Thursday, 14 January 2010

What a week!

It's been quite an eventful week this week. I have had deliveries, my infusion and a possible date for changing my car!

So it was Tysabri infusion number eight on Tuesday.
It went OK, although I was struggling with pain a lot, so I had trouble emotionally. The infusion itself was alright but it knocked me out again, as it seems to do every time I have it. I fell asleep in the car on the way home and then slept quite a bit once I was home.
While I was at the hospital, I had a word with the MS nurse about my pain. I told her, how I feel that I am doing something wrong, because nothing I do seems to help - and believe me I have tried lots of things - she assured me that it isn't anything that I am doing or not doing. It is just one of those tough things, I have symptoms that cause me a lot of pain and it is just incredibly hard to manage those symptoms.
They have done a referral for me to the local pain clinic, but I have been waiting for so long for anything to come of it. I was assured on Tuesday, that the referral had been done and I just needed to wait for a date, but she would chase it up for me though.
Yesterday I got a phone call offering me an appointment, it's on February 17th! So I am keeping my fingers crossed that they can come up with something new to help.
On Monday, I got a surprise.
I had a phone call from someone saying they had a wheelchair to deliver to me and could they deliver it that afternoon! It was a bolt out of the blue. I knew the referral had gone off, but I was expecting to have to go up to Exeter to try it out first!
So I have my own wheelchair!
Because I wasn't expecting it, it threw me a little bit. I haven't really got my head around having one yet. I know it will help me and will allow me to have more energy etc, but actually using it is another matter! Because I can still walk, even if it is with crutches and using the crutches hurts my hands, I still feel that I should be walking.
Anyway it is sitting in the living room at the moment. It is good to have it there, so that I can look at it and get my head together about it. I did think about hiding it away somewhere, but I think this is better!
I have also decided to customise it with some of my Me To You stickers! I am a huge fan of the Me To You bear - the tatty teddy with the blue nose. I have collected a huge number of the figurines and a large number of the soft bears and now they have bought out blue nose friends, so I am having fun collecting those now too! So I figure that this will be a good way to make the chair my own!
On the same day that the chair was delivered, I also had a call from social services about fitting a grab rail in my bathroom. He wanted to know if he could pop round that afternoon, which was fine, so I now have a rail up in the bathroom too.
I hate having these things put up in the house for me, although I know that it does make things easier for me. It's the principal of it though!
The final thing that has happened this week, is that I rang the garage where I am getting my new car from. I knew that the date for me to give my PT Cruiser back is January 20th, but I wasn't sure when they were expecting the new car to come in. I have been told that they are expecting it in at the end of this week. They have contacted the people who put the adaptions in and as long as it goes to plan, then I should be able to exchange my car on the correct day - January 20th! I will be sad to give the PT back, because it has been a great car to own (apart from the fuel consumption) but it is always exciting, getting a new car! I know that I have made the right decision getting a car that I can drive, and not spending so much on fuel will be a welcome bonus!

I hope everyone is coping OK, especially with this cold spell we have been having.
Take care!


  1. Hi Amelia
    This is my first visit to your blog and I found it very interesting.
    Yesterday I tripped over an article about JLS and one of the boys' mothers having MS and one of the comments suggested he get his mum to look into LDN (Low Dose Naltrexone). This drug is very effective at slowing down/halting disease progression especially in MS. Petitions have been submitted to 10 Downing St, the Scottish Parliament and now the European Parliament. Please go to the website and support our petition to the EU and find out more information about LDN.

    I found another link just now: - So it appears to be approved for sale in the USA but now in the UK.

    What do you know about that?

    I don't have MS but my sister-in-law does. She's in Belgium and I'm trying to support her with information so she can make choices. Before you started your Tysabri infustions, did you pursue other avenues?



  2. Sorry Amelia, I typed in the wrong URL for my blog!!!

  3. Hi Amelia,
    Good news about your new car, the grab rail, the pain clinic appointment and your wheelchair.
    Hope you were measured for your wheelchair so you have the correct size for you.
    I think it is great for you to have one when you need it.
    Hope you have a good weekend.
    Keep warm and optimistic.

  4. Hi Amelia,
    Just came by to say hello.