Friday, 27 May 2011

MS Register!

This post is to tell you about the new MS register that the UK MS Society has set up.
It is a short - 3 question - survey to fill out that will enable the MS Society to collect data about who has MS and where abouts in the UK people with MS are. The idea behind it is to enable better knowledge which will allow better services to be provided.
If the powers that be know where people are and what services are needed in that area then people are more likely to be able to ask for those services knowing they have the correct statistics to back them up.
For too long now the standard saying was that there were 85,000 people in the UK with MS. I've been diagnosed now for over eight years and that figure has stayed the same. It can't be right.
But without a register for people to sign up to, no-one has been able to change that figure with any certainty. Hopefully this register will allow them to do that. I personally think we might be in for a shock, when the real figure is announced!!

The following is taken from the MS Society website

The Register could

  • Revolutionise the focus of MS research, opening new avenues to explore
  • Get more accessible and targeted clinical trials for people with MS
  • Get new and highly accurate evidence to present to government
  • Get more targeted funding and support for people with MS
  • Support future research into cause and cure

But the Register will only work if enough people with MS take part. You can be a part of the big picture, by putting MS on the map.

We urge everyone with MS to join us.

Find out more and join now at

So if you live in the UK and you have MS, please sign up to the register, it is really important and could help shape things in the future!


Monday, 16 May 2011

Birthdays, Weddings and Holidays!!

It's May, the month of celebrations!!
May has always been a celebratory month for me as both mine and my brothers birthdays are in May.
Happy Birthday Simon........for yesterday!!
Then I met Martin, my husband, and his birthday is May 6th - Happy Birthday for then Martin!
And tomorrow it's my birthday!!
May 17th is a popular birth date, I know of four other people that have th
e same birthday as me!
My old dancing teacher, Jill, a dancing friend, Julia, a musical friend's dad, Mike and a beautiful friend of ours, Jeane!

I want to wish everyone
a wonderful day, may it be as special as you all are!
And then there are the weddings.
We have two couples who are close friends of ours. Joe & Rob got married last December 17th and Matt & Claire got married on May 7th. We both want to wish both couples a long and happy marriage.
Both weddings have been very special and we thank you all for letting us be a part of your special days!

And now for the holiday part of it!
Martin & I, Joe & Rob and Claire
& Matt have booked a long weekend at Centre Parcs in Longleat. We are going in September!
We booked it last year, so it seemed a long way off but it is now starting to
creep up on us and we are starting to really look forward to it now!!

Here are some photos of the weddings and of my birthday cake - I had a special one made this year & its amazing!!

Friends at Joe & Rob's wedding!

Joe & Rob cutting their cake!

Matt & Claire's wedding!

My amazing birthday cake!!

The weddings were both fantastic and my birthday cake is happy and spoilt girl!!!

Love & hugs to everyone

Wednesday, 4 May 2011


The start of my year wasn't the best, but I would like to think that I have come quite a long way since then.
My pain issues haven't changed, but my attitude towards them have definitely changed. I am doing relaxation regularly now and I am sure that it has had a positive affect on me.
I can feel myself being able to relax myself during the day. It doesn't make the pain go away but it does help me deal with it a little better.
I am seeing my pain clinic doctor next Monday and I look forward in being able to tell him the steps I've taken to be more positive and pro-active!

Unfortunately, as well as being more positive I have also had some bad news.
I ended up back in hospital in February after I had a problem with my right eye, it wouldn't open properly. The eye lid itself was only opening about half way. I had a nerve flickering within the back of my eye. It felt really obvious to me but it wasn't visible. And I definitely had blurred & double vision.
I didn't know whether it might have been optic neuritis, so I went to see a GP at our surgery. She did some tests and checked my eyes, but she wasn't sure what was going on, so she sent me down to the hospital for me to get it checked out down there.
I ended up staying in hospital for another few days and while I was there they wanted me to see the eye clinic in the hospital. I had a visual field test and then I was seen by an optician who did quite a thorough check of my eyes.
He couldn't tell me what was going on but he was fairly sure that it wasn't optic neuritis.
It was left that another appointment would be made and for me just to see how things went.
I had that follow up appointment last week and saw the consultant eye specialist.
I had the visual field test again, but this time I found it much harder. My right eye felt like it couldn't focus properly so I found it hard to spot the lights.
After the test, I then saw the consultant. He did a really comprehensive check and sent me out for half an hour after he'd put some drops in my eyes to dilate them.
I went back in and he did some more checks and then gave me his conclusions.
Sadly he said that my eyes have been affected by the MS. The nerves in both eyes have been damaged by optic neuritis.
On the plus side, it's not too bad, but, of course we have no idea whether this is it or whether it
will get better or worse.
My peripheral vision isn't great with a mixture of blurred and double vision. And my eyes are very sensitive to light.
He's suggested reactor light glasses or tinted lenses and to wear a baseball cap in the summer! Which I actually do quite a lot anyway, I just didn't realise why I do it!
I was quite disappointed when he told me this news. I think because I had been told that it probably wasn't optic neuritis, I had put that to the back of my mind, so I wasn't expecting it to be that.

I am not dwelling on it though - or at least trying not to!!

We are continuing to be as positive and pro-active as we can.
We are continuing with swimming, which is going well, we are loosing weight - Martin has a head start but at least I have started now!!
And I have got back into making cards again. It is something I really enjoy, but I haven't done it for quite a while.
I kept thinking it was too painful and I didn't want to add to that pain. But one of the things my pain doctor said was that I shouldn't stop doing things I enjoy just because they hurt. I couldn't understand that to begin with.....why would I purposefully do something that I knew would cause me pain.
It is about quality of life and a thing that my psychologist calls opportunity cost.
Doing something I enjoy, but knowing that I will pay a price for it. The satisfaction I get from making my cards and the creativity I can use outweighs the pain that I get.......even though it really hurts!!

I must just add that two very good friends are getting married on Saturday - Matt and Claire, we wish you a wonderful day and a long and happy life together!
With love
Amelia, Martin, Barnaby and Kit Kat