Tuesday, 10 March 2009

Staying Positive!

But it is so hard!
The pain is still an ongoing issue, but over the weekend new things have happened.  
I woke up on Sunday morning, with a lot of pain in my feet. There is always pain in my feet but for it to be that noticeable when I woke up was unusual. My right hand has been getting more painful and again on Sunday it was feeling quite numb too. When I say numb, I mean I can feel it because it is painful but it is a very alien sensation. Probably the closest I can come is when you have pins and needles and you are just getting the feeling to come back. There is a moment when the pins and needles feel really painful. Well imagine that and times it by 10. That is my best guess. 
I carried on through Sunday, feeling pretty low.
I woke up on Monday, only to realise that the whole of my right side now has this painfully numb sensation. My hand is worse and my leg feels like someone has wrapped a really tight band around my leg and is still pulling it tight. Really pleasant!
I decided to talk to my MS nurse, but she wasn't there so I called my GP and got an appointment for the early evening. He felt that it is a relapse. I hate that word! 
He felt that the best thing to do would be to try a course of steroids. He did the prescription and I got it filled. I got home and had a look at it but realised that this was a very low dose of steroids.
Usually for a relapse they prescribe either steroids by IV, which is a three day course of 3 infusions 1000 mg a day. Total of 3000 mg. They sometimes prescribe oral ones, which is a five day course of tablets 500 mg a day. Total of 2500 mg. The ones the doctor gave me yesterday was a course over about two weeks but the total was only 800 mg. 
I decided that I would try and get hold of the MS nurse again, before I started the steroids and luckily this morning I managed to speak to her. She had a meeting set up with my consultant this morning so was going to speak to him and then get back to me. 
I spoke to her again this afternoon, but I am so upset and frustrated.
They want me to have an MRI scan. They also want me to have steroids but IV ones. They can't guarantee anything because quite often I have not had success with steroids. The nurse is going to book me in but said that it might be the end of March before I have them. She will see if there are any cancellations but no promises. My consultant is going to do the referral for the pain clinic but again it all takes time. 
I am upset and frustrated because all these things are in the pipeline, but what am I supposed to do today, Now??
The pain isn't going away. My MS nurse said to stay positive because things do get better. That is fine and I understand that but it doesn't help me get through today. 
I know I sound like a right little drama queen and I don't mean to, but this is one of the sides to MS that people try to hide away - I know I usually do. 
I don't like people seeing me like this but I have to let it out somewhere and I decided to do it on here today! How else do you get the full picture. I told you sometimes it might not be pretty. 
I am doing my best to stay positive but it's pretty difficult when I am in pain and have these alien feelings all over my body.
I have also realised that with my singing taking off again, I have eight gigs over the next six weeks, talk about diving back into it!! Along with work, of course!
I am determined to do it too, please don't tell me I shouldn't. 
I have waited a long time to get my confidence back and to feel the pleasure from singing that I am now getting. Yes, I am nervous about the concerts but not in a panicky way. I am excited and looking forward to them. I am not stressing out about them as I thought might happen.
It's typical, I feel good about things in my life, I have an amazing husband, we have two gorgeous cats. I am singing again and then wham, a relapse. 
Welcome to the wonderful world of Multiple Sclerosis!


  1. UGH!! They can't get you set up for IV steroids until the end of the month? They are so much more effective when started early in the relapse. Could you at least get the 500mg/daily of oral steroids for now?

  2. Take care sweetheart. I hate to hear how bad it is but I am glad you can share it. I know blogging has helped Herrad cope with this intolerable disease. I cant think what else to say- I just send all my love to you and Martin and the cats.

  3. Lisa, they don't want me to have the oral ones because they aren't strong enough. I have had difficulties in the past with steroids not helping, so they want to go straight for the IV, but unless there is a cancellation I could be waiting a while. It is very annoying and doesn't seem fair.

    Richie, thanks so much for your thoughts. I am so glad I am doing this blog, because it really is giving me an outlet to vent my frustration. It is also great to be getting the support from you guys. After feeling alone from the medical profession, I don't feel alone with all my friends.
    Thanks everyone.

  4. Hi Amelia,

    How horrible for you hope there is a cancellation very soon.

    Thinking about you.

    Take care.



  5. i know its hard amelia,i have the pins and needles all the time,its like you plunged your hands into stinging nettles.im sorry but sometimes we have to accept we are going to have these "episodes" ( the pratt who called them that once to me had his spleen ripped out.lol.)and ive also got it bad hun.you keep positive ok??you are doing great,just hope you get relief soon.four letter wording MS is evil amelia,you take care,love mort xx

  6. Yes, staying positive is very important, but I loathe when a well person says it to someone who is old or who is sick. It is quite easier said than done. Living with the repercussions of each problem, tis harder than most of us know.

    I am glad for your excitement & anticipation.
    I don't know where I found your blog, but I do know you have great courage :-)~Mary

  7. I can't believe your MS nurse told you to stay positive. That's pretty condescending, and easy for her to say when she's not the one in pain.

    Your kitties are beautiful. I'm glad I found your blog. Hang in there. maryann

  8. Thanks everyone! I appreciate all your comments and am glad to see a couple of new people here!
    I am just writing my post for today, updating on the situation!
    I am doing my best to stay positive, but being in this pain is proving a tough one right now!

    Thanks for all your love & support,
    My heart goes out to all of you.
    Big hugs
    Amelia XxXxX