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.
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.
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.
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
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.