Saturday, 14 November 2009

Another week goes by.......

And it has been quite a mix of emotions.
Last weekend was a really difficult one for me.
I struggled really badly with MS symptoms. The nerve endings, all over my body, went haywire. It felt as though I had put my hand in an electric socket - not that I know what that should feel like. The nerves seemed to be flickering all over my body.
It kept me awake on Friday night. I went to bed, but just couldn't sleep because of the weird sensations and it also felt oddly painful. I experience so much pain, in so many different ways, that it is difficult, sometimes, to work out if it is pain or not. But this was.
I got up, because there was just no point lying there, getting more and more frustrated. I eventually went back to bed at about 4am and got a couple of hours sleep, only to get up again, when I woke up about 6.30am. The trouble is, when you have such a disrupted night's sleep, it has a knock on affect. It did for me, for the rest of the week.
This sensation that I was experiencing, I have had before, but in the past I have been able to go to sleep and it's gone in the morning.
It's been different this time. It started on Friday evening, but after a troubled night, I then experienced it again on Saturday night. And I have felt it on and off all through the week. It hasn't stopped either.
The pain level in my right hand has increased slightly too. Does this mean I'm having a relapse? I have no idea and I have been reluctant to contact anyone, partly because I have Tysabri number six on Tuesday of next week, so I will probably see an MS nurse while I am there. I also haven't contacted anyone, because I never know whether it's a relapse or not, when it's not a drastic physical change. I feel that maybe I'm just making a fuss - please don't shout at me, everyone!
The other thing that has made me think possible relapse, is a change in my waterworks. I apologise to anyone who feels uncomfortable reading about me and my bladder, but it is a common symptom of MS, so I don't feel I should hide it.
I am finding that I am having to go far more frequently and I am never convinced that I have emptied my bladder when I have been. Over the years of my diagnosis, I have suffered with hesitancy, which I do still get, but I have noticed a real increase in the amount of times I need to go. It is making me aware of how much I can drink, before I am going to need to go again. It isn't something that is having a drastic impact on my life, at the moment and I hope it won't for some time to come, but it is something that I need to acknowledge and I guess I do need to let my GP, or the MS nurse know about this change.
As I have said, I have Tysabri number six on Tuesday. I can't believe just how quickly it comes round every month. I still don't feel that I can comment on whether it is having any affect on me. But after only five infusions, I didn't really expect to. I have no intentions of coming off it, at this point in time. I have been through too much, what with the veins and the portacath, so I definitely want to give this treatment a decent chance.
It will be my second infusion with the portacath, so I will let you know how it all goes. I still feel quite freaked out sometimes, when I feel it under my skin! But I just remind myself, that it is serving a purpose and stopping me from having to go through vein hell!

I can say, that we have chosen the car that we are going to go with next! Hooray!
It has been quite a difficult decision this time. Both times before, we had a clear idea of which car we were going to go with, but this time, we really didn't know.
We test drove the Citroen C3 Picasso first. It is a lovely car to look at. It ticked the box for getting in and out and it appeared to have a fair amount of space. It comes as a diesel too, so the fuel consumption is quite impressive. On the down side, it only comes as a manual though, so I would have to give up driving. Martin actually drove it and felt it was a nice car to drive. I had almost decided, in my mind, that this was the car for us. But before we made the decision, we both knew we had to go and test drive the Nissan Note, which was the other car we had short listed.
We were shown around a model in the showroom, which was the exact model we would go for, if we decided on this car. I have to admit, it surprised me quite a bit. From the outside, it doesn't look like it should have that much space inside, but they have designed it very well. It has a split level boot, which the Citroen has. The back seats go down, which the Citroen's do. But the back seats are also on a runner, so you can move it forward or back as you need it. The Citroen doesn't have this.
It has cubby holes all over the car, which again, the Citroen does, but the Nissan has them in really sensible places. There is a cool box in the glove box, when the air conditioning is on. You can lift the passenger seat up to expose another storage area. There are fold away tables, with cup holders, for the back seats. And the bit that clinches it for Martin is, there is a decent audio system already fitted!
Martin drove this one, as well and said that this one felt a little more stable to drive. It comes as an automatic, so I will be able to drive it and it is a petrol engine. This means that the fuel consumption won't be as good as the Citroen. And this is a point that has had me hesitating. But the Nissan has a much better mpg, than our PT Cruiser has, so it will be an improvement no matter what.
The other thing to consider, was, that the Citroen comes with a nil advance payment, but the Nissan model of comparison, will cost us £199.
So after comparing the two models and ultimately, me deciding whether I still want to drive, which I have decided I do, we have chosen the Nissan Note. It will be £199 well spent - I hope! Yay!

Before I finish, I would like to just ask people to send a thought and perhaps a prayer, to three people who are struggling for their lives right now.
I have mentioned, in one of my past posts, about a seventeen year old German boy, called Dustin. He has had numerous heart surgeries, been in a coma and has had to deal with more in his young years, than most of us could imagine. He went to America, to go on a new therapy, in the hope that it would extend his life expectancy, but sadly, it doesn't seem to be working and he has been told he only has a couple of weeks to live.
If anyone would like to read his blog, the link is
He is an inspiration and also an amazing artist, just take a look at the drawing on his last post.
God bless you, Dustin.
And then, there are two people, in Plymouth, who are currently fighting for their lives. Lynsey and David. Lynsey is a friend of ours, who we know through the local theatre scene. They had a car crash last Sunday, which has sent shock waves through the bay. There is a huge support network, which has been set up on Facebook, and there are a lot of people sending positive thoughts and praying for both of them.
Please spare a thought for them, if you would.



  1. the bladder problem?been that lol.often.ask your MS nurse to reccommend you to an incontinece nurse,sounds awful but she was so helpful to me.least mine was.theres a new porta loo just come can prescribe it.only just out.ladies and gents version.says he who always carries it in his car.looks like a large film cannister.clever idea.costs a fortune to buy,but as i say,available on prescription.the nerve pains in the night are awful,im on baclofen which helps.but we are all different amelia.every sufferer has different symptoms.thats why its such a nasty evil disease.good luck with the car.mort x

  2. Tysabri is in another clinical trial to "prove" that it helps with bladder problems. Sadly the licensee? failed to "mine" the data from previous trials, so while it's been anecdotal from some Tysabri patients that bladder problems are 'eventually resolved' must be it takes the body a while to 'heal itself'. Tysabri is also approved 2nd line for Crohn's disease or irritable bowel syndrome, as it helps heal there, too.
    go to & enter "natalizumab" to see current trials (one for cancer, too!)