Errr....

Just that really, errr...

My mind is totally mush at the minute.

I've been without a scooter - disaster!

One of the tyres blew so Lilly and I had to limp on it to school as getting off and walking isn't an option. You wouldn't believe how difficult it is to get a scooter tyre. The local disability shop reckon it was an unusual size. This I believe was a load of rubbish, I mean it's not as if it's square. I managed to get one before they did but then we couldn't get the wheel off blah blah blah.

There is so much to do but the minute I sit down to concentrate on anything my mind just goes blank. People in the MS business call it cog fog and it's a PROPER nightmare. I can sit staring in to space for any amount of time, completely inanimate, simply reminding myself to look at the clock every now and then so I don't miss Lilly coming out of school.

My newest symptom now being welcomed to the family, back spasms.

Pain like you wouldn't believe and only on the left side of my back at the moment until the right side starts to feel left out. Over the last couple of nights they have been horrific and no amount of medication help. I just have to go to bed to lie flat. It offers slight relief.

Being on my feet and moving in anyway leads to a spasm and looking like I've got a poker you know where.

I'm being distracted by my oldest son as he's applying to join the Royal Navy. We are going through every sample test paper we can find, trying to get his speed up as the individual sections are timed. I hope it goes well, I can't wait to see him doing so many amazing things.

Anyhow, the fundraising is good. So many people getting involved up and down the country. I'm forever grateful.

There's a page on my website www.clairetoindia.co.uk which needs updating again now explaning all.

For your viewing pleasure, here's Carmel Turner talking about her HSCT procedure..

http://www.youtube.com/watch?v=FIIukhf4v3w

 Until next time xx

Humiliation....

Fundrazr - please click!!!

I haven't written a blog post for a while because I haven't been well to be honest.

It's Sunday the 17th February and I've got a bit of a sore throat. No major thing at all so I went to bed dosed up on the usual amount of Baclofen to try to reduce the night time spasms.

At 2am I came to feeling that I had a temperature, you know how you feel cold but hot and it hurts when you touch your skin.

I know what this means...

I try to move and nothing, absolutely nothing. My body from the ribs down feels as if it has been screwed to the bed. After the pain of continuous spasms begins to get to me I look over at my other half who is sleeping nicely. I really don't want to wake anybody up. So I keep trying to move. I can't even pull myself over on to my side and the pain is getting worse.

So I lay still and start to cry and yes, it's all about self pity. As the racked silent sobs became more intense (I'm painting a picture here) my thoughts turn to what happens if this is permanent? Thank God for the kids or a trip to Dignitas would be on the cards (dramatic enough?).

Paul becomes aware that I'm having a meltdown and asks whats wrong and I say - please help me. I tell him I have a temperature and as we've been through this a few times before he goes to get me some paracetamol and more Baclofen. It's a real knack taking tablets when you are flat on your back.

Once I've taken them he proceeds to massage all the solid muscles until my knees are loose enough to bend, but he can only do this by pushing them from behind and forcing the issue. 

Feeling slightly better I tried to get back to sleep as did he, but not for long. I was awake again at about 4.30am and decided to just suffer until he got up at 6am.

We went through the same procedure again and eventually he got me downstairs by me sliding on my backside. A sight to behold.

I settled in to a chair and there I stayed for 3 days.

Humiliation central!

I have a commode that I use at times like this where I really can't use my legs. The only way I could get on it was for it to be brought right in front of me. One of the older kids would pull me up and another would pull my feet until I was in the right position. Then they would go out and my youngest would stay with me pulling down my trousers. This is wrong on so many levels. Thank God it was half term and they were all around.

I kept apologising to them for being such a crap Mum but they won't hear any of it. They're so lovely.

I hope you weren't eating your dinner!

Thankfully my sister took Lilly for a couple of days, her Grandad having to come up all the way from London to get her, my Mum and sister then came for a bit. Don't know what I'd have done without them.

I'm still not great and the fatigue is sky high.

I was going to put a picture of my commode on here but the kids weren't impressed. I really can't see why..

Get me to India ASAP!!!!