As someone who’s life is spent being in bed 90% of the time, getting outside is always something I truly appreciate and look forward to each time. Simply getting some good fresh air and looking around me and not seeing those four walls of my bedroom, gives me a real sense of relief.
I’m so grateful for the times I am able to get out of the house in my wheelchair and love the time spent with my Mum outside the house; like on Tuesday, we went to get a coffee, went to a couple of shops and of course had to fit in a photography session; which was really lovely.
Though after having a nice time out, the pain, anxiety, exhaustion and panic kick in, bringing me to tears, whilst we’re trying to head back to the train station to get home as quickly as possible. I can only be sitting out of bed for very short periods of time unfortunately, so when I do feel well enough to do so, it isn’t long before the intense pain and fatigue race to a whole different level than usual.
The short train ride back home felt like it was hours long instead of minutes. When I finally got back, I had to then get hoisted back in bed, which with my legs now being extremely swollen and even more sensitive, it was excruciating.
And now, three days after my trip out, I’m simply trying to rest and recover from it as best as I can and when I’m not in too much pain, try to sleep as much as possible and continue with my array of pain meds to help me get through these after effects.
Nobody sees the after effects, the repercussions of us chronically ill sufferers. They unfortunately only see what’s on the surface and not the ordeal it takes us to get out in the first place, let alone the agony we suffer because of it.
But, unfortunately, it’s simply the way my severe M.E is for me and I’m continually searching for better ways for me to manage my symptoms and illness in general and I’m hoping with a change in wheelchair that might increase the comfort whilst I’m out, perhaps enabling me to sit out more comfortably.