MERRY CHRISTMAS AND HAPPY 2010

Hi everyone,

I just want to wish everyone a wonderful christmas.
I really hope that everyone who has or is affected in some way by, Multiple Sclerosis, is able to have as stress free and as symptom free, Christmas as possible.

I am going to make a pledge, that I am going to get back to updating my blog on a far more regular basis next year.
I started this blog in February this year and I have been fortunate enough to have met some amazing people and forged some great friendships. I appreciate all the support, help and advice that you have all given me, over the past year and I look forward to taking these friendships forward to the New Year.

May 2010, be a happy and healthy one, for us all.

Lots of Love and big Christmas hugs to everyone,
From Amelia, Martin, Barnaby, Kit Kat!
XxXxX

"Open & Honest"

Hey look at this, two posts in as many days!!!

I want to ask for some advice. I probably already know the answer, but it doesn't hurt to ask anyway!

I am really struggling with a strange sensation all over my body. It feels like all my nerve endings are flickering. It is so hard to explain, but it feels to me like I have put my hand in an electric socket and all the nerves have gone haywire.

It is a sensation that I have had on the odd occasion over the years, but generally it would go away once I went to sleep and I would only feel it on the odd night. At the moment though, I seem to be feeling it night after night. I thought, a couple of weeks ago, that it might be subsiding, as it was getting less frequent but now it is doing it almost every night again.

I went to my GP, but she said she didn't really know where to go with it now. I have been quite unlucky with the pattern my MS has gone. I have experienced pain right from the start and it has been really hard to manage. My GP admits that I probably know more about the condition than she does! So she advised me to go back to my MS team, the MS nurses etc, and see what they suggest. My concern, is, that I told one of the nurses about this flickering of my nerves, last time I went to have my Tysabri infusion. But because it was starting to subside, the nurse said that it should just go away now. I was a little downhearted because I was afraid it may return and it has, so now what do I do?

I know that I really need to phone one of the MS nurses, but I guess I know that they will say that there isn't much they can do or suggest, so, I'm thinking, what is the point of bothering them? I don't like making a nuisance of myself either.

I'm also struggling with a couple of other symptoms at the moment. Fatigue is hitting me quite hard but also, I am having trouble with my water works.

This is quite hard to talk about and it feels weird to be talking about it on my blog, but when I set out to do this blog, I said I would be open and honest. Unfortunately bladder problems can be a big issue for people with MS, so I'm not going to pretend mine don't exist.

The problems I am having, are, that I need to go much more frequently and when I need to go, that usually means right then. I haven't had any proper accidents, but there have been some near misses! It also doesn't feel as though I am emptying my bladder fully, when I do go.

I have been tested for infection but it has come back all clear, so I believe that this is being caused by the MS.

When I spoke to my GP, she said, that if the results were that there was no infection, then she would look at getting an ultra sound done, so that they can see if I am emptying my bladder or not. If not, she said there were things that could be done, but that we would cross that bridge when and if we come to it!

When I put these things together, I do wonder whether it equals a relapse, but I don't even want to go down that road!!

Am I burying my head in the sand.............maybe, but I never know when things are different and I need to tell someone or when things are just due to a change in the weather or something like that!

When you have symptoms, like pain, day in and day out, I believe that it impairs your judgement after a while.

On a lighter note, I had to post this photo, it had me in stitches!

It is of Kit Kat, our little baby girl. She had jumped into an empty box that I had put on top of our stove, and she looked really cute, so I decided to take a photo. I got a couple of her lying in the box, but then she sat up and just as I was taking the photo, she yawned - priceless eh?!!

XxXxX

Cars, Singing and CHRISTMAS!!

Yet again, I feel the need to apologise for the lack of posts over the last couple of weeks! I just don't know where the time is going at the moment.

It's not that I am really busy, but I think Martin and I are taking time to get used to our 'new' life.

That's not a bad thing at all! We are really enjoying things now. I certainly feel much less stressed and a lot more calm since Martin finished work. It's so nice to have him around to help me with things. Especially things like having a shower, it makes such a difference not to have to plan it all around when he will be here because of work! I also feel that we are making progress with the house. There are lots of plans for after Christmas, the spare room is such an embarrassment right now, so that is top of the list! But it is good to be able to make those plans and know that we will be able to follow through on it, instead of just hoping we might find the time some day!

We have been very lucky, because we have been able to sort out the financial side of things relatively quickly. We were both under the impression that it was going to be after Christmas before we had it all sorted out, but we are well on the way to being there now. It's not all done but it's a lot further along than we expected, which is a relief and going to make Christmas a lot less stressful!

All in all, I think I can say from the both of us, that this has been the best decision we could have made.

So I just want to say a big thank you to Martin, again, for giving up his job for me. I feel very special & very lucky!

As I have said, it has been a busy couple of weeks and the build up to Christmas is always an exciting one for us - we LOVE Christmas!

One exciting thing we have done, is order our new car! I finally made a decision and we have gone for the Nissan Note, Acenta 1.6 litre automatic. We went back to the Nissan dealership and I was able to see the car again. I got in and out again and just had a quick look over it and it just confirmed for me that we were making the right decision. So we put the order through!

It is so much fun to be able to order a brand new car, something I never thought I would be able to do!

I have ordered the adaptions for it too. I am having the push/pull brake, accelerator and the quick release steering peg. So I drive with my hands. These are the two adaptions I have had every time I have had a car on the motability scheme. I can't believe that we are onto our third car! We got the first one in 2004 and it is funny how much has changed on the scheme since then.

The first time, we had to pay for the adaptions and for them to be fitted, but now, the ones that I have, I don't have to pay for. We do have to pay a small advance payment, but that is our choice because of the car we have chosen. But when you work out the advance payment over three years, it's peanuts to pay for a brand new car, so I'm not complaining about that!

One new thing, this time, was that we were able to choose our number plate, from a small list that they had available. It was very funny, because I let Martin choose which one to go for. I am quite good at remembering the number plate, so I thought if he chose it, then it might help him remember it! The one he went for has NXO as the last letters. It doesn't stand out on it's own, but I laughed my socks off when I realised how he had chosen that one - he looked for the Star Trek ship's number. We couldn't get NCC, which is the new Enterprise, but he could get NXO, which NX-O1 is the original Enterprise number - priceless eh?!!

We should be able to have the car on our change over date, but it may be a week later, depending on when the car arrives and when they can get the adaptions fitted. It really is amazing, they make everything so easy for you. Once the new car is ready, all you have to do is take the old car to the new dealership, where they will take it in and deal with it going back to motability. And once you have done the paperwork, you drive out with the new car, it's as easy as that!

So roll on 20th January 2010!

Another thing that has been happening, is that I am singing again! The group that Martin and I sing in, How Apt, has got back together again, after a little break. We are working on some Christmas carols and also going over the pieces that we have done before and adding more stuff to that. A lot of promotional information has been sent out to lots of hotels, all over the local area. We have one booking for Christmas Eve, but unfortunately it will be without Martin and I, as we are going down to Bournemouth for Christmas! But fingers crossed, there will be other bookings too. Check us out at http://www.how-apt.com/

It feels good to be singing again. Each time I come back to it, I realise just how important it is to me, and how much I really enjoy it.

We have also had our first get together, for Closer Than Ever, which is the concert that Martin and I have organised for next June, to raise money for the MS Society, South Devon Branch and Rowcroft.

"Closer Than Ever" by Maltby & Shire is a concert that we put on in 2004. We had four singers, a pianist and a bass player and we raised £1000 for the MS society. This time we are using eight singers, a pianist, bass player and drums and we plan to raise even more money this time.

It was so good to get together and just sing through some of the material again. We just love singing this music, it is fabulous. Every song in it, is a great song.

This is the link to the information about the concert, scroll down to the last item in the programme and that is us!

http://www.toadstheatre.co.uk/programme.html

I also feel quite humbled. I have these friends, who are willing to give up their time and to put in all the effort to perform this, because I have MS and they want to help.

How lucky am I?

XxXxX