Monday, 21 September 2009
............... is the day for my fourth Tysabri infusion.
BUT before they do the infusion, I am going to be fitted with a portacath!
The normal procedure for the Tysabri, is to be cannulated and then the infusion is hooked up. The infusion normally takes about an hour and then once that has all gone through, they keep you there for an hour afterwards, to make sure there are no adverse effects. Then you can go home - where for me, I fall asleep for quite a long time!
My one concern, right from the start, has been about the cannulation. I am a nightmare to cannulate. Apparently, I have tiny veins and they are buried very deep. But it is not only the fact that they can't find my veins. Once they find them and put the needle in, I experience a huge amount of pain. My skin is incredibly sensitive but also, I suffer with painful, altered sensations as well. So putting a needle in, is just torture for me.
I have had three infusions so far. The first time, they had three attempts, which I considered a success. The second time, the nurse tried three times, then they called a doctor, who tried twice and she couldn't do it. She went off to speak to someone else, who suggested putting my hands in hot water. Apparently, this is not allowed anymore, but needs must. After the hot water, the doctor tried a couple of areas and eventually got it done. At this point, it was suggested that maybe they should consider putting a line in.
After going away and thinking about it, I decided that I would like to go for that, so I got on to my MS nurse, to try and arrange it. I went down for my third infusion, thinking they had arranged for this to be done. They had, but they weren't sure whether it was necessary! I went ahead with the cannulation, once again. They did the hot water thing and the nurse eventually found a vein to try and she managed it, but not without an enormous amount of pain to me, again. This time, the infusion was quite painful when it went through too, but I put up with it because I didn't want to be cannulated again. This made me realise that it was only going to get harder over time and my veins would eventually give up. Another nurse asked why I hadn't had a portacath put in.
So when I got home, I contacted my consultant and asked him, if it was possible for me to have this done? He said it was possible, but again questioned whether it was necessary, because of the small risk of infection when you have a portacath constantly in your body. I explained that it wasn't just because they can't find my veins, but the pain that goes with it is becoming unbearable. I want to continue with this treatment, but if I am going to do that, then I need to have this portacath. I was getting to the point, where I was getting really stressed about the cannulation a couple of weeks before it was being done and when you have an infusion every four weeks, then that is quite a lot of stress!
So it was decided that it probably was the best thing for me. My consultant asked the MS nurse to arrange this for me.
It has been arranged and I am to have the portacath fitted tomorrow!
It will be done by X-ray, but apparently I won't know anything about it - I hope that means that they will put me out!! Once the port has been fitted, then they will go ahead with the fourth infusion.
I have no idea where the port will be. I'm assuming it will be up on my chest somewhere? And of course, it will need to be looked after very well, so that I don't get any kind of infection in it.
I am glad that this has been arranged for me and it will take the stress out of the infusions for me. It will also mean that if I need steroid infusions in the future, I will be able to those without the worry of the cannulation.
But I have to admit, now that it is happening tomorrow, I am a little bit anxious - so fingers crossed for me, please!!
Wednesday, 9 September 2009
It is two weeks yesterday, until my next Tysabri infusion. It will be infusion number four.I phoned the MS nurse today to get an update on the progress of sorting out a portacath for me. They phoned me back and said that it is all organised. They have spoken to the Doctor who will be putting it in and he will do that on the day of my infusion. Apparently, it will be done via X-ray, but I will be out and won't know it is happening - which is fine by me!! I don't know how long the procedure will take though.
Once the port is fitted, they will then do the infusion. It will be a long day, as they won't be doing the portacath until the afternoon, but that's OK. At least I know now!!
Now that it has been organised and everything is in place for it to happen, I am a little bit scared!! But scared in a good way. I know that this is the right thing for me and if I want to carry on with Tysabri, this is what I need to do that.
I have only had three infusions, so I don't know whether I should be feeling any different yet, or not. But I don't!
I have had quite a difficult week. Fatigue has hit me very hard and I have been struggling for any energy. The pain, as always, has been an issue. And the numbness and pain in my right hand and arm, don't seem to be going anywhere.
I spoke to the MS nurse about that, today. Martin had wondered whether the Tysabri could have been a reason why the numbness has happened, because it happened just ten days after the first infusion. I can see where he was coming from. But I believe that the relapse was going to happen anyway and it just coincided with the start of the Tysabri infusions. The nurse agrees with me too. It just backs up the fact that I need to be on something, like Tysabri, to help combat these relapses.
I have been feeling quite low and frustrated about everything lately. And then of course, I get upset that I am feeling like that, it is a vicious circle. I know it is easy to get caught in a downward spiral, so I am determined not to let that happen to me.
I am looking at the positives that I can hold on to.
I have my singing, of course! We are just starting to get things moving for the concert that we are putting on next year.
Don't worry you will hear all about it over time, but just to let you know, we are putting on a concert for two nights in June 2010.
The money we raise will be split between the MS Society, South Devon Branch and Rowcroft. That way we are hoping we will attract more people to come and see the show and therefore raise more funds for the charities.
The last two concerts we have done, we have raised £2500 altogether. So we are hoping to raise a good amount to share between these two worthwhile causes.
As well as doing it to raise money, it is something that I get a lot out of. The singing, of course, is something I love to do, so that always gives me a lift. But because we are organising it, there are lots of things to take care of. It is a project that means a lot to Martin and I and does a lot to keep my spirits high!
I'm really excited about it now and I wish we could start rehearsing tomorrow - patience Amelia!!
Saturday, 5 September 2009
Firstly, can I just say a big Thank you to all of you who left comments on my last post. I really appreciate all your thoughts and it really helps to have feedback.
When I saw the GP earlier in the week, I asked if I could be referred back to an Occupational Therapist. I wondered whether they may be able to help me with some of the problems I am having with my hand and arm. I have also decided to ask them about the whole wheelchair question. I know that they would have to do an assessment, but there may be an opportunity for me to get a wheelchair through them. I'll keep you updated on that!
I am also going to speak to them about my bathroom. It is now becoming a real source of frustration for me. We have a bath in there, with a shower over the bath. I have a bath seat, which sits across the bath and allows me to sit whilst I am showering. But I am having serious difficulties getting my legs over the bath to get in and out. I have found it quite a problem for a while now, but as with anything, you find a way of doing it so that you can keep your independence for as long as possible. I haven't liked showering if Martin was not in the house, but I have done it before, because I had no choice and I found a way to do it. But now it is a different story.
I can't really have a shower if Martin is not there to help me. Not only does he have to help me get in and out, but because of my hand, he is now washing my hair for me too. It is lovely that he cares for me so well. Of course he does this without any complaint, but for me it is quite an issue. The fact that I am needing so much more help around the house, is just so frustrating. I feel as though I am slowly watching my independence slip through my fingers.
It is another thing that I have found quite difficult to get my head around. As I am having these relapses and things do become harder to do, when do you say, "right I can't do this and I need help?"
I have realised that I am pretty stubborn - there will be quite a few people falling off their chairs, when they read that! But what I mean is, I know that I push myself to keep going as long as I can. The way I see it is, that if I can keep doing something, then I should, but when that becomes difficult to do, I find it really hard to stop or to ask for help. To me, that means I am giving in. But I have had to give in, where showering and washing my hair is concerned.
I guess it is such a personal decision, like the wheelchair issue. Only we, as individuals, know when something is too painful or difficult to do.
But, on a more positive note, I have been to a singing rehearsal today! It is for the group that Martin and I are a part of - How Apt.
It was really good to be doing something positive and something that I love. We are looking at the things we want to do with the group, like go into schools and colleges and do musical workshops. We are also looking at hotels etc for the Christmas period and then music festivals and weddings for next summer. So we are having to put a few set lists together.
I must admit that when I got there, I wasn't in a great mood. I was really tired and in pain and although I wanted to be there, it was a struggle. But there is something so therapeutic for me about singing, because, although I was still in pain and oh so tired when we had finished, I felt good for having done something that I really enjoyed!
A lesson there, for me, I think!!
Thursday, 3 September 2009
Martin and I had a week off work last week and I have to say that it was a real joy.
We were able to relax and enjoy each others company.
We went down to Bournemouth at the beginning of the week, partly to visit some of Martin's family, but also to go and visit the Bournemouth air show. It was a lovely day out on Bournemouth beach. The planes were absolutely awesome and we got some wonderful photos, as you can see!!
The only down side to the day, was the fact that I hadn't taken a wheelchair. We ended up walking quite a long way and that caused me quite a bit of pain. By the time we got back to the park & ride bus, I could hardly walk. It has made me realise that maybe I need to get a wheelchair for occasions like that. I am coming across situations like that more and more, so maybe it is time to be realistic, instead of burying my head in the sand!!
I am also struggling using my crutches, at the moment. Because I am still experiencing a lot of pain in my right hand and arm. I am finding that it is hurting me to use my crutches for too long. The pressure I put on that hand is causing additional pain to me, so using a wheelchair would help alleviate that.
I haven't returned to work yet. It is disappointing, but I am coming to the conclusion that it is the best thing for me, right now. I have been finding, that going to work has been quite stressful and I know that stress doesn't go well together with MS!!
It is difficult to come to these realizations and for everyone it will be different. I have found it quite tough to think about things like using a wheelchair and resting to help conserve my energy.
I guess it is actually coming to terms with the fact that I have a chronic illness, that has changed my life. It is about dealing with that in the best way possible and finding ways to give myself the best quality of life that I can.
Everyone will deal with these issues in their own time and for some it will be easier to deal with than others. For me, I think it is taking a bit longer than I would like!!
I hope everyone enjoyed the Bank Holiday weekend and remain happy and stress free!!