On the whole, I have been very well for the past few years and have been feeling pretty pleased with myself. I have a numb left hand most of the time but it’s not my dominant hand so I manage. My toes are usually quite numb/tingly and I’ve become used to that too.
However for the past three weeks or so my feet have become numb a lot more often and for longer. Now they are numb as soon as I’ve stood in the shower for five minutes and the numbness goes right up my right calf so I feel as if I have a plaster cast on. My left arm is numb and stiff right up almost to the shoulder and my left fingers are completely numb. In fact I very nearly picked up a hot casserole dish the other day as I felt like I already had the oven glove on - luckily I have learnt to concentrate when I’m cooking due to past incidents so I just stopped myself!
I did mention this to my nurse at the end of February and she logged it and said if things got worse I could call back but neither of us were keen for me to have steroids just yet. At the time it was just my feet that were going numb and it wasn’t progressing up my calf. My fatigue and brain fog are getting worse too.
My main concern is that I cannot walk very far at all now because I keep stumbling and I’m worried I’m actually going to fall. I work at a school and I give it 10 minutes to be sure most of the kids have gone before I walk to the car so they can’t hurtle past and knock me off balance as my balance is poor at the moment too. I’m beginning to think I may need a stick but I don’t know how to use one and emotionally it’s a huge hurdle for me because up to now I haven’t looked remotely disabled. I know it’s stubborn pride but that’s the way I am. I suppose what I’m dreading is all the people who think I am healthy will ask what I have done to need a stick and I will have to admit that I have a lifelong incurable condition. I guess I haven’t accepted things as well as I thought I had because even typing that brings tears to my eyes.
So shoot me down in flames and tell me I’m being ridiculous because I need to hear it. Also I need advice on how to use a stick.
My mum’s stick is still sitting down at dad’s house and I’m sure he would be glad for me to use it (mum passed away 14 months away) but I haven’t a clue how to use one. Do I use it on the good side or the bad side? Any advice gratefully received and I will try it in the privacy of home first as I now have a large living room and even going up and down the room twice is a struggle! I suppose I will have to find my sense of humour again. The other night my son and I were laughing as my right leg had the twitches and the left one was stiff and seized up and I said I was going to go round and round in circles if that continued for long