So how does ME affect me?

Prior to last year I knew very little about ME.  Now I have considerable first hand experience and have also extensively explored the various possible explanations.

And May is ME Awareness month so I thought I'd tell my story.

Like most people, I'd heard of the term "Yuppie Flu" before I became ill.   "Burn out" often got mentioned at the same time.  Generally it was assumed that folk who got yuppie flu did so because they didn't take time to recover from day to day illnesses and so they burned out and became seriously ill.  However a more sinister suggestion also came to the fore... some folk suggested that these afflicted yuppies stayed ill because they "didn't want to get better"!!!  That never made sense to me at the time and it makes even less sense now.

So how does my experience weigh up?  Well, for me, this illness seems to have started with a series of 5 fairly severe viral infections that I got over the Summer, Autumn and Winter of 2011.  These were very frustrating as I seemed to recover between each, only to get the next virus doing the rounds.  I was also having a few gynaecological issues and so, on 1st March 2012, I went in to hospital for some investigations.  The literature cheerfully said "don't go back to work on the same day" and I booked two days off work!

I have not been able to work since.  

At first, the doctors decided that I'd taken a bad reaction to the general anaesthetic, then they were confused, and finally I was told I had "chronic fatigue".  But "fatigue" is such an inadequate word, because generally I do not feel "tired" which is what everybody always assumes....  The truth is, I can do very little physically because of the delayed effects.  It's as if exertion of any kind later makes me drunk (without the happy element) and flu-ish.

 Reading some of the latest research, it seems that the mitochondria in the cells stop being able to produce energy efficiently - and so reaction times, the ability to think straight, co-ordination, eye-focus, motor control and so on deteriorate.  The effects however are delayed, so at the time I'm doing things I look (and often feel) fairly normal.  Afterwards the only way to restore my functioning is to rest - although to be honest once I'm feeling like this, it's a bit like having 'flu, so resting is really all I can do.

  

The frustrating thing about this illness is that often the rest does not lead to a restoration of previous abilities.  So despite careful "pacing" (the technique of monitoring activities and rest) I have experienced a steady slide in my abilities since onset.  I now find I need to be creative in order to get out and about without too much exertion.  To that end I have now used both wheelchairs and mobility scooters to get where I want to go.  Believe me if I didn't have to use them I wouldn't!

The NHS has minimal treatment to offer.  Indeed my diagnosis came about through private consultations with  specialists rather than via the NHS.  All the same, I  have now attended the Chronic Fatigue Clinic at Belfast City Hospital twice.  (The last time was in August 2012 and my next appointment is at the end of this month, so it's not exactly ongoing support!).  However the consultant at the clinic was quite firm about one thing - he told me that every time I produce symptoms I do damage, and so I must keep to "Only 60% of what I can consistently do without producing symptoms".  

This is incredibly hard to achieve, and I rarely manage to avoid symptoms totally.  I like living my life too much - and quite frankly, some days I really do feel well enough to do much more than I should.  It's a tough lesson though, but I'm learning to pace myself so that I can hopefully keep what abilities I  still have ----- or better still leave my body enough energy to produce some healing!

The Internet has some amazing resources, and I have found some fantastic support groups online.  Sadly the NHS does not offer ME sufferers the same support as those suffering from other more readily recognised illnesses.  Neither is there much funding available for research into ME (and most of that seems to go to the psychiatric lobby to research "chronic fatigue" which may not even be the same thing as ME). This is tragic because 25% of ME sufferers are housebound or bed-bound, indeed some are unable to do more than lie still in a darkened room.

Luckily there are some excellent ME charities that are raising their own funds and doing fantastic work creating greater awareness of this illness in the community.  The charity I support is INVEST IN ME.  This small patient led charity has raised an amazing £92 000 to date.

http://www.investinme.org/

My two youngest daughters are today running a leg of the Belfast marathon with their school Down High and I am delighted to include a link here (once again) to their Just Giving  fund raising page.

http://www.justgiving.com/downhighrelay

And to bring the story full circle and back to the topic of this blog - sewing: it is because sewing can be enjoyed without being too physically active, that I took it all up again.  And because I started sewing more, I found the world of sewing bloggers, and so got I tempted to start blogging myself.

So without ME I wouldn't have started blogging at all!

PS I am happy for a link to this blog post to be shared, but would prefer that what I have written is viewed as a whole piece and not quoted out of context without my permission.  Thank you.  xx

Edited 20th June 2013 to include this link to a great article about the history and naming of ME:
The Importance of Names