The Hummingbirds' Foundation for M.E.

Some comments and discussions in the Yahoo groups have been so wonderful and useful, that I feel like they would be enjoyed by other members of the M.E.community, so we have reposted some of them on the site (with permission).

Topics discussed so far include:

• Group comments on being told 'you look well' and on getting nasty comments related to M.E. (below)
• Group comments on the 'Lightning Process' scam and other related scams aimed at M.E. patients
• Group comments on the importance of avoiding overexertion in M.E. (below)
• Group comments on Oprah possibly doing a show on M.E. (below)

know everyone out there will have had to deal with this at some point. You know the one - you are sitting there feeling like utter crap, and  someone says to you in and extra chipy way, usually with a touch on the  leg "You're looking well!", What is your response?   I've had my inlaws do this to me a few times lately, and I'm always at  a loss for words. I don't want to be an ungracious grump and say  "Well I'm not!!" because I really know that they do mean well. But I really really hate it.   It's like the implication is there that you got better, and somehow  didn't notice it, so they had to tell you. Or that you're not as sick as you think you are.   I need a nice answer, that very politely tells them that the way I look has nothing to do with the way I feel.   Any ideas?   N  

  So sorry to hear this N:(

Someone on another group posted this quote to say to naysayers that you guys might like:

"My Disabling Chronic Illness Is More Real Than Your Imaginary Medical Expertise"

hahah:)   Jodi  

  Ha Ha, I really like that one Jodi!!

Might have to make it into a t-shirt <evil grin>.   My other favourite is 'This disease must do wonders for my appearance. Everyone keeps telling me how good I look!'

take care, N  

  Hi N,

I think we can all relate to and share in your frustrations here.

I think people say that for the following reasons:

a. they are being polite/trying to make polite conversation ie: throw away line

b. they think that by saying such, that this will cheer you up a little: ie: at least I am looking ok, even though I am so sick.

c. they hope to hear that their perception of your improved health will be met by a  confirmatory response from you - that you are feeling better, or picking up. It is there way  of trying to deal with the discomfort and vulnerability (due to the issues it brings up for  them) around you being ill. They want to hear your on the mend, so they can push, otherwise upsetting and negative feelings away - including their own sense of powerlessness - in not being able to help you.

Of course there will also be those individuals who's delivery of such a line, is intended to bring you down.

I take the approach that 99% of people who say that to me (when I look as pale as a sheet  and very obviously unwell or even when I do not look obviously unwell, but feel it) - do so  for reasons (a) to (c) above. I like to give people the benefit of the doubt.

So I simply smile and say thank you believing it to be an act of kindness and the conversation moves along, unless of course the line was designed to open up a conversation on how I really am in which case, my replies and detail I give, is directly dependent on how well / unwell I am.  It can be too hard to do this when you're unwell with ME, as you know.

Other times I will simply give them an honest answer and say:

"Thank you. It is kind of ironic really, but I find I always receive compliments on my appearance when I am really under the weather and feel really ill like I am today. You know, I can have gone without any sleep for many nights and be quite ill and I kid you not, people will tell me every time that I look fabulous. I find that really amusing. I don't quite know what to make of it"

It is a genuine statement of bemusement on my part and a scenario that I have found perplexing. When I offer this up, I do so, in a light hearted manner because it is my way of letting people know, that I am not feeling great and that I am genuinely curious as to why this occurs. I swear to you, this also used to happen to me before I got ME. So it is something that I noticed before I got ill and was / have been bemused by it, for some time.

This sort of a response I have found, also opens up sincere conversations.  However, I only offer this up when I genuinely feel light hearted and bemused. I won't trot it out as a standard response to everyone who asks, or every time I am asked. Only, if I am sincerely feeling light hearted about it, bemused and curious at the time.

Regarding the other 1% of persons, who tell me "I don't look ill" (ie: because I don't believe you are)....I ignore. I simply smile and nod and move away quickly or change the subject.I don't really care what they think and won't let them upset me and or give them one ounce of my limited energy. When you have dangerously limited reserves, you want to spend them wisely.

Of course it can be hard when these people are part of your immediate or extended family or people you see regularly.

I deal with this, by expecting such a response from these people. When they make a bee line for me and make such a statement - in addition to smiling and nodding, I "tune out". I have trained myself to do this. (Kind of like day dreaming). It involves you energetically disconnecting from them.  Kind of like, they are there, but your mind is literally elsewhere. You might like to be thinking about what your going to be cooking for tea, that cute dress you saw in a fashion magazine or something that makes you feel good, whilst smiling and nodding. And this produces pleasant thoughts and a genuine smile. However, people are energetic beings and they will sense your lack of connection with them and the conversation will die out quickly and they will move on.

So when they are in my presence, I might be there physically, but mentally and emotionally I am not.  I literally put my essence in a safe place when I see them coming.I see this as a literal act of self preservation. To me, it is not only preserving my energy - but as I see it, my life force, from these people.

I do this, not because I want to deal with them this way, but because - with this illness - it is the only way I can. It is the only effective way in being able to protect the little energy and vitality I have, that is otherwise lost (and making me sicker) by getting upset by such people. I am not adverse to confrontations, but  - it takes too much energy.

Alternatively, if you're feeling ballsy or simply feed up with such people, you might like this.It is not very polite, and I am not really suggesting you use it, but I offer it up to make you smile.

I read this somewhere once. It was suggested that when someone like that says something like:

"oh.... but you don't really look sick"

You reply:

"yes, .......but then again, you don't really look stupid either"

........and then simply, walk away.


That still makes me smile. So true !

At the end of the day, I think the best approach is simply one that feels honest and comfortable for you. It might be as simple as:

"Thank you. That is kind of you to say.....but what I wouldn't give, to feel as good as I look"

Hope that helps

M

  Thanks M,

I wouldn't normally worry too much about it, just say thanks and move on. However, because it's my inlaws, I kind of want to find a solution sooner rather than later.

I love that 'but you don't really look stupid either' always makes me giggle (it's a little bit evil, I know, but still funny)

So thanks for the tips, I'll keep them in mind for next time........

take care, N  

  Hi N,   I have no perfect anyswer, but my current favourite is 'Well at least that is something, isn't it?'

Thus implying that, I am very very ill and disabled and just grateful if at least one SMALL and unimportant thing such as my looks isn't doing quite so badly. What do you think of that?   You said: 'It's like the implication is there that you got better, and somehow  didn't notice it, so they had to tell you. Or that you're not as sick as you think you are.'
That is so well said, exactly right! It isn't nice...but then sometimes I wonder, rarely, if it is nice and they just want us to be well so
much, better, that they arent....kind of looking for any excuise to belive we are getting better as it wuld be such a weight off their mind.

I think this is rare though, mostly it is exactly what u said about it N! My opinion:)   Jodi  

  I like that one J,

Doesn't sound rude or ungrateful, but still conveys the right message.

Thanks, I'll have to remember that for next time.

take care, N  

  When I hear this (and I hate it, too!), I find myself responding with "I wish I felt CLOSE to as good as you say I look" ... Or something similar like "WOW  looks can be deceiving, can't they?"
Roseanne

Sure does!

Actually my doc said something similar, but to give her some credit, I probably am marginally better now.

The cool thing is my mum is starting to understand how annoying this is too. She has had people say to her that I look well, when she knows that I'm not (took her a while, but she got there). SHE even complained to ME about it the other day, lol.

So now if she is with me and someone says I'm looking well she says 'yes, but she's actually very sick'. OMG did my jaw hit the floor with that one. And yes, I know this is the THIRD time I've mentioned it, but I'm still impressed!

take care, N  

Depends upon the source how I react. There are "some people" who just want to believe that I could be "cured" if I "would just make the effort". They believe this because it relieves them, in their mind, from any moral obligation to care, offer assistance, offer kindness, or focus on anything in life beyond their own needs.

I try to not have anything to do with them, and don't really engage on any meaningful level with them if I can help it. Just tune out until they stop making noise LOL

Sometimes I am just too worn down by it all and will snap at them,though, and then I am angry with myself because it was a waste of energy.

But other people really do mean well, and they can't deal with the immensity or scariness or injustice or futility or having challenged all of their illusions about Life, Fairness, and the Medical and Social Systems.

Maybe they also want to help and don't know how.

With those people, the ones whose hearts and intentions I know are good, I just skip their words and address their feelings.

I just say something like "I know you really care and would like to help and that means a lot to me. Thank you."

Sometimes that is all that is needed.

Then I can go back to fantasising about throttling the others :)) (especially the "if you only would really TRY ..." ones !!!!)

Jo  

  I haven't had too many nasty comments (well, not ones that I've heard, anyway!) My worst problem is people who are absolutely convinced that they have a wonder treatment for ME. I've been advised to do the most bizarre things: one woman 'cured' herself by taking lots of cold baths, another felt better by eating a bar of dark chocolate every day, and the vitamins and supplements – well, I'd sink if I took everything I was advised to take! If I could afford it, that is. Strangely, everything for ME is very expensive and only works if you take it for at least six months.

People always mean well, and are genuinely trying to help. They can't believe that nothing will work, and keep on with a quest to 'solve' it. I try to look at it like this: they have to put up with all my symptoms and disabilities, so I really ought to put up with their optimism about finding a cure. But it's very hard some days!!   Kit
 

  I agree K, this drives me so crazy too!

I find it so offensive; the idea that i could be so so sick and not even bother to do an hours work of reseafch on the net about my disease! I find that really nasty and yeah, incredibly belittling and offensive...   Of course eferyone thinks M.E. can be easily cured, because so often diseases misdianosed as 'CFS' are very easily treated, or just resolve completely naturally. These people have no idea that M.E. is no more synonymous with mere tiredness than is MS or Parkinson's. Sigh. It's so silly, the idea that what works for tired people ill work juust the same for those of us with a severe neurological disease that is very similar to MS. Sigh.

BUT, over time, I think we have to try to take those comments that are well meant and that come from true kindness, in the way they are intended, at least to their faces! To try to smile and take what is said as an expression of kindness, while actually ignoring the silly and useless content! It is so rare sometimes that people are kindly disposed towward us, because ofthe enourmous propaganda machine about 'CFS' and mixing M.E. and "CFS'...it is bettrer to achlowledege this I think.

It is so hard though. You want to smack them really, don't you:)   Jodi  

  What you've been through seems like one of the cruelest aspects of ME - which I've experienced too, along with maybe most MEites - the shock of experiencing abuse from someone you thought was on your side, and then the heart-breaking re-arrangement of trust and love.

I've felt very betrayed when someone close to me was unwilling to acknowledge the physical reality of  my illness, and seemed to interpret my situation along Wesselyite lines as serving a psychological purpose.

Sometimes abuse seems to go beyond lack of understanding, and seems like deliberate cruelty.

It seems that some people are able to empathise with the suffering of others, whereas other people are not, and sickness or weakness triggers an aggresive impulse in them.  I've wondered if this is a crude biological reaction, as when pack animals shun a sick or injured member.  We might hope
that human beings could overcome this impulse, through imagination and humanity, but maybe some cannot.  It seems that some people feel threatened by the illness of others - they lash out, they try to discredit the sufferer, or harm them in some way.

Like Jodi, N and tyk, I also feel I now know who supports me, for which I'm so grateful.

Maybe it's important at Christmastime, traditional family get-together time, to be aware that not all family and friends are necessarily on our side regarding ME, and to protect ourselves from abuse where necessary.

Best wishes,

Lesley  

  Yes Lesley,

I've always described this as the 'kill the weak impulse'.

When I think of it I always think of how chickens will often attack a  weak or injured chook.

It means I can imagine these nasty people as a puffed up chook. Makes  them seem a little less threatening and a bit more ridiculous, lol.  And definitely alot less evolved than the rest of us!!

take care, N  

Puffed up chook, love it!!!!   Jodi
 

  That realisation that people just don't want to know, that they are  just too wrapped up in themselves to find the time to care really is a shocker isn't it?

But on the bright side, the people that do stick around, and take the time to care, are the fabulous type of people you want to have around you!
I guess if you are patient and persistent then people do tend to  understand more as time goes on (except the truely nasty one, and we just throw them in the rubbish bin with the crappy doctors!).   N
 

Lesley,

I really like that line "...the heart-breaking re-arrangment of trust and love." I think I shall copy that into a special notebook. That esncapsulates what this last year has been for me.... but beautifully. Almost sounds like the name of a book or a poem.

> It seems that some people are able to empathise with the suffering of

> others, whereas other people are not, and sickness or weakness

> triggers an aggresive impulse in them.  I've wondered if this is a

> crude biological reaction, as when pack animals shun a sick or injured

> member.  We might hope that human beings could overcome this impulse,

> through imagination and humanity, but maybe some cannot.  It seems

> that some people feel threatened by the illness of others - they lash

> out, they try to discredit the sufferer, or harm them in some way.

YES! - I have had discussions with REAL friends about this (thank God I had some of those!) who were able to give good perspective and feed-back on exactly this issue.

But I too came to some realisation that these people were actually threatened by the vulnerability and weakness, and their only way to cope with that was to foist all their discomfort back on me -  I was to blame, nothing to do with their own failings or fear.In my case, I was in a .... not sure best word - spiritual/religious  - group who had a very strong focus on community support work. Supposedly a hands-on, get your hands dirty type of school of thought. Emphasised that `Compassion' was only `Compassion' when it was active.... practised in the real world.

I was part of a small core of people who did a lot of the work (struggling pesonally all the way, but not knowing why, and others having little clue). But I was very committed, dedicated, gave all I could- energy-wise and financially(and obviously had no life in between). I looked up to the main elders. 

But when my body finally just went into complete collapse - well, they were shocked and concerned initially, but after a while, from various members of the group, I recieved strange comments and strange vibes and strange treatment. It was obvious that people thought I was shirking and milking the situation, or should be trying harder  and not `give in', or something.... (?) It took quite a number of very painful (physically and emotionally) and confused months to

realise I had to get out of there. Then the first 6 months of this year to really fell ok in myself about it all, though still processing it.

These people, of all others, could not show me respect and care. I wasn't even making demands of them! In fact, one day I made extra food in place of another who was not contributing as usual (I was even dragging myself to group meals! wiped out and in pain - in fact people who truly know anything about the illness and where I was at with it myself, know what I was doing was significant and probably too much),  I happened to ask  (in polite and friendly enough manner, I'll add) for a cuppa (while I was chopping) - something I rarely do, as I am the type more likely to make tea for others. I was then called a name - one implying I was some sort of precious, demanding, wuss - in a denigrating sort of tone.

That was actually a God-send as it verbalised finally what I was feeling from the group. Explaied what they thought and that the snubs and cold-shouldrs I was picking up were not my imagination (can do your bloody head in!!). (n.b. - I had had a number of other pretty suss comments etc, that implied unpleasant things about me, but this was such an outright name call that it just transformed my perspective).

I also realised how much they were neglecting and over-riding their own health issues. It started to seem that the person who could ignore their body and punish themselves the most was the most respectable and strong and noble. I was going back and froth from trying to follow their example, to HAVING to respect my limitations.

Anyway - after such a big ramble, my main point is that even THESE people seemed to need to attack and shun, rather than care for. Everything I thought WE ALL STOOD FOR was seemingly tossed aside like it was nothing! I was trying to live what I valued - to treat others with care, support, and respect... ESPECIALLY when they were weak, and I thought these people were leading me in that. I never expected anyone to be superhuman, but I didn't expect outright dis-respect, underestimation (of a very committed member), and nastiness. It seems as soon as I became `useless' to them they lost any respect for me (mind you there were still considerable things I was contributing, some of which seemed to go unregistered even though demanding for even healthy people!!).  

And for a long time, I was examining myself, and trying to take so much responsibility for it all on my own (read - thinking maybe they were right to judge me and that I should be doing more and trying harder and shouldn't be upset by their conduct).... HULLO! - HEAD-$#&@!!... GRRRRRRRRR! ( you see why Kali has been so important to me!)

Another line of yours I loved was  "We might hope that human beings could overcome this impulse, through imagination and humanity..." which, apart from being beautifully expressed,  I think sums up how I felt about this group - I mean OF ALL PEOPLE.... who had discussed so eloquently and inspiringly, over the course of years, issues of human imagination and capacity of the human heart to care....

> Like Jodi, N and tyk, I also feel I now know who supports me, for which I'm grateful

Another YES! - I am so different in how I relate to poeple even in the last year. And the qualities I value in friendship and relationships are now much clearer.

And I actually feel more settled in myself. I trust my own judgement more and I don't tend to put anyone on any sort of pedestal any more, among other things. I'm not allowing myself to be influenced by what other people think or want me to be doing, because now I KNOW that I'm the only one who can really work MY way through my life with this illness. So I think I've grown up in some good ways and learnt important lessons. I'm so glad I'm outta there, and enjoying my life much more, so really it was a blessing for me in a number of ways.

too much from me!

Tyk 

ps- It is very important that I add that I do not think these people are all bad or `evil' in any way. I had some very enjoyable, positively challenging, and productive experiences with them over the years. I learned many valuable things from them and with them. And at the end of it all, despite the hurt and disappointment, despite the feelings of betrayal and disrespect I came up against when I was more sick, I still have an overall sense of deep and genuine gratitude for the many positive things I gained from my time with that group. What I’ve written above relates to a certain aspect of friendship that I came to realise was seriously lacking in that environment, and to my detriment.

Hi Tyk,

I try to see these things as a lesson too. It's a good way of looking at it. We have all had to learn that lesson of trusting our own judgement, one way or another haven't we. And had to re-define what a true friend is.

I like the concept of old souls and young souls. If a person is particularly mean spirited and ignorant, I just think to myself that they are a young soul, and still have alot of learning to do. That way I don't end up hating them, and can let it go more easily (ofcourse it still bugs the hell out of me, lol).

It usually is ignorance in one form or another that make people behave in a nasty manner.

take care, N

A new member joined and talked about how their job/study was making them progressively more ill, and that they thought it very likely the had M.E., but they weren't sure as they couldn't get access to tests and so far the only diagnosis they could get was Fibromyalgia but that this hardly covered the symptoms being experienced. Responses included the following:

The attitude of your co-workers & boss are also all too typical. Do not exercise if it makes you feel worse! That is a very important thing, a big cause of relapse.

Aylwin

I hope you'll find some support here and maybe at least work out in your own mind what your proper diagnosis should be! FM just doesn’t cut it! Sigh.... ((((((((((hugs)))))))))))

Jodi

Hi _______, I cant help but worry...it seems u are in a similar situation as I was in with ME before I had the big big crash that almost 10 yaers later I am still to recover from even 20%.....

I know its so hard when u dont have a good Dr, and very hard tio stop working or stydying when u dont have ...a DRs permission and so on to do so, esp when explaining it to family etc. but I would hate so much for you too to have the worst case scenario happen; you collapse like I did and ot only cant work or study for a decade or more, but actually need a carer just to live...and are in agony even worse than now.:(

Don't wnat to lecture you...but if it is ME you have, a huge scary crash will be in your future if you dont cut back severely...or really, to within whatever your individual limits are. I know it sucks being told this, no easy or good options...but overexertion is serious and really having your life ruined by that, just dont wnat that for you...as there is good chance isnt too late for you, yet.

Many of us wd give anything to have this chance agaisn and do things differnetly (if only we knew then what we know now!), don't want u to be one of us!

Don't mean to sound so scary......Hope you can find a better Dr maybe...

(((((((((((big hugs)))))))))

Jodi 

As Aylwin and Jodi have already said, it does sound as though the diagnosis of FM doesn't account for all the symptoms you're experiencing. Whether or not you can get an accurate diagnosis from your doctor, I hope it becomes clear to you what you're suffering from.

From your experience of your symptoms being less severe in the summer and worsening in September, it seems clear that your illness is made worse by over-exertion (which is true of ME). It sounds as though your studies plus the work at the ____ shop count as over-exertion for you - is there any way you could cut down? Would you qualify for benefits, so you could survive financially without working at the card shop?

It sounds as though you are very ill, whether or not the NHS can diagnose your illness. I would think that either part-time study or work in the card shop would be a huge challenge for an ill person. Doing both might be just too much.

If your illness is ME, the main thing you can do to help yourself is not push beyond your limits. I seriously damaged my health by pushing myself to continue at work after I became ill. I bitterly regret that now. I wish I had had access to Jodi's Hummingbird website at that time, which gives the all-important message that we must not push beyond our limits.

Best wishes and welcome to the group!

Lesley

I just wanted to repeat what J and Aylwin have already said. I did the same thing too (pushing through, and over-exerting), and I regret every moment of it. If you are still within the first few years, and it IS really ME, please slow down the pace of your life - you still have a chance of a meaningful recovery if you're very careful. I wish I could go back and do it all over, but since I can't, I wanted to tell you that you can avoid the mistake we've made.

I am now totally disabled, and during my "healthy times", I am doing good to leave the house for a couple hours 2 times a week (and there are a LOT of ME patients mch worse off than me!). I also go through periods when I deal with a worsening of my symptoms (like now) and these periods are especially difficult to deal with (bed bound, house bound, etc for extended periods). I just don't want to see you have to deal with the same kind of limitations long term.

I also don't want to sound all "doom and gloom", and I know this isn't what you want to hear, especially at your age. It's just something to seriously consider, especially with several ME "old-timers" saying the same thing. Please take really good care of yourself, and don't get into the mindset of "needing" to push yourself because of things you want to do in the future. When you have ME, it's important to NOT push yourself, so you'll still be able to do those things in the future! You deserve to take really, really good care of yourself, especially right now, in the beginning.

(((((((((( hugs ))))))))))))

Sarah

I agree with Jodi 100%.

My worst acceleration in symptoms was when I was trying to work and go to university at the same time.

I really wish I had listened to my body and stopped earlier (although I know this is really hard to do). I might have been able to go back and work part-time or something. As it is, I'm pretty sure the damage is permanent now. I don't think I will ever be able to work again.

On the other hand I am so glad the I did not keep going. I'm sure that I would be alot worse (scary thought!) if I had.

I have to admit that my symptoms have not eased all that much since I stopped working. But my mental state is alot better. It is just soul destroying to keep working when you have to struggle every second of every day.

Good luck and take care, N

All of us here have been through the doctor crap, all of us here have been through the terrible dilemmas of work & school & trying to keep up with the life we had & chose before

... but I have to reiterate what Jodi said in another email...if it is ME & you continue to overdo, you may well end upsooooooo much worse than you are now. It happened to Jodi, it happened to me, this determination that we are suffused with in our culture of soldiering through & mind over matter & good people get well...& then we do "fight the good fight"...& with this desease the price is very, very high & can be permanent. Hate to be a harbinger of doom, I know it is hard to imagine being more ill, but you do have an opportunity here to avoid our fate. Hard choices I know. TC,

Aylwin xox

> The difficulty with slowing down is that I still don't actually know what's wrong with me so I can't fully justify it to myself that I'd be doing the right thing.

I have a couple of questions for you based on that statement.  I ask them with love and concern, NOT to be argumentative.  I just want you to keep thinking about this.  I know it means a major life change, we all know that because we've all been there.

If *you* don't believe you deserve to slow down, or don't believe you're truly ill with something, how do you expect anyone else to believe that?  How can you expect your workmates or schoolmates (or friends or family) to truly "get" that you can't do what you used to do if *you* yourself don't "get" that? 

Does it really matter *what's* wrong with you?  Would cancer, for example, be a "legitimate" reason to slow down, while something else wouldn't be "legitimate"?  Do you first need to be validated by a doctor or a test to realize that something is wrong with you?  What if no doctor ever finds what is wrong, will that mean you'll automatically feel better?  How long will you be willing to push until you finally give your body the rest it needs?  How bad will you have to feel before you'll ease up on your schedule - will you have to wait until you're bedridden, and then you will feel you can "legitimately" take a break?

Would you be willing to spend the next 6 months, or 1 year, really resting, to then be able to go back and resume your normal, pre-illness life?  Or would you rather continue pushing until your life is even more limited than it currently is, and then have those limitations be permanent, or worse yet, progressively get worse?

As I said before, I do NOT want this to sound argumentative, or judgmental, and I certainly don't expect you to post your answers to these very personal questions.  These are just some questions I hope you will consider, and just allow your own thoughts to kind of congeal on these issues.  Just take some time to reflect on them by yourself. 

Just think about it, and realize, that taking a break right now, could potentially get you back to healthy for a long time to come. 

((((((((( hugs )))))))))))

~Sarah

And I echo what Sarah said...we veterans of often no-diagnosis (or like me, once properly diagnosed but since, that has been ignored & ridiculed by docs who have been brainwashed by the CFS/Somarisation model.) have made all these mistakes & are paying for them for the rest of our lives. Modern society forgets that one of the most essential treatments for illness in general is REST. I was a single parent when I got ill, of two toddlers, so I didn't have much choice. Now I have no life left but survival with dubious assistance. Do you know the average age of death of PWME is 25 years shortened from normal. This is your LIFE. We all utterly understand how impossible it seems to find a way to just stop your present life & dreams, only to put on hold for awhile, and of course there is the matter of finances. But if you think things are hard now, you cannot imagine the hardship to come if you do not try to find a way. I do realise that you may not have ME (though it sounds like it to me, not a doc but with 23 years of this under my belt) & must continue to push for a diagnosis, but meanwhile it is the rest of your life we are talking about here.

The only dire comparison I can come up with would be, if your partner had AIDS, would you not wear a condom? In a way it's worse because people with AIDS get excellent medical treatment & all kinds of support - most of us with ME don't. Sorry to be harsh but we truly want you to have the chance we never did - to get WELL again.

Blessings, Aylwin xox

> Wow, that is so so profound to me...I wish I had read this early on in my
> own disease, thanks for writing that Sarah.... Jodi

I wish I had had this kind of perspective early on my disease too! My thinking has changed a LOT over the years (when my brain is working), that's one other thing I can be thankful for - a "perk". lol  =)

Sarah

Totally understand where you're coming from.  To quit working there would still need to be money coming in from somewhere, and to get any kind of incapacity/disability benefits is difficult (near impossible) without a supportive treating doctor.  Just shows how easy it is for MEits to slip through the cracks, and then just get sicker and sicker.  The system isn't set up for us, and I think that's one reason this group is so important - try to change the system a bit and spread the word.

I also remember the time when I was first having symptoms, I was just a few years younger than you are, and it was a very hard time.  To be quite honest, it's still hard to admit I'm not "normal".  (Well, I don't know that I've ever been "normal", but I mean normal as in healthy.)  People still ask me "so what do you do?" or "how are you?" and those are questions that I still haven't totally mastered all these years later!  Society seems to think of illness (especially "invisible", chronic, disabling illness) as a badge of shame - but it sure isn't.  Nobody here did anything to deserve this illness, and we'd all get rid of it if we could.

Your symptoms do sound a lot like ME, and I would just give anything for you to be able to stop (or seriously slow down) your life for right now and REST. 

(((((((hugs))))))))

~Sarah

It's a medical fact that rest is crucial for ME, especially in the early stages, and that over-exertion can permanently damage the health of sufferers.

This simple medical fact raises so many complicated psychological, sociological and practical problems.

Ilana, you put in a nutshell what so many MEites struggle with when you said:

'The difficulty with slowing down is that I still don't actually know what's wrong with me so I can't fully justify it to myself that I'd be doing the right thing.'

The terrible situation of many/most MEites is that doctors don't endorse the fact that they are ill - doctors may even deny it - so we have to rely on our own judgement.  That's hard.

It can be hard to perceive what our bodies are telling us, when we might be used to 'pushing through,' 'rising above,' applying positive thinking and putting mind above matter, etc.

It can be hard to believe what our bodies are telling us, i.e. that something is seriously wrong and rest is crucial, when authority figures like doctors tell us it's not so.

Even then, it can be hard to have the confidence in our own reality enough to act on it, when the rest of the world tells us that would be lazy and self-indulgent.

I thought Sarah's post # 8474 was so well-written.  The questions Sarah asked are fundamental - this illness does raise basic questions about self-perception, and whether we seek validation from the outside world, or can give ourselves the permission we need to do what's necessary for our health.

But then, as Ilana pointed out in post # 8498, there is also the practical reality.  You're right, Ilana: 'The whole thing is just a big mess and I'd be willing to bet my life on saying that we aren't the only ones in Britain in this situation, the system is fucked up.'  Yes, the system is fucked up - 'Welfare Reform' has made it harder & harder for ill people to get the benefits they are in theory entitled to.  You and your partner are caught in a terrible situation.  It must seem as though your survival depends on your continuing to work, even if it harms you.

There are no easy answers.  The experience of Sarah, Aylwin, Jodi, Gail, myself & so many others is that we didn't rest when we needed to, with the result that we became seriously ill long-term. 

In practical terms, what you need is a sick note from your doctor.  If you were adamant that you cannot work, would your doctor back you up?  

I know you've been through the medical/psychological merry-go-round already, but perhaps your willingness to try working gave a misleading impression that it was a possibility for you.  As Sarah suggested, the first step is certainty in your own mind that you are seriously ill.  If you described to your doctor how you tried working but kept collapsing (or whatever happened), making it clear that working is impossible for you and makes your illness worse, would the doctor give you the necessary sick note so you can get benefits?

I urge you to try!

Best wishes for dealing with a very difficult situation,

Lesley

Further comments, after a post about trying to stick to 80% of activisties within your limits

I feel Jodi's proposal is very important, and central to ME management - to do only 80% of what's within her limits, and to be very conscious and deliberate about this.

I'm afraid I can't join in this project at the moment, but I think it would be hugely helpful for anyone whose circumstances allow them to do this.  As well of the benefits of sticking to 80% and avoiding overexertion at all times, it's a great opportunity to do it with other so you can compare notes.

From my experience I can at least say how important I think this is, and warn what happens when you exceed your limits repeatedly - health collapses, everything goes to pot, everything becomes so much worse.

I haven't been posting here recently because things have been too difficult - health has gone downhill with sleep problems etc, all made much worse by life-maintenance challenges.  My situation forces me to go beyond my limits again and again, and I know it makes my health so much worse.

I feel that this one important thing - staying well within your limits - is the crucial thing for ME. Supplements etc are helpful, but awareness of your limits and REST are the foundation of any plan of treatment & self-care.

If you can't, you can't.  Sympathy & fellow-feeling to _____ and to any MEite with children or whose situation means they can't rest and stay within their limits. But for those people who are in situations that allow them to rest as needed - I guess this mean people who have carers who can take responsibility for what needs to be done - I encourage you, urge you, implore you to take up Jodi's invitation, and join the '80% club'  with her, comparing notes and sharing hugs.

Lesley

I was wondering....does the Oprah show get to everyone or is it just here in the U.S.?

Because if we could get Oprah to agree to discuss ME on her show, what a WONDERFUL way to get the word out. She has been responsible for bringing attention to quite a few 'little known' subjects.

 I could just see Jodi being interviewed via satellite...and perhaps you,Maureen.

 And then Dr. John and ...well, I could go on.

 Perhaps if we sent her a book on the subject...but which ONE? It would have to be one to catch her eye.....

 Dr. Hydes "Complexities of Diagnosis"?

 Any feelings about this idea?

 R