of the issue really clearly.
ReplyDeleteHi Susannah, thank you for taking the time to share your thoughts. I agree it is very difficult for those of us who have not experienced severe M.E. to really imagine how awful it is. I have found my own experience really tough at times so I can only begin to imagine what you have been through.
I would just like to say that I have never said M.E. is a psychological illness or that a better attitude or exercise would cure it. I am very aware that these situations can get out of hand and all kinds of things get said and taken out of context.
It is true that I believe in the link between the mind and the body and I have always been very open about this. The Chrysalis Programme I am on is a holistic programme looking at the physical and the psychological and in no way proposes that M.E./CFS is a psychological illness.
I only ever talk about my own experiences and would never presume to tell someone else how to go about their own recovery. I am doing my best to understand others perspectives; I just hope that others will also offer me the same courtesy.
I wish you all the best Susannah and truly hope that one day your situation will improve for you.
Karen
:-)
ReplyDeleteI just wanted to step in here and respond to Amy, if Karen doesn't mind...
ReplyDeleteI do not EVER take issue with people who have not recovered. Of course I don't. And it would be ludicrous to suggest that I do. I am not recovered myself (much improved, but not completely symptom-free) and fatigue still has a really large hold over my life and the choices i make.
The problem I have is people presuming because *their* ME hasn't improved that ME is incurable. A friend told me recently their specialist said it was like a stroke. I.e. Some have it severely and do not get better. Some have it mildly and recover - and a whole spectrum in between.
That is what I take issue with, because when newly diagnosed people are going to go onto ME forums and they might read that it is incurale and nobody ever recovers from ME. And while that is SOMETIMES the case I really do not think it is ALWAYS the case, and I think we would do well to remember that.
BG
Thank you Kitty. Lots of big smiles right back at ya!
ReplyDeleteAnd thank you BG for taking the time to clarify your perspective.
Love and energy...x
Billy Gean,
ReplyDeleteI wasn't sure how best to respond to your last comment directed at me, but a friend just pointed out that you're now advertising your comment to me on twitter, so I feel kind of pressured into qualifying it. Please don't refer to a couple of blog comments as if they were a battle, rather than an attempt at reasonable discussion (which I know Karen would prefer on her blog, and I agree with her on that). To publicise something like this, when i am too ill to type myself and have had to ask for assistance, is just to put me on the spot unfairly.
All I was trying to say (and all I ever was saying to you personally) was that you should be aware that those kinds of tweets about the "ME is incurable brigade", can feed into all kinds of cruelty, stereotypes and prejudice, about people like me - someone who is bed bound; been ill for most of my life, and actually despite it all, I love life and retain hope and work bloody hard to keep as functional as I possibly can, despite the countless relapses along the way. No one who knows me would describe me as part of an illness brigade. Presumably -as someone with ME yourself, you don't really want to be encouraging such inaccurate and hurtful stereotypes. I know YOU don't take issue with those who have not recovered YOURSELF, but your comments could encourage and confirm the beliefs of people who DO think like that.
Obviously, we all have different experiences, but I haven't come across people over-generalising about whether one can improve or recover from ME or not. Maybe I'm lucky, but the friends I have who have ME are all either hopeful about improvement/recovery, or just incredibly positive and constructive in the way they live their lives -even if bed bound. I have spent many months in a hospital unit for severe neuro-immune ME. There was a girl there who was totally paralysed, tube fed, and in intractable pain, but was still hoping for recovery. We were all dependent on carers to wash, eat or move from bed. I made some good friends there, most of whom haven't got much better,despite the effort and determination of olympic athletes but are some of the most cheerful, generous, spirited people i know.
Of course, you may have come across other kinds of people. I agree with you that forums and support groups can be incredibly depressing, and could be a disaster for the newly diagnosed. The internet didn't exist when I was diagnosed, so I lived in a totally different landscape, where I had a diagnosis but didn't really know what that meant. There was nowhere to go for help,
I agree with your last sentence. The only other thing I have to say to you, is that, as I said above, please think about the consequences of what you write (especially if you have blog followers etc), If you know the hell of ME (especially severe ME, but any case of ME is pretty hellish), you will know what I'm talking about, and hopefully understand why your comments sometimes come across as misconceived and hurtful.
Every time that someone with ME recovers is a time to celebrate, and I am genuinely happy for you that your health is improving so much. It is unfortunately an event which happens sadly less often in the kind of group I just described. There are statistics to prove this. My paralysed, tube fed friend is still in hospital, 3 years later. So please understand why some of us are less likely to be convinced by stuff like the chrysalis programme, It doesn't begin to describe or express our experience of ME. And that doesn't mean I'm doing nothing to help myself, by the way.
Sorry this post is so long! My brain is scrambled.
Best wishes and good luck with your health
Amy
Hi Amy
ReplyDeleteI am so sorry that you felt you had to respond when I am sure it is the last thing you would want to be doing with your very precious energy.
Obviously, I can't speak on behalf of BG but I just want to say - once again - thank you for sharing your views in such an eloquent and non confrontational way.
It has always been very clear to me that my experience of M.E./ CFS is very different to someone who has severe M.E. - and your comments have really brought that home. You clearly have met some amazing people on your M.E. journey. I too know people who have severe M.E. who are amazing; who have grace and determination that is so incredibly inspiring. Unfortunately, there is a minority out there who are 'loud' and aggressive. (And being on the receiving end of their attacks is not very pleasant.)
I hope your brain unscrambles soon and I wish you all the best in your continued fight with M.E.
I am going to close comments on this post now. I think there has been a cross section of views represented and I really do want to go on that mini break!
Take care everyone...x