Monday, September 30, 2013

Goodness me, I feel caught between two worlds, and it's making my head spin. So, first up, I had written about the charity football match, that was taking place on my behalf on Sunday. It was a beautiful sunny day and everyone attending seemed to have a good time. Perfect. I chose (actually...I was told who and why, because I'm clueless about football) and presented a trophy to man of the match. And as I was in front of all these people, I couldn't help feeling blessed. They had all given up their time and hard earned money to be there. Helping/playing/attending/paying just because they can and want to.

The celebrities playing presented me with a signed t shirt, in a hot and airless testosterone filled changing room, and as I went to bed in it that night, I couldn't help but feel a bit blessed.

This is in stark contrast to the opposing world.

Before, I had believed that if something horrific, especially if it was through no fault of your own, befell you, help would be there. Wrong. We, as a family, and me as an individual are struggling to get what we need. And I am talking about basic, human and real needs. Somewhere to sleep, and somewhere to shower. And I am actually being denied these needs. As if my days aren't hard enough.

So, in camp one, we have kindness, generosity, and happy people and the end result is me feeling this in spades. Helping, because they can. And it feels good.

In camp two, we have unkindness, meanness, and people that are just horrid. And the end result feels so bad. Too bad for words. And it makes me feel totally without worth. And as if, stupidly, it's my fault. Something I've done wrong, and this is what I deserve.

So, through a circumstance of nature's cruel creation, I am between two camps, and I know which camp I prefer and naturally gravitate towards. I get a sweet taster of what it has to offer, as I get to view it from time to time, as I feel it's warm glow like sunshine on my face. But I get to view it from behind a chain link fence, next to a sewage pipe spilling it's guts.

For the people of my hometown...THANK YOU.

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Wednesday, September 25, 2013

Today was my last day of IV steroids. This was in response to the fact that I am still relapsing, and I hope beyond hope that the steroids give MS a real good hard kick in the pants.

I need my wits about me for the charity football match this Sunday, and frankly I need all the help I can + football = no clue. So the plan is, be there. Stay awake. And hope not to be glowing like a beacon. Because at present, my face is rosy. And that's being polite.

So my radio interview has been aired, and so far the feedback is good. And it was ok actually. Previously I would have declined the offer to go on the radio.....too scary! But since MS has entered my life.....well, THAT'S scary and unpredictable......everything else......not so much.

AND I'm putting in the order for my wheelchair! How exciting! FREEDOM! They are a fantastic and helpful group of people.....Bromakin at Loughborough in Leicestershire...if you find yourself in need.

And I'm also looking at starting a support group for local MSer's. Because at the moment there is NOTHING!

Last Christmas I was given two tickets to go and see a comedian at The Stables in Milton Keynes this Monday. It was a fantastic venue for wheelchair users, and I can't thank them enough. Helpful, thoughtful and treated me like a 'normal' that just happened to be in a wheelchair. And a damn good laugh was just what the good man and I needed. Cos living with this shit is hard, and we need a break sometimes. Because it is my everyday, I don't get a break, the good man can and does get a break, but he always worries, so just to forget a while is just incredible. A real tonic.

No doubt my next blog will be about the football match, so until then, be well.

This one's for you Kat. Sometimes life chucks us a curve ball, and despite the people and support we may have around us, we are the ones that wake up with the crap, and go to sleep with it too. And it can make the most loved person feel alone. Know you are not alone.

Friday, September 20, 2013

Well, that was interesting. I've just been on the radio to help promote the football match that's raising money for me, to help get the adaptions I do not want, but so badly need. I tried really hard not to swear about what MS has done to me and my life, and I'm happy to report, I was successful. I shall reward myself later, probably with a hot chocolate.

Here's how you can find out more about the

You can listen again to the radio....

Just in case I've done that wrong, it's the John Griff show, from today, 20th September 2013.

I don't know what else to say really, just that I'm so happy that when people that can help, do. Because, to be honest, I could really do with a leg up here. I've been dealt a shitty hand, and I am doing everything I can. It's just so much better when you have people to keep you company and cheer you on, as you battle away.

It's never good to be solitary in your battles, or in your triumphs. The card I have been dealt is without question, shit. What makes the unbearable, bearable, are the people, and the lengths they will go to, to give you that leg up.

So, be that person. There will be people in your life that could do with a helping hand, and you will feel good if you extend a hand, or offer a leg up. 

Everyone's a winner. 

Thursday, September 19, 2013

I have been deliberating about sharing this with you all, and I have spent 24 hours considering it, and I have come to the conclusion that I have nothing to gain by not sharing, and actually, as I type, it's becoming less of a deal. It's just what is.....

Yesterday morning I had an appointment with a neurologist and he, after a lengthy and thorough examination, and history taking, diagnosed me as having secondary progressive ms. Shit. I had thought this, but still, hearing it out loud from a neurologist.......

Hhhmmmm, ok, what now? As I'm still relapsing within secondary progressive I can stay on my current medication, an infusion called tysabri. This is most definitely a win some/lose some situation. For the first time ever, I thank the fairy of spack attacks because without those relapses, I'd be left high and dry, as there are currently NO medications to alter or slow down the effects of secondary progressive ms. Like I said...shit.

However, there is a tiny pinprick of light at the end of the tunnel I find myself in. There is a trial of 3 drugs about to take place. These drugs are already in use for other conditions, so are already known to be safe, and the 3 drugs are being trialled at once, so this is time effective. And time is important here. The longer things take, the more damage is done. The quicker drugs become available, the better.

On the plus side, things are coming together with regards to the football match that's taking place on my behalf. The crappiest photo of me ever was in the local paper to promote the game, and I'm on the radio on friday morning too.

So, what can be done, is being done, and you can't ask for more than that can you?

Still feels shit though.

Monday, September 16, 2013

Today my husband had the afternoon off. I love these times, but what do you think we did? We were checking out wheelchairs. As wheelchair shops aren't on every high street, we had to travel for an hour. When we got to our destination, I was welcomed by a slight incline, and then an automatic door. Good start! Beyond the door, lay wheelchairs galore....including ones for kids, and sport wheelchairs. Have you seen wheelchair basketball? Incredible, and a bit scary.....

Anyway, I told the man what I was wanting from my chair....lightweight, folding as small as possible, but beyond that I had no clue. He produced three for me to try, and Christ on a bike! Talk about lightweight! And they turned so easily! I never would have pictured myself smiling and laughing in a wheelchair, but I can honestly say it was a joy! I finally managed to whittle it down to which one I wanted to go for, (with some considerable help and reassurance) and then I got to choose the colour. Choose the colour? I have a choice? OMFG! This was definitely an easier task, and pretty enjoyable too.

The man that helped me out was also a wheel chair user, and incredibly helpful, and told me what to consider as my needs change. All of the staff, wheelchair users or not, were friendly and helpful, but most importantly treated me like a 'normal.' We had a bit of a joke around, and conversations where we discussed the typical and usual things of life.

I hope to goodness that the wheelchair voucher that I've applied for comes through, and goes some considerable way towards it, because these chairs are not cheap. But they are worth every penny. If you are a walking person, imagine for a moment that you cannot walk, and then you find something that makes your days easier. If you are a wheelchair user, you'll know what I mean.

I have a wheelchair, but it's old, clunky and so heavy. And is limited in what it enables me to do. It has a breakdown if you whisper 'slight lip' or 'uneven path ahead' to it. You know when you're a kid, and you have stabilisers on your bike? If you hit a dodgy bit of road or path, you can be peddling like crazy, putting all the effort in, and going nowhere. That's my wheelchair. I am not looking forward to getting back in it, especially after the ones I've tried out today.

So I'm crossing my fingers, and sending up a prayer and kiss to the goddess of free movement. And a nudge towards Rio, and the Paralympic wheelchair rugby team....

Well, a girl can dream......

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Tuesday, September 10, 2013

Today's been a good day. It started with a donation from a person I don't really know. But they know of me, and my need to have my house adapted. I didn't know what to say, and it's not often I'm speechless.

The person that's organising the charity football match for me, also organised promotion through the local paper. So, joy of photo is going to be in the local paper. Not my idea of heaven, but a well promoted game with a good turnout, is. And I never thought I'd be saying this about football, but I am actually looking forward to the game.

A friend also popped round today, for a cuppa and a catch up. Tomorrow, another friend that loves cooking is coming over, and bringing lunch. And then another friend is calling in on Thursday. As I spend an awful lot of time on my own, and I'm unable to go out on my own, or even with ease with others, having people round is an absolute pleasure. And it keeps me in touch with the realities of the outside world.

Sometimes, I am happy hide away, who wants to be seen at their worst? Sadly though, I need help. And to get that help, I have to make myself visible. And so my wish for invisibility is something that I can forget. I have to display the weakest and worst parts of me. The parts I would much prefer to be hidden.

This is in stark contrast to my life 'before.' Before, I would just get on and do my thing, whatever that may be, and without thought of my visibility. Before I was the girl from the village, the girl that worked at the school, the girl from art school, the girl from the gym, or the mum of all those girls, or the girl training to be a midwife.

I am still that girl, but what people see now is very different. And all that I was, has been smothered, forgotten about, and replaced with crutches, a wheelchair, and a need for adaptions.

I will always be what I was. And that's something that cannot be eroded. Even as I feel myself becoming less.

Forget that actually. I have my voice. And I have my fight.

No one and nothing should ever make you feel less. Worth less. You are what you are. That's all that you can be. So you better make it count. And I won't count for anything if I hide.

Sunday, September 1, 2013

I am trying not to panic. But I am failing miserably. The reality of my situation is scary. And I really don't know what to do.

If I look back 5 years, I get to my diagnosis. Those 5 years have delighted me with a rapid descent. So looking forward 5 years is scary. How will I be? Already, I'm not walking independently. Or working. Or driving. Imagine the impact that has on my everyday/life/independence/choices/future.

"Deal with what is, not what ifs." This was the advice I gave to other people who were tying themselves up in knots. So reminding myself of this, I catalogue some of the what is......

1, Greatly reduced income.
2, Greatly reduced choices.....rock or hard place anyone?
3, Reduced friendships.
4, Pretty much a reduced level of independence....whoo hoo..look who got showered all by herself! Moi! This makes me so happy/sad all at the same time.

These are just some of my everyday realities.

Reading this, some of you no doubt will be thinking, 'But they help you, don't they?' Errrr, who is this mythical 'they'? Well, 'they' are hiding with all this 'help.'

Or some of you may be thinking, 'Why don't you just move?' Well, to move, I have to get a mortgage. To get a mortgage, I have to have a job. The good man has a job, but can only work part time, because of me, and the support I need.

I live in a house of steps, and that makes me recoil whenever I have to go out/come back. Like most people, I have to go upstairs to the loo, or to bed. This makes me shrink in on myself as I'm faced with the stairs. The stairs. My enemy. My workout, as pulling my inflexible corpse, heavenwards, makes my heart pulse as I tackle this obstacle.

Right now, despite the good, all the very good, I hate my life. Specifically, I hate being like this.

I hate being less.