Today marks the start of ME awareness week, leading up to International ME/CFS Awareness Day on Sunday 12 May. Although I’ve had ME for over six years, this is actually the first time I’ve known that there was any such thing. Which just goes to show how much more awareness raising we need to do. Admittedly I’m not known for being observant, often trundling around in the clouds, but if someone with ME is oblivious to the International Day, then it doesn’t bode well for the rest of the world.
With that in mind I thought I would dust myself down and get back to blogging. Sadly I’ve been absent for a few months due to my current relapse, but this weekend I’ve been feeling stronger so I am keeping my fingers crossed that my body is slowly healing itself again. Providing that I don’t do my classic thing of shrieking ‘yippee’ and running around like a mad person cramming in all the things I’ve been day dreaming about for weeks, that is. You’d think I would have learned to know better by now. But no. Boom and Bust will continue to be my middle names for the foreseeable future.
I have also been inspired this week by the ME Awareness Week Synchroblog, the idea of Lydia Hendry, as described on her blog A path through the valley. How does it work? Well on each of the designated days there is a host, who posts a blog on the specified topic and invites others in the community to post, comment, tweet, and generally join in. Today’s topic is “Being a good family/friend/carer” and is hosted today by Arielle at Dear Little Disease.
At first I thought it would be easy to write on any topic related to ME, but then I realised that this is probably one of the hardest ones going. It’s quite an emotive subject as you can bet your bottom dollar that we’ve all very quickly found out who our real friends are. And that is an extremely painful lesson to learn at anytime, let alone when your body resembles some concoction of defective factory parts put together by the night-shift for their own amusement. In truth almost everyone will have multiple circles of friends and acquaintances, and it’s only when push comes to shove that we find out which circle each person fits into. But without that chronic illness or other life-changing event, the majority soldier on whilst being blissfully unaware of the true occupants of their inner circles.
But those that are privy to the centre circles and have stuck by through thick and thin are valued more than they could ever know. And a large part of that value is based on acceptance. They accept who we are, what is happening to us, and listen and share in both our frustrations and moments of joy. They don’t dismiss our symptoms or pretend they understand what it’s like. They offer sympathy and understanding to things that cannot be explained. And they offer the all important able body of course. And in return, we must accept their help. For living in denial and refusing the help we need will only push those that care for us further away.
Now I know that if all the above were the key responsibilities in a job description, I would never match up to the essential requirements and would feel woefully underqualified for the job. And that’s without the able-bodied bit. But being family, a friend or carer doesn’t require perfection. Just like those with ME have good and less good days, so can those closest to them.
Occasionally my husband forgets that its ok that he is not able to just fix me, and he tries to counter all my complaints with suggestions of things I should do about them. Which of course never goes down well as if I could do something about it then I jolly well would have done already. But then I regularly forget that things are often not as bad as they seem, and it’s my expectations of what path my life should be on, combined with my tendency to worry about the future, that are out of whack and can blow things out of proportion. Sometimes the smallest achievements actually turn out to be the biggest ones.
Bottom line? Perfectionism is not good for your health or for those around you, and learning to recognise and accept the things we cannot change is a healthier recipe for life.