It’s so hard to pick just 5, but I thought it might be helpful to those people that may be interested in knowing and it is always helpful to be succinct when it comes to explanations.
So here goes…
1. Sleep is sporadic and painful. – finding a position that doesn’t hurt is impossible. Similar to lying on a bed of boulders whilst being bruised and battered. I hate the nightly struggle, however the pain is always there and debilitating anytime you desperately need rest.
2. showering. The simple act of showering so that you can feel clean and refreshed is so hard. I have a permanent seat in the shower due to my RA and other autoimmune diseases, but moving and showering is so painful that often I cry in the shower and need to rest afterwards as it is physically painful and exhausting. Washing my hair is similar to building a car with broken hands and cement weights around your arms.
3. Holding a tooth brush, brushing my hair, holding a pen, typing or eating with cutlery is truly agony, and its embarrassing when I need help.
4. Dressing can be so challenging when you have to contend with zips, buttons, underwear and tie shoes. Feeling well dressed and tidy is a real sense of personal achievement and more meaningful than climbing Mt. Everest.
5. Toileting. If you have ever used a toilet with a broken shoulder, leg or hand then you will have some idea of some of the hurdles encountered. It’s always the simple things that everyone takes for granted that truly we miss very deeply.
These struggles can be very dehumanizing and lonely. Frustrating in the extreme and very, very isolating.
Thankfully my husband has never made me feel less than who I am, but it never sits comfortably in my mind to know I am in my 40s and struggling to do the things that I learned as a very young child.
Will I ever come to terms with it and make a peace with these feelings and struggles? I will let you know if and when it happens.