Wednesday, 28 October 2009

Our New Life Begins!

Saturday 24th October - the day our new life officially began!
Martin finished work on the Friday and that was that!
It was a strange week, because I had my 5th Tysabri infusion on the Tuesday and what a day that turned out to be!
It was my first infusion, where they were going to be using my portacath from scratch. I was a little apprehensive, but I wasn't going to stress myself out. Unfortunately, what did stress me out, was the fact that my appointment at the hospital was at 9.30am, the same as it is every four weeks. But we arrived there, to be met with chaos and to be asked if we could wait in the waiting area outside the ward. There ended up being four of us waiting for our infusions, sat outside in the waiting area.
Unfortunately, there had been a problem with beds over the previous weekend, which had had a knock on affect for everyone else. It couldn't be helped, but it was very frustrating. Especially as all four of us travel about 45 miles or so to get to the hospital in Plymouth, because they can't administer it in Torbay..................yet!!
In fact the majority of us, who are on Tysabri down here, are from the Teignbridge/Torbay area, rather than from Plymouth - daft eh?!
Anyway, at about 12.30pm, I was called through, as they had a recliner chair for me. But the next problem was, that I needed a registered nurse to be able to deal with my portacath. She didn't come along until about 2pm. I then had some cream put on, to numb the area for me. Then about 20 minutes later, the nurse came back. She popped a needle into the port and then flushed it and made sure it was working. Following all that, the infusion was started at 3pm!
I struggled with it to begin with, because it was so painful as it was going through. The pain spread right around the port and up into my neck. I thought I might have to stop it, which immediately upset me, because my first thought was that they would take it out and I just couldn't bare that. Anyway, I thought about how I was positioned when they administered the infusion straight after I had had the portacath fitted. I realised that I was lying down. So the chair was reclined and as the infusion progressed, so the pain subsided.
I was kept for my usual hour, after the infusion was complete, but at 5pm, my day at the hospital was complete and we were allowed to go home!
My Father, who had driven me down that day, had offered to give a fellow MSer a lift home, so we got to the car, we all piled in and I promptly fell asleep. This is fairly typical after an infusion, as the Tysabri tends to knock me out for about 24hrs after the infusion.
But I had successfully managed to get through the infusion, using my portacath. So fingers crossed, it will be less and less painful as we go along with it - only time will tell!!

Once that drama was finished with, we then got to Friday. I must admit, it was strange to wave Martin off for his last day at work. As I know it was strange for him to think he would be driving a bus for the last time! The whole day was quite surreal, because it was the same as any other day and yet it wasn't for us!
The weekend was pretty typical and nothing special. It hadn't really hit us at that point.
The week so far has been filled with trying to get forms to the correct places, filled out correctly, so that we can start getting the benefits that we are entitled to.
It is like wading through thick mud. And the most frustrating part of it, was the fact that we couldn't do anything, until Martin had finished work. We wanted to try and get it all processed, so that the money could start coming through once Martin had finished, but NO! We have to live on nothing for about six weeks or more, while they decide whether we are allowed to have the money or not!! You see our frustration!
But I will say this. Already I am feeling more relaxed. It is wonderful to have Martin around, making sure I am OK and helping me with all those "little" things that I have struggled with for so long. The house is already feeling tidier and we haven't started sorting out all the rooms properly yet. (Or got to the list that I have secretly been making - women are so good at making lists!) But the fact that Martin is here to be able to keep on top of it, feels wonderful.
We are eating dinner at a sensible time, instead of any time after 7.30pm, because he wouldn't get home until then when he was working.
It is already feeling so good.
Long may it continue!


  1. Woohoo for Martin's last day of work.

    You, and Martin, are very brave, and very strong.

    I hope that the paperwork gets sorted out soon...and you just get back to living.

  2. Hi Amelia,
    Hope everything gets sorted soon and you can get on with your lives.

  3. Amelia,
    I am so happy for you! I hope you are starting to notice a difference with the Tysabri. Please keep us posted as I am now looking at possibly having to go on it.

    Love and always thinking about you!