[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:
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:
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.
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:
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.