Tuesday, 23 June 2009

One week to go!

Hi everyone,
I can't believe that I haven't been on here for so long, but I had an awful week last week and wasn't up to doing anything.
Don't you just hate it when it hits you like that. I was so wiped out. Fatigue just took over and that mixed with pain from my hands was really not a good combination. I didn't go into work on Friday, so that will tell you how bad I felt!!
That is one of the most frustrating things about MS. I know that I am generally not going to feel great on a daily basis, but you never know when it is going to just knock you out!

I am now only a week away from my first Tysabri infusion. I am trying to stay calm and positive about the whole experience, but I have to admit, I am getting more nervous as the day gets closer! Martin & I have had a lot of discussions about the treatment and we have decided that my consultant and MS nurse wouldn't have suggested it if they didn't truly believe that it would do me some good. I have to trust that they are suggesting what is in my best interest.
I have to admit, I am nervous about the nurses being able to find my veins. Knowing what a nightmare it is when I have steroids, it is the part of the treatment that fills me with dread. But, again, I have to trust that the nurses will be able to locate my pesky veins. There must be others like me out there, that have difficult veins, they must have come across it before!! Well only time will tell!

I have to tell you about a friend of mine - Mandy Riley - and what she did on Sunday.
Mandy took part in her very first half marathon. It was in Torbay and meant running from Paignton to Torquay and back twice. And I felt very humbled because she was running to raise money for the Multiple Sclerosis Society.
She completed the course in a very respectable 2 hours and 26 minutes and she has raised about £260. How brilliant is that!
I am very good friends with her mum. In fact Jeane had come with me to the hospital and sat with me when I had my last course of steroids. Mandy had heard all about me through her mum! So, I believe, that is one of the reasons she chose to run for the MS Society.
I am not one to go around, letting the world know how difficult things are for me as an individual, but I guess her mum had seen it first hand and relayed that back to Mandy. I was very choked that someone would put themselves through running 13 miles, because they wanted to help me and everyone else who has MS.
Of course we went down to Torquay on Sunday to give her our support. And I have to admit, it gave me a real lift to see her doing so well. It restores my faith in human nature when you see what people will do for others.
I have thanked Mandy numerous times, but I would like to publicly say how amazing she is and that what she did meant the world to me. It is because of people like her, that people like me can get the support that we need from the society. Thanks so much Mandy.
Martin took some pictures, which I will attach here.

I must just say hello to Emma - look I've written my blog at last!! XxXxX


  1. Ah Amelia thank you so much for your very kind words - it was an honour to run for the MS Society and i just hope that, although i raised only a little, that it will go towards helping someone, somewhere, some day. I think you are extremley brave and i know that you were with me every step of those 13 miles ! i wish you lots and lots of luck for next week and hope that it isn't too painful for you. Catch up very very soon Love and big hugs Mandy x x x

  2. Firstly, well done Mandy and Thank You from every person like Amelia and myself with the dreaded condition MS. You did so well and should be very proud of yourself.

    Amelia the odds of suffering Tysabri side effects sound pretty good to me, I've just checked and the chances of dying in a car accident is 1:6500 (www.reason.com/news/show/36765.html) lots of odds of different things - American site though.

    I have "iffy" veins too but my MS Nurse found one today without problem. Must admit that when I was a Practice Nurse (and had the use of my fingers for fine dextrous tasks!)it was always easier to find veins in warmer weather as the blood vessels come up to the surface to cool the blood down. Keep yourself well hydrated and you'll be fine I'm sure.

    Keep up the blogging, it is therapeutic and I must update mine - I lead such an uneventful life really - or am I just too busy enjoying Island life.

    Take lots of care.