Monday, 6 May 2013

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.


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.



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 to include this link to a great article about the history and naming of ME:
The Importance of Names

32 comments:

  1. Thank you for writing about your experiences with ME to date, Keela. I wish I had had access to the internet when I first became ill - there is some great advice and support to be had, as you have clearly found out. Hopefully access to this info will help you in coping with your ME. The correct guidance in the early stages of the illness should be of benefit to you - it'll certainly give you a better chance than relying on the NHS for advice.

    I hope your daughters get a wee bonus in their pocket money this week. Many thanks to both yourself and the girls for raising funds and awareness.

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    1. Thank you for your kind comment Sarah. Indeed the support of other sufferers via the Internet is so important. :-)

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  2. My best friend was diagnosed with ME a few years ago although we now believe she was misdiagnosed. But my point is, I watched her go through treatment on the NHS while she battled to complete her degree. The response from the NHS and her university seemed rather inadequate. I spoke to doctors I knew who told me they didn't believe it was a real condition - how is anyone supposed to be supported when that attitude is around? She relied heavily on the charities for information, support and advice. So thank you for raising awareness about it and to your daughters for being active fundraisers.

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    1. Thanks Claire... I think the tide is turning. I know some people have had to deal with "unbelieving doctors", luckily for me however the doctors I have seen have bee supportive - even if unable to offer any real treatment. The charities are doing great things however. ;-)

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  3. Very insightful post Sally..I would just add one thing..through conversation s with other sufferers idiscovered that resting BEFORE I knew I had to do something more energetic worked better than after. So if I know I have to do something I try and stay in bed for up to a day beforehand. ..thank goodness now three years later I do seem to be coming through it...I can work and luckily my work is not full on all the time. I hope you recover..it is possible!
    Megan

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    1. Thanks for the kind comment... I guess I should have mentioned pre-emptive rest also, but in truth most people understand this better than they comprehend the effects of exertion. I do agree it is important however as I often rest up for a few days before an event I really hope to attend. ;-) It does make a difference. Glad to hear you are seeing improvements in your condition... It gives hope to the rest of us!

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  4. Very nicely explained :)

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  5. I know only too well how you feel Sally as you know, having had Fibromyalgia for 16 years. It's hard to pace yourself when you are used to having been so active in the past ... like crawling on our hands and knees in caves !!!. I too find in my own case, like Megan, that resting up before a planned event helps. Best wishes to you all Sally and lots of love XXXXXXXXXXXX

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    1. Thank you Avril. I hadn't realised that you had been affected by Fibro for so long. Very frustrating these ailments.... Not sure I'd still be caving now even with full abilities, but those were good times eh! Chat soon.... xxx

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  6. Thank you for a lovely blog Sally. The amazing £92k you mentioned has been raised in just under two years, and thanks to the wonderful efforts of people like yourself and your daughters, we may well reach our initial fundraising target of £100k by the end of May, laying the foundation for a strategy of biomedical research to bring forward the prospect of medical treatment/s for myalgic encephalomyelitis :-)

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    1. Thank you Jo... fund raising seems to be going very well just now on a number of fronts for IiME. Indeed, it turns out that the teachers in school are doing a bun sale at lunch time tomorrow to raise some additional funds for IiME so I'm very hopeful that the eventual figure from Down High School will be into 4 figures. So delighted by the response from everyone! ;-)

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  7. I'm sorry to read that you have to deal with ME, you have written very honestly and clearly about it
    x Angela

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  8. It sounds awful. As a former chronic fatigue sufferer, I sympathise. I hope your condition improves with time. My fibro and chronic fatigue are almost gone but only after 10 years of retirement.

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    1. Glad to hear you are in a better place now.... it does seem to take its time to leave doesn't it!

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  9. Thanks for sharing this link with me, Sally. I learned a few new things about CFS/ME here on your blog. I've had it in my thoughts recently thanks to an old episode of Golden Girls that played last week about what was CFS at the time. I hope that research tells us soon how to treat and cure ME.

    Wishing you well,
    Laura

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    1. Thanks for your interest Laura. I must look out for that Golden Girls episode, there are so many oldies on youtube and places now. And yes real scientific research is what is needed now...

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  10. A topic close to my heart I was diagnosed about 20 years ago and have had periods of remission and been able to work. I relapsed about three years ago and haven't worked since. My love of knitting, crochet and blogging has kept me going and keeps my spirits raised. In away my condition although deeply frustrating and painful has made me appreciate the simple pleasures of life.
    Keep well Sue x

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    1. Thank you Sue for your lovely comment. I have found your lovely blog and am now following.. :) Keep well :-)

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  11. WOw. WHat a bird's eye view into a terrible illness made all the worse through others' ignorance. Thanks for your insight. If you are into literary (and feminist) works, there is a good book called the Rejected Body. It was a text in my disabilities studies course and the author's sharp insight changed my life. BTW, I agree sewing can be thought of as sedentary but when I wear my pedometer while sewing I find it can also be a lot of exercise too. Think about it: you are always getting up to press a hem or pick up pins.

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    1. Thank you Nothy for your interest. I must take a look out for that book - I do quite a bit of reading these days.

      On the "step count" thing, I don't sew daily for the very reason you give. Actually I now wear a FitBit to monitor my steps (www.fitbit.com) and find I need to keep to an average of a 1000 steps, which is less than 600 metres total daily distance. It's not at all easy as that allowance can be so quickly used up just moving about the house!

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  12. Interesting Blog Sally. Having had ME for nearly 20 years, and improving with time, I would add that most organs don't work as well. I have had a hypo with over-exertion and I am not diabetic, nor did I have insulin. I agree resting before an event helps, and when you feel very bad, lying still can help a lot too.

    The thing that stops me going out to work is that I am unreliable. One day I could do a full days work, but the next day I could be virtually flat on my back again if I had overdone it. Stress doesn't help either. It makes me feel very bad, and I can't cope with it very well.

    I think my ME probable was triggered by getting chickenpox as an adult. I was very ill, and perhaps should have been in hospital. In some ways I was lucky to get away with 'just' ME. I then had a series of viruses as you did, and didn't recover from the last one. I was fortunate that my doctor did believe in ME, and in fact gave me quite a lot of support when I needed it.

    All the best to you for a full recovery.

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    1. Thank you for sharing your story with ME and for pointing out the improvement over time. I know there are no quick fixes. Wishing you well. ;)

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  13. Have they identified anything that makes a person more susceptible to getting ME?

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    1. I understand that the biggest risk factor is being female. Then there is usually a viral connection to the onset. There is also some suggestion that folk who routinely push themselves, or who are under stress, are more susceptible, but I think that could just be anecdotal. Really I think they don't know... because obviously not all females who push themselves and get viral infections get ME..... Which I think is a round about way of saying... Dunno really!

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  14. A refreshingly good explanation of ME. It took me five or six years to gain the level of understanding that you show in this post which shows that years of ME awareness campaigns are slowly beginning to get more and better information out there. I too would not be knitting or blogging if I were still well enough to work so perhaps there really is a silver lining to every cloud.

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    1. Thank you for your kind comment. I too am totally grateful for the ME community online and the support and help I have had from them. Certainly the NHS couldn't offer much!

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  15. wow thank you for sharing. Fantastic Blog.
    I've had M.E. CFS for 4 years now (classed as severe), (I was finally diagnosed on 31st December 2012) - I luckily found two Doctors that understood what ME was. (My GP Dr. T. Goode, and Dr N. Mike the specialist - thanks guys).

    How they explained to me what ME is ....

    ME/CFS is what you have when they have exhausted everything else, when they have tested for everything and come up with nothing. ME/CFS is what they label you with, when you have a certain set of symptoms and medical science isn't advanced enough to work out what it exactly is.
    Hope this explanation helps.

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    1. Thanks Mark for your comment. I agree that CFS is often a diagnosis of exclusion - which sadly leads some folk to believe that "there is nothing wrong with us" because the doctors can find nothing wrong, and so they think that we are just depressed. (But just because you can't find the needle in the haystack, doesn't mean there isn't one!)

      As I understand ME however, it is the post exertional malaise that is critical to the label. However it seems the NHS does not recognise ME (which is a WHO recognised illness) and describes everybody with unexplained fatigue lasting more than 6 months as having CFS.

      I think the sooner the research comes up with good biomarkers to be able to recognise the different types of fatigue ailments the better. This way each type can be treated appropriately. At the moment it's a bit like lumping all "leg pain" into one group and not recognising differences between broken legs, arthritis, ligament injury and so on....

      This of course is the reason I support the charity Invest in ME because they are searching for scientifically validated answers and not just going with the flow of the psychiatrists who try to claim it is our wrong thinking.

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  16. Hi Sally, thanks so much for your comment on my blog and sorry it's taken me some time to be able to read this! But bravo for posting this to increase ME awareness. The "do 60%" rule is so so hard to stick to, if only people knew how much work actually goes into having ME (restraining ourselves is such hard work!!). It's great you have your sewing to look forward to, I really need to find myself a nice quiet hobby like that. Anyway, I hope your daughter's fundraiser went well and your down slide ends quickly and you start feeling better soon. Hugs! :)

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    1. Thanks for this... As you say it is so difficult keeping to this 60%... but since trying to stay to 1000 steps a day I seem to have been more on a level - and of course the "keeping movements slower" thing that I learned from you (I think) really helps too.

      The girls did really well and raised £1522 in total. We were all totally amazed and delighted by the generous responses of so many.

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