Embracing it

“Life is not about waiting for the storm to pass, it is about learning to dance in the rain.” 


With a condition like ours you either laugh or you cry. I choose to laugh, for the most part. At home we joke about my inability to help around the house. My brother threatens to stick me in the wheelchair and push it to the dishwasher so that I have no excuse not to help load and unload it. We make light of the fact that I am poorly. We joke that I am swinging the lead, that I am a lazy sloth and fooling them all into thinking I am still ill. We laugh at my situation; at the pace I walk (we say there needs to be two lanes down the hall so that people can overtake me) and at my inability to form coherent sentences. I can take a joke. I am so, so thankful that this illness has not taken away my sense of humour. My friends make fun of me too. I love that the people I love most are embracing my new life with me. While they make allowances for me now, they subject me to the same banter and ridicule that we have always thrown at each other. (On my poorlier days I cannot cope with the jokes and Zombie Anna has no idea what is going on, but I don’t see my friends when I am that poorly anyway.)

Last year I had a children’s tea party for my birthday. Rather than get too upset about not being able to celebrate my birthday in the way I would have liked, I embraced my new restrictions and limitations. In a way I was poking fun at myself. I have become like a child again, reliant on others for almost everything. We played pass the parcel, had a lion piñata, stuck the tail on the donkey, had party bags…the works! I didn’t manage to join in with the games myself but I laughed along and loved spending time with my favourite people. This year I think I am able to manage a celebratory meal in a restaurant with a few friends…keeping everything crossed for next weekend. 

I have a ‘day bag’ that I carry downstairs with me everyday. It has my tablets in it, my activity diary, ear plugs, painkillers, my laptop, mobile phone…I use it so that I don’t have to keep making trips up and down the stairs to get things. Once I am downstairs, I am downstairs for the day.

If I go out for the day I might take a blanket, like an elderly person might have to. I have snack pots in my bag and always a bottle of water. Sometimes I take a change of clothes incase I am unable to control my temperature and the cold sweats make my clothing uncomfortable. It doesn’t matter. If having to take all of these things with me mean I can get out of the house for a little while then I will do it. I have chosen to embrace the changes that are occurring because of my ill health. Admittedly it isn’t always easy but I try my best. Getting in a grump because life isn’t quite going as planned is hardly going to fix my situation is it?! If everything went to plan life would be incredibly boring I’m sure…