Saturday, 30 May 2009
I apologise from the start today as I think this post might be full of frustration and annoyance!
I have had a rough couple of days and need to get it off my chest.
Last night my legs decided to become completely uncontrollable. They kept flicking out but I couldn't control it at all. I think it was like they were having spasms, but I've not had spasms before so I'm not sure. This experience has only happened once before and that was last week. Please don't tell me this another new symptom. I don't think I can handle that at the moment.
Then this evening, I managed to fall over. My legs just didn't work and I tripped up a step into my house. Luckily I fell into an armchair, but I still managed to bash my knee, and wrench my arm and neck. I am aching all over now. We were supposed to be going out with some friends but we had to cancel. I hate doing that because apart from letting people down, which I hate, I also feel as though I am giving in to the MS. But on the other hand I couldn't have sat and watched a show tonight, I am just too uncomfortable!
Then to top the evening off, I managed to drop Martin's dinner all over the floor. I just burst into tears because it was one thing too many tonight.
I feel as though I am losing control at the moment. No, actually that's not quite right. I feel as though the MS is controlling me. I am struggling with pain, badly, again. My hands appear to be in constant pain on a daily basis. And I don't think I really have a grip on things.
I am still working, in fact I went in yesterday and today. But I am struggling with it. I am not going to give up though. I need it to keep me sane! My managers have been pretty good and I have been able to do some letters in the office. They don't question it if I ask to go home, which is a relief. I don't like asking but when you get questioned about it as well, it makes it twice as hard.
I have asked for an appointment with the Occupational Health advisor. The appointment is actually next week. I want to talk to them about how the Tysabri may affect me and work. For the first couple of infusions, I want to know that I can have the day off immediately after the infusion. That way it will give me time to adjust to the medication, without having to worry about work. I am trying to be sensible about the whole thing! I know that I may be fine and have no side affects but until I have a couple of infusions, I won't know for sure.
I needed a place to scream, so here goes AGGGGGGGGHHHHHHHHHHHHHH!!
Wednesday, 27 May 2009
It has been quite a week.
Nothing in particular but my head seems to be full and it's driving me a little crazy!
I had another letter from my consultant, which is one he also sent to my GP. It stated that he had reviewed my MRI scans and confirmed the progression. Seeing it written down somehow keeps freaking me out. When someone talks to you about it, of course it is a shock and it hits you, but seeing it actually written down, seems to make it so real to me.
So that has been on my mind again.
We also received the information on Tysabri that the nurse sent me. There is nothing in it that has not already been explained. So although I still feel very tentative about saying it - I think that is the direction which I will be going.
I will be speaking to the nurse next week and then it will be a case of waiting for an appointment to be arranged. It could be quite quick, depending on the spaces they have available.
Although we have made the decision, I still feel apprehensive about it. I think because there are risks involved, even though I know they are minimal, I am still finding that quite scary.
I also want to find out whether a pain clinic appointment has been sorted out for me. I am still experiencing a lot of pain. It got a bit too much for me the other day - but why does that always happen when I am at work?!!
I am still managing to work, although I feel as though I have been a bit of a pain and quite miserable lately. I have been struggling because of the pain in my hands. And also I think my head has been so full of the MRI results and what to do next, that I have been quite emotional. Of course, then I get really frustrated and I become quite hard on myself. It's a vicious circle.
I have been at work today and I managed my whole shift, so a pat on back for today! It also means that I have the day off tomorrow - yay!!
I am slightly sad though because my Dad is going back to sea tomorrow. I have to get up and take him to the local airport. It's funny, he has been doing this job, for the majority of my lifetime, but since we lost my Mum last year, I don't like him going away now. I really miss him and I worry about him, more than I have ever done. He will be back again in about three months though so I will look forward to that.
Friday, 22 May 2009
I have only been blogging for a few months and have fallen for it as many others have. For me it is a way of expressing myself about living life with a chronic illness. But it has opened up my eyes to the fact that many others are doing the same thing.
I have gained some amazing support and made some great friends through doing this and I hope that along the way I am able to give out as much as I am receiving.
So it filled me with joy to find that two other bloggers had decided to give me awards for my blog - how exciting!!
Part of the gift of receiving it is to then pass it on to other bloggers and so it gives me pleasure to pass on these awards to the following blogs!
Carole at http://carolemsblog.blogspot.com/
Tinglyfeeling at http://www.tinglyfeeling.com/
Patrick at http://caregivinglyyours.blogspot.com/
Jen at http://www.msstrength.com/
Tuesday, 19 May 2009
Yesterday was the day I should have seen my consultant, but instead I ended up seeing the MS nurse. I was a little disappointed but as Martin said, as long as they could answer my questions then it didn't matter who I saw!
I actually came out of the hospital feeling more positive than I have done in a while.
I discussed the MRI results. Apparently the lesions that I had already haven't grown any bigger, so that's good right? But there are additional ones that have appeared on my brain - I was just pleased that it confirms I have a brain!!
The opinion is that it is these new lesions that have caused my latest relapse.
So where do we go from here?
We discussed the two treatments that my consultant had mentioned - Tysabri and Campath.
It turns out that I would be ineligible for Campath because I already have a Thyroid problem. This was one of the risks with Campath, that it could affect the Thyroid and because I already have it I am unable to take Campath.
So we are down to Tysabri.
We had a lengthy discussion about the drug and what it would involve if I decide to go on it.
Yes there is a risk of a brain infection called PML. It has caused death in the past but it is also treatable. The risk factor that I have been told is about 1 in 1000. But having said that, some of the deaths that did occur were in people whose immune system was already comprised or they were taking both Tysabri and an interferon.
More and more people are using Tysabri and it is generally thought of as a positive treatment for people with MS.
If I decide to go ahead with it, I would have the treatment in Plymouth and it would be an infusion every four weeks. That is another issue that I have talked to the nurse about, because of my troublesome veins. I don't really relish the thought of being black and blue every month.
It would be done on a unit where the nurses are very experienced and are dealing with this type of thing, daily. So is it worth a try?
We have asked the nurse to send us the information about Tysabri, just so that we can get it straight in our own minds, but I think Martin & I both feel that I have nothing to lose by trying this treatment. I would be fully monitored and I would see an MS nurse every four weeks. The more people that go on the treatment means that I could be getting my infusion with other MSers, which we be good support for us. I like the idea of someone else administering it and having other people about to talk to. That was a problem I had with Rebif and Avonex - I felt like I was battling this on my own, especially having to inject myself.
Tysabri can reduce relapses by up to 60%. That has got to be worth a try right?
So watch this space!
Sunday, 17 May 2009
Well it's my Birthday today!
Another year older but not sure I'm any wiser!!
After another bad night where I didn't get much sleep at all, I woke up to a load of surprise presents from Martin. He has really spoilt me and I feel very loved.
I checked my Face Book account today and I can't believe how many messages I received. I am really overwhelmed that so many people want to show that they care. It's definitely been a good day!
Unfortunately all good things have to come to an end and that means that tomorrow morning and the appointment with the consultant is ever closer. I feel really churned up inside because I just don't know how I feel about it all. I think I need to just go along to the appointment and see what the consultant has to say. Then Martin & I can deal with it from there. Why is it so much easier to say than to do?
Hugs to everyone XxXxX
Friday, 15 May 2009
I received a letter in the post yesterday, from my consultant. It was the results from my MRI scan, that I had in March. It says that new lesions have shown up and my consultant has said that it confirms that the new symptoms I am experiencing are as a result of a relapse. He also says that it would also support moving to a new disease modifying drug. By that, he is suggesting Tysabri or Campath.
I am disappointed that new lesions have shown up, but as Martin has said at least there is a reason for the new symptoms.
I am also a bit freaked out by the suggestion of the new drugs. I know he means these two because we discussed the possibility when I saw him in March. I haven't been sent any information about the drugs but I have looked on the internet about them. Campath is a little harder to find out about, but there seems to be a lot about Tysabri. Obviously the risks of these drugs jumps out at me immediately. So you can imagine what state my head is in at the moment.
I have an appointment with the consultant on Monday morning. So at least I don't have to wait too long before I can discuss everything with him.
My big problem is, that it is fore front in my mind. I didn't sleep well last night. And I can't stop thinking about it. The reason this is a problem is that it is my birthday on Sunday!!! I was poorly last year on my birthday so I am determined to have a good day this year. I just hope I am not thinking about treatment all day.
I'm glad that you like the photos I have shown you so far! So I will keep adding more each day for you all to see - let me know when you are bored of seeing them!!
Thursday, 14 May 2009
So we have been on our canal adventure and I am glad to say we had the most amazing time. I am just sad it is all over now.
As promised we took lots of photos, so I will upload a few for now. I am hoping to do a separate blog to go through the week on the canal. It will also give me an opportunity to put out more of our photos!
I have decided that we need to do more holidays - if only the finances would allow it!
It made me feel so free and I was able to put my pain to the back of my mind because I had so much else to concentrate on. The symptoms were still there but they weren't at the fore front of my mind. There is definitely something to be said for having distractions in our lives.
By the end of the week I was pretty exhausted because we would be getting up early to make the most of the daylight. So it did catch up with me eventually!! I was a little frustrated that my MS prevented me from working the locks and doing any of the physical work, but I was able to drive the boat AND I managed to drive it across the Pontcysyllte aquaduct! It was quite scary and I now realise why I was so scared as a child - it is very high!! It was good having two big strong men looking after me though!!
I look forward to catching up with everyone and I hope you are all doing well.