Saturday, 19 May 2012

Funky Mango's Musings: The MS Trust hits the airwaves!

Rather than blog myself, I invite you to please read this post on FunkyMango's blog, not least because I have devoted huge amounts of energy to MS Society UK recently and need to redress the balance:
Funky Mango's Musings: The MS Trust hits the airwaves!: The excellent MS Trust has been selected to give a Radio 4 appeal this Sunday. As well as bringing in much-needed donations, the appea...

Thursday, 17 May 2012

10 things I (probably) wouldn't have done before

Before means before DX
  1. Fallen out of an airplane, deliberately that is and without it being an aerial emergency. Other people call it doing a tandem skydive. I did mine in aid of the MS Trust – they have today asked me to draw attention to a BBC R4 Appeal by one of the MS Trust founders, Chris Jones. It will be broadcast this Sunday (20 May) MS Trust Appeal 
  2. Flown a glider. Ok, I had previously had lessons in a fixed wing microlite and both two and four seat Cessnas but it’s really expensive doing those sorts of things. Now I seem to delight in the challenge and joy of being up in the air. The literal embodiment of so much of my life?
  3. Abseiled – I certainly never considered doing this before but now I have the opportunity to do it for charity (and I only really came upon this due to spending so much time at the hospital). So show me the hunky man holding a rope out for me and I’ll be on my way! You can sponsor me here:
  4. Ridden a segway – such fun that I am doing it again in a few weeks time. This is not in aid of any charity, unless you consider me having a good time is a charity and you would like to give me money to have fun. It certainly does my soul good!
  5. Hosted a Cake Break in aid of the MS Society UK.
  6. Hosted a Cake Break in aid of the MS Society UK.
  7. Hosted a Cake Break in aid of the MS Society UK.
  8. Hosted a Cake Break in aid of the MS Society UK. I know this is cheating a bit but I really am coming up to my fourth Cake Break and I doubt I’d even have held one if it hadn’t been for my own MS. The one on Sunday 10 June is incredibly special as writer/broadcaster/comic (and all round lovely man) Hardeep Singh Kohli will be cooking lunch for 40 people in my flat. Extraordinary and definitely attributable to my DX.
  9. Spoken at the Royal Institution (see previous blog post)
  10. Started blogging. I already used Facebook and Twitter and I enjoyed reading other people’s blogs but this is different. This is for me, and for you. I hope you enjoy reading. Perhaps I should start telling some jokes to make it more entertaining J
There was this doctor and this woman and a really bad MonSter… no, that’s not a joke. Just go to this site for some giggles: Squiffy's Joke Emporium (I wouldn’t have known about it before DX)

Please help me mark my 3rd DX Anniversary. It’s All4Cake! Cake Break

Friday, 4 May 2012

Not really here

I have had a tough time recently. I’m tired and sad. But people who saw me at the MS Society UK reception on Wednesday would not have known. I am good at pretending. I can act almost anything. On Wednesday, at The Royal Institution in London, I acted being positive and upbeat. I gave my speech on the subject of relationships when you have MS to great acclaim. Apparently I was “inspirational”. The energy needed to give a good impression during MS Awareness Week has left me depleted. I feel completely out of things like I’m not really here and yet I am still here.

So rather than saying what I might like to I give you my speech from Wednesday. It wasn’t exactly these words as I gave it a good performance with some references to what other people had said but here it is:

I am Ruth Curtis and I have relapsing remitting multiple sclerosis

I was diagnosed in 2009 although I will have had MS for probably 15 or 20 years longer than that.

I was quite lucky that my diagnosis came relatively quickly but not early. People are usually diagnosed in their 20s or 30s and I am considerably older but it only took about 10 days from being taken into hospital in an ambulance and having every test under the sun to decide that I didn’t have tumours in my brain or an infection but in fact have MS, the best out of those three diagnoses. Puzzled by “the best”? Well, I’m still alive.

I’m coming up to my third anniversary of knowing that I have MS and living with it can be extremely challenging but on the other hand it’s led me to take on challenges that I wouldn’t otherwise have done.

I was shocked to discover that one of the stats that has come out of the MS Society’s recent survey is that I in 5 people, who were surveyed, think that disabled people need to accept they can’t have the same opportunities in life as others do.

Well I don’t accept that. I refuse. MS may have an impact on me and I am reminded every single day that I have this lifelong incurable condition – the alarm on my mobile goes off at 8am, 2pm and 8pm to remind me to take the meds I need - but that doesn’t mean I can’t do amazing things:-

Since diagnosis, I’ve fallen out of an airplane – some people call it doing a tandem sky dive; I have had a gliding lesson; I have ridden a segway (great fun); and perhaps most importantly for me the MS Society has introduced me to Cake Breaks.

I held my first Cake Break in May last year, and it was at that first one that I met Shaun, my last boyfriend.

I was single before I had diagnosis and I’m single again now but that’s not the fault of MS. That’s the way life is sometimes. It’s the same for all of us.

I’ve always tried to be very careful about how I tell people I have MS. I want to tell people that matter to me as soon as possible because it’s hard work. It is hard work having this condition and I was lucky that Shaun knew from the word go that I have it and he still wanted to be with me.

I like to tell people face to face so that they can ask as many questions as they like and I try to explain how it’s different for every individual. With Shaun it was easy. He was brought to cake break by a friend of mine and when I met him on my doorstep he already knew that I have MS. I didn’t have to tell him. We’re not together now but that’s just the way with relationships sometimes, regardless of MS.

Anyway, I’m still fighting. I’m going to hold my next Cake Break in just a few weeks time (do ask me later how you can donate!) and then, a week later, I’m going to walk down the side of the hospital, some people call it doing an abseil. I’ve never done one before – aarrgh. I might meet someone special either on my doorstep or travelling 100 feet down a building holding on to a rope. I’m truly scared. But, whatever happens, everyone I meet on those occasions will know that I have MS. And I’m fighting back. Thank you.

Yes, that was my name at the start. But I'm still Toots and I'll always try to tell MS Truth here. If you read the MS Society UK report you can see me in there. That’s all for now. I can’t write more. I’m not really here.

Please help me mark my 3rd DX Anniversary. It’s All4Cake! Cake Break