After my mother-in-law and sister-in-law were asking some questions about how I am and how my illness impacts on my life it made me realise that I still measure who I am against who I was.
My definition of who I am is a reduced version of who I was, like before but not so active. But I still measure how I feel now against a benchmark of where I want to be, which is based on where I was before.
Maybe this is too confusing for the ME brain ;o)
See I realise I am still hoping to recover to 75% or more of where I was before I got ill. And that I expect that to happen within the next 12-18 months. That would be within 4 years of being ill. This is not an expectation which is at the forefront of my mind – it’s something quiet and buried deep down.
On the one hand I am pleased I maintain the hope. On the other I wonder if I don’t recover to this expectation will I go through another level of grieving. I think it’s a case of dealing with whatever the outcome is when it happens.
But it’s the first time I’ve realised I am still holding on to that initial picture I was given that “most people with CFS recover within 4 years”. The evidence for that statement is flawed yet I hold on to the hope.
I also realised that I do not fully embrace who I am right now because I still measure against who I was before my illness and, in turn, who I want to be again. Or rather the level of physical function and health I was before. I’ve surely moved on as a person in these 2 plus years.
So I wondered – is it a problem that I do not define myself in the now, for who I am now, for what I am capable of now? And I don’t think it is a problem.
I’ve read plenty of advice that says you must accept but you must maintain hope.
I think I do accept, mostly accept, but I do have times when it all hits me again like a blow to the stomach. Like when last night I was so tired but needed to clean stuff up (womens things and not something I can ask for help with from my husband) and just a few minutes later I was utterly exhausted and in pain. I could have sobbed I felt so helpless and crushed by this illness. Fooled into thinking I was a little better and then stripped back to pain and headache and exhaustion from a few minutes at the wash basin.
I can see that not fully accepting and embracing my current level of capacity makes for these moments of shock and upset when I realise I am unable to do the things I always want or need to.
BUT wouldn’t accepting these current limits as who I now am make it incredibly difficult to do more when my health improves? Maybe it is a better way – that I would wake up one day in 6 months time and discover I can go for a walk to the corner, I can stand and wash up the dishes, I can spend a few horus reading a book without it making me ill. To see a bigger increase in health rather than the drip drip increase (often two steps forward one step back) approach I have now. This is all assuming that I will continue to improve of course.
But what struck me is that most people are defined not just by who they are now but by who they have been. A healthy adult is not just the job he does and the activities he does now – he is also the person who played football at 11 years old, studied for his exams as a teenager, went out to rock concerts in his 20’s.
We don’t ordinarily ditch the parts that made up who we once were – so why should we do that as chronically ill or disabled people?
Why must I let go of being the woman who would always step up to help with the physical work, to re-decorate the house, to paint a canvas with intense energy, to cycle and walk for miles without thinking about it. The woman who read into the small hours of the morning rather than put the book down, to attack the gardening with shears and power tools, to work extra hours, solve problems and explain complex ideas simply. Who would chat for hours to friends on the phone, to listen and to be there when a friend was needed. The girl who had dreams and believed she can charm the wind and talk to dogs and was as alive in her imagination as in the real world. Who wrote stories and wanted to drive trucks and thought boys toys were better than dolls. These things are still within me and part of me. I’m not going to deny them. I’m not going to shut them away.
What we need is not a new beginning as a person with a chronic illness. We need to learn how to live fulfilled and happy lives within the limits we have and still be alive, in our hearts, with all the things that have made us who we are.
To balance the life we dreamt of with the life we have. Because everyone has to do that – ill, disabled or not.