I have been disabled now since 2015. I understand this is a bit of a weird statement to make but this is when my conditions affected my life to the point it was no longer ‘normal’ and I could no longer do ‘normal’ everyday things without adaptations.
My problems started in 2014 with sore, stiff hands and a bit of knee pain. By 2016 I was purchasing my first wheelchair as the pain was too bad to ignore anymore and the fatigue was literally knocking me on my backside.
I have always suffered with pain and fatigue as I grew up with hypermobility syndrome disorder but I had never considered myself to be disabled. I would strap up any joints that had popped or sprained, take painkillers (I was on them from a young age), take a quick nap and I would be on my way again. This with fibromyalgia was a whole new level of suck and took a serious level of adjustment. I adjusted, it took a serious toll on my mental health and it took years to drag myself out from under it but I did. Luckily I have a very supportive family, who never questioned if my conditions were ‘real’ and assisted me in any way necessary.
This winter has been really hard. My pain levels have been worse than ever. The fatigue has left me completely sofa bound and I have had to (when other parents are at home to cover me) take a sleep in the middle of the day.
Although I live my life in pain and I am perpetually exhausted, I have strangely adjusted to it and despite the fact it affects my everyday life as a family we have made adaptations that means we can get on with what is for us a normal life.
This winter has given me a whole new level of disabled and I will be honest I am not coping.
I also recently purchased a new electric wheelchair (upgraded from a manual chair) and although it has given me a new found sense of freedom, the realisation that I need an electric wheelchair and the positive impact it is having on my life strangely means it has had a negative effect on my mental health. It is no longer that it would help me, it is that I ‘need’ an electric wheelchair. It is all about state of mind but at the moment my state of mind is struggling and my mental health is low.
I am sitting here writing this blog today on as much morphine and other pain medication as I am allowed and I am still in so much pain, I am trying not to just curl up in a corner and cry. I can’t as my children are with me and I don’t want to dysregulate them by showing how much I am suffering but it really is hard not to, when pain meds are barely taking the edge off.
I am hoping that with the beginning of spring and with it the warmer weather, my pain levels will drop and my fatigue will settle a bit. I am really hoping that this new level of disabled both in body and state of mind is not my new normal.
I appreciate that this blog may have come across as a bit whiny but we wouldn’t be ‘Living it true’, if we were not honest about the things that are affecting our lives.
