Tuesday, 21 July 2009

Relapse troubles.

Here I am again. It's been another tough week.
I am still in my relapse and unfortunately things have only got worse.
My right side is still very numb. The underside of my arm and the whole hand feel very strange. The sensations I have in them are very bizarre. It constantly feels like they are bigger than they are and that they have that "glove" feeling.
I can't really feel anything when it is in my right hand. And I am losing the strength in both the arm and hand. Just doing little things like brushing my hair and cleaning my teeth take a lot of concentration and energy to complete.
My right leg has the numbness in it and also feels like some of the power has gone. It is my arm that is causing most concern though.
I heard from the nurse again yesterday but I don't have a prescription for anything to help yet. So I am left dealing with this on my own again, without any medical help.
I had decided that I didn't want to go down the steroid route. I had two lots of steroids in March and just feel that I don't want to overdo it with my steroid in take. The problem is, that the decision is always mine and I am never sure that I am making the right one.
Is it right that I don't have anything to help me fight this?
It is now Wednesday. I had to stop writing yesterday. I was in too much pain and it was just getting me down that I felt really on my own in my fight.
Anyway, I managed to get hold of a GP at my surgery who was great and said that I am not alone and can always contact them if I need them. He arranged for a prescription for a pain relief patch to be done. I got that filled and have been able to put the patches on. It is a Butrans Pain Relief patch. The only problem is, that it takes a couple of days to get into the system. So I'm still having to wait for some relief.
This relapse has really knocked me sideways and I am quite shocked about that. I don't know why that is, but I am really struggling. I know the pain is bad and it is, REALLY bad, and the numbness is something I can't describe, but it's everything around that too. It is trying to do small everyday things and finding it hard to achieve.
But also, not being able to work is driving me mad. They are being really good about it - well I know they have to be. I have to go in next week for an appointment with the Occupational Health Advisor. I am not sure what I will say or what they will be able to help with, but time will tell. Along with not being able to work, is the fact that while I'm not working, I'm not getting the extra money that I earn. We do rely on that money and so I feel like I am letting Martin down. I feel that I am not contributing to our relationship, financially. It's not like that, and I know Martin is just concerned that I get myself sorted out, but it is another burden I put upon myself.
I spoke to the MS nurse this morning who told me to rest as much as possible and to do as little as I can. Try not to do the things that aggravate the pain. I know she is right but, wow, it's not easy.
Sleep has been another thing that has been quite elusive. And I know how much that can affect your mood and the way you look at situations. I don't like taking sleeping tablets but for a couple of nights, just to get your sleeping pattern back on track, it can sometimes be a necessity. Now is definitely one of those times.
OK so I am admitting a lot today!
I'm sorry that this seems to be another post where I am quite down, but I wanted, above all, for this to be an honest blog about about life with MS. That means I can't & won't sugar coat it for you, I will just hope that I can be a bit more positive very soon!
It also helps so much, to know that people who read this know what I am talking about. You give me so much comfort and support that I feel I can be honest and no-one will look at me any differently......................or at least I hope not!!
Big hugs

These are my favourite bears that I have all over my house!

Tuesday, 14 July 2009


Last week, I started getting strange sensations in my right thumb. I didn't think anything of it at the time, just that it was uncomfortable. Then on Friday I started getting numb sensations throughout my right hand. It was the same numbness that I had when I had my relapse in March/April. So then the alarm bells started ringing.
I decided to ignore it and see if anything happened over the weekend, or maybe it would just go away.
Who was I kidding?
Over the weekend the numbness started spreading up the underside of my right arm. By Monday it was throughout the right side of my back and beginning to go down my right leg.
I went into work on Monday, not having rung the nurse. I just thought if I gave it one more day it might be different.
I had a bit of a melt down at work, because I was struggling a lot to just do my job. Also, I suppose, the fact that I hadn't rung the nurse was playing on my mind. After a chat to a friend, who is also our section leader, I realised that I was being silly and that I had to call the nurse. She also made me realise that I need to look after myself at the moment and she arranged for me to have the rest of the week off. I was stressing about losing my job, but she assured me that my job will still be there!
After not being able to get hold of the nurse yesterday, I managed to speak to her today. She has said that it is a relapse, but, the positive thing is that it's not new symptoms. That means that it's probably not a new lot of inflammation. A positive!
I have decided to hold off on the steroid route for now. I have already had two lots of steroids this year and I'm concerned about the consequences of having too many courses of steroids. Especially when they don't always have a great outcome for me. They also make me feel so bad that I have to weigh up the benefit of having it or not.
The problem with not having the steroid treatment is, that it means I am not doing anything to help overcome this relapse. I feel like I am stuck in a no win situation.
I currently have numbness throughout my right side. My hand and arm are the worst feeling. It is as though I have a big glove over my hand making it feel twice the size that it really is. It is the weirdest sensation. It hasn't gone up into my head yet though, so hopefully it will stay that way.
The nurse is going to speak to my consultant to fill him in and then she will get back to me and we will go from there.
It is incredibly frustrating and pretty scary.
It's amazing how this disease can knock you sideways in the space of a few days. That is one of things that is so hard to express to people. Obviously no-one knows what is around the corner, but that uncertainty is even greater when MS is part of the equation.
I am determined that it's not going to get the better of me. I will give myself some time to rest and try and get through this relapse as quickly as possible.
At least it means I can sit and watch the second Ashes test this week, without work getting in the way - see I'm looking on the positive side!!

Until I get around to writing about our day at the cricket, I thought you might like to see some photos!

Friday, 10 July 2009

Tysabri Tales!

I am so sorry to everyone for not updating my blog for a while.
I know you are all wondering how things went last week with my first infusion. So get a cuppa, sit back & read on!

We got to the hospital by about 9.15AM on Tuesday 30th June. It was in the planned investigation unit. I hadn't been back to that unit for a few years. I had been there twice in the first stages of my diagnosis, for the tests and some steroid treatments. A nurse that I remembered, was still there and remembered me!! We got booked in and did all the paperwork. I didn't have to wait for a doctor to come and give me the OK. I have heard that some other people have to wait for a doctor before they can have the treatment. But I think, because we have an MS nurse in the building, she is able to give the OK.
So it soon became time for them to put a cannula in my arm. I did warn them I was difficult! After 3 attempts, we finally had the thing in my arm, but it was on the inside of my wrist, not an easy place!
I started the infusion at about 12pm. I had been able to talk to the MS nurse first, but there wasn't a lot more that I needed to know by then, I think we were both at the stage of just getting on with it!
So the infusion went through. It didn't hurt, although my wrist was a little bit sore from the cannula. Then I had to wait around for an hour afterwards to make sure I didn't feel strange! I was getting the start of a headache, but apart from that I was OK.
Martin drove us home, which turned out to be a good thing. About 15 minutes after we left the hospital, I was fast asleep. I don't just mean a quick nap, I was out of it. There was no way I was keeping my eyes open.
We got home by about 3pm, had a bite to eat and then, yes, I was asleep again. I woke up again at about 7pm and decided that I ought to just give in to it and go to bed, so by 8pm I was in bed! I slept through until about 12pm the next day. I got up then but to be perfectly honest, I could have stayed in bed for the rest of the day. I wanted to get up, so that I had a chance to be able to sleep that night.
I had some dinner and went to bed on Wednesday night but about half an hour later I was up and being violently sick. It wasn't a nice experience. After I had finished I went back to bed feeling quite weak. I rang the MS nurse the next day, because I just didn't know if it was something I should be concerned about or not. I explained what had happened and my concerns about whether it was connected to the Tysabri. But we determined that it was more likely to be down to the tuna I had eaten for dinner! Food poisoning, the same week I start the Tysabri - typical eh?!!
I felt pretty weak and feeble for a couple of days but I had stopped being sick, so I think it was safe to say that it was due to food poisoning.
I didn't go back to work until this past Monday because I just didn't feel strong enough. That's another story though because they are now going to be doing an investigation at work, into my absence. If you have so many instances of absence in so much time then they have to investigate it to see what they can do to help. I understand that they have a business to run and so they have procedures to follow but what I don't get is where does common sense come into all this. They took me on knowing that I had MS, so where is the understanding? I feel at the moment that I have to go in for every shift because otherwise it's all going to go against me.
But when you have MS, life isn't that easy.
I will have to have a chat to someone and talk about my concerns. I don't want them driving me out of my job because of a condition that I can do nothing about. The job is too important to me and I have worked too hard to get everything as it should be, for me to give it up now. It is something that I need to be doing because it gives me a purpose, it gets me out of the house and talking to other people and it allows me to contribute to my relationship, financially.
So on the Tysabri front, it's just over a week since I had the infusion and I am feeling alright. I don't feel any different, there has been no miracle cure, but I also don't feel as though I have had any negative affects from it. My next appointment is made for July 28th, so I guess it's just wait and see!
We went for a day at the cricket in Cardiff yesterday, but I will write a separate piece about that experience!
Today has not been a good day though.
Throughout the week, I have been getting some strange pain and sensation in my right thumb. I didn't really think that much of it until today, when I realised that my right arm has started to go numb in a big way again. It is exactly the same feeling I had in March, when I had my last relapse. My hand and the underside of my arm is feeling really strange. It is the horrible, painfully numb sensation that I have had before. I am just waiting to see if it spreads throughout my entire right side and up into my head like it did in March.
I will have to wait until Monday to speak to the MS nurse but that will also give me a chance to see if it is going to persist.
My immediate thought is relapse, but so soon after my last one and I've just started Tysabri so what does that mean?
I am so confused and I'm not ashamed to say that it is scaring me quite a lot. If it's not a relapse, then what is happening, if it is a relapse, well that's not good news either.