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