Tuesday, May 08, 2012

Living a Limp Along LIfe: M.E. Awareness Day 2012

After so many M.E. Awareness Days there seems nothing left to say, nothing to add…and yet when so little has really changed for people with M.E. it seems as if there’s everything left to say.

So…after living with M.E. for 40 years in November, where do I begin ?

What seems to have changed since 1972 when I first became unwell is that at that point my symptoms were seen as a curious virus that would pass and resolve itself given time. I wasn’t made to feel foolish or neurotic. I wasn’t blamed or made to feel guilty for being unwell and unable to return to school. My symptoms were not understood and my lack of energy, inability to concentrate and disastrous ‘A’ level results were seen as surprising.

As time went on, and my symptoms persisted and gradually changed I was seen as being someone who was imagining things: hypochondriac, anxious, making the most of an ‘opportunity’ to gain sympathy and attention. There was never any attempt to investigate any of the symptoms I presented and asked about. I was simply brushed aside and left to wonder what was the matter with me. I didn’t know what to do about any of it so I just kept trying to live a normal life: ducking and diving, covering my ‘inadequacies’ and ultimately my shame because after years of the insinuation that my apparent health problems were my own fault, I began to believe it.

Fast forward to eleven years ago when my relapse was so bad that I couldn’t get out of bed, couldn’t wash, see properly, hold a conversation, sleep or eat. I finally got a diagnosis…but no treatment except an anti-depressant: not because I was depressed my GP assured me, but because at a very low dose, the drug would help some of my symptoms.  There was no real understanding from my GP or work colleagues or friends. There was no real Internet support or groups apart from a few political groups which seemed cliquish and full of wrangling and unhappy one-upmanship. I felt very isolated but kind of expected that, in time, this huge relapse would resolve itself as the others had done: that at some point I would manage to return to a ‘limp along life’ where, by means of deception and guile I could fake wellness and achieve some of my goals. That has not happened. 

Since 2001 I have seen the internet change the whole landscape, in terms of peer-support, for PWME. The amount of sharing of knowledge, support and kindness is beyond anything I could have imagined in previous years. What has not really changed (at least for the better) is proper support and understanding from the medical profession or government. There is still no proper research into our condition where it is seen as a physical, neurological illness and there are still no official guidelines which encourage GPs and other ‘Specialists’ to see PWME as people who have integrity, knowledge of their condition and a desperate longing to be well. We are still prey to every charlatan, witch-doctor, chancer and egoist within and outside the allopathic medical profession.

The current economic and political climate makes everything more difficult for anyone who is unwell or disabled --- not just PWME --- and I see more and more people struggling to access appropriate levels of care. In the meantime, there is a huge push from government to find as many disabled and sick people fit for work as possible. The assessments by ATOS are a joke at best and a humiliating and cruel abuse at worst.

What those in government and medicine really do not seem to understand is that PWME are longing to be well, longing to return to a normal life, to work, bring up their children, go back to education, travel, create etc. etc. and that, in many, many cases they still do all those things whenever and however they can because they are so strong and brave and resilient.

However, with the lack of medical assistance and the pressure to return to work and keep up with people who are well, PWME are getting more ill and relapsing, living in debt and poverty…and not just financial poverty but a kind of poverty of the soul because of the lack of compassion and the constant need to fight their corner.

What would really help PWME ?

  • Proper medical research and the use of appropriate drugs and therapy
  • An understanding by healthy people that we long to DO things and EXPERIENCE a life beyond pacing and eking out a sparse existence and that, when we do have better days, we should not be made to feel guilty or hide our achievements for fear of someone pointing the finger and branding us as malingering and workshy.
  • An opportunity (if we are able) to make some return to meaningful work but within very careful boundaries where the precarious nature of our health is acknowledged, understood and respected so that we can contribute to society, pay our own way, have self-respect and find some enjoyment: having to live a life where we have to constantly justify our existence, complete forms, attend assessments, fight political battles, raise funds, raise awareness becomes a job in itself and leaves little energy for more enjoyable, fulfilling pursuits.

I feel that this will probably be the last time I post anything for M.E. Awareness Day. After living with M.E. for 40 years and having written this post I have nothing left to say. I just live in the hope that before I am too old, some research might lead to a drug or therapy that will really help ‘us’ and I might still have the opportunity to achieve my goals and ambitions.


kp said...

I had been feeling exactly as you describe, that there is nothing left to say. And yet you have said so much here Cusp...will be sharing this one. And dreaming of the day when we look back and shake our heads at how it used to be. XXOO

Creek said...

Thank you for your powerful words. Though I can certainly relate, I hope this won't be the last time you post for Awareness Day, even if only a brief note to remind people of what has changed and what should change. Please keep sending your wonderful voice out into the world, from out of the shadows.

(Now I've got Shadow of Your Smile running through my head.)

Lilan said...

Oh, I want to shake my head with Kiki. I will pray for the day. This post is excellent, Cusp, and few can speak of the illness as you can, after 40 years. I've posted and it's being reposted by those who do not know you but who care about PWME.

upnorth said...

You pretty much said it all here Cusp. And such perspective having been sick for so long. I'm so sorry, and yet I can relate so well to what you say here and it's only been 10 years for me. Thanks for posting this well written truthful piece.

Jamie Deckoff-Jones said...

Beautifully said, Cusp. Thank you for the words of wisdom. I certainly hope you are not finished writing and that we will hear your clear voice in the days to come.

Lee Lee said...

I was thinking about awareness day just before I read this post and I was thinking that the only thing I really have to be thankful for is that I got ill in a time when the internet already existed. I just couldnt imagine having to deal with this without the online support of my peers. Even if our governments have little to offer us still, at least we have plenty to offer each other!

Sue Jackson said...

Wow, Cusp, you have lived such a challenging life. I just hit my 10-year milestone - it's hard to imagine 40 years.

I know that the situation in the UK has deteriorated even further, with respect to getting proper medical treatment.

I feel a tremendous amount of optimism, though. The new burst of research spurred on by the XMRV studies (though that particular line of research didn't pan out) is focused on hard science, looking into real physiological causes and potential treatments. I think it is all so exciting!!

In the face of all this exciting research, even the UK doctors will eventually have to admit this is a bona fide immune disorder deserving of real treatments.

I admire your strength and courage, Cusp, in the way you face this illness every single day. I hope we will all have some reasons to celebrate by the next awareness day!


Live with CFS

addon said...

Great story Cusp, helping to get the word out there. Like you - what more can I say?

Take care

Tanya said...

Thank you for what you wrote. I've had M.E. for 7 years and reading other people's posts about M.E. Awareness Day has helped me to feel less alone in coping with this illness.

me/cfs warrior said...

You are truly a courageous, compassionate person. What a powerful post. It brought tears to my eyes. I agree with what someone else said that I hope you aren't finished with your writing. You have so much to say and share.

me/cfs warrior said...

To one of my favorite people. I've chosen you to receive the Liebster Award. No need to do anything if you're crashed or anything. I just wanted you to know how much I appreciate you and what you bring to our community.