A day in the life

Now, I've decided to write what a day is like for me. I should point out that it might not be very interesting for most people what I do in a day but there are some people who ask me what I do and how I cope, if that's you then I hope this answers those questions.

My day doesn't start in the morning like everyone else, no my day starts the night before when I go to bed. That might not make sense but to explain I need to make sure I get a good night sleep or the following 24 hours are just a waste.

My clothes must be where I can reach them without getting off the bed and my walking stick or crutch on my right hand. I always brush my teeth within an inch of their lives. I lie down and then the twitching starts, not the kind that involves running around the countryside with a camera and a pair of binoculars. Every muscle in my legs and arms start to twitch and spasm and cramp without any warning. The only thing I can do is relax and try to drift off. If it's really bad (like last night) I can lie awake for hours and maybe get no sleep at all but that is very rare.

In the morning I wake and sometimes I forget that I can move now and it takes a minute for me to come to my senses, sometimes I forget that I've got CIDP and I get a kind of 'let myself fall for that old chestnut' feeling. I throw my legs out of the bed and get dressed in a sitting position. Then I have that deep breath moment and try to stand, most days I can but a very odd time I can't, I never know until I try. If I can stand then I reach for my cane and head for my next challenge, the stairs. Right hand on the banister left hand on the wall, the stick just gets thrown to the bottom. One step at a time slowly and concentrating on balance all the time to avoid failure, if I do fail on the stairs I go from step to step on my backside but that doesn't happen too often. My wheelchair is always at the bottom of the stairs facing me. It takes about 50 seconds to do the 11 steps. At the bottom I hop in the wheelchair and decide if I need it to get to the kitchen or not, more often than not I use the wheelchair and get to the kitchen, that's where the food is.

The kitchen is full of hazards for me. First off is the kettle, tea or coffee have to be made so if the kettle comes out of my hand the boiling water flows away from me, so I keep the spout as far from me as possible. I normally have a cereal for breakfast even though I love to cook I can't risk cooking anything when there's nobody in the house in case I fall or have a sudden relapse.

After breakfast I head for the sitting room and put the news on TV and turn on my laptop and read all the papers while dashing in and out of various social networks. That's where I stay until lunchtime. Sometimes people call but by and large I'm on my own.

At quarter to one I head back to the kitchen and make a couple of sandwiches for Louise (my wife) and me. I try to be as creative as possible and sometimes this involves cooking but that's okay because I know that if something was to happen then Louise will be here any minute. Lunch is rushed and after I go back to the sitting room and sit with the laptop and TV until Lauren (my daughter) comes in from school.
That's normally around half four or so. That's when I can come to life a bit more, when there is someone else in the house I feel more confident walking around because if I fall there is some one there to get help.

With Lauren in the house, or at least near the house I can crack on with dinner. I really love to cook and I always try to have a meal ready for the three of us at quarter to six when Lou walks in the door. After that I'm normally shattered but lately we've started going for a ramble up the town in the evening, it's nice to get out in the motor chair and see something else other than the four walls at home. When we come back from our 'walk', I try to catch up with any e-mails and bits and pieces that I've gotten during the day.

Next up is the biggest challenge, the stairs again and a shower before bed. Again I have to wait until there is someone in the house who could help me if I was to fall in the shower. All of this can take up to an hour because every step of the way and everything I reach for has to have total concentration, it's not always that long but when I'm on the edge of relapsing it would take an hour and shaving would be almost impossible.

I hope that this rather disjointed blog lets people know what my day is like and what it must be like for any number of people that have an illness or a disability.


I don't want anyone to think that my life is some kind of chore or that I'm not happy, I'm very happy with my life because I've seen and experienced a lot worse and coped just fine in my little bashed up mind. I've always said that you can only play the hand of cards that you're dealt and I'm happy with my lot.