I can now see light at the end of the tunnel
Now I can now see light at the end of the tunnel
Someone told me my last couple of blogs were not optimistic, Guilty as charged. In my defence I say that advanced multiple sclerosis is a gritty disabling disease. It is always there, in your face and in your head. There is no escape from it. The good news is that in my head I can now see light at the end of the tunnel.
Recently
My quality of life took a bit of a dip over the summer. The excitement of living a life that is a mental and physical challenge suddenly stopped. Plus my MS problems just got bigger. Life became a bit flat, no more ‘living on the edge’.
Okay we had a fabulous time in New York City. Nonetheless even there I had a couple of low points.
What’s happening?
We all know multiple sclerosis will lob curveballs at you with monotonous regularity. There is no point in trying to catch them and throw them back. Who or what is the target? Instead I must learn to dodge the curveballs. I dodge then by listening to my body but my brain can be slow to react. That’s a problem.
Put it differently
When something goes wrong, and I mean horribly wrong, then it is essential that I learn a new trick. The new trick almost always involves listening to my body. At times the signals that my body is telling me can be very subtle, sometimes too subtle. Eventually MS will ram the point home enough times that even little old me will learn that a serious problem is imminent.
Uhthoff’s phenomenon
I have learned the hard way that my body shuts down if it gets too hot. So I have learnt to keep out of the sun when it is too hot, say 25C. I won’t venture outside the house even if it’s cloudy. If I have a temperature because of a bug then my body will also be a useless blob. Same problem but it is in totally different circumstances.
If I get too hot my legs don’t work and my head hurts. I must go to bed and sleep it off. Scary but that is part of my life with MS, it’s getting worse and it took a while to recognise the problem. Its called Uhthoff’s phenomenon and it is a relatively new curveball
The problem
A root cause of me feeling down in the dumps is doing nothing. I thrive on being busy, getting out of the house, meeting other people and feeling valued. All these parts of my life go out of the window during the summer and this year the weather was grotty. When left to my own devices I get grumpy.
I can now definitely see light at the end of the tunnel
I have learnt a painful lesson over last couple of years. Doing nothing is bad for me. Next summer I must keep busy. Do more sitting-down gardening or take more photos with my phone.
Next year I will definitely find a project so that I feel positive and appreciated. I must continue to challenge myself, it makes me feel good.
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October 2019
Hi Patrick,
So glad you can see light at the end of the tunnel.
Doing nothing is bad for me too. You definately need a project. I find gardening really uplifting.
I hope we get to catch up again sometime.
Hello Lisa
The summer was a bit of a battle. I need a rolling project that keeps me busy, out of the house and engaging with people. Service user work grinds to a halt over the summer and did not realise how much I depend upon it.
We must meet up and catch up sometime I still go up to the Royal London cos I’m involved with Bart’s MS group. Dp you remember the old Royal London hospital building. The facade is being preserved and it is being converted into housing and the CMC building has gone as well. You would hardly recognise the area now
Understand. If I want to do anything out of the ordinary, ie go out somewhere with my husband, that requires a day in bed before and after, minimum/
Good news is that PPMS is one of the illnesses that’s recognised by the DWP for ESA as going straight through to the support group – which in turn has a knock on effect on PIP. So yes, light at the end of the tunnel.
Hello Patreesha,
Planning and preparation are essential to being able to enjoy things. If you’ve gotta rest then rest. My problem after all these years is realising how much longer it take to do anything. I’ve also discovered the importance of listening to my body
How honest of you to hold your hands up and share what has been happening to you. Listening and acting on the comment ‘not sounding so positive’. Having said that, blooming hard to keep positive with what you struggle with Patrick!,,,
Warm fuzzies
Hello Eileen,
Thanks for the lovely comment. Being positive is my blood and the website is part of my strategy to retain my quality of life. Some people knit, others bake but I write about my MS
This is a good posting. I have progressive multiple sclerosis and sometimes it gets me down. I have to sleep after a busy trip and it takes time for my body to catch up.
The heat sensitivity is real. Thanks for the posting.
Hello Allan,
Many thanks for the compliment. Too often people see MS as a physical problem but the mental side is much bigger and now people are waking up to this problem.
So many of my friends who have MS also have temperature issues. I really feel the cold, my feet are always chilly, and must also keep out of the sun
Glad to have you back!
Hello Joanne,
Feels better to be back in the driving seat