Today is ME awareness day and as a blogger with ME I feel an obligation to blog today. I feel I'm in a fortunate place as I'm on the slow road to recovery from being bed bound. However, I want to explain why even when things start to get better recovery brings its own challenges.
A few weeks back I was asked if I felt like I still had ME or if I was just a tired mum now. The question took me back a bit and I didn't know how to answer. I didn't give a good answer back, I never can. I get so muddled when I speak sometimes that I end up saying everything because I can't think of the right words. I could understand why he asked the question, on the outside I must look like a tired mum. What people don't know is that to look that way I am pushing through the pain and the heaviness and the nausea till I can get the boys down for their nap and down to bed. Nap time is an essential part of my day to enable me to function till the kids go to bed.
When you look ok on the outside and can do some things, it's easy for people to place expectations on you. 'if you can do that then why can't you do this?' The answer? Because I have a certain level of energy to use throughout the day. I have to prioritise what I spend that energy on. Some days I get my priorities right, sometimes I don't, but if I've not done something it's because I've not had the energy to do it. I'm not lazy. I've given up feeling guilty over how I spend my energy, except for when it comes to my boys.
Because I only have a certain amount of energy to spend a rarely have a day where my life doesn't feel like chaos. The house gets trashed by my lovely kids, housework is a never ending job, food always needs to be prepared. I'm lucky in that I have a good support network and a hard working husband otherwise the house would fall into utter ruin. I try to do some housework, but as my husband says, what takes him 5 mins can take me 3 hours.
Sometimes, I get bored of living my life in the house and I want to go out. I can do the odd trip out now, I can handle bits of walking. But these days don't come without their punishment. A trip out now means I will pay the price in increased nausea, pain, stiffness and heaviness for the next week. And on some rare occasions I have pushed myself so much that my energy levels haven't recovered to what they were before, because, with children it's impossible to rest sufficiently.
Being partly well brings more responsibility which means I have more to remember. What this actually means is that I have more to forget. No amount of lists or alarms are enough to help me remember. I can forget I heard an alarm one minute after hearing it.
I'm grateful I've been fortunate enough to make some recovery though. For three years I was unable to sit up without feeling pain, dizziness, nausea. I've come a long way since then, and for that, I am truly thankful!
