Saturday, 1 May 2010

Rough time

Hi everyone,
I am so sorry that I haven't been on here for such a long time, I have been having a bit of a difficult time and I haven't felt physically or emotionally strong enough to write any posts.
I have been incredibly frustrated, but I am determined to continue writing again and getting the support and friendship that I have missed over the past weeks.

There hasn't been one single thing that has happened, but a combination of lots of things, that has caused me to find life a bit more difficult than usual!
I had my Tysabri number 10 which I found quite difficult because I had a headache that lasted for about 10 days. We don't think it was anything to do with the Tysabri and when I look back on it now, I think it was the start of a virus/cold/sinusitis that I came down with just before Easter. I was suffering with it for a couple of weeks and it really knocked me for six. It started as a cold which then went on to become sinusitis. I have never suffered with that before and it really wasn't pleasant!
I had to put off Tysabri number 11, because I really wasn't well enough to make the trip to Plymouth for the treatment. It was postponed for a week, but I still wasn't well enough, so I didn't go down until the following Friday, about 10 days late. I now have to change my day and go every four weeks from that Friday.
Interestingly though, I didn't really feel anything, even though I was late having my infusion. I didn't feel like I was desperate to have the infusion. Which makes me wonder whether the Tysabri is actually doing anything? I will still continue with it and give it more time, but it has put questions in my mind.
I have been struggling with pain quite badly again. I have changed my pain medication. I am no longer on Tramadol, but I am now taking Oxycontin. The change over was quite difficult. I had been taking Tramadol for quite some time and so it took a little while for my body to get used to not having it any more. The Oxycontin was a straight swap, but I had to start off on a low dose, so I have been struggling a lot to get it right. The Oxycontin is a 12 hour slow release tablet, but I am also able to take a lower dose tablet called Oxy Norm, in between the 12 hr release tablet, for break through pain, if I need it...........I have needed it!!
I have another appointment to see the pain clinic in mid May, so it will be good to go to that and see where I am with the pain management. I am having issues with waking up in the early hours of the morning, with severe pain in my hands. It is not a pleasant experience and is having a real impact on my fatigue too, because it is seriously disrupting my sleep patterns.
I am also now seeing a nurse at the Bladder & Bowel care, who was lovely and really made me feel at ease. She has decided to deal with the bowel issue before making a start on the bladder problem. It is another area where I feel there is finally a plan in place, to try and make the situation a little easier for me.

Our lifestyle change, where we have been making an effort to lose weight, is going really well. As of last Monday, I have lost 32 & 1/4lbs (2 stone, 4 & 1/4lbs) since January 4Th! I still have a long way to go, but it is a good feeling for what we have done so far. Martin has lost a stone and a half too. Together our house is over 50 lbs lighter since Christmas!! It has made a big difference to my portacath. It is a lot easier for the nurse to find now and the past two times that I have been for my infusion, she has been able to get the needle in first time. The portacath is much more prominent now and I wonder if I might have to have it moved - I don't even know if they will do that? I am certainly not going to stop losing weight, just because of the portacath though!!
I am now able to wear clothes that I have bought in the past & not ever been able to wear! I have still got a lot to lose, but we are doing it properly, we are eating healthily and it is coming off slowly, so we have a fighting chance at keeping it off!

We have eight weeks to go before we put on our fundraising concert - "Closer Than Ever".
We have started rehearsing now and it is going well! We are all enjoying what we are doing although there is a lot of hard work being done! We have had the poster/flyer designed and printed and I am busy sending out lots of letters to businesses to try and get some advertising to pay for the programme and raffle prizes for the night. There is a lot to be done to put on a show like this, it always seems like such a good idea when you are planning it with 18 months to go, but now there is only eight weeks, it is getting a little scary!!
It is giving me something to focus on though, which is essential for me. I like to have something to get my teeth into and it gives me a purpose, which is always a good thing.
I love this show, so much. It has amazing music, which feels really great to sing. I am really excited about doing it, but I am also terrified too. I am starting to question my confidence and whether I will be able to pull this off. That is where I am so grateful to our friends for being involved with us, they all help me and we work so well together - it is a real group effort!
If any of you have the opportunity to come and see this, then please do - it really is worth it!

Anyway, that is enough from me for now, but I promise, I won't leave it for so long for my next post!
I hope everyone is keeping well and looking forward to the brighter, warmer weather!



  1. Hi Amelia,
    Great to read you are back.
    Thinking of you.
    Hope your concert goes well.

  2. pain in hands is common,and nasty.mine are dead,except for feeling like ive grasped nettles.maybe i should lol.tysabril is not the wonder drug some thought it was love.lot of people are helped by it,some are not.we have diff forms of MS,im secondary progressive,so nothing much can be done for me,apart from pain relief,hope you get help with your pain issues,good luck tc mort x

  3. heyyy, dis is the first tym read ur blog i think i really respect ur way of fighting ur disese