If you're happy and you know it.....

This is a day in my life..

Some friends get in touch and ask us to go out for Mexican and then cocktails after. I've never been a huge fan of Mexican food but I'm happy to go for a Mojito or more. Line 'em up is what I say! I'll pay for it through the night because alcohol means medication for spasms becomes useless which seems really unfair. I'll be up all night in some form of contorsion. But it'll be worth it, I think.

The cocktails are in a different place to the meal so I think I'll just check where the meal is to see if it's accessible etc. Shock, horror! It's in a basement. Of course it is. 

So I ring my friend and tell her I can't do the meal. She feels guilty and is so apologetic. She asks me to come and they'll pull me back up the stairs. Two in front and one trying to get my knees to bend. I remind her of the embarrassing situation not so long ago where I couldn't get up TWO steps and the palaver that caused. 

OK, OK she says. But please come for the cocktails. I'm there already, I say.

Having not been to the cocktail bar before and now on the rant for disabled access, even though I know this is unrealistic for some places, I decide to check it out.

OMG!!!! It's upstairs. By now I'm crying and making ridiculous comments like my life's crap and what's the point of a life like this to my partner. 

I know my friend feels bad and she says, next time I'll check where we're going and I'm so grateful some people think of me like that but it's not what I want. If there is somewhere people want to go but I can't then it shouldn't cause feelings of guilt. It's just how it is.

It's why I draw back a bit. It's a bit of self preservation. So to those who know me, please understand, I still love you!

There are times when you have to look at your life and realise just how lucky you are. I'll admit to not being very good at doing this but when I do, I 'm so grateful. My partner has to remind me to do it sometimes. 

Have you noticed at funerals, people go around saying that life's too short and we must stay closer and then you don't hear from them for months/years on end? Well, until the next funeral anyway. So, I'm stopping and taking stock of the things I'm blessed with at the moment.

Lilly hasn't been to school for the last few days of half term. She's got chickenpox - again. Apparently you can get it twice. She likes to sneak off with my phone occasionally to listen to music, youtube etc. She'll often leave 'presents' for me. This is what she left on my phone a couple of days ago. These things make me happy - and I know it!

Please get me to India and donate if you can xxxx

I'm pleased for you - really I am...

To the lady I've spoken to recently.....

I'm a live and let live kind of a person. My feelings are, if it's working for you and it's not hurting anybody else then do what you need to do.

Who am I to inflict my opinion on you?  Although I may have a strong one. I may wheel away or put the phone down and let rip about how I think it's wrong or a bad decision but I won't tar you with my point of view. Not unless you ask me and then it's all game!


So why do you think it's alright to to do it to me? Ask me questions about it in a balanced way but don't launch at me in a frenzied attack.

If MS therapies like Tysabri are working for you then all power to you. If other drugs like Avonex and Copaxone are working for you then I'm pleased for you - really I am.

However for me, none of these drugs have worked. Still I relapsed and although being on Tysabri has stopped my relapses, still I've got worse.

I just have difficulty accepting that my only future sees me declining.

So, don't criticise me for what I'm wanting to do. I don't question your 'acceptance' of the situation. If you were progressing in the way I am may be you would feel differently. As it is, MS has little if any effect on you at all. Good for you, aren't you lucky up there in your ivory tower. Welcome to the dark side of MS.

Now if you don't like my approach then quite frankly, you can f*** off. I don't really care.

Right then, back to the pancakes, it's Shrove Tuesday!!!

For crying out loud!

Why does it have to be so painful just to get out of bed.

It took me 15 minutes this morning because every time I moved, my legs went into spasm, locked at the knees and were like concrete stumps. The thing is that once my calves start to cramp too, it begins to get very painful.

I have to keep trying until eventually they bend and allow me to move. Voila! Out of bed at last and it feels like such an achievement.

I was talking yesterday to an old friend. We were discussing the disadvantages of looking back.

It's difficult when you have a disease that's progressive to do anything other than look back because looking forward is a scary prospect.

Looking back brings memories of how I used to be. How mobile, positive and excited about life I was. I used to make so many plans, didn't achieve the majority but had fun thinking about it nonetheless. The thing is, I don't look back in a happy way, it just makes me sad at how much things have changed for me. I get so jealous when people are marching on with their lives because that's what I should be doing.

But it's not all maudlin. I have 4 very amazing children that still keep me on my on my toes (if only!).

My 16 year old brings with him all the joys of teenager hood and is doing an apprenticeship to become an aircraft mechanic. A 14 year old, a gentle soul who loves his Archery. A 12 year old daughter who thinks she's 21. She's a very keen horserider and little Lilly who is 6. She's working her way through many hobbies at the moment trying to find something that sticks!

Life in our house is all very 'normal' with the usual trials and tribulations of family dynamics.

They very definitely keep me looking forward!

And now I also have India, so there's hope....

I'm so excited about going. It's going to mean a whole new life for me. One with positivity and the ability to plan ahead in a way I can't at the moment. So, while I may get a bit lost in memories at times generally I'm feeling very positive.

PS. is it rude to slip this in www.clairetoindia.co.uk has all details needed for donations....

Ouch!

Yesterday was all about promotion and tidying up and adding to the website.

Alas that wasn't to be.

One of my symptoms is stiff muscles and muscle spasms. When I'm walking (a rare event) I have a tinman look going on. I hope you get the picture, it's not attractive.

It's crazy how you start to hanker for the things you can't have anymore. In my head I used to be this really graceful person who floated into rooms in her heels and a beautiful dress. The truth? Give me a pair of jeans and boots any day of the week.

I'd like to be able to go jogging but as my other half likes to point out "you never went jogging before, when you could have done it".

These realities don't help very much, she thinks wistfully.....

Anyway, I digress. So yesterday, I'm sat at the table in the kitchen, thinking about what to do with the website and hoping that people share my fund page, website and facebook group because that's all so important. I'd been sat for about 30 minutes and I could feel the stiffness and pain setting in so I stood up. I normally do this while holding on to the table, my muscles do their spasm thing, they settle and I sit again.

Yesterday however the spasm was so strong that it knocked me backwards and before I could grab the table to hold myself up i went backwards, smacking the base of my spine on the floor. Ouch! The problem then becomes how to get up and since I was home alone I spent a fair while on the floor before I could feel enough in my legs to move.

I don't know why I try to do this graceful, swan like delicate fall? I think I believe that by doing that I'll float to the floor like a leaf on the breeze. However, being (a bit) overweight it's a sack of potatoes or nothing.

Mind you, I did trip once close to a pole holding up a shelter. I fell, grabbed hold of it and worked that thing like any self respecting pole dancer!

So, for most of this weekend I've been sat with a hot water bottle on my lower back because it bloody hurts.

If sitting is a bit more comfortable tomorrow I'll tell you a bit more about me and my family.

So that's me signing off. Me and my unattractive tinman legs!

Mwah!

And.... we're off!

This is feeling a bit like a mammoth task and that's because it is....

I'm trying to fundraise a huge amount of money for my treatment for Multiple Sclerosis in India. Not an easy undertaking as I need to be over there end April/beginning May.

What! I hear you cry but I say NO, it's absolutely fine. An army of much loved people are falling in behind me in a ready attempt to catch me as I fall, oops I mean fly...

Things have been going south for me for quite a while. 

In 2008 I had a massive relapse which made sure I couldn't walk. Falling over became a regular occurrence and basically it was pretty awful.

I had steroids for this which set me on a path to recovery, but not quite.I was left with invisible disability. For example, I started to get so tired, I would be walking and I could feel my foot dropping and my legs getting heavier the further I went.

My symptoms are listed here www.clairetoindia.co.uk so I won't go through everything again.

This blog is more about documenting my determination to get to India and my odyssey through HSCT.

On the website is information on how you can donate, pleeease.

So on Monday 28th January I started a facebook group:  

https://www.facebook.com/groups/clairetoindia/

and launched my website. I was amazed at how many people made offers of help. The mail was coming thick and fast and I've never felt so supported. People really do come together in your time of need and I promise everyone that I'm going to be so grateful and make the most of this opportunity.

So today I'm working on promotion of the group and website. I'm trying to get as much done in the morning as I can because by 1.00pm I have truly had it and just can't think anymore.

I hope to make this an informative blog also. There is lots of information to share. I'll let you into my thought processes - don't worry, nothing too taxing goes on in there.

Catch up soon xx