Sunday, 22 November 2009
This week was Tysabri number six.
I am pleased to report that it went better than it did the last time, although it didn't go without a hitch............unfortunately!
I arrived at my allotted time, but had to wait, which is becoming very normal!
There are a group of about six of us, who all go down to Plymouth on the same day. The difference between myself and the others, is that because I have had the portacath fitted, I have to wait for a registered nurse to be able to sort out my portacath, where as the others can get their cannula's done and away they go with their infusions. I'm not complaining though, because I am becoming more and more convinced that this was the right way to go.
Emla cream is a magic cream that nurses put on the back of children's hands, when they have to put needles in, so of course, I have asked to have this cream put on my scar before they put they needle in! It does work though! I realise that I have altered sensations all over my body, but it always surprises me, all the different ways it affects me.
Unfortunately, this time, it took two attempts to get the needle into the port. The first time, it didn't go in properly and when the nurse tried to flush it, nothing happened. So she took that needle out and tried again. This time it went straight in, and hit the back of the port. It flushed well, so she hooked up the infusion. I lay back straight away, this time, because last time, when the infusion went in, it hurt like hell. I really thought they might have to stop it last time, but it didn't happen this time, so I think I may have sorted that out.
The main issue I had this time, was that it virtually knocked me out, almost as soon as it was administered. I really struggled to keep my eyes open. It was very strange. But the good thing about that, was that the time went very quickly!
Once it was finished, Martin was able to drive me home, where, I just crashed out for the rest of the day.
I still can't say whether it is having any affect or not. But I need to keep giving it a chance!
I am still experiencing this horrible flickering of my nerves all over my body. It is such a strange sensation and one that really causes me quite a lot of pain. It is very disturbing.
Some good news though, I have finally got an occupational therapy appointment on Wednesday morning! The lady is coming to the house and hopefully, we will be able to talk about my need to have a wheelchair, but I am also going to talk to her about our bathroom. I want to see whether we will be able to get our bath taken out and a double shower put in, so that I can put a shower chair in there and I won't be so reliant on Martin to help me with a shower. That isn't to say I wouldn't still need his help with washing my hair etc, but it would make me feel just a little more independent.
I really want to sort out a wheelchair though, because I think it would just take the pressure off me. I still think I would push myself a lot to walk places, but when I am in situations where there is a lot of walking involved, it will give me the choice. Then it's up to me to make it eh?!!
So, I am looking at the week ahead. I can't believe we are into the last week of November.
It will be December very soon, which means CHRISTMAS!!
Martin and I get very excited about Christmas! It is such an enjoyable time of year, and we do our best to enjoy it as much as possible.
I cannot believe that another year is nearly passed and when I look back over the passed year and see how much as changed for Martin and I, it is quite bizarre. But I would like to think that we are in a better place now than we were this time last year - long may it continue!
Saturday, 14 November 2009
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.
Friday, 6 November 2009
Oh, I really wish I could get myself organised and write more posts, more often on my blog!!
Anyway, here I am and another week has gone by.
I am pleased to say that Martin and I have not scratched each others eyes out, by being around each other all day!
In fact........... and I apologise for being soppy..........actually, no I don't - but it just feels even more special to be able to spend time with him and to get things done too!
The first week was taken up with getting applications done for the relevant benefits to apply for. We knew it was going to be a lot of paperwork, but wow, I feel like we have used up a tree's worth of paper! Why do they insist on asking the same questions, over and over, just in several different ways? It is very frustrating!!
I finally feel like we are achieving things around the house. The lounge is looking a lot more organised and far tidier!
We have a lot of pictures and Disney art, that were taken off the walls, so that decorating could be done. They haven't made it back on the walls for well over a year, but finally, we are starting to get them put back up - it feels so satisfying!
The one thing we have been able to do, without trying to squeeze it in on a weekend, is go and test drive some cars.
I am lucky enough to qualify for a car on the Motability scheme.
I thought they were mad, when I was told that I would be able to get a brand new car, to have for three years, after which, I could change it again for another brand new car! I had never had a new car in my life!
This was back in 2004, when I first qualified for the Higher mobility rate on my DLA (Disability Living Allowance).
The first car we went for was a Peugeot 206. At that point, we didn't really think practically, we just went for what we wanted!
I was also astounded, that I could get it adapted, for me to drive it with hand controls.
Drive, with my hands, were they mad?!
It totally changed my life. I hadn't driven for about six months as I just didn't trust my legs, and I knew I would never forgive myself, if anything happened, just because I wanted to drive.
I was told about hand controls, and I was given an assessment, to see what I would need. I was just blown away - I would get my independence back!
I have a push/pull accelerator and brake, which fits under the steering wheel and attaches to the pedals. It has to be an automatic car for the attachments to work. I also have a steering peg, that fits on the steering wheel, to allow me to steer with one hand! But the pedals are still there, so Martin can drive it with his feet, as a normal car.
After a couple of years of driving the Peugeot, things had got a little more difficult for me. By the end of the three years, I was finding it really difficult to get in and out of the car. And it wasn't really big enough, if we wanted to fit any equipment in it, like a wheelchair or a scooter. So a few months before the contract was up, we started looking at what to get next. But this time, we did look around and tried to think practically about it.
For car number two, we decided to go for a Chrysler PT Cruiser. Wow, what a car! We did test drive the Vauxhall Astra too, but there was no contest!
Again it was fitted with hand controls. I felt like a kid with a new toy! It was so much easier to get in and out of and there was so much space in it. It had a lot more room in the back seat area, so I felt like I could ride in the back, should I need to.
This car has been a total joy to own, but the downside to this car has been the fuel consumption. We knew before we took it, that it would be a thirsty car, after all, it has a 2.4 litre engine! But with the price of petrol increasing like it has and with our circumstances changing, financially, it has not been the cheapest car to run.
So now, here we are again, getting ready to choose car number three!
Where as with the previous two, we had a clear idea of what we wanted, this time we didn't. I had been looking around at different models for a while, but there was no front runner. Then I came across the Nissan Note. I liked the look of it, it has a quirkiness about it! I looked it up on the motability website, to find out if we could get one. They have an automatic model and the advance payment isn't too bad.
Then I noticed an advert for a Citreon C3 Picasso. I loved the look of it! Again, I looked on the motability website. We could get this model for a nil advance payment, but it doesn't come as an automatic. I thought about it for awhile and discussed it with Martin. Did I need to drive? I was considering giving up driving. Martin is now my full time carer and therefore will be around to drive me, and since my last relapse, my right hand has not been the same. The sensations in that hand are constantly altered and there is always some degree of pain. I can still drive, but not without discomfort.
I wasn't convinced either way.
So we went to look at the Citreon first. It was brilliant. It was easy to get in and out of, there is a lot of space in the boot and the back seat area. And it comes as a diesel manual, so the fuel consumption is great. Martin test drove it and felt quite comfortable doing so.
We both felt that this could be the car for us. BUT, we still wanted to test drive the Nissan, just to be sure and I needed to be sure about giving up driving.
We went to see the Nissan Note. And I have to say, I was pleasantly surprised. It is quite deceptive, because there is a lot more room inside, than it looks like there should be from the outside! Again it is easy to get in and out of and it feels really comfortable. Martin test drove it and he felt it was a bit more stable to drive. I certainly felt good in the passenger seat.
It comes as an automatic, so they can get the hand controls fitted and I would be able to drive it. The fuel consumption isn't as good as the Citreon, because it is an automatic and it is petrol, but it is still better than the PT!
So we are now left with a dilemma!! Do we go for a manual car that is diesel so has good fuel consumption, but that I can't drive, OR, do we go for the automatic car, that has lots of space and I will be able to drive, but the fuel consumption isn't so good?
We have still to make our decision, so watch this space!!!!