Monday, 19 October 2009

So much to tell you!

OK, so there has been a lot happening in my life, over the past couple of months.
I started on Tysabri, I have given up work, I have had a portacath fitted and the one that I haven't told you about, is that Martin is giving up his job, to become my full time carer.

It has been a really difficult few months, I can tell you that, but when you come to a point in your life where there is a junction and you can go one way or the other, after a lot of discussions, this just seems to be the correct path to take.
It is not something that anyone can just decide to do, and I have to admit, we didn't realise how complicated it would be.
We had to be sure that this was what we both wanted. And to be absolutely honest, it is. It has come down to quality of life.
I had to be able to admit that I was struggling. I was struggling with work, it was causing too much stress, so that had to go. But then I am also struggling with things around the house. And that has been the difficult thing to admit. The fact that I am not able to do the washing up without pain, or do the cooking and cleaning. I am 36 years old, I shouldn't need help around the house. But the hard facts are, that I do.
I was also getting the portacath fitted and I need to go down to the hospital every four weeks for an infusion, so who did I want to help me with all of this. There was only one answer - Martin.
But Martin was already doing a full time job and he was also trying to do all the necessary things to help me around the house. He just couldn't do both.
The turning point came, when Martin had a week off work. That week was wonderful. We were both really chilled. I felt that he was very attentive to my needs, the housework was all done and we just felt really calm.
The solution to our problem seemed clear to us, but we had to see whether it was possible.
The first thing we did was to contact the CAB - Citizens Advice - because we knew that if they didn't have the answers, they would know someone who did! As it happens, in this area, there was an MS advocacy officer. She was able to come out to our house, go through everything we wanted to achieve and then tell us what was available to us.
After a lot of facts and figures whirling around, we had to decide whether it was something we could manage - financially, I mean. We both agreed that there were things that we could do without, so we worked it out accordingly.
We know that it won't be easy. It is a life changing decision and one that we will adapt to. But the important thing is that it is what we both want.
So Martin finishes work on Friday!
I am excited but also a little apprehensive. I am only apprehensive because we can't sort out the financial side until Martin finishes work. But once that is all sorted out, then I know we will be fine.
I had to be sure in my own mind, that this was what Martin wanted and that he wasn't doing it because he felt he had to. I guess I didn't want him to resent me a few years down the line, because the direction our life has gone, has been dictated by the MS. But when we discussed it, we both realised that this is our way of taking back some of the control. We are able to decide what and when and how, before we get to the point where the MS forces us to make these decisions.
I am so lucky. I have a man in my life, that is willing to do this for me.
Thank you Martin.
So Saturday 24th October 2009, is the start of our new life - bring it on!

The other thing I wanted to talk about today, is my portacath.
I have my fifth Tysabri infusion tomorrow and it will be the first time that we will be doing the whole procedure of using the port.
Although I have had some problems with the wound on my neck, the actual port wound has healed very well. I have a scar above my right breast, but that will fade in time, I am sure. I also have a scar on my neck, which I think will take longer to fade, but again, I think it will in time.
The one thing about it all though, was when we took the dressing off the port area and left it off, I got quite freaked out. I suddenly realised that someone had put a knife to me and planted something in my body. And I could feel it! It is getting easier to deal with but I would be lying if I said I wasn't scared about tomorrow.
I am terrified!
I know, by this time tomorrow, when the infusion is all done, I will wonder what I was worried about, but for now, I am scared.
I know that they will feel around for where it is, they will then pop a needle in - that is the bit I am freaking about! They will flush it etc and once that is all done, they will hook me up to the infusion and away we go.
I know that this will be far less stressful, than them having to cannulate me. That is why I have had this done. So I know that once tomorrow is done and I have got the first experience out of the way, I will be fine. It will be so much easier, for everyone involved.
I know all this, but I am still terrified!
So wish me luck!

1 comment:

  1. Hi Amelia,
    Great news about Martin being your full time carer.
    It is better and less stressful then him doing everything plus work and worrying about you all day while he is at work.
    This is the start of your new life together hope it feels good also hope your infusion went well last week.
    By the way my very good friend Angela (O'Brien) works for Citizens Advice, for a moment had not read your post properly and thought maybe Angela had been to see you, as I did know she went specially to see someone in Newton Abbot.
    Hope it was you she saw, find that a really nice idea that you had met a great friend of ours.
    Hope you are doing well.
    Look forward to hearing your news.
    Have a good day tomorrow.
    Love to you both.
    Big hug,