- Wet wipes
- DVDs and lots of them
- Jug/large bottle of drink next to my bed
- Mobile phone
- Comfort food
- Tissues for the tears
- Electric toothbrush - so it's easier for someone else to brush my teeth if I should need them to, unless they're like my mum and get the giggles...that was messy!
- Straw for stinks - it's easier on my arms if I don't have to raise a glass to my mouth, or if I need someone to 'feed' me drink
- On the days I'm able to spend time downstairs I try to change which sofa I sit on or which angle I'm facing. It gives me a different view/perspective of the room which helps kid myself that I'm not staring at the same four walls for days on end. I do the same in bed; shifting myself between the left side, the middle and the right side of the bed.
- Amazing socks so that at least my feet look cheerful
- Wardrobe door of inspiration - I love a good inspirational quote and my wardrobe door is covered with them. My current favourite is "Today is life - the only life you are sure of. Make the most of today."
- Listen to my body, forget the targets and goals for now
- Most importantly I am kind to myself - this is not my fault. Berating my body and brain won't make things any better. We just have to ride the storm. Nothing lasts forever, be it good or bad. This too shall pass. This is temporary (no matter how long it lasts, it won't be forever.)
I dug out the CFS/ME clinic notes on setback management and this struck a chord with me: "As your symptoms improve, have the confidence to gradually begin to build up your activity again. One step at a time...slow and steady wins the race." Setbacks do knock one's confidence. A lot. You have been plodding along with progress, being careful and mindful and sensible and suddenly everything comes crashing down around you despite doing exactly as you should be. You become very vary of starting over yet again because you know that you will be knocked down once again. All I can do is hope that each setback, when it comes - because it will, will be better than the last.
"Accept that Setbacks are a normal part of CFS/ME." Well, I'm trying.
We, as M.E. sufferers, are (sadly) used to the One Step Forward, Two Steps Back way of life but setbacks are more like five steps back, and relapses....more like ten to twenty. They take colossal amounts of inner strength and determination to not just throw in the towel and sink into despair. Today it would have been much easier for me to allow myself to sleep all day. But that won't do my body clock any good and I personally feel even worse after sleep. In the long run I did the right thing in keeping my eyes open.
And at times like this I still cling on to those silver linings with every ounce of energy I have left and I am so grateful that that is the way I am. This evening I noticed another milestone. I was in bed and I leant down to unplug my phone charger from the extension cable under my bed. Not only am I now strong enough to pull a plug out of a socket but my core muscles have strengthened enough to allow me to sit back up again. Such 'exertion' would once leave me flat on my stomach with my arms dangling down the side of the bed. I'd have to shuffle myself into a position where I was able to push myself back up with my shaking arms. Not anymore it seems. Looking at the bigger picture like that is keeping me sane and helping me stay hopeful.
EVERYBODY WANTS HAPPINESS, NOBODY WANTS PAIN, BUT YOU CAN’T HAVE A RAINBOW WITHOUT A LITTLE RAIN.