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!

XxXxX