Wednesday, 5 February 2014

The generosity of people, it puts your faith back in human nature!

2014 is going to be a good year!

It is already quite exciting because Martin and I are off to Disneyland Paris next week and this has all come about because of an amazing lady who is always looking out for Martin and I. She is a remarkable friend who I met over 10 years ago. She has MS herself but she is a rare person who cares a lot about other people and making sure they are getting everything they deserve. 
She was telling me one day about something that the MS society have called the Social and Activities fund. It is a grant that people can apply for to help anyone with MS to do something that they wouldn't normally be able to do. She said to me that I ought to think about something that Martin and I would like to do because I could apply to it. I wasn't sure that we would qualify for it after all we had been away with my Dad last year, but she asked me when was the last time that Martin and I had been on holiday together.....just us. I thought about it and I think it was probably 2005! 
I still wasn't sure that we really deserved anything like this but she got cross with me and said that nobody deserved to go through everything that Martin and I have been through over the past couple of years. 

I thought about Paris because we have a friend who lives there and we had said we'd love to go over and see her and also take in Disney too.......we are big kids like that!! 
Anyway I didn't really think any more of it until my friend and I went for a coffee and she asked me whether I'd decided what we wanted to do! I told her my Paris idea and that to begin with I wanted to do it as a surprise for Martin but I then decided that if we were going to do this I'd really need his help to plan it all. I went home and told him my idea. He was definitely up for applying although neither of us really believed it would happen......things like that don't happen to us!! 
My friend organised for an application to be sent to us and she came round and helped us fill it in. She had also arranged for our MS nurse to write a letter of support and she herself had written one too. 
I had found a deal to go to Disneyland Paris, staying in one of the Disney hotels, with half board and tickets to both parks included but it had to be booked by Christmas day! 
This was all just a few weeks before this Christmas just gone. I remember it was a Wednesday. My friend took the application form and said she would put it together with the letters and get it sent off.........and that was that, we'd done it, but we still didn't really think we would get anything! 

How wrong we were! ;-)

On the Friday of that same week, so just two days later, my friend phoned me. She said we had better start planning properly because we'd been given a grant. 
This was about receiving the best Christmas present ever! And we didn't have long as we'd already thought that if we did get a grant we would go in February!
It didn't stop there because the grant from the MS society only covered the hotel and a few other bits. Martin had decided that he was happy to drive over - he's got to do it all as I'm not allowed to drive at the moment because of the Menieres Disease. It would mean we would have our car with us though which would mean having my wheelchair and a comfortable way to carry all the other things I would need to take like my Peristeen equipment etc. 
So we would need petrol money as well as money for sightseeing etc. My friend then organised application forms to send off to another couple of charities and we've received other funding to help cover these things. 
It really is amazing, my friend is truly amazing because without her we'd never have thought this was possible and without the MS Society we wouldn't be going! 
To be honest I'm still pinching myself to believe that this time next week we'll be on our way to France.............amazing!! :-)

I hope you are all staying well with this appalling weather,
Stay safe :-)

Sunday, 2 February 2014

I got an answer to my question, MS or Menieres Disease?

So last Monday I got an answer to my vertigo question, is it because of the MS or do I have Menieres Disease? 
I have Menieres Disease! 
I guess it's the lesser of two evils........I've had a few people ask me which I'd prefer it to be? Well actually I'd prefer it to just go away so I don't have to deal with it at all but I guess that isn't an option! 

I had a hospital appointment last Monday, they were going to look in my left ear and see if they could see what was going on and if necessary they would put a grommet type thing in the ear. It was all going to be done under general anaesthetic. 

We got to the hospital and I was called through to see the Doctor. Straight away he told us that they couldn't do general anaesthetic today as some members of staff were off sick and it was too dangerous to do without the correct number of people. However he did explain that the test they wanted to do in my ear was perfectly safe and OK to do with local anaesthetic. So they were happy to go ahead with that, if I was happy too. He then explained that they would look at putting in a Collar Button, which is a kind of grommet type device that they put in the ear. He said it depends on what he sees when he gets to look in my ear. 
I agreed that he could go ahead with the test, I have to admit that I hadn't realised that there was a test that could be done to confirm Menieres Disease. I did wonder why it hadn't been done before but I guess we had to rule out the MS etc. 

I was first on the list so there was no waiting around. I was taken into a small theatre room where the Doctor piped a cream into my ear. This was the local anaesthetic. It needed about an hour to work so I was taken to a recovery ward to wait. The doctor had also told me that they wouldn't be putting the Collar Button in today because my ear canal wasn't straight enough, if they do put one in it will have to be done under general anaesthetic.

After they'd finished with the next patient, they came and got me and took me back to the theatre. There was an audiologist in the room along with the Doctor and nurses. The audiologist was there to put some sensors on my forehead. The doctor then vacuumed out the anaesthetic cream and explained that he would be putting a thin probe in my ear. After that there would be some knocking sounds. I didn't need to do anything, just lie there! 

The test itself didn't take long, around 20-30 minutes and it didn't hurt either! The doctor said he'd talk to me after I'd got changed and so I was taken back to the recovery ward again. 

When the Doctor came to see me he didn't beat around the bush he just said that I had tested positive and that yes I did have Menieres Disease. I wasn't really surprised as it was what we had all suspected anyway. 
He said that they would see me again in about a month. 

I'm on Betahistine 16mgs three times a day which he was happy with but that is the maximum I can take so he suggested that maybe I could take less of it at the moment while I'm not having any clusters. I have lowered my dose down to 16mgs once a day for now so that when I do have some attacks I've got somewhere I can go with the medication. 

He told me to try and make sure I have a low salt diet and stay away from caffeine as much as possible! And then there was the usual advice that if I do have any attacks to look after myself, stay in bed etc all the things that you have no choice but to do when you have a vertigo attack. 

I'm doing okay at the moment (I'm touching my head while I write this of course!) My last attack was December 16th. That is really very good! I'm just hoping that it lasts......if not for a long time then at least until after we get back from our trip to Disneyland Paris in a couple of weeks!! ;-) 

I hope you are all doing okay and that the New Year is starting well for you all.

Sending much love and best wishes

Amelia XxXxXxXxXxXxX