Further handicaps because of MS
Why does everything takes so long?
I have a problem with expecting too much from myself. This in turn hurts me more than it helps me. I am always looking at my life and trying to simplify everything I do but it is harder than it seems. The biggest problem with advanced MS is how an ordinary activity is suddenly fraught with unexpected problems. My life is full of handicaps because of MS.
These days
I must concentrate on the activities I can still do and think about the things I need to do. My top priority is the kitchen and cooking. MrsB will decide what we are going to eat that night then it’s over to me. It keeps me physically active. I always try to walk around the supermarket when I buy the food. Organisation is essential so I need to think things through in advance.
I cook the food I like to bake a cake each week and I buy the food but someone must keep the kitchen tidy and that someone is me. Managing that space is a balancing act. My biggest enemy is fatigue and my greatest friend is a seat on wheels. I am excused doing the floor only because my balance is dreadful but in all other respects the kitchen is my domain.
I’m in charge
Responsibility for the kitchen and cooking is my therapy and it is rewarding. Planning is now an integral part of cooking any meal. I can no longer leave everything until the last minute. Everything now takes twice as long, demands more concentration and requires much more precision. Fatigue is the enemy, I have learnt that the hard way. Recently I have broken far too much crockery.
As you read this I suspect you are thinking “What is all the fuss about? Patrick is doing what he enjoys doing. Okay he has had to make a few minor changes but none of it the sounds very serious.”
“I have had to let go of activities that I could do as recently as last month”.
Walking smoothly is now an ex-activity as is bending over. If something ends up on the floor, we both struggle. MrsB has had 2 partial knee replacements and that means she cannot kneel. If I get down, I must always remind myself that while getting down to floor level is relatively easy, I will struggle to stand up again.
Handicaps because of MS
It not easy letting go of yesterday’s can-do’s and coming to terms with the new handicaps because of MS. I do lose my balance so inevitably there are breakages of cups and plates. I’m following all my personal rules to remain vertical then suddenly the wretched MS throws another rule into the mix. My left leg throws an unexpected wobbly; I turn without stopping and my left leg slips and buckles. Next thing I’m on the floor, the rollator is on its side and I‘m surrounded by two shattered plates.
Life with MS
It is difficult and at times incredibly tough. I must remember that I am a survivor but at times I just want to curl up and cry. Broken plates, cups and glasses can be replaced but I can’t. It is important for me to trust myself to get up and carry on otherwise what is the point.
Associated articles
VELA Salsa sit-stand chair
Saddle stool to move around in the kitchen
March 2020
Patrick I know you like “the blues” have a look at this video, it’s Lightnin Hopkins – mede in 1967, It’s one of the best blues videos I’ve seen and heard. There is a full lngth video over 30 minutes which you can find on Amazon: https://www.amazon.co.uk/gp/video/detail/B079ZZG58M/ref=atv_dp_watch_trailer?autoplay=trailer&fbclid=IwAR3SOwxeYfqV0SzTx-mXq-LJJ1Ux8_SIjKIjsACL4fb5mwX6a8355KRCUN8
Hello John,
Obviously you are a Lightnin Hopkins fan. Playing the music sounds so effortless and easy, I think you and I would struggle to copy that. I always think Taj Mahal falls into the same category
Keep going. 😉
Hello Misha,
Keeping going is the only way.