I must thank Rachel for designing the logo in the sidebar and for the suggestion that people with M.E. who blog should write a specific post about the condition.
Go over to Rachels to see what she has written and also to Signs who has a special anniversary
Recently another ME magazine plopped through the door . I picked it up and leafed through the articles. I find, increasingly, that, where, once I found these periodicals enlightening, informing, confirming I now find them uninteresting, infuriating or irrelevant.
Why the change?
Well most of these mags are delivered because they come as part of the package when you join the various organisations that purport to support people with ME --- and they do support them and they have been and can be useful.
They’ve helped me understand more about my condition and helped me come to terms with how I am. They’ve helped me connect with other sufferers and made me feel I am not alone but part of some tenuous community.
The only thing is:
I don’t want to be part of a community or club of people with ME.
I want to be ‘me’ not ‘M.E.’
…and there’s the rub because it seems I cannot have one without the other and that plop on the doormat heralds a dilemma.
Shall I pick up the latest mag, which reminds me (as if I needed reminding!) that I have a chronic illness or should I shun that periodical and pretend it’s nothing to do with me?
One of the hardest things about having a chronic illness that hinders everyday activity and thought is trying to maintain a sense of self outside the label of the condition. In some ways having a virtually invisible malady is helpful in this regard for I am not party to the pat on the head for being a brave little soldier or pitied because it is obvious I cannot see/hear/talk or whatever it is. I don’t have the external battle with people I meet to declare myself as ‘me’ as loudly as possible before they notice any signs of impairment or disability. On the other hand people make assumptions; they assume that the seemingly well person before them is well and have no knowing of the difficulties I experience.
Worse still I sometimes look at myself in the mirror (as seldom as possible) and my reflection tricks my own self. Subconsciously that reflection that’s standing there says back to me:
‘Well go on then get on with it; get on with life. You look OK. Stop fooling yourself. That was a good day yesterday. I bet you could go back to work part time. I bet you could make more art. I bet you could travel further, go out more, get to the dentist, drive further, do a College course if you just tried harder….’
and there’s the other rub…
the ‘TRY HARDER’ voice,
the voice that hangs round with its chums called ‘SHOULD’ and ‘OUGHT’
…. and that’s why those magazines can be so unsettling because every month or so another one plops on that doormat and inside are all the articles about people who have:
tried harder,
found faith,
tried Vit C,
Vit D,
magnesium,
calcium,
ENADHA,
the Lightening Process,
the Perrin technique,
the Gupta Treatment,
CBT,
EFT,
Reiki,
bathing in goats urine and drinking their own (joke!)
and they all miraculously got better:
better than me, tried harder than me
Obviously.
Over the past 8 years I’ve tried endless pills, potions, treatments. Like many, many people with ME I have spent a lot of money on treatments that might help in a desperate fight to get better and all this to try and regain some normality but also to be seen to be trying harder and doing my best. I cannot give up because I owe it to myself and those around me to try to get better but sometimes the stress and pressure of trying only exacerbates the lethargy of the illness itself and I don’t want to try.
What I really want is to be left alone
--- to leave myself alone ---
to try and sort out a way to develop a new productive life that reflects who I am and my capabilities as they are now.
Given that they are a limited version of my old capabilities this means that in the scheme of things my efforts are fairly paltry in a world where we are encouraged to achieve, self-help, don’t stop, progress.
All I can hope for realistically is to come to a day when I can look in the mirror and not see a body that says
‘Stop kidding, try harder’ but says ‘Look deeper, just be.’
13 comments:
Oh yes - a definate ring of familiarity for me!
I found the analogy (I think in Katrina Berne's book?) with cats very useful for these times although I scoff at that too when they Try Harder is at it's loudest.
It's the idea that cats are loved for being cats. They don't have to do a job, or meet a purpose, or tick certain boxes. They lie around most of the day and sleep and eat and do cat things. But their value is never any the less for not DOING anything useful. Their value is intrinsic to their being.
The message to try harder comes (most often) from OUT THERE or at least starts there. Some societies (apparently) revere their elderly and infirm. Not ours it seems. Not for the most part anyway.
So every now and again I remind myself that without trying at all I know I have value - I just have to look at the cat flopped on his side snoring to affirm that.
Thanks for posting today :o)
Exactly...we're all going to MEet ourselves coming backwards someday, so keep the faith in YOU, not ME... :)
Well thank you Anonymous. Think you've been here before but in a different guise ;-) I shall endeavour to keep my faith.
Yes Rachel I know at you mean about animals seeming happy in and about themselves. For me I only have to look at my dear old whippet (who lies about like a cat at every opportunity) to know what it is to feel real composure.
Yes, yes, yes! Beautifully expressed, Cusp, again.
You know, there are still people - oh yes - who ask me whether I've tried taking Evening Primrose Oil. To cure M.E., I mean. I think I'll talk about the Goat's urine cure next time - in gloriously explicit detail.
Great post Cusp. Thanks for sharing this. There is such great pressure in society to "try harder."
Why I ask myself? It reminds me of the saying "do your best" what exactly is our est. Just reeks of must try harder.
I love your phrase
Look deeper, just be.
{{{{Cusp}}}}
Hugs Cusp. xxx.
Thank you Signs. You know your appreciation of my writing means a lot.
Kahless --tell me about it. I hate the pressure to try harder, be better, keep going. That's partly what got me into this mess.
Ah, Anna How luv*rly to s** u h*r*
Luv*rly warm hug ;-)
I hear you loud and clear! My partner is suffering pretty badly from CFS at the moment. She has been struggling with all of those some issues.
We had to have to laugh when her sister-in-law rang yesterday and asked if she wanted to go swimming!!!!! - 'Sure - carry me to the car and attach some floaties!'
Try harder is bloody horrible!
Thanks for the great post.
Hi Mick. Good to see you here. Yep, people say the daftest things. Just after I became ill (7 years ago)and was bedbound and could hardly speak or eat I was asked if I wanted to give a 2 hour presentation !
After 16 years severely disabled with ME-CFS, I've experienced the years of trying harder, reading everything, hoping to recover. Six or seven years ago I gave that up. Now I just try to live the best life I can as I am.
Oh Cusp, those therapies that promise the miracle cure! And how WE are the ones who are made to feel like the failures when the snake oil fails to work its magic. Or like you say, we didn't try hard enough. Or our thinking was too 'negative'.
It's taken me all week to put aside my guilt at not posting and read what was actually posted! Just be...if only other people would allow that to happen. The 'try harder' comes from within but also from others who are constantly disappointed if you don't meet former standards. That proves hard to bear. I suppose putting aside what other people expect is part of just being.
You have taken much better words out of my mouth! It is just what I feel, but would never have been able to say so eloquently. I have grown to hate those mags and all the questions they bring.
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