Friday, 13 March 2009

Strange numbness - but it's painful??

Another day, another symptom.
That's not strictly true. It is an extension of symptoms I already have. 
The tingly numbness that started last week, has now spread. As well as being in my right hand and right leg, it has now spread up my back, up my arm and into my head. All on the right side. Then this afternoon, I realized that it has now gone into my face. It seems to be spreading by the hour.
I really can't explain how this feels. But it is very weird. The pain just on it's own was enough to drive me crazy, but now with this tingly numbness as well, I am climbing the walls. 
My right ear feels as though it isn't there. Obviously it is otherwise my glasses would fall off! But because of the strange feeling around my ear, I also feel as though it is affecting my hearing on that side. 
It's almost as though that side of my body feels twice the size it is. I have felt that with my legs before but not my head. I have just realized that it feels as though I have got a balaclava over the right side of my head???
I also feel as though my right leg is getting weaker. It feels like I am dragging it around - like I am dragging a lead weight around. It doesn't look as bad as it feels but it is very odd.
I have also felt, occasionally today, like these symptoms are in my left hand and foot. I am putting that to the back of mind though and pretending it's not happening. If it does progress, I will deal with it then!

I wasn't going to say this but I've decided that I am not ashamed to admit that I'm scared.
As I have said before I am staying positive and carrying on with as much as I can - this time next week, I will be in the middle of my first concert!! 
But, what if this carries on like this. Obviously I am hoping that I will get the steroids soon and that they will have an effect. But I have struggled in the past with steroids not doing much for me. I have them each time, with the hope that this time it will be different, and yes, sometimes, things do slightly improve, but they never go away completely.
In the six years since the onset of my first symptoms, I have not had a single day where I haven't had those symptoms. Some days can be better than others, but they are always there. 
What if these symptoms don't go away? Can I handle this pain, numbness and general strangeness of the change in sensations of my body? I guess that eventually I will get used to it, like I have with all the others, but I still find it scary.

I went into work again today. I am getting quite frustrated that they have this impression that I am just constantly upset. Yes, the last couple of weeks have been trying, but I am not upset about the amount of work I am able to do (or not). If anything I am proud of what I am achieving, even under these circumstances. They don't seem to understand that I am upset because of the pain that I am in. It's that favourite thing of, they can't see it so what am I talking about? 
There is talk of me going in the office, permanently. On one hand that would be good, because I wouldn't be under so much pressure, but part of my reason for taking this job was, that it gets me out of the house, I am on the checkouts, so I have to talk to people. That for me is a pleasure. Do I really want to be couped up in the office all the time?
I am due to go in again in the morning, but I will have to see how I am tomorrow. If this numbness is still as persistent, then I'm not sure I will be able to handle a busy Saturday. Plus the fact that I am exhausted. Just signing in is taking up all my energy, then walking down to the checkouts, it's one challenge after another.
Anyway, one day closer to Monday. That's got to be a good thing!


  1. Hello Amelia,
    How horrible for you.
    Thinking of you lots.
    Take care.

  2. Hello Amelia,

    Woke up wondering how you are today.
    Hope you have a good day today.

  3. Herrad is sometimes very very scared- or is it that she always is very scared but has got better at dealing with it.
    MS pain (is it called neuropathy or something?) is something I do not believe can be understood unless experienced- when I was a bad boy I got hit bit a baton round (rubber bullet). It was a direct hit on the funny bone and it left my whole arm hurting, pins and needles and just plain weird feeling. After a few days it eased and in a month it stopped. That is as close I have experienced to the pain Herrad goes through. I was totally wiped out by the experience. It must be exhausting for you mentally as well as physically. I hope you can lose yourself in the music and get something from the weekend.
    My enjoyment of the weekend is only threatened by fifteen men wearing green shirts in Edinburgh.

  4. mines on left side amelia.i know the feeling well you describe.we be scared together ok??its ok to be scared love.keep positive,love mort xxx

  5. Chin up girl you know your strong and will cope with this. You only understand neuropathic pain if you've suffered it like all MS'ers. I have a number of conditions people can't see adn I know how frustrating it is when people don't realise what we go through - I have Infertility, a back injury, depression and MS but all the public can see is Obesity which is secondary to all the other conditions. Hang on in there Ames and always remember we are here for you. Keep blogging and singing - you're our little songbird!

  6. I recently started with the same symptoms on my right side. I can not tell you what it meant to find your blog...They are doing testing. MRI and EMG. I was so scared! I thought I had had a stroke. Im still scared. But I feel better knowing that I am not the only one. And this creapy itchy painful numbness is not just me.

  7. hi my name is kamila i'm 21 yrs. old i happened to come here on your website as i was searching for some answers about the painful and burning feeling in my right hand.I know ppl think its not a big deal but now almost everynight i cant sleep(i'm pregnant 8 weeks but i've had that problem for couple yrs. now)its like there is nothing i can do to make it stop i used to start excercising etc. in the middle of the night just to be able to go back to sleep but now i have to get up because that doesn't even help anymore.As i'm writing this it's been like what 2 min.s i'm starting to have that tingling already in my right hand...The interesting thing is that i am very forgetful to the point where i cant recall little things from the previous day i wonder if that has anything to do with this pain and numbness....if you need a friend to talk to i wold love to be there for you...