Sunday, 31 January 2010

I've got it!!

I've finally got my new car!
I was so pleased to pick it up, although I was a little sad to drive away from the PT, it has served us well for three years!
We took it straight to the petrol station, as there was barely any fuel in it. We put the petrol in & there was a warning light that came on and stayed on. We decided that we ought to take it back to the dealership, just to get it checked out.
We couldn't believe it when I stopped at a roundabout and was shunted up the backside! We looked around for somewhere to pull in, but then the car just drove past me, around the roundabout! I followed him flashing my lights. He then pulled in and we were able to get his details. He tried to say that I had stopped suddenly at the roundabout, but as I said to him, I had only just picked the car up, so there was no way that I would be stopping suddenly. And let's face it, it was a roundabout, of course I would be slowing down and stopping!!
It was just a little scratch on the rear bumper, but it felt so much bigger to us!! The gentleman said he would pay, so we will get some quotes and let him know!
We went back to the dealership to get the warning light looked at, which turned out to be something small, which they sorted out for us.
We left there and drove to Halfords, so that Martin could get an audio lead to play his ipod in the car! That's all he worries about with the car!
I also wanted to get some mats. I had thought about getting the Me To You mats, but they weren't great ones, so I went for some cheaper ones! That meant I could get some Me To You seat belt comforters!
When we got to Halfords though, we realised we had left the disabled badge in the PT. Oh this day was going so well!! I rang the dealership & they found it for us, but it meant we had to go back there again!!
We got home that afternoon, where I just crashed out on the sofa, exhausted from the days events!
The car is lovely though! A real pleasure to drive and it looks to have lots of room, although we haven't tried putting the wheelchair in it yet! I am so glad that I took the decision to continue driving, I know now it was the right decision. When we were going to collect the car, I really wanted to drive it away. I would have hated it if we had picked up the car and it was a manual transmission that I couldn't have driven! So I am not ready to give up mu independence yet!

I have been really struggling with pain again over the past few weeks. Earlier in the week, I had another night, where the pain disturbed my sleep, so I decided that I would try and speak to the MS nurse again. I find it quite difficult to speak to them, because I don't like making a nuisance of myself, but even if they couldn't help me, I thought they should know that the pain is continuing to be a problem.
As it was, neither nurse was available until next week and I was advised to call my GP instead. That turned out to be quite a good move. I spoke to the duty Doctor, who went through what medications I am on currently. I had stopped using the Butrans patches, because I was finding them really itchy and they were leaving a rash on my back, but the Doctor told me that there is a tablet form of that particular drug that can be taken instead! I was also taking Tramadol, 100mg four times a day. He told me that there is a tablet form of Tramadol that is a slow release over twelve hours and he suggested that it might be worth taking one of these at night, to cover me over night.
He did a prescription for both of these medications and I was able to get them the same day. I tried the Tramadol that night and I was able to sleep through the night. I am continuing to use it and it is definitely helping. I am still getting pain, but it isn't severe all of the time. I woke up last night, but my hands were painful but very uncomfortable rather than screaming pain!
So I will continue with these meds, until I go for my pain clinic appointment on February 17th.

It has gone very cold again over the past couple of days. I am sat here, writing this, with three layers on and the nerves all over my body are flickering like mad. There must be some relationship between my sensations and the cold. And also the heat in the Summer! I can't win!
And I must just tell you that our new healthy eating plan is going really well. Martin & I are following Weight Watchers, which we have been doing for almost four weeks. In the first three weeks I have lost a fabulous 14lbs! I am not surprised because I have a lot to lose, but it is a great start! I already feel thinner and that can only be a good thing. I am expecting for the weight loss to settle down and for me to lose an average of 2lbs a week from now on, but we'll see! It is making a huge difference that my head is in the right place for losing weight. I have wanted to do it for a while now, but I just didn't have the will power or the heart to stick to anything. It helps that Martin and I are doing it together, because it just feels like we have changed our habits rather than being on a diet. That is what I like about Weight Watchers, you are allowed to eat anything, just in moderation!

A new year and a new start, long may it continue!

Wednesday, 27 January 2010

Pain, Pain, Go Away............

It's been a tough couple of weeks, again :(
I have been experiencing lots of pain. I spent a few nights waking up at 4am in agony. My hands were just so painful. It's been really difficult because of the cold, but even though it has warmed up a bit, the pain hasn't subsided at all.
I have also had pain in my feet, up my legs and in my lower back. It is driving me crazy.
My feet hurt a lot. It is a strange sensation, like sand or grit is rubbed all over the bottom of my feet. As you can imagine, it makes walking rather uncomfortable. But I have to switch off from it, otherwise I wouldn't walk anywhere!
And the pain that goes up my legs feels as though the nerve endings are going haywire. It is similar to the sensation I have had all over my body, so I guess I should feel lucky that it is just in my legs eh?!
The pain I get in my lower back, is a burning pain. It sometimes feels as though someone has got a handful of pins and is stabbing them into my back.
As you can imagine, put all these feelings together and it is not a pleasant experience at all.
You learn to live with it to some degree, otherwise it would just dictate everything. But at the moment, I am really struggling with it.
When I had my last Tysabri infusion, I spoke to the MS nurse about it. But because I have had a referral to the pain clinic, they are going to wait and see what the outcome of that appointment is.
That is all very well and I appreciate that they have pretty much run out of ideas, but it doesn't help me at this point in time. The appointment is on February 17th, three weeks away!
I rang the nurse again today, because even though I know they can't help, I felt they still needed to know that I am having a hard time with this. Unfortunately neither of the nurses were there. I was advised that it might be worth contacting my GP, so I am going to try and make an appointment tomorrow. I'm not sure that it will do any good, but I need to talk to someone about it.
I am a little concerned, that could this be a relapse?
The definition of a relapse is the onset of new symptoms or the exacerbation of existing symptoms, for a period of more than 24/48 hours. I have my pain symptoms on a daily basis, but there are periods where it is a lot worse than other times. This is one of those times and it has been about three weeks since it started getting worse, so does that make it a relapse??
I've had MS for over seven years, you'd think I'd know by now if I'm having a relapse. The problem is, that I have had relapses in the past where my legs have lost mobility or the right side of my body has gone numb. It's not like that this time, but that doesn't mean it's not a relapse, does it?

Another thing that happened today, is that I had an ultrasound on my bladder and kidneys. It was partly to check whether I am emptying my bladder properly or not. They are sending the results to my GP, which will take about a week, but I was told that I hadn't emptied my bladder fully. I'm not entirely sure what this will mean for me, but I guess I will find out in about a week.

Some good news! We will be picking up our new car on Friday morning! I can't believe that it has been delayed for so long, but it doesn't really matter! It just means that we have had the PT cruiser for about ten days longer than we should have done and I'm not really sorry about that, as I will be sorry to see it go on Friday! I am really looking forward to getting the new car though. It is always exciting, partly because I can't believe that we get a new car every three years. This is our third car on the Motability scheme and I still find it laughable that they let me have a new one!! It is a great scheme though and I wouldn't still be driving, if it wasn't for the scheme, so I have the greatest respect for it.
Nissan Note, here we come!!

And finally, a concert update. We have only had three rehearsals so far, but only one full rehearsal, where we were all there. We have another one on Saturday afternoon, which I am looking forward to! We have gone through the first group number and we have allocated all the solos & duets etc. On Saturday we will go over the numbers we did before and then start on the song that ends Act one. It is a fabulous number, which is actually two numbers put together. It is quite complicated, so we will need time for everyone to learn it. But it will sound amazing!!

Take care everyone!

Monday, 18 January 2010

I Really Hate Fatigue and Pain!

So another week starts!
Last week was a bit of a strange one, because so much seemed to happen, so I am looking forward to a quieter one this week.
I haven't been feeling too great today. I have been really fatigued over the weekend and it has still been affecting me today. It is so hard to keep yourself feeling positive and up beat when all I want to do is to curl up and sleep.
And pain is also a BIG issue. Although, I have had an appointment from the pain clinic, which I am quite pleased about. It's not until mid Feb but I have waited this long so I can wait a little bit longer, can't I?!
I just get so frustrated, nothing I try helps with it and I just get the feeling that I am doing something wrong. I know that is really silly, because it isn't my fault that this is happening, but it is just so frustrating. When you experience pain on a daily basis, it gets to a stage where that is all you can think about. And there is so much more to life than pain!!

Over the weekend, we started rehearsing for our concert, Closer Than Ever. It is so exciting and really good to be focusing on something else. We are performing it at The Little Theatre, Torquay, on June 25th & 26th.
We performed this piece of work in 2004. Last time we did it, there were four of us singing, but this time we are doing it with seven singers. We have the original four and then three other friends are joining us. It is so good to be redoing it, as it is such a great body of music.
It is made up of a collection of songs that are about all different types of relationships. There are solos, duets, trios and group numbers and each number is fantastic in it's own right. It is quite rare to have a show where every song is a good one. We have a really great group of people involved and that makes it really exciting to be a part of.
I am really excited to be doing another fundraiser for the MS society again. We are doing it for the local branch of the MS society and also for Rowcroft, which is a local care facility for people with cancer. The past two fundraising concerts we have done, we have raised a total of £2500. I'm hoping, that by doing this one for the two charities, we will be able to fill the theatre and raise more money!
It is good to be singing again, even if it is only rehearsing every couple of weeks!

There is no news on my new car yet. We were supposed to be changing it on Wednesday, but I think the recent snow and cold weather has caused the transit of the new car to be delayed. Hopefully it will only be a few days late but we'll see!!

I hope everyone has a great week!

Thursday, 14 January 2010

What a week!

It's been quite an eventful week this week. I have had deliveries, my infusion and a possible date for changing my car!

So it was Tysabri infusion number eight on Tuesday.
It went OK, although I was struggling with pain a lot, so I had trouble emotionally. The infusion itself was alright but it knocked me out again, as it seems to do every time I have it. I fell asleep in the car on the way home and then slept quite a bit once I was home.
While I was at the hospital, I had a word with the MS nurse about my pain. I told her, how I feel that I am doing something wrong, because nothing I do seems to help - and believe me I have tried lots of things - she assured me that it isn't anything that I am doing or not doing. It is just one of those tough things, I have symptoms that cause me a lot of pain and it is just incredibly hard to manage those symptoms.
They have done a referral for me to the local pain clinic, but I have been waiting for so long for anything to come of it. I was assured on Tuesday, that the referral had been done and I just needed to wait for a date, but she would chase it up for me though.
Yesterday I got a phone call offering me an appointment, it's on February 17th! So I am keeping my fingers crossed that they can come up with something new to help.
On Monday, I got a surprise.
I had a phone call from someone saying they had a wheelchair to deliver to me and could they deliver it that afternoon! It was a bolt out of the blue. I knew the referral had gone off, but I was expecting to have to go up to Exeter to try it out first!
So I have my own wheelchair!
Because I wasn't expecting it, it threw me a little bit. I haven't really got my head around having one yet. I know it will help me and will allow me to have more energy etc, but actually using it is another matter! Because I can still walk, even if it is with crutches and using the crutches hurts my hands, I still feel that I should be walking.
Anyway it is sitting in the living room at the moment. It is good to have it there, so that I can look at it and get my head together about it. I did think about hiding it away somewhere, but I think this is better!
I have also decided to customise it with some of my Me To You stickers! I am a huge fan of the Me To You bear - the tatty teddy with the blue nose. I have collected a huge number of the figurines and a large number of the soft bears and now they have bought out blue nose friends, so I am having fun collecting those now too! So I figure that this will be a good way to make the chair my own!
On the same day that the chair was delivered, I also had a call from social services about fitting a grab rail in my bathroom. He wanted to know if he could pop round that afternoon, which was fine, so I now have a rail up in the bathroom too.
I hate having these things put up in the house for me, although I know that it does make things easier for me. It's the principal of it though!
The final thing that has happened this week, is that I rang the garage where I am getting my new car from. I knew that the date for me to give my PT Cruiser back is January 20th, but I wasn't sure when they were expecting the new car to come in. I have been told that they are expecting it in at the end of this week. They have contacted the people who put the adaptions in and as long as it goes to plan, then I should be able to exchange my car on the correct day - January 20th! I will be sad to give the PT back, because it has been a great car to own (apart from the fuel consumption) but it is always exciting, getting a new car! I know that I have made the right decision getting a car that I can drive, and not spending so much on fuel will be a welcome bonus!

I hope everyone is coping OK, especially with this cold spell we have been having.
Take care!

Sunday, 10 January 2010

Snow & cold!

Hi everyone................I'm back!
I hope you have all had a really good Christmas and New Year. And I also hope that you have all recovered from the celebrations!
I am pleased to say that we had a lovely time. I managed through the week quite well, but of course, afterwards I had a bit of a fatigue crash! That's to be expected though........isn't it?!
Throughout the beginning of January, we have been experiencing very bad weather conditions. Very cold temperatures along with snow and ice.
I wanted to ask people whether the cold weather has been affecting any of your symptoms?
I have been struggling really badly with pain. And my hands have been especially bad.
In fact, last night I was awake at about 4am with severe pain in my hands. I tried to go back to sleep but that didn't work, so I got up and went downstairs, to try and distract myself with the television. I just didn't know what I could or should do to help myself.
I felt really bad for Martin. He desperately wanted to know how he could help me, but I didn't even know how to help myself, let alone tell someone else what to do. It's horrible because I put myself in his shoes and I would be so frustrated and upset at seeing someone I love going through this.
I have Tysabri infusion number eight on Tuesday, that is, as long as we can get to the hospital! I am definitely going to speak to the nurse about these heightened symptoms and what I can do to help the situation.
It's a New Year and a new start for us, in our household. We have decided that it is about time to change our eating habits and to try and have a healthier lifestyle!! I'll let you know how it goes, but so far so good. I have tried all sorts of diets etc in the past, but none have ever been long lasting. So that is why we are looking at a lifestyle change, so that it can be something more permanent! I have to admit that I feel really good about it this time. My head seems to be in the right place for doing this. I have tried in the past, when my head hasn't been right and it just doesn't work. You have to want to do it and I am pleased to say that we both want to, which makes a big difference. I am hoping that I lose some weight. I'm not sure what affect the medications will have but I am not going to let that stop me! Also, when I have lost weight in the past, I have always been able to exercise. That is an issue now though, due to the lack of mobility. We have a Nintendo Wii though and I plan to use that to try and get a bit of movement. I will enjoy beating Martin at Table tennis at the same time!!
It is now 2010, so I can finally say that we are doing our concert this year!! We are supposed to have our first rehearsal today, but we are waiting to see what happens with the snow, as to whether we will be able to have the rehearsal! Fingers crossed though!
Anyway, it's good to be back, I hope everyone is doing well and I look forward to catching up with you all.