Lately I've noticed there's a growing trend amongst the M.E. Community: those who have had the illness for a long time are being called 'veterans'. It's a term I hate.
I know that in terms of dictionary definition 'veteran' means '....a person who has had long service or experience in a particular occupation or field' but in my mind I associate the word with people who have made a great contribution or been brave or done something marvellous...like soldiers in battle. They have something to celebrate.
As someone who was diagnosed 10 years ago and has probably had M.E. for 35 years I could be, have been, referred to as a veteran and yet I don't feel I have anything to celebrate; nor do I feel courageous, valiant or as if I have made any particular contribution in terms of M.E. It's just as it is...I'm me, I have M.E., I've had it a bloody long time and I've tried to make the best of what I have when I can...and everyone else's life, M.E. or not, is the same: we all have our ups and downs, all have our cards dealt and have to deal with that hand.
I'm beginning to think that there must be something in the air because there have been other bloggers posting about having the condition for a long time. Nasim has had M.E./Cocksackie since 1984 and wrote this piece last week. It rings more bells with me than anybody else's writing about long term M.E. because she speaks about the fact that how you feel , physically, becomes the 'default' -- it's just how it is and once you reach a certain stage or level of activity there's little else to do but just get on with things as best you can.
Rachel has also written an interesting piece today about her 4 year M.E. anniversary and the challenge that sets because she was told at diagnosis that most people with M.E. get better after 4 years or remain unwell. Of course, in the meantime, this supposition has been discredited but it still set a precedent that is difficult to ignore.
My (edited) response was this:
...Oh its all so familiar and you put it very well. I reckon I’ve probably had M.E. for 35 years now … and I have managed a life in the periods where ‘it’ was at a point where I could do stuff (with rests) and all the ducking and diving; got married, did a degree, developed a career, had children…all that whilst never really being well in the same sense as other people…just well enough, active enough to manage those things if I was careful, very careful.
I was diagnosed 10 years ago and really feel like I’ve tried everything that I feel is appropriate for me. There are those who would encourage me to still keep trying other stuff, other medication, other treatments but to be honest I’m sick of it all and none of it works very well so as long as I can get by I feel I have to be happy with my lot and grateful its not worse or like it was in relapse two years ago.
Maybe 4 or 5 years ago I remember going to my GP and saying that I seemed to have improved from initial diagnosis (that was an understatement…being bedridden, unable to see or hear or speak properly was hell) and yet I had reached a plateau and what could he suggest to push me forward…and the answer was ‘nothing’ and ‘I don't know’.
I was furious at the time but I guess he was just being honest. Sometimes things are just as they are and we have to try to accept and encourage those around us to accept too....'
and that's how I feel...that, despite all the razzmatazz about XMRV and anti-virals, despite all the hoo-hah about recognition of the illness, despite all the Cheneys, Teitelbaums, Protocols, Myhill, Lightning Process, Reverse Therapy, WPI...despite all that stuff I still have to go on living and I still have to get up in the morning, be grateful that I can (nowadays) , make sure the children are fed, warm, the dog walked and medicated (he's been very poorly), the house clean, the cupboards stocked, the clothes washed, the admin. done, the appointments made and kept....and....and....and.
But what would make a HUGE difference to me is if M.E. was recognised as a tough thing to live with whilst you are trying to live a life. Everyone talks about the symptoms but few people seem to talk about the 'living with'. My life would be easier if people recognised that difficulty and if I could live in a country where I/We were supported and assisted rather than sniped at and undermined by a Government that seems hell bent on making every vulnerable, or ill or disabled person's life increasingly difficult and precarious............
I don't want medals. I don't want a special title. I want recognition of the everyday difficulties of keeping my head above water and some recognition of the fact of how people with an unrecognised, unvalidated illness spend their lives ducking and diving, striving and trying and missing out on opportunities because they have to spend so much energy and time kind of 'going along with the lie' until they can't do it anymore and fall over into true chronic illness
I know that in terms of dictionary definition 'veteran' means '....a person who has had long service or experience in a particular occupation or field' but in my mind I associate the word with people who have made a great contribution or been brave or done something marvellous...like soldiers in battle. They have something to celebrate.
As someone who was diagnosed 10 years ago and has probably had M.E. for 35 years I could be, have been, referred to as a veteran and yet I don't feel I have anything to celebrate; nor do I feel courageous, valiant or as if I have made any particular contribution in terms of M.E. It's just as it is...I'm me, I have M.E., I've had it a bloody long time and I've tried to make the best of what I have when I can...and everyone else's life, M.E. or not, is the same: we all have our ups and downs, all have our cards dealt and have to deal with that hand.
I'm beginning to think that there must be something in the air because there have been other bloggers posting about having the condition for a long time. Nasim has had M.E./Cocksackie since 1984 and wrote this piece last week. It rings more bells with me than anybody else's writing about long term M.E. because she speaks about the fact that how you feel , physically, becomes the 'default' -- it's just how it is and once you reach a certain stage or level of activity there's little else to do but just get on with things as best you can.
Rachel has also written an interesting piece today about her 4 year M.E. anniversary and the challenge that sets because she was told at diagnosis that most people with M.E. get better after 4 years or remain unwell. Of course, in the meantime, this supposition has been discredited but it still set a precedent that is difficult to ignore.
My (edited) response was this:
...Oh its all so familiar and you put it very well. I reckon I’ve probably had M.E. for 35 years now … and I have managed a life in the periods where ‘it’ was at a point where I could do stuff (with rests) and all the ducking and diving; got married, did a degree, developed a career, had children…all that whilst never really being well in the same sense as other people…just well enough, active enough to manage those things if I was careful, very careful.
I was diagnosed 10 years ago and really feel like I’ve tried everything that I feel is appropriate for me. There are those who would encourage me to still keep trying other stuff, other medication, other treatments but to be honest I’m sick of it all and none of it works very well so as long as I can get by I feel I have to be happy with my lot and grateful its not worse or like it was in relapse two years ago.
Maybe 4 or 5 years ago I remember going to my GP and saying that I seemed to have improved from initial diagnosis (that was an understatement…being bedridden, unable to see or hear or speak properly was hell) and yet I had reached a plateau and what could he suggest to push me forward…and the answer was ‘nothing’ and ‘I don't know’.
I was furious at the time but I guess he was just being honest. Sometimes things are just as they are and we have to try to accept and encourage those around us to accept too....'
and that's how I feel...that, despite all the razzmatazz about XMRV and anti-virals, despite all the hoo-hah about recognition of the illness, despite all the Cheneys, Teitelbaums, Protocols, Myhill, Lightning Process, Reverse Therapy, WPI...despite all that stuff I still have to go on living and I still have to get up in the morning, be grateful that I can (nowadays) , make sure the children are fed, warm, the dog walked and medicated (he's been very poorly), the house clean, the cupboards stocked, the clothes washed, the admin. done, the appointments made and kept....and....and....and.
But what would make a HUGE difference to me is if M.E. was recognised as a tough thing to live with whilst you are trying to live a life. Everyone talks about the symptoms but few people seem to talk about the 'living with'. My life would be easier if people recognised that difficulty and if I could live in a country where I/We were supported and assisted rather than sniped at and undermined by a Government that seems hell bent on making every vulnerable, or ill or disabled person's life increasingly difficult and precarious............
I don't want medals. I don't want a special title. I want recognition of the everyday difficulties of keeping my head above water and some recognition of the fact of how people with an unrecognised, unvalidated illness spend their lives ducking and diving, striving and trying and missing out on opportunities because they have to spend so much energy and time kind of 'going along with the lie' until they can't do it anymore and fall over into true chronic illness
23 comments:
As a relative newbie I read this post with great sadness because although you are managing to live you are not thriving like a person should ... I guess I am still not ready to accept that as my future even though I know I must ....*sigh*
Maybe it's a matter of changing your mindset and expectation of life so that 'this' can still equal happiness?
Well I think it's different for everyone and depends on their situation and it depends partly upon your other responsibilities. The fewer other people one has to consider the esier it can be to integrate other more enjoyable and nurturing aspects. Dont lose heart...you've plenty of chances and opportunties I'm sure...certainly hope so because you have a lot to offer :O)
Veteran! Yikes! that's AWFUL...no thanks. Besides, I'm not CFS/ME, I have CFS/ME. Taking veteran status is way too defining.
But you are right-on when you talk about "the degree of difficulty" of living with the condition. I've seen it compared to MS, which I have to say initially surprised me, but I've thought about it and I have to say I think it's not far off. For some people its not so bad, but for others it's actually worse, and MS has a varied course too, but most people just think of the worst case scenario. I know that's not particularly cheering, but it has comforted me to be able to think that at least SOME people think that what I'm dealing with is as bad as MS, and nobody thinks thats a picnic.
As for Nasim's post, I actually think this is a good stage to be at. For me, its 20 yrs, that's it. Like you, I'm not getting in a flap about XMVR, or anything else, there's been too many possibilities that came to nothing, dashing my hopes and sending me spiralling into depression. No more. This is how it is. This is my life - such as it is. Sometimes there's bad days, some days are better, some are awful. I have to pace myself, eke out the energy and find happiness, where I can. And that's it!!
I've always been suspicious of war metaphors for illness. People are often described as 'battling' cancer and I'm sure it does feel like a battle but it seems to confer a cause onto sufferers, like they had any choice? The term 'surrender' is often used too but I think it's how you decide to surrender to the inevitable which marks people out. We don't have any choice but to live with our disease but we can decide how to orient ourselves to it. I like Renee's view - you can be resigned, or you can accept. Difficult, because to reach that point there is a gamut of emotional turmoil to run - anger, grief, frustration, self-blame, and the rest. And some people get dealt a better hand than others. Like Cusp says, it's different for everyone.
I like what you say Cusp about the razzamatazz. I was a bit concerned to see the word "genocide" used in relation to CFS. There is no evil persecutor here. It's much more complicated than that.
Your posts are always so thought provoking. Thanks.
Jo and Amanda Oh thank God it's not only me. I thought I was being a killjoy or a misery.. I think Renee is spot on...it's not being resigned...which implies a giving in...it's accepting...and for me accepting each day as it comes: in other words if something comes along to improve the situation then great and if not then...well I just have to get on with it.
You're right about the war/combat metaphors too: yes it's no good rolling over and waiting for the bullet but on the other hand I don't have an atomic bomb handy to lob at this 'bastard illness' as one other blogger I know calls M.E. So I just hav eto get on.
Susan Sontag wrote a very good book in the 80s
http://www.susansontag.com/SusanSontag/books/illnessAsMetaphor.shtml
where she explored the whole business of illness and metaphor..more in relation to AIDS at the time but also in relation to cancer. Wonder what she made of it all when she had cancer herself ?
Like you, Amanda, I've worked with and known people with MS and know that that condition also has degrees of disabilty --- quite apart from the aspect of remission and relapse and I can see the similarities with M.E. The difference is that MS is more in the public consciousness and more (if poorly) understood.
Having spent a life working with and surrounded by disabled people and now having a disabled child I can see how much other people's understanding of different disabilities affects the experience and life of the disabled person and in the case of M.E., unfortunately, we (as in PWME) live in a world where our condition is mired by a host of MISunderstanding and fairy stories, medical flim flam, egos and politics. But then...that's how it is for us and whilst we can try to change things and not 'roll over' in the meantime we just have to get on with it.
As I said to someone else, recently, in relation to raising a disabled child and having my own health problems...I'm told that God only sends you what you can cope with !...not sure that's right but that's what I'm told :O)
Well thank you VERY MUCH God!
Yep. Great post Cusp. Saying things I can't get out myself. Thanks.
In response to what Cusp said about God only sending you as much as you can handle -- I believe that. My 13-year old daughter came in my room the other day and said she had been thinking about it. She decided that the reason God gave me CFS was because He knew I was strong enough to handle it. I guess in some weird way, it's a compliment.
Another reminder that this isn't too much for me to handle: I read a blog where a young woman, mother of a 4-year old, unexpectedly lost her husband to a hunting accident (he fell off a scaffold or something). Reading that, I knew that THAT would be too much for me, THAT would be the trial I couldn't handle, and I was grateful that God has "only" given me CFS. My husband is amazing, and I can handle anything with his support behind me.
Yes we suffer. Life is suffering. But luckily, there's joy in there, too. And suffering makes those joys so much sweeter.
Thank you, old timer, for some much needed perspective. It is helpful for people like me (4 years) to continue to strive for that place of acceptance.
I want a medal! I want a gold watch, a cup with my name inscribed on it and dates (1986 and counting) and a title as long as my arm to let people know what a four-ex-ing hero I am. And I want a horn that makes walls fall down whenever it is blown (which is something I would do very often) to call attention to me and all of Us who are trying to live our lives with the bastard. Er -
But - srsly - I take your point/s. On the other hand, I've found myself using the term "battle fatigue" more times than I can count.
Well said Cusp! Recognition for everyday accomplishments that many take for granted is often all that is required. Hidden disabilities are a curse and a blessing, I still haven't figured out which.
It is ridiculous that some are using the term 'veterans', I personally think that there couldn't be a more inappropriate word chosen.
I don't really see the harm in people being described as veterans. At the start of your post you gave the definition of the word, which is someone with a long experience of something. It definitely isn't the same as a war veteran and i never made the connection you have.
I agree with Jo about the language used to describe dealing with an illness. I cringe when i hear about someone 'fighting' an illness. It makes me feel inadequate for accepting i'm ill, as if i'm not trying hard enough to get well.
By the way, it was a great post and i agree with what you said.
Rachel, Shelli, Signsie, Azirca and Anon
Thanks Rachel :O)
Shelli: Pleased if my ramblings brought some focus for you
Signsie: I'll see what I can do about a medal, though it might be a chocolate one
Azirca: Glad you agree that recognition of the everyday grind is as important as all the other stuff
Anon.: Go on, be brave...own up to some sort of identity :O) Seriously...yes I know that 'veteran' means someone with long service or exeprience but as I said in the post, the word makes me think of someone brave who has done something remarkable but thats just me: each to their own. As Signs says..she wants a medal and a horn and all the rest of it ...but then that's her (all over !) bless her heart. Good to see you here Anon...do feel free to return :O)
Hi cusp
only just found yuour post now... a good one, but hard to rea all the same. Thank god i hadn't heard of the term: vetetran..." I'd be one of them by now.
Another term I try to avoid is "sufferer". I focus on "living with" instead. I am not ME but it certainly has a BIG influence on my life. Suffering... sure, but hate that word, ME has given me lots too, but to be honest. I prefer to have gotten where I am WITHOUT the ME side of life.
Susam Sontag's book Well worth the read.
Back to the Vetran bit... when I was ill for about 2 years I read an articlein the paper about somebody who had been ill with ME for 5 years. I scared the living daylights out of me. Now more than 12 years on (after diagnosis) I am equally 'scared' that when I hear about people who have this for 35 years... And yet I kow that I will live one day at the time and get through it. A veteran I hope never to be called.
Hi Corina. Yes....really cannot deal with word 'veteran' or 'sufferer'...the latter makes me feel like I should be booking a coach trip to Lourdes.
I prefer 'living with' too because that's the basic reality for all of us.
Not sure M.E. has given me anything especially...well not anything psoitive..just ade life more difficult but there you are...each to their wown
I'm glad I have not had anyone call me a veteran. I would not like that term either.
And being a Veteran of the United States Air Force, I'd rather keep that 'veteran' title.
What a yucky name.
I can't believe so many of us have been processing and thinking about living with ME/CFs and whatnot.
I just wrote a post called, Changing the Dance with the Beast within Me. It was about how after living with ME/CFS for over 2 decades, I am not going to fight it any longer. I will learn to stay surrendered, to co-exist with it and let the cards fall where they may.
I have found the more I fight back, push, etc, the more ground I lose and the sicker I get.
Anyway, if you want to read it, this is the link to it.
http://www.4wallsandaview.com/mecfs/changing-the-dance-wthe-beast-within-me/
I enjoyed reading your post and learned something new. Veteran. Awful name.
Cusp ~
This is so eloquently written, so articulate. I appreciate your words very much. I learned something about the veteran status. Hadn't heard that one before.
I'm sorry you've been ill for so long, but I admire and respect your strength and courage.
I too wish the people that believe you have CFIDS could "get" just how much we suffer. I wish they understood that our symptoms are usually worse than AIDS or Cancer patients. I really do wish we could get that kind of needed understanding and sympathy, if not empathy, from them.
Even my own teens don't grasp what life is really like for me. It's not that they "should", it would just be nice if they "could." But there just is not enough information out there in the world yet for us.
Judy
Your post has reminded me, Cusp, of when I was in Massage Therapy school back in 1990 (when it was still being 'tested' as a valid therapeutic tool) and we learned about Fibromyalgia, also new on the scene as a diagnosis. At that time you had to have 13 of the symptons, I recall, to be diagnosed. But no one knew what to do with it. If it wasn't all 'in one's head,' what was it? I can only imagine how hard it has been for you all these years. It seems easier to accept and believe in the "bigger" diseases at the expense of the lesser known.
I wish I could wave a wand and make it all go away. The next best thing would be to wave a wand and make everyone else understand. In the meantime, just continue being who you are and telling your story. It's the only way some people will ever 'get' it...kinda like me being gay and living as one who has integrity, honesty and acceptance of myself. If it doesn't start with me, where else does it start in the educational process?
Cusp, You made me smile, you have written Coxsackie the rude way - perhaps an unconscious reference to TS0M, where I refer to it as Coxsuckie ;)
I had no idea we were being called veterans! The only thread I really visit is the MEA, so I am not in the know.
I think having being ill for many, many years is like anything else, really: it just gives you experience.
I do think that those who have been ill for shorter periods of time are more inclined to be 'stirred up' by research etc because they are nearer to what full health feels like, they can actually remember it and still hold out hope for recovery. When I think back to the clinical trials I took part in in eighties and early nineties, I was *sure* I could recover if I tried x, y, z. With experience I know this not to have been true - and also having now reached a balance, I am just grateful to be no longer severe - though have severe dips and have to constantly monitor what I do, it is a fine balance and I still feel I overdo it far too often, just in performing daily tasks/errands.
I would also be afraid to try any drug treatment unless proven beyond doubt to be efficacious, I have suffered too much from scary clinical trials in past.
So, yes, I just live as much as I can and there is really no point going on about it. This is not being brave or stoic, it's just being. Yes, I could be much more well, but I could also be much more ill. But I also do think personality plays a part in how we cope with the illness, the loss - how could it not?
It is of course a different scenario for those who have been severe for many years and not making any headway, that is heartbreaking and if I were still severe I would perhaps be more fired up and hanging onto every word of XMRV research.
What I am desperate for is for the illness to be respected as the neuroimmune illness it is, without all the tiresome baggage, and we can be treated as people who live with an illness, like those who live with any other chronic illness. No more no less. That's what still makes me so angry - the politics and corruption that surround our illness.
Dominique, Judy, Ginnie and Nasim Seems like we're all thiking along similar lines and as long timers we do have experience behind us. What seems to come across strongly is that in the beginning many of us were striving, struggling to return to our pre-illness condition but after such a long time it becomes clear that struggling like that, getting angry, frustrated, only uses up valuable energy which could be used for something more positive or enjoyable......I guess its about maturity and it takes a long long time.
NMJ....that spelling was my deliberate mistake: just waiting for someone to spot it. You are the winner of this post's competition and your prize is an A2 size poster of The Weasel and a set of darts. Congratulations ! :O)
I don't honestly think I used to get angry at being ill itself, more that I was felled & stunned & sad at the shock of it all, physically and emotionally... and with experience you just get used to it. The way ahead for me is a universally accepted definition for M.E and a foolproof diagnostic tool/biomarker. That's what makes me truly angry, the obfuscation, the denial, the politics and I definitely waste energy getting upset by all of that. But we have to fight or nothing will change! We need to do like the wonderful Egyptians and say, No more! But of course standing for hours in a square is not really an option.
Oh it must be so difficult, in many aspects. It's amazing to think that the psychological effect of not being recognized, if that alone were attended to, would make a difference. I so wish you could be free of the disease, and I appreciate your daily perseverance.
Yes, those metaphors are annoying. We here about people "fighting" their illness and when someone in the news dies of of whatever illness they are described has having "lost the battle". But those of us who "soldier on" are now "veterans". Oh dear.
I've been ill now for almost 22 years and although I've now reached the point where I can go to one 3 hour class per week (with a supportive partner and accepting that a lot of other things just won't get done at home), I'm a long way off being able to live independently let alone support myself financially.
My friend went back to work for 10 hours a week last year and now she's relapsed and signed off again, after really struggling to keep going, after lots of time off and complaints about her competency. When she was able to struggle in, she was absolutely exhausted and her brain just wouldn't engage. She was described by a colleague as being "like an 8 year old" when she couldn't comprehend the information in reports etc.
I find that the more you try to do, the more difficult it becomes to sustain it. After it became known in my local ME circles that I was 'on a course' the assumptions were amazing - that I had 'recovered' and that I was on some sort of high-flying full time degree level course! The truth is, I'm struggling to keep up with one 3-hour class per week and other areas of my life have fallen by the wayside.
To get to where I am now has been a very difficult and erratic journey and although I'm thankful I'm no longer bedbound, the struggle of the day-to-day grinds on and there are no easy answers or happy ever afters.
Wow! You have to do an awful lot in a day. I just don't know how you do it... I feel lucky that I don't have the responsibility of children.
Could you not get someone in to help even a couple of days a week??? Have you ever asked for help?
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