Tuesday, 21 July 2009

Relapse troubles.

Here I am again. It's been another tough week.
I am still in my relapse and unfortunately things have only got worse.
My right side is still very numb. The underside of my arm and the whole hand feel very strange. The sensations I have in them are very bizarre. It constantly feels like they are bigger than they are and that they have that "glove" feeling.
I can't really feel anything when it is in my right hand. And I am losing the strength in both the arm and hand. Just doing little things like brushing my hair and cleaning my teeth take a lot of concentration and energy to complete.
My right leg has the numbness in it and also feels like some of the power has gone. It is my arm that is causing most concern though.
I heard from the nurse again yesterday but I don't have a prescription for anything to help yet. So I am left dealing with this on my own again, without any medical help.
I had decided that I didn't want to go down the steroid route. I had two lots of steroids in March and just feel that I don't want to overdo it with my steroid in take. The problem is, that the decision is always mine and I am never sure that I am making the right one.
Is it right that I don't have anything to help me fight this?
It is now Wednesday. I had to stop writing yesterday. I was in too much pain and it was just getting me down that I felt really on my own in my fight.
Anyway, I managed to get hold of a GP at my surgery who was great and said that I am not alone and can always contact them if I need them. He arranged for a prescription for a pain relief patch to be done. I got that filled and have been able to put the patches on. It is a Butrans Pain Relief patch. The only problem is, that it takes a couple of days to get into the system. So I'm still having to wait for some relief.
This relapse has really knocked me sideways and I am quite shocked about that. I don't know why that is, but I am really struggling. I know the pain is bad and it is, REALLY bad, and the numbness is something I can't describe, but it's everything around that too. It is trying to do small everyday things and finding it hard to achieve.
But also, not being able to work is driving me mad. They are being really good about it - well I know they have to be. I have to go in next week for an appointment with the Occupational Health Advisor. I am not sure what I will say or what they will be able to help with, but time will tell. Along with not being able to work, is the fact that while I'm not working, I'm not getting the extra money that I earn. We do rely on that money and so I feel like I am letting Martin down. I feel that I am not contributing to our relationship, financially. It's not like that, and I know Martin is just concerned that I get myself sorted out, but it is another burden I put upon myself.
I spoke to the MS nurse this morning who told me to rest as much as possible and to do as little as I can. Try not to do the things that aggravate the pain. I know she is right but, wow, it's not easy.
Sleep has been another thing that has been quite elusive. And I know how much that can affect your mood and the way you look at situations. I don't like taking sleeping tablets but for a couple of nights, just to get your sleeping pattern back on track, it can sometimes be a necessity. Now is definitely one of those times.
OK so I am admitting a lot today!
I'm sorry that this seems to be another post where I am quite down, but I wanted, above all, for this to be an honest blog about about life with MS. That means I can't & won't sugar coat it for you, I will just hope that I can be a bit more positive very soon!
It also helps so much, to know that people who read this know what I am talking about. You give me so much comfort and support that I feel I can be honest and no-one will look at me any differently......................or at least I hope not!!
Big hugs

These are my favourite bears that I have all over my house!


  1. Hi Amelia,

    Really sorry to hear that you are having so much pain and discomfort.

    Hope pain relief kicks in soon and your MS nurse can give you the support you need.

    Stay strongand take it easy one step at a time.
    I am thinking alot about you and sending you a big hug.

  2. Sorry to hear you are not doing to well... :(
    Hope the MonSter will leave you again soon!!

    Take good care!

  3. Poor you. I really sympathise with the 'glove' feeling - I hope it gets better soon.
    Thinking of you

  4. So sorry to hear it is hurting you bad. No decision is 100% right or wrong- we can only decide from information available and with MS we have no future view.
    If you are to ill to work it is not your fault.What can you do? MS is made worse by stress so one thing you can do to help relieve the symptoms is stop worrying!
    I remember when I was in a show that song "Don't worry be happy" was being played every where. My poor director just exploded "Two days and six hours to first curtain half the cast are drunk the tech crew don't have a clue and the guitar player just walked out: I will bloody worry and refuse to be bloody happy!" and he smashed the radio against the wall.
    Thanks for the nice things you said on my blog.

  5. Ugh, I can understand how you feel. It's important that you do what's best for you.

    Hope you're day is a little easier today!

    Keep on S'myelin!