Who knows where the time goes?
Back in the day I used to get up just after 7, help my wife get the children up, have breakfast and be at work by 9. Nowadays I get up by 8.30 and I’m not downstairs eating breakfast until 9.30.
That was all 20 years ago
Who knows where the time goes? It’s not only that I’m getting older, doing things with progressive MS quite simply takes more time. The diagnosis was in 1994 and I was 40. Six years later when it morphed into SPMS I still I led an incredibly busy life.
MS has changed my life
I could never have envisaged myself in 1997, twenty years ago, as I am now. Nowadays my muscles are stiff and I can’t walk without a constant companion, more popularly known as a walking aid. The stick was rejected a few years ago Now I have a choice of three companions; a rollator, The Trike, a mobility scooter or a two wheeled walking frame.
The MS has slowly changed from mild irritation to a significant irritant. I have managed to cope with the curved balls of disability quite well. Occasionally these problems do get the better me. A few minutes of quiet reflection when MS has got the better of me and I always bounce back. Something else has changed as well. It took me a long time to figure out the problem
Who knows where the time goes?
Nowadays MS is a huge part of my life. I cannot ignore it. There is the disability. Consequently everything just takes so much longer? I don’t bounce around anymore. Instead I ooze around. Oozing is slow and it takes a huge amount of time.
Getting dressed in the morning
Back in the day I could wash, shave, get dressed and brush my hair in a few minutes. Nowadays I must allow a minimum of three quarters of an hour. I ooze into my clothes. Going down stairs has gone from seconds to minutes.
I’m sitting in a chair
The phone goes and I want to stand up. Its all an ooze. Not only does it take longer but it may well take several attempts to ooze from sitting to standing. Then before I move I must make sure that my leg or FES is turned on. Finally I shuffle to the phone and but then it stops ringing before I get there. Have you noticed that this never happens in films?
Going to the loo
It used to take only a minute or two but now its five minutes. My flow is not slower. It’s the faffing around with a catheter and doing up the buttons and zips afterwards that takes so long.
MS is a thief
Its stealing my time but there are things I hope MS won’t touch. One is my love for music. So here is the Fairport Convention song ‘Who Knows Where The Time Goes?’ that is the title to this blog.
Nice post Patrick. I feel the same frustrations having PLS type motor neurone disease. You mentioned your scooter (still the TravelScoot?) – have you ever taken it on public transport? If you have, do you have any tips on not getting into difficulties? I have to travel to London a few times soon and I have not taken my TravelScoot on the train yet. It’s a daunting prospect. I can’t travel with crutches on the train anymore. I like the phone reference in your post. Delivery companies should tell their drivers to wait longer too! I’ve had some about to drive away by the time I open the door because I was not quick enough.
Yes I still use the Travelscoot, wherre would I be without it? 🙂
You will find that railway station staff are very helpful when it comes to putting a ramp down at the dissabled section of the train so that you can drive on and off. A phone call is necessary. Station staff ae very helpful in my experience I have travelled by train quite extensively and there has never been a problem except at Edunburgh where there was confusion over the carriage I was in.
London buses have a ramp but do take a companion who tells the driver when you want to get off they have to put the ramp out. Be diplomatic.
Re delivery drivers have you thought of putting a message on the door explaining the problem
A smile always goes a long way as I am sure you know. Also ‘Thanks’ is also a real winner.
Ooze. Great comment!
Ooze! Great way of describing…
Yea I thought ooze described perfectly for me what it is like to get from A to B.
Good luck with the botox, I had my first botox there 6 or more years ago. Its amazing and gives you more time for other things rather than toilet hunting and you can sleep for hours. Allow 48 hrs for it to start working .
Going into it with an open mind. Its got to be a better life 🙂
Oh that ringing phone! No sooner have I got to the landline than it stops raining and the mobile starts. I get to the mobile and – you guessed it – I’m too late again.
Yup you’ve got it. That’s when the toast lands sticky side down