Monday, 29 June 2009
The day has almost arrived. I go down to Derriford hospital tomorrow for my first Tysabri infusion.
It has the possibility to be the beginning of something new and exciting. A shame there has to be a down side to it.
I am staying positive though and have my fingers crossed that this could be the medication for me.
It is hard, when other treatments I have tried, namely Rebif and Avonex, did not have the desired affect for me. So a minuscule portion of my brain is convinced that this won't work either. But I feel that I have to give this treatment a try because otherwise I will always wonder.It was two weeks ago that I got the date through for this infusion - where did that time go?
I thought I had a bit of time to think some more about it and talk some more with Martin. We did do a lot of talking and I guess I have thought about little else, but I wasn't expecting the day to arrive quite so quickly!
We have taken the decision to go ahead with it because we have to trust that the doctors have my best interests at heart. They wouldn't be pushing this treatment if they thought there was a serious risk of contracting the brain infection PML. We are not putting it all in their hands, we have made this decision ourselves, fully informed. But it did go a long way to help us make that decision.
There have also been so many positive reports from people having been on the treatment and you can't ignore that.
I know that there is a chance that this will not work for me. There is also a chance that I may react badly to it and therefore won't be able to continue with it. But without trying it, we will never know the answers to these questions.
I will keep you all informed of my progress, obviously I don't expect to be able to walk out of the hospital tomorrow without my crutches - hey, but you never know!!
So tomorrow is the day - wish me luck!
Saturday, 27 June 2009
Firstly, I have to say a great big THANK YOU to all of you who have been kind enough to post your lovely words and support for me on my last post.
I know that Herrad was the one to encourage you all and I am eternally grateful to her for that.
It was just what I needed. And to be reminded of all the support in our blogger world was a wonderful gift. Thank you from the bottom of my heart. :)
We have had a nice day today.
We both have the weekend off, so I didn't get up until about 11am this morning. It was good to just get up when I felt like it. I could have stayed in bed, but I was so uncomfortable, I had to move out of bed - well that, and Barnaby jumping all over me because he wanted his breakfast! But that was OK, because there was nothing specific to get up for, so I could wake up in my own time.
We had a lazy morning just pottering about, which is great to do, no pressure to get things done.
We met some friends this afternoon and had coffee and a chinwag! That was good to do too. Many more days like this are needed!!
After we had left our friends, we walked past H Samuel's, so I wanted to pop in and look at the Me To You bears that they have for sale. I am an avid collector.
It goes way back to when Martin & I started going out together and we would send the cards to each other! Then they bought out the Me To You cuddly bears, of which I have many. But then they bought out the ceramic figurines and I just fell for them. I really love them. They are so cute but classy at the same time! I have been collecting them over the past five or six years, I am easy to buy for at Birthdays and Christmas! I haven't counted them recently, but I know I have over 100 of the figurines alone! They are all over the house.
Today, Martin made my day. He bought me another one! It is called Packed With Love - doesn't that say it all about us two!!
The downside to today has been the heat. It concerns me slightly that the reports for next week are that it is going to get hotter. We are heading for a heat wave. At least we have a floor standing fan. It is a great help as the heat is definitely having a negative affect on my pain.
Typically British eh? Complaining about the weather - we're never happy!!
Spare a thought for all the animals in this heat too. Our two cats are just lazing around all day, too hot and exhausted to do anything - oh wait, they are just being typical cats!!
I thought I would share some more pictures with you. There are a couple of the new Me To You bear that I got today and also some of the cats. Kit Kat found a comfortable place to sleep, in a plant pot! It was funny because Barnaby has done this before a couple of years ago. I will see if I can find that picture too!
My Packed With Love Bear!
Kit Kat in her plant container!
Barnaby in his plant pot a couple of years ago!!
Thursday, 25 June 2009
I have had a frustrating day today.
We both had the day off today because we had bought tickets to go and see our "local" cricket team - Somerset - at Taunton. We also got up earlyish because Glamorgan were putting some more tickets for the first Ashes test on sale at 9am. We decided that we wanted to try and get some tickets for the second day of the test. That meant getting up to try and beat the rush online.
We were successful and have got tickets for that test match in Cardiff. So that was a good start!
But because I had woken myself up, to do this (we needed to do this together so that we could agree on tickets!), I felt pretty sluggish. We had to pop into town, which we did, but when we got back, I knew I needed to have a rest if I was going to manage to go to Taunton. I had a good hour's nap, but I was still feeling pretty slow when I woke up.
I was also experiencing pain in my hands. This has been happening a lot lately. I am wondering if the heat is affecting me, whatever it is that is causing this pain, I wish it would stop. The pain is something that is so hard to describe. It is constant and very wearing and no-one can see it. And it appears that nothing I do or take seems to help. Once it starts for the day, it stays.
I was getting ready to go to Taunton, when I said to Martin how annoyed I was that I felt so rubbish. He suggested that we didn't go. I was reluctant because I didn't want to let him down or spoil an event that he was looking forward to. But he said that it didn't matter and that we had the Ashes tickets to look forward to, so we would get to see some more live cricket. So we took the decision not to go. It turned out to be the right decision as the match was abandoned due to the weather!
My husband is amazing. He didn't make a fuss, in fact he made nothing of it at all, just said he could play a game on his PS3 now! He is so caring and just wants to make sure that I am OK and not pushing myself too hard. That is why I feel so frustrated. Because of me, he doesn't get to do things that he would normally want to do. And yet, he just takes it in his stride. How is that fair? I know it's because he loves me and if it was the other way around I would do the same for him, but it doesn't stop the guilt.
Anyway, tomorrow is another day. I have got work tomorrow so I am hoping I get a good night's sleep and will be able to manage OK.
I have had some success at work this week, because I have had my contract changed. I now have a contract which I believe will help me to work my full hours. On Monday's and Wednesday's I do 12 pm - 3pm which enables me to sleep on in the mornings and let myself come round before I go into work. Fridays I work 3pm - 6pm and Saturday 11am - 2pm. I have realised that the best time for me to work, when I am most awake and can achieve what I want to achieve, is between the hours of 11am and 6pm. I know this sounds like I am being choosy but it's not that. It is learning to make the most of the time I am at my fittest.
And that is tough to admit, that I know I am not fit 24 hours a day, every day of the week.
So after a rough day, where I slept on and off and tried to ignore my pain, I am off to bed. Looking forward to that new day tomorrow!
Tuesday, 23 June 2009
I can't believe that I haven't been on here for so long, but I had an awful week last week and wasn't up to doing anything.
Don't you just hate it when it hits you like that. I was so wiped out. Fatigue just took over and that mixed with pain from my hands was really not a good combination. I didn't go into work on Friday, so that will tell you how bad I felt!!
That is one of the most frustrating things about MS. I know that I am generally not going to feel great on a daily basis, but you never know when it is going to just knock you out!
I am now only a week away from my first Tysabri infusion. I am trying to stay calm and positive about the whole experience, but I have to admit, I am getting more nervous as the day gets closer! Martin & I have had a lot of discussions about the treatment and we have decided that my consultant and MS nurse wouldn't have suggested it if they didn't truly believe that it would do me some good. I have to trust that they are suggesting what is in my best interest.
I have to admit, I am nervous about the nurses being able to find my veins. Knowing what a nightmare it is when I have steroids, it is the part of the treatment that fills me with dread. But, again, I have to trust that the nurses will be able to locate my pesky veins. There must be others like me out there, that have difficult veins, they must have come across it before!! Well only time will tell!
I have to tell you about a friend of mine - Mandy Riley - and what she did on Sunday.
Mandy took part in her very first half marathon. It was in Torbay and meant running from Paignton to Torquay and back twice. And I felt very humbled because she was running to raise money for the Multiple Sclerosis Society.
She completed the course in a very respectable 2 hours and 26 minutes and she has raised about £260. How brilliant is that!
I am very good friends with her mum. In fact Jeane had come with me to the hospital and sat with me when I had my last course of steroids. Mandy had heard all about me through her mum! So, I believe, that is one of the reasons she chose to run for the MS Society.
I am not one to go around, letting the world know how difficult things are for me as an individual, but I guess her mum had seen it first hand and relayed that back to Mandy. I was very choked that someone would put themselves through running 13 miles, because they wanted to help me and everyone else who has MS.
Of course we went down to Torquay on Sunday to give her our support. And I have to admit, it gave me a real lift to see her doing so well. It restores my faith in human nature when you see what people will do for others.
I have thanked Mandy numerous times, but I would like to publicly say how amazing she is and that what she did meant the world to me. It is because of people like her, that people like me can get the support that we need from the society. Thanks so much Mandy.
Martin took some pictures, which I will attach here.
I must just say hello to Emma - look I've written my blog at last!! XxXxX
Sunday, 14 June 2009
So I am having a little freak out.
I have been given the date for my first infusion of Tysabri. It will be on June 30th and I have to be at the hospital at 9am and be prepared to be there all day.
I am slightly freaking out about it. I have so many mixed emotions and to top it all there has been another confirmed case of the brain infection PML, which has been attributed to the Tysabri.
I know deep down that I need to give this a try because otherwise I will always wonder what if?But I can't get out of my head, the fact that the risk of PML is there. I am not good at having to make the decision myself. If the consultant was to tell me that I had to have this, then I would, but for the decision to be in my hands makes it so much harder.
Basically the decision is mine. I wanted it to be a joint decision with Martin & I. And it will be to a degree, but ultimately I know that Martin will support me whatever I decide. It is so difficult, because as he said, nobody really wants to be taking this medication. But with the possibility that it could help dangling in front of me, I can't ignore that.
There are about 58,000 people now on Tysabri, from what I have read. They can't all be wrong can they?
The information I have read about these latest cases of PML, says that these people have been on it for a while, over 2 years - could it be that the longer you are on it, the worse the odds become. They say, at the moment, that the odds are 1:1000. Yet as I said there are about 58,ooo people on Tysabri and eight confirmed cases of PML.
I know of a few people who are on it and this actually gives me confidence. And I have no doubt in my mind that more and more will start the treatment over time.
I have decided that I need to speak to my consultant and see if he can put mine and Martin's mind's at rest. I know he will be upfront and honest with me and I have no hesitation in contacting him and asking for his advice. So that is the route I need to take next.
At first I was disappointed that I would have to wait over two weeks for my first treatment. I looked at that as two more weeks to stress about it. But actually I am glad that I have this time to do a bit more research and speak to a few more people. I think we need this time to be really sure.
It's such a tough one for my poor little head!
As promised here are a few pictures from the cricket last weekend! It was a great day!
Tuesday, 9 June 2009
I knew I would pay for having a good weekend.
I am so glad I took Monday off work, because I have spent the last two days, not feeling great at all. Fatigue has hit me hard and the spasms in my legs have started again tonight. It is SO frustrating.
I have literally spent the past two days resting. There was so much I wanted to get done, like housework etc, but I just didn't have the energy.
I am back at work tomorrow morning too, which I am really not looking forward to. I hope we aren't busy and that maybe there will be some letters for me to do in the office.
I am feeling incredibly bloated too, which doesn't help. It is making me feel very sluggish which is probably not helping with not wanting to go to work tomorrow.
Oh well there's no point moaning about it, it's my choice to go to work and I know deep down it is what I want to do. I just wish it wasn't so hard at times!
On a positive note, we have another couple of cricket outings to look forward to. I have booked us tickets to go and see our "local" county team - Somerset, play in their Twenty20 competition. We have also managed to get hold of two tickets for Day five of the first Ashes test at Cardiff. Of course it is Day five so there is a chance it will all be over by then, but we had to take what we could get!!
We are also keeping up the singing. We have a gig booked with How Apt on August 1st. So we are busy rehearsing for that. We are helping out with a memorial charity concert in July. And we are also planning our own charity concert for next year. I need to do a bit of letter writing and ask for some help to pay for the licence to put on the show. It is a small price to pay compared to how much we are hoping to raise for the local branch of the MS Society and a local hospice called Rowcroft. The past two concerts we have done have raised a total of £2500.
So there are things still boiling away.
I am hoping for a better end to the week than the start was - I hope everyone else is managing OK.
Love & hugs
Sunday, 7 June 2009
Well, I am exhausted!
We have just been away for a couple of days.
We went up to London, to the Oval, and watched some of the Twenty20 World Cup. We saw New Zealand vs Scotland and Australia vs West Indies. It was very enjoyable, even if it was a bit wet to start off with! We had great seats - once the rain had stopped! We were out in the open so rain covers were needed!
I didn't take my mobility scooter because I wasn't sure that I would have anywhere to leave it. In a way I wish I had taken it because, the Oval is such a big ground that I would have found somewhere to put it. Or maybe a wheelchair would have been a good option? But having said that I did manage OK. I had been able to sort out some Blue Badge parking, which was near to the ground and meant the car was secure. So it wasn't like we were using public transport and walking a long way.
The seats were pretty uncomfortable though. If we were going to go again in the future, we may look at going in the family stand, where it looked a bit better space & which has no alcohol! The alcohol wasn't a problem apart from people constantly wanting to go and get more beer! We are theatre people so you stay in your seats!!
The cricket was very enjoyable. It was good being a neutral supporter, because we could just enjoy the quality cricket. And it was quality. Watching Chris Gayle hit the ball for six all over the park was great! And of course, being English, meant watching Australia get beaten was quite sweet!
The thing that I found pleasing, was that we had Australian & West Indies supporters and New Zealand & Scotland supporters all sitting together. There was no animosity, just good camaraderie. Would you ever get that at a footie match?
And to say that we have been to the Oval, makes me feel quite proud. We are watching the England game at the moment, which is being played at the Oval too. Apart from picking out where we were sitting, it brings another dimension to watching it. We know what everything looks like in reality, rather than from television perspective! You also feel the atmosphere more.
The good thing about this weekend was that we booked ourselves into a B&B for two nights. So we drove up on Friday & went to see a 3D film, which was fun. Coraline 3D. Then we were able to get a good night's sleep instead of driving up early on Saturday morning. We also stayed last night which meant, again, we could get a good night's sleep before coming home. Yes, it was more expensive to do it that way, but for my well being, this was a far better choice.
Having said that, I still feel exhausted tonight!
It has been good to get away though and temporarily forget about the decisions that we have made recently. It has been tough going lately, but Martin is so great. He is so supportive and just constantly there for me whenever I need him. Going through all this together makes it so much easier to deal with and I will be forever grateful to him for his comfort and guidance.
It has been a really good weekend, but doing things, really does take it out of me.
I am off work until Wednesday though, which is brilliant. I knew I would be tired after this weekend and so I managed to get tomorrow off. I am slowly learning the things I need to do to try and make my life a little more manageable. I suppose that also means that I am coming to the realisation that I am not super woman...........................what??
We did take pictures while we were at the cricket yesterday, so once I get them sorted out I will post some of them up here!