When I was diagnosed with MS I was unrealistically optimistic about my future. I knew what might happen, but I didn’t really expect some of the more unpleasant symptoms to happen to me. I knew that it was possible that I might become incontinent, use a wheelchair or lose my sight but I wasn’t going to let that happen to me, was I?
Over 40 years they have, well I haven’t lost my sight and I can probably live with the others as long as I don’t go blind. However, I want to talk about some of the other unexpected losses that have certainly happened to me and changed the way I am as a person.
I would like to think, no, I know, that I was brought up with good manners. It’s inherently clear to me how I should behave in certain situations. I learned how to eat nicely and politely with a knife and a fork at the same time, I knew how to hold a cup and a saucer and tea was poured from a teapot. I could apply makeup expertly. I walked in heels and I could wear shirts with buttons that did up all the way to the bottom, indeed I could do up buttons! Well, here’s how it is now for me.
- Like most people, with or without MS I need to stay hydrated. We all know about the de rigeur 2 litres a day of water, although it doesn’t have to be water, it can be tea but not coffee nor alcohol. At some point into my journey with MS I needed to use a drinking straw so that I avoided the accidents with fluids. I’m not sure exactly when that happened, but I would think that it was around the time that I could no longer afford carpet cleaning.
- I used to know and practice drinking from a champagne coupe, dish shaped of course, by holding the stem and sipping without tipping it down myself. The aromas of an alcoholic liquid in my mouth are lost when it is drunk through a straw. It’s very difficult to appreciate wine when it’s passed through a straw.
- I used to eat nicely. ‘Don’t put too much in your mouth and swallow one mouthful before you put any more in’ I was taught. Well, that doesn’t happen any more. I am very aware that it is not particularly pretty watching me eat. The haphazard process of loading my fork and balancing it over the 8 inches between the end of the table and my mouth is precarious to say the least. I can’t lean forward because all my core muscles have packed up and left for the coast. So restaurants are a challenge.
- Long gone are the days for me to choose from an extensive menu. I look at a menu in a restaurant now and I eliminate 60% of the choices because there are digestive implications in many of them. I avoid vegetables, lactose, gluten and anything that might resemble close to soya. I don’t know if anyone else has this irritation, but I cannot afford to be too far from my own bathroom, my hoist and PA on call.
- I get very frustrated when I can’t reach things physically and mentally, my brain tells me I can do something but my body says ‘Ha!’ I think I can bake chocolate chip cookies, which is okay until I need to reach the eggs in the fridge, on the high shelf and guess what? I can’t stand up. I think that I can dust the top of my picture frame. Well, if I could get in to the cupboard under the stairs to grab the feather duster I could reach the top of the picture frame and again my mind thinks it’s possible but the door frame around the cupboard says no to a wheelchair.
- I love writing. This is a constant obstacle for me to overcome. This works on 2 levels really, or doesn’t: a) my fingers just won’t do as I expect of them anymore. They will type, but it is totally unrecognisable as a sentence. Semi-colons, commas, numerical digits are interspersed with random letters. If I was typing for Bletchley to hinder intelligence I’d be okay. It certainly is an Enigma. b) my MS brain can’t always access the correct word for the correct use. I can identify that it begins with ‘Irr’ or ‘Act’ but the random things that come into my head are completely unsuitable for my need.
These are a few of the new and problematic issues when residing with MS. I don’t know how anyone else handles these daily challenges, but I would love to know.