MS Awareness Week - 28th April to 4th May 2014

MS Awareness Week 2014 (28 April – 4 May)

There are several charities out there that support not only people who live with MS but their families and friends too. It can be practical help like helping with grants for essential equipment or it could help by just providing information for families, friends or employers to help them understand the complexities of the illness.
There are a couple of main charities that are the usual first port of call for people.....The MS Society and The MS Trust.
Both of these provide essential help every day throughout the year for anyone who is or has been affected by MS.

This year's awareness week is 28th April to 4th May and there will be lots going on all through that week to promote the public awareness and to raise vital funds for these charities.

Here is a campaign from The MS Trust, see if you can find a way to join in and help!

The MS Trust 21 Challenge – 21 ways in 21 days to raise funds and awareness and make a difference for everyone affected by MS. The campaign kicked off on Monday 14 April and leads up to MS Awareness Week.
No one experiences exactly the same MS symptoms and everyone has their own challenges and goals. So they’ve identified 21 simple ways everyone – people with MS, their friends, families and health professionals – can make a difference: from holding a Bold In Blue cake sale to spreading the word about MS Trust resources or riding a zipwire across the Tyne! To find out more visit mstrust.org.uk/awareness

The MS Trust is 21 years old this year and they have been providing free, reliable information to everyone affected by MS in that time. They see the impact of this information every day: it can help someone find a way to manage their MS symptoms, stay in work, or help their children understand their condition. But it costs them £2,250 per week to fund this work.

So help them to help us, spread the word on Facebook and Twitter, why not use the hashtag #msweek so everyone can follow the campaign as it happens?

Follow them at twitter.com/mstrust or facebook.com/mstrust.uk and keep an eye on 

mstrust.org.uk/awareness for all the latest updates.

I've Started Swimming Again!!

It's been a while, actually, this time, it's been two months since we last went swimming. We went on Monday and boy did it hurt! I did 10 widths and 20 lengths........I'm learning though because while we were in the pool I felt that we could do more. We didn't though, we stuck to twenty lengths and I'm so glad we did! 

The past 48 hours have been a bit of a nightmare......my legs have been so heavy and tired, my body has been buzzing all over and I've been even more fatigued than usual. It's amazing how long it takes to recover too. I was remembering when we had been training for a while last year and of course it did have an affect on me afterwards but because we were going regularly my recovery time was so much quicker........I found it impossibly hard to actually get up on Wednesday morning!! 

But I can't wait to go back!! 😉

It's weird because this time last year my best friend, Joanna, and I were working towards doing our sponsored swim. We had decided that we would swim a mile between us. In the pool that we use that worked out being 120 lengths......60 each. 

We decided on a training program and we set out how we were going to do it. We would each swim six lengths at a time in a relay. So Joanna would go first and swim six lengths then she would rest and I would swim six lengths and so on. We did this ten times each and there was our one hundred and twenty lengths. 

Joanna was swimming to raise money for the British Heart Foundation and I was swimming for the MS Society. 

When we started training we didn't set a date for when we would do it, we just set about training and when we were getting close to the target we then set a date. It ended up being the beginning of MS awareness week.....28th April. 

We completed our swim and we were so proud of our achievement! Not only had we set out to swim a mile between us, we had hoped to raise awareness of our charities and to raise much needed funds for them both. We achieved all these things and we raised over £1000 too! 😃

It was amazing how having a challenge like that had given me something to focus on, which in turn kept my mind busy. Don't get me wrong, it was quite a challenge and it took a toll on me, physically, but I was at a point where I needed that.

I had hoped that I would push on from there too. I was swimming sixty lengths, it wasn't easy but I was in a zone and I wanted to now build on that. Our plan was that this year we would both swim the 120 lengths! 

It didn't seem that unrealistic. We could already swim sixty, we had a training plan that worked so we would have a short break and then get back in the pool and swim just for enjoyment. Then after a couple of months just swimming and not training, we would start concentrating on building ourselves up to be able to swim 120 lengths each.......a mile each.

Unfortunately things haven't exactly worked in our favour. For a few months last year I had been experiencing very debilitating vertigo which kept me out of the pool. It has now been diagnosed as Menieres Disease. I have lost most of the hearing in my left ear as a result of the Menieres so I knew I needed to be careful.

But, touch wood, I've not had a severe attack since mid December so I'm happy that we are back in the pool but it means that we find ourselves back at the beginning and starting from scratch. That's ok though, as Joanna has told me, we aren't in any rush and we will get there because we are both determined to! 😀

Giving yourself a challenge, however small, or something to focus on, I believe, is really important when you are dealing with any long term, chronic illness. Anything that can distract you from your symptoms and the daily struggles of managing your condition can only be a positive thing........as long as you don't take it too seriously otherwise you are in danger of making things worse for yourself! This is a lesson that I have taken too long to learn though. I push myself so hard sometimes when there is really no need to and it's only me who pays for it in the end!! 😉

Now that spring is starting to show its face, I hope you are all enjoying the better weather and the flowers that are starting to bloom.......long may it continue!! 

XxXxX

What Do You Miss?

I've never been one to sit and wallow!
I remember, not long after I'd got my diagnosis, having a conversation with myself (as you do!) about having a choice. I could choose to sit and feel sorry for myself about what life had thrown at me or I could get on with my life as best as I could. To me that wasn't a choice....I wasn't going to sit and watch life pass me by. 
Now don't get me wrong I have my moments.......just ask Martin and he'll tell you, but I guess what I'm saying is I didn't give up. I had too much to give to life to watch it sail on past me!

But just recently I realised something that made me quite sad, something that I hadn't really thought about before........I miss going for a walk! 
Just getting up, being out in the fresh air and walking wherever your feet take you. 
Now I can still walk but I need to use two gutter crutches so it takes quite a bit of effort, it is painful and not overly pleasant! I've been on them for over ten years now and it's only recently that I've had this realisation, it's strange isn't it?

I think my recent trip to Letchworth made me realise just what an effort it is for me to walk, having to walk as much as I did between trains and taxi's. One of my friends, who also has MS, gave me a telling off because she couldn't believe that I hadn't asked for assistance. Apparently they have buggies at the main London stations that will pick you up from the train and take you to the taxi's!
I had no idea but then I find that with a lot of things since becoming disabled, they don't always make the things that are available to help you, obvious to you. There were lots of things to do with financial assistance or practical help, which you would think should be readily available to people, that I wouldn't have known about if someone who had been in the same position as me, hadn't told me. 
Going away to Paris was a prime example! 
We had no idea that the MS Society have their Social and Activities fund. That is there for anyone who has MS to apply for a grant to help towards a short break or an activity that they wouldn't be able to do otherwise. It is a fantastic thing and I can say without any hesitation that it has done Martin and I the world of good but had my friend not encouraged us to apply we'd never have had that experience! 
The MS Society also have grants to help with equipment etc. This is also a very valuable service available. 

So many really positive things have happened this year or are going to happen that it feels quite weird! I know that sounds a bit strange but I guess Martin and I have struggled for over ten years without much help or assistance that to be getting it now feels a bit alien! I have found myself wanting to say that we don't deserve it. Now I don't mean that in a shallow way, I think we have just been blown away by the generosity of people and organisations. 
And yes we have had a very difficult couple of years with both of us being very poorly but that's just life isn't it?

We've been to Paris, we have a London trip to plan for, we have had the situation with my carer and going onto Direct Payments, which is working brilliantly and is giving us so much more freedom and opportunities. 
We also have lots of plans for days out and places we want to visit........but none of them will be going for a walk anywhere! ;-) 

XxXxX