Wednesday, 10 March 2010

Tysabri number 10 & feeling pretty rough :(

So I have let things slip again! It's been a hectic few weeks, but I'm here again and there are several things to get you up to date with!

I have had my tenth infusion of Tysabri. The actual administering of the infusion went quite well this time. The nurse was able to get the needle into my portacath first time. We think that it may have something to do with the fact that I have lost some weight. The portacath is more prominent now and therefore maybe easier to access. Hopefully it will become even easier, the more weight that I lose - it is having more benefits than I first realised.
I have actually lost nearly two stone. I am so pleased. It has been just over ten weeks and I have lost 24lbs. I feel like this is falling into place. We are actively trying to lose weight, but neither of us feel like we are on a diet. It is just a change of life style. We are eating healthily and it feels good. Between us we have lost 40lbs - our sofa is breathing a sigh of relief!!
So back to the infusion, I had my usual reaction, where it knocked me out. I found it hard to keep my eyes open. I also started developing a headache, but I know that Tysabri can cause a headache after the infusion.
Martin drove me home, which was good, because I fell asleep, as usual, on the way home. The problem I had, was that it seemed to affect me for a while after the infusion. I had a permanent headache for over a week and I felt really knocked out. I couldn't stop sleeping! I was so tired.
I rang the MS nurse & I also went to see a GP. The problem with seeing a GP is that they don't have intimate knowledge of the therapies that we are taking. That makes it difficult for them to be able to give any advice or help.
It has been twelve days since my infusion and although the headache isn't permanently there now, it is still coming and going. I have never been one to suffer with headaches, so it is a bit frustrating. There doesn't seem to be any explanation, other than it's due to the infusion and that just makes it more frustrating!!
I am so tired too. I know I have the fatigue, but it seems to be more than that. I need to sleep so much. I only have to sit on the sofa for a little while and the next thing I know, I am asleep. The tiredness and the headaches together, have made things just a little difficult over the past couple of weeks.

Social services have been round to look at my bathroom situation. It actually upset me a little bit, because they wanted to look at other solutions rather than changing it into a wet room. I know that they have to look at all the possibilities, but my OT had already assessed what was needed in the bathroom and she had said that the best solution was to get rid of the bath because I can't get my legs over the bath without help. That was probably why I was feeling a little frustrated, because I thought we would be further along than we were! They did exchange my four slated bath board for a six slated one and that has proved to be a better thing. They also sorted out getting another grab rail put up.
I will be seeing my OT next week, so I can discuss it all with her, although I did phone her & let her know what had happened! She is on my side and fighting my corner, which is great to know and I am very lucky to have her.

My Dad came home in February - he is a Captain in the merchant navy and so he's away for 6/8 weeks at a time. It's great having him about because he has the time to help us get things sorted out in our house! It's his way of making sure that things are safe for me at home.
We are sorting out the kitchen this time he's home. We had a fridge/freezer, but we have sold that and got an under counter fridge & freezer. This will enable me to be able to sit and sort things out from them. It has opened up our kitchen and there is a lot more light now!
It's lovely, because having been in the house for over eight years, we are finally getting the house as we want it, putting our mark on it!
He has also put an extra piece of bannister at the bottom of our stairs. I hate having these things done, but my Dad goes ahead and does it anyway. It always turns out to be a really helpful thing, I just find it hard to accept that I need these aids in the first place!

Anyway, I hope everyone is doing well. Spring finally looks like it is making an appearance and the evenings are getting lighter.


  1. Hi Amelia! I hope the headaches and fatigue finally wore off. I had my 23rd infusion this past Monday and go for my MRI next Friday. *keeping fingers crossed* *no new lessions*

  2. Hi Amelia
    How are you hope well,
    You have not posted since March 10 hope all is well.

  3. Hello,

    Please could you go and visit The Wheel of Fortuna and leave a supportive message for Steve.

    His partner BobRobert is in the local hospice and is not expected to live much longer.

    It is not so long since his diagnosis which makes it all even more sad.

    Thanks for your support.


  4. Hi Amelia
    This must be my third comment on this post seems to go wrong each time.
    Hope you see this comment.
    Really concerned you are having a hard time, even harder it seems since the tsyabri.
    Hope you are havinga good week and enjoying your rehearsals.
    Have a good day.

  5. Hi,
    It has been awhile since I visited many blogs.
    Decided to do a quick visit to say hello to as many blogs as possible tonight..
    Nice to visit your blog its been ages, I am sure it will not be so long again especially now my life is getting better.
    I went out this afternoon for the first time since 19 August 2009 and it was brilliant.
    Lovely to feel my world getting bigger again after all this time in bed.
    Have a good evening and a pleasant day tomorrow.
    Please visit Steve @ The Wheel Of Fortuna

    Important we support him in the first weeks of his bereavement.