Sunday, 1 March 2009

Questions & ideas!

It's March 1st and we have had a lovely day today weather wise, could it be that spring is nearly upon us? It's amazing how a bit of sunshine can change a mood. 
Does good weather improve symptoms? Does a better mood improve symptoms? Of course it must have an effect of some sort. 
I find that I don't feel so down, but I don't find that my pain improves. Maybe I am just unlucky, in that my pain appears to be pretty aggressive, or maybe I just don't handle it that well. That is the issue with pain, how do you measure it from one person to the next? I would say that I have a high pain threshold. I can deal with quite a lot before I get irritable, but when it is constant pain, it becomes very wearing. 
I tend to have a problem with the cold and with the heat! I need it somewhere in between! When we had our cold spell earlier this year, I suffered really badly. I would get chilled right to the bone, and find it very difficult to get warm again. But also in the summer, with the heat, the pain can be unbearable. My hands will go bright red and swell. They become so painful, like someone has slashed them with razors. It doesn't happen every day though. There never seems to be a trigger and some hot days they can be ok, so does that make the heat an influence or not?

My feet are constantly painfully numb and have been ever since my symptoms started in 2002. Then when I had a major relapse in 2003, my legs went. I couldn't lift them up or control them and that is when I started using crutches. I did change to sticks at one point but I am back to the crutches again. I find that they give me more stability.
It can be very off putting when you can't feel where your feet are. I guess that is why I use the crutches. I am certainly more confident with them and I am able to walk more quickly with them. I had a few falls when I have been out, before I used crutches, where my legs would just give way and I would fall. So I think it is a confidence thing too. I would rather use the crutches than risk having another fall. 
I often wonder to myself whether I should be using them or not. I wonder whether I am just being lazy? I generally get around my house without the crutches but only because I know where everything is and I have lots of things to hold on to. But it does make me question whether I could manage outdoors? 
Then there came the question of a mobility scooter. It took me a long time to even consider it and it was only when we went on a holiday to Florida and I used them there, that I realised how much more it allowed me to do. I was lucky enough to get a grant to purchase one last year. I have a portable one so that we can put it in the car. I still have a hang up about using it, but it is getting smaller with each use! Again, I couldn't get this idea that I was just being lazy, out of my head. But the more I have used it the more I know that it is an energy saving aid. It also helps me with not being in so much pain. 
I tend to use it to get me into work. It stops me having to get the bus which involves a fair bit of walking, where as using the scooter takes me from my door to theirs! 

Yes, the above picture is my baby, it is now covered with Me To You stickers!!

I still don't use it in town etc, which I should really. I would rather struggle and be in pain and exhausted than quosh my pride and just get on and use it!! What am I like??? 
While I am writing this I know how silly I sound and I am thinking I just need to get on and use it without thinking about it so much! 
I shall do a future post about my car, now that is something I would be lost without!


  1. Use the aids to save energy for things that can't be done by machines. It is not lazy it is good management. You are having a real hard time and deserve every bit of help you can get.
    Herrad lost mobility too quickly to ever use her scoot-mobile (could no longer transfer) but got an electric handbike that attaches to her wheelchair. I hope she can still use it when she can sit again- I fear she may have lost arm strength and hand control. When she got it she went crazy! It was such a freedom to be able to move by her self again.
    Car bah... OK you can have one but most people should get on their bikes!

  2. Hi Amelia,

    It's brilliant you are using your mobility scooter so that it can take some of the strain and pain out of your life.

    Think using crutches distributes the weight better than holding on to things.

    Recomend putting handholds/
    rails up by the toilet, bath/shower and washbasin, they are very useful.

    And again better for your balance then not having them.

    Take care.