ME and CFS

ME and CFS

[IMAGE] A6 indian ink and watercolour 

ME and CFS.

Today is International ME/CFS Awareness Day. 

Myalgic Encephalopathy (ME) also called Chronic Fatigue Syndrome (CFS) and Post Viral Fatigue Syndrome (PVFS), is a serious and debilitating condition.  The exact cause is unknown.  It is classed as a neurological condition by the World Health Organisation and is also believed to be connected to the immune and endocrine system.

I was diagnosed with CFS in January 2007, although I have been ill since 2005.  I am a “mild to moderate” sufferer – though mainly moderate at the moment.

Moderate Chronic Fatigue Syndrome sounds fairly comfey to me – but the reality of living with it is anything but.  I have classic symptoms including overwhelming fatigue not refreshed by sleep or rest, memory and cognitive problems, sore glands, irritable bowel syndrome (IBS), migraines, stiff/weak/aching muscles and joints (particularly stiff neck and weak limbs), and many many more.

Here is a good description of ME/CFS symptoms.

And a fuller description of diagnostic criteria

I am unable to work.  I am unable to help around the house.  I am unable to walk very far, stand for very long or do anything even moderately physical without making myself very ill for days (sometimes weeks) afterwards.  I have a low tolerance to stress and anxiety which make my symptoms worse and have the same effect on my body as running around.  I find it difficult to read a lot, have a conversation when there are other distractions around, construct sensible paragraphs (like I am trying to do now).  I need at least 9-10 hours sleep (sometimes 12 hours if I can).

I used to work full time and lead a busy life. I am a University Graduate with 4 A-Levels and have always prided myself on my mental agility.  I used to be brilliant at problem solving, being a very empathetic person I could see an issue from many angles and come up with lots of innovative solutions.  My favourite approach to tasks, especially physical ones, was to approach it head on with huge bursts of energy. 

Just before I became ill I was rediscovering my love of cycling, doing lots of walking, eating a healthy diet.  I had arranged to go down to 4 days a week at work so I could use a day a week to explore my artist side and do some voluntary work.  I was engaged (now married) and settled, happy, content, optmistic, excited about the life in front on me.  On top of my game.

My life has changed – a lot.  I have been forced to change along with it as have my family.  ME/CFS a challenging condition and takes great strength of mind to survive and prosper.

Here are some great articles about accepting chronic illness and making changes in your life for the better:

Seven Steps to Managing Chronic Fatigue Syndrome

Understanding the Different Phases of CFS

Coping with Chronic Illness

The Roller Coaster Emotional Ride of CFIDS

There’s a perception that this illness happens to high achievers, those who have led unhealthy lifestyles, women (of some weak disposition) or hypochondriacs.  It’s just not true.  This condition can hit anyone – it’s not fussy.  You can be a virtuous vegan who runs every day, a fourteen year old full of sparkle, a thirtysomething go-getting man – it doesn’t discriminate.

Here you can read more about ME/CFS from organisations who know sufferers and know the reality:

About M.E. pages – from ME Association

All About M.E. – from Action for ME

I’m ill.  I get incredibly frustrated, sometimes confused and very very fatigued.  Not like flop on the sofa tired after a hard day – more like your body has nothing left to give, no charge in your battery.  Everything I do has to be planned and there’s a lot I just don’t do as I haven’t the energy allowance.  It’s hard, it’s exhausting, it’s challenging.

YET … I am still me.  I am still happy and content.  I am still motivated, I still have aims and goals – it just takes a lot longer to work towards them.  I am still loving and loved.  Still creative, intuitive, intelligent, empathetic, talented, strong.  My life is not over and I am not my illness.  It dictates a lot in my life – but I (we) work with it to get the best possible from every day.  I appreciate the tiniest details and smallest of things in life.  I am more patient than ever I used to be, more tolerant, more appreciative of our differences and how beautiful we all are.

If you think you might have ME/CFS and you’re doctor isn’t taking you seriously I urge you please change your doctor.  If you know you have it and you feel alone – please know you are not – and there are many groups online and in the ‘real’ world where you can meet people who understand.  If you are having problems getting access to resources please keep fighting (a slow gentle fight) – you deserve the support and I believe in you.  If you are feeling like this diagnosis is the end of everything for you – please know it is not.  There may be many challenges and changes ahead but you are beautiful and have so much to give.

If you know someone with ME/CFS and want to know how to help – keep it simple.  Here is a great video from Sleepydust.net that tells you more about it and suggests ways to help.

[YOUTUBE=http://www.youtube.com/watch?v=r0w9-eQ_fKQ]

I like the idea of sending a letter/email/text and not expecting a reply, offering to get shopping, looking around their house when you visit and offering to do jobs (like clean the loo), just visiting (or going out somewhere quiet and easy) and sitting together without the need to chat non-stop.  Some sufferers (particularly severe) can’t always do things you might expect.  Intolerance to noise/light/smells/motion, need to be near a toilet, stimulating environments all might make them feel quite poorly – so it’s a good idea to check (sensitively) rather than just railroad people into things. 

I read once that the kindest thing you can do for someone is to believe in them – I think that’s true for ME/CFS too.  In turn that belief leads to a desire to listen, to let them really be heard and to give appropriately.  I love a hug but some people have pain if they are touched – communication is key.  It isn’t always easy for us to tell you what we want or need (I know sorry – it gets more complicated!).  My brain plays up sometimes so that I don’t even know if I want a glass of water or fruit juice – I end up sincerely saying “I don’t know”.  If I zone out, forget what you say or struggle to reply it’s not personal – it’s illness interference.

I don’t normally use my blog to write like this – but it feels important to me to share what I can about this illness to help raise some awareness.  So many ME/CFS sufferers feel they become invisible – often stuck at home without a voice or a prescence.  So thank you for letting me share this with you and for reading this far.  Especially with my dodgy brain at work!

I have a collection of ME, CFS, CFIDS, PVFS links and resources which I keep on my del.ico.us site and add to when I find new things.  You might find some of it useful too:

http://del.ico.us/rachelcreative/cfs

PS: My drawing represents me, ME and CFS.  It’s not joyous, it’s not despondent, it’s not well, it’s not horribly ill – it’s just me.  Simple yet complicated me.

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Posted in Art, Artist, CFS, Disability, Doodle, Drawing, Health, Life, M.E., Painting, SelfPortrait, Sketchbook
9 comments on “ME and CFS
  1. Christ Almond says:

    This is an excellent article.

    Your work on this blog, with its vibrant gallery of authentic and idiomatic art, shows how illness is no barrier to terrific work. A journal of personal adversity can be a hard thing to pitch right, and you achieve it with admirable honesty, constraint and generosity. You show how art can be an important therapy and that the act of transcending health difficulties by creative means is a vital part of the recovery process.

    Those affected by ME and CFS will be comforted by your lucid, insightful words and assisted well by the resources you have suggested. People who do not know of the illness, or who have a misguided conception of it, need information of this kind and you have provided a great introduction to the issues.

    Your supportive words will multiply and trickle about this amazing network helping people to help themselves and each other.

  2. Rachel says:

    Great contribution to the Awareness Day!
    Thank you very much for those link to useful websites.

  3. Sylvia says:

    Great post! Thanks. 🙂

  4. Christ Almond says:

    Erratum: Of course, I meant restraint, not constraint. Being a perfectionist, pedant, whatever, I’m a bit vexed when I make a mistake in a comment and have no way of rectifying it – well, save for this.

    I have been following your writing on this subject in the lead-up to yesterday’s ME/CFS International Awareness Day with great interest. I lived an experience of severely debilitating chronic pain and fatigue between 1998 and 2001. It was brought on by a combination of psychological stress and obsessive drug use.

    Extreme mental and physical difficulties were diagnosed as an addiction syndrome and I was offered psychiatric (drug) therapy which was disastrous. The pills I took for depression, anxiety and pain were numerous and utterly unhelpful. I decided to try to get better without the drugs and educated myself about healthy lifestyle choices of exercise, diet and social normalcy. My health improved, very slowly. I think people who develop this kind of illness following drug or alcohol problems often face the additional pressure of believing they have brought it on themselves. They can be directed to the wrong kind of services and treatments which may set back their recovery by years.

    The positive part of this experience is the incredible feeling, post-recovery, of having battled through something that destructive and survived. Such a cliché, that which doesn’t kill us makes us stronger, is sublimely true to those who have lived the stasis of chronic collapse.

    ‘What you mistake for madness is but over-acuteness of the senses.’ E. A. Poe

  5. Thank you all. I saw so little from some of the high profile ME groups this weekend I started to think even they had given up on me, (us), M.E.

    Your comments mean a great deal to me.

    Thanks.

  6. Rachel says:

    Things do not change over night, unfortunately. We try again next year, and year after. I believe expressing our feelings and hope will reach some one (or group of people) who has power to make the difference one day.

    I think you did a very good job this year. I really respect you. And I thank you for your time, efforts, information and spirits.

    Courage doesn’t always roar. Sometimes courage is a quiet voice at the end of the day saying, “I will try again tomorrow.” This is my favourite quote from my friend Heather.

  7. seb says:

    First off, thank you for visiting my blog and thank you for your wonderful comment!

    Secondly, I read this post, and it scared me how much I have in common with you, on many different levels. It’s hard for me to read this post though, it reminds me of my own situation a lot, and the way you lived your life, it’s just uncanny really, I feel like it’s me writing…

    I’ve been sick for a while too, since Dec. 05… lots of ups and downs, have made some progress, but working and living a ‘normal’ life is not yet within reach. I’ve been diagnosed with EBV, have had major fatigue (which overall is getting better, but leaving the house is still hard), have also had major league nightmare headaches in the back of my head and lymph node pain… Anyways, all these symptoms are improving, my first 9 months of illness were horrendous… and I truly feel that I will get better, I’ve been afforded the opportunity to rest and take a seat back from life (staying with my parents), so I’m fortunate in the fact that I can really try to recuperate. I feel like my mind, my thinking is coming back (before I was in a fog and so groggy, and in pain too). I dunno, never fully recovering is frightening to me, I accept the situation I’m in, but at the same time, I believe that with persistent positive thinking, a love of life, and appreciating each and every day, I feel I will recover to a large extent!

  8. seb says:

    By the way, I appreciate your positive outlook and strength of character. It’s situations like this, where we learn a lot about ourselves…

    I want to wish you the best!!!

  9. kirrily says:

    Hey Rachel! I love your inks, they are great. I got here by way of Flickr. You should check out the details of the book I am putting together for people with CFS, maybe you would like to contribute. Her’s a link http://www.flickr.com/groups/notcrazyproject/discuss/72157594479652530/ It’s been a while since it all started and there have been some changes – but if you would like more info, just email me.

    Kirrily

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RachelCreative

Rachel Groves, Artist
Lichfield, Staffordshire, UK

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