Friday, 6 May 2016

Paying the price for daring to go out. I hate MS

I have just written in one of my other blogs KENTALLINONEPLACE'S BLOG
I am sitting here knackered because I dared to be human and go out and enjoy the world. I only went in the wheelchair for a few hundred yards and ate a bacon sandwich and drank coffee looking at the sea. Not a lot is it but the effort of getting in and out of the car and even talking has worn me out. I was reading on the Multiple Sclerosis sites forum how one lady was so hacked off having to explain to others how the simple effort of just living with MS is exhausting, you have no plasters or bandages or obvious signs of the turmoil your body is going through just to get through each day. All the problems are internal I am sitting here and my legs feel like every nerve end wants to burst through my skin and escape from my body. My joints in my hands as I type this are on fire my little finger wants to wander off and it is a constant battle to make it obey my requirements. All  these little things are a daily battle with my body that in itself exhausts me and then all the other bits make me feel constantly fatigued not just tired I mean constantly exhausted.
All of these little battles go on unnoticed it is what I have to put up with every minute of everyday even when sleeping so when I sleep I wake exhausted. And then as the person on the forum said someone says "oh you are looking so good" and I want to scream at them and tell them I feel absolutely awful but if I did I wouldn't use polite words. But instead I say "i'm okay"or "I am fine thank you" No one wants to really know what battles I am fighting physical or mental. Sometimes it does affect me mentally. I have often written about my most important two tablets each day are the two antidepressants. My mental crutches my support network for my brain. I can get into some dark places if I dont take them, very dark and I dont want to go there I am bad enough to live with on antidepressants but if I do get depressed I am awful.
I am not writing this for sympathy. I dont need sympathy I need understanding  and I am also writing this for others who find themselves in similar positions to myself. I look and I  talk as if nothing is wrong but inside I am a wreck, my body is broken and even with all the progress in medical understanding and drugs my body is a wreck, my nervous system has burnt out and those billions of nerve endings that are trying to escape wont ever be repaired. So if I say I am fine when you askplease dont say you are looking well because looks can be deceptive.


  1. feel your pain Don, i cant even have a telephone conversation without feeling totally exhausted,i hardly ever get out these days because when i do i suffer for days after.
    Jackie x

    1. Jackie it is the days after that hurt not just physically but mentally, it drives me mad that a once extremely healthy body in now so weak. GGGRRRR
      Don X

  2. Hi Don. I trotted over here via your link from the MES forum. From now on, when asked how I am, I'm going to suggest that those who ask have a look at that forum, this site. The truth & honesty that spews forth, telling it how it is, it will be a revelation for them.
    Go Don, thank you.

    1. Loulla thank you. I am ok but after reading someone elses blog it inspired me to actually think about how I actually feel. To me it is normal but not the norm if you understand my meaning, As I said I dont want sympathy its just how it is and sympathy wont and dont help. But to be understood .............. SIGNING OFF NOW XX Don


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