Tuesday, 10 March 2009
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!