What Living Well with ME/CFS Really Means

I’m writing this post to help raise awareness of ME/CFS and to take part in the #May12BlogBomb

I have a great life. When you see me out and about you will see a happy well-functioning individual. But even if you know and love me, you will see very little of what is involved with living with ME/CFS. When I say I have a great life, that’s because I’ve learned how to be appreciative of the little things, I’ve learned that it’s possible to be happy without big highlights and I am happy. But I’ve had to learn to live my life in such totally different ways to what’s normal in order to get here.

In order to be happy, I choose not to focus on what I have lost and what I can’t do, but I’m going to do it today because I want to show you that even those of us that ‘aren’t that sick’ miss out on a lot.

  • I can no longer work full-time
  • I can no longer function under stress
  • I can no longer multi-task
  • I can no longer go skiing, snow-boarding, hiking or scuba diving
  • I can no longer work as a residential social worker, children’s home manager, ski instructor, walking guide, tour leader
  • I can’t walk more than 3 miles even on a good day
  • I can now dance a little at a party as long as I give myself several days of very low activity afterwards to recover
  • Because I can’t work full time there are many material comforts I can’t afford that many people take for granted like a car and holidays
  • I live with my parent’s half the year because I can’t afford to pay rent year round
  • I can’t spend nearly as much time with my friends and family as I would like to
  • I can’t show people how interested I am in them because I just don’t have the energy to follow it through
  • For 14 years of my life I haven’t had the energy to take part in the kinds of activity which would increase my chances of meeting a life partner
  • The medical profession has nothing to offer me but I can’t afford to pay an acupuncturist or masseur or any other complementary or alternative practitioner who could support my health and well-being
  • I cannot do things spontaneously
  • I can’t listen to music while I’m doing other things

I function as well as I do because I work really hard at it. I meditate 2-3 times a day; I practice tai chi every day, yoga most days; I prepare fresh healthy food for every meal (when I can); I have a ridiculously restricted diet; I plan and pace everything I do; I approach everything with an attitude of relaxed effortless; I am extremely mindful because so many of my old ways of being would put my health at risk and I have to catch myself before they do. Nothing in my life happens without consideration and adaptation to this illness.

I do all this because life without it is horrific. I’ve taught myself to believe that I do it because it feels good, because motivation towards something positive works better than avoidance. But If I had never had a chronic illness would I be doing any of it?

So, this is the life of someone who functions well with ME/CFS. It is a life that is self-taught through experimentation, there is no guidance given by the people we are taught to respect as the guardians of our health. We’ll be lucky to be believed and have our illness recognised and diagnosed.

So many people with this illness don’t have enough energy to start with, to invest in their well-being. Their losses and suffering are way bigger than mine. I may have got by without medical support, but it is their only hope and is not yet a reality. Medical research into this illness is ridiculously underfunded and desperately needed. This is why for this year’s awareness day I am sharing with you the side of this illness that I normally don’t look at, even though, now that I have, I don’t feel nearly as good as I did when I wrote the words ‘I have a great life’!

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