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: http://www.justgiving.com/RuthCurtis-abseil
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

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

(Happy?) Anniversary

Do you celebrate your birthday? Yesterday was my BFF’s birthday. I didn’t see her but had dropped off a card and pressy with her husband the night before and I’ll see them both tomorrow when we and some other friends go to the theatre. Very cultured! Today is the anniversary of my mum’s death. I might visit her grave. I remember in 2005 apologising to my BFF because I hadn’t helped her celebrate her birthday – it was the day before my mum died so she excused me.

I think it’s really important to mark birthdays. If only to show respect for the mother who gave birth to you – just think how much hard work she put in that day! An MSer friend of mine is in the Silver Star unit at the JR hospital due to be induced today. I’m hoping all goes well for her and look forward to meeting the new member of her family.

I feel like MS has become a member of my family over the last three years. At first it was an unwelcome guest but now it’s just part of me. Not all of me and not instead of ‘me’. I will soon be introducing my MS to a new audience – I have been asked to speak at an MS Society UK reception at the Royal Institution. I need to outline my 3 - 4 minute speech. I’ve looked back in a diary to see what was happening 3 years ago when I was in the relapse that led to DX. There is no note for today on 2009. Things really hotted up a few weeks later. In fact I was taken into hospital in an ambulance on 9 June 2009. 9 June was my mum’s birthday. Another anniversary.

For now I have to write my speech, a Gilenya diary entry for MSRC (similar to their Tysabri® User Diaries) and a press release for my Pre-Cake Lunch with Hardeep. Perhaps I’ll just pop out to the cemetery first.

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

I didn't run the London Marathon

Sunday 22 April was a big day. I had been building up to it for months. I didn’t know what it was going to be like but expected something special. I didn’t run the marathon but it was a mega marathon-like achievement for me. @Dr_Neil_ (my flatmate) had asked me ages ago to keep the date free but steadfastly refused to tell me what we were going to be doing beyond it would be partially outdoors and I should take Jemima.

On the day itself he still wouldn’t tell me where we were going until I was in the car. I hadn’t guessed we would be doing this: PenguinEncounter at Seaview Wildlife

Not only had @Dr_Neil_ booked our ferry across to the Isle of Wight and the experience at the wildlife centre, he had also booked a table for us to have lunch at a lovely pub: The Boat House. And then we had time to kill before our ferry back to the mainland so we had a wander round various attractive locations and even had time to play some games in one of the amusement arcades. I’m not sure how I feel about our newly acquired additional flatmate even though I had to admire @Dr_Neil_’s skill with the claw crane to get him -  

The picture next to the smurf is one I took using @Dr_Neil_’s fancy camera. It was actually a double rainbow starting and ending in the sea.

The rainbow was just part of a wonderful day. The sun shone for most of it. We had an easy ferry ride across to the Isle of Wight and when we got to Seaview Wildlife it was fabulous to see so many different birds, otters, meerkats, wallabies and other creatures including fish. As well as beautiful live fish in tanks there were dead ones for us to feed to the penguins. It was an amazing experience. After joining other visitors in giving individual fish to a few penguins whilst they were swimming around,  

we were taken into the enclosure and given a bucket of fish each. Despite the warnings on most visitor information that penguins were not to be touched, we were encouraged to stroke and even tickle the tummies of a few individuals including the oldest resident.  

I had originally said I had no intention of ‘following’ a penguin on Facebook. Needless to say, having met Dippy it would be rude not to ‘like’ his Facebook page.

It has taken me a couple of days to recover from the marathon day but every second of the exertion was worth it. I must have walked a mile or more using Jemima over the course of the day and I have some wonderful memories if only my scrambled eggs will let me remember them. Thank goodness I also have the photographs http://www.flickr.com/photos/69825128@N00/sets/72157629513458338/. 


I expect my experience matches that for excellence of most London Marathon runners. They may have had to go the 26.3 miles or so distance but I went as far in my own way. Next year I may even join my MSer friend who recently walked a mile for Sport Relief - http://my.sportrelief.com/sponsor/sarahssportreliefmilewalk I expect you can still sponsor her or you could save your pennies for me - big stuff is happening and I would like as much support as possible. It starts with Cake! Cake Break

Pretty as a picture

This is not a pretty sight but then MS is not pretty.
Since the early days, post DX, I've often wondered what my lesions look like. How many there are, exactly where on my brain and in my spine. I've seen pictures of other people's MRI scans. Do a simple Google search and you will come up with a wide variety of images. Or find it on Wikipedia: Wikipedia Multiple Sclerosis MRI.gif

Today for the first time, on Facebook, I saw something other than the black and white images or diagrams. A picture purporting to be showing Multiple Sclerosis lesions. It was posted on a Multiple Sclerosis Information page. It looks horrible:

I hate to think bits of my brain look like this. They probably don't. After the picture had been shared on various Facebook walls (including mine) this comment was posted:
Dave Curtis Um, no, MS lesions do not look like this. This is a random JPG which somebody hijacked. A more plausible explanation for it is that it shows tapeworm infestation as explained here (you'll see how the original text got removed from the doctored image you have): http://www.scienceinafrica.co.za/2002/june/worm.htm

Tapeworm and the brain

I'm glad that is not what the lesions on my brain look like. However, I still want to know how many lesions I have and where. I still want to see my MRIs. I've had lots. Been in that machine time and time again. During the journey to diagnosis I think I had two or three. Since then I've had at least another four as part of research projects. I am a willing participant in research. It may not help me directly (except for the wonder drug trial) but if it helps medics, scientists, anyone understand this condition better then that has to be good. As well as taking part in research trials I am increasingly involved in other MS related activities and fundraising. For me it is personal.

If you ever hesitate about donating to an MS cause please remember the lesions. Imagine them as part of you. Inside you. On your brain. Imagine there not being a cure. Imagine living every day with the effects of those lesions. You may not be able to take part in research but you can take part in other ways, for example: http://beatms.mssociety.org.uk/netcommunity/toots
Bake a cake, take a picture of it. Make it a pretty one. Email the photo and the recipe and it could be part of the fundraising booklet CakeMumBaked. I will be sending in a recipe. Will you?

Who do you think you are?

Another day, another song - Jar of Hearts by Christina Perri. It’s the ‘Who do you think you are?’ lyrics that resonated with me because of MyMan deciding he can’t ‘do’ relationships until he has ‘found’ himself. I have a friend who would like to “shake him till his eyeballs rattle”. I can’t help but agree.

Who I am has changed a lot over the last few years. When I first had DX my MS Specialist nurse often told me that I should remember I am still me. I have MS, it doesn’t have me. Except it does. My MS affects nearly every bit of me and my life. I read the Spoon Theory by Christine Miserandino for the first time today and thoroughly recommend it as a way of understanding what it feels like to have a major medical condition: Spoon Theory

The year before DX I was a different person, just getting used to my dad having died. Getting used to being an orphan as a friend slightly thoughtlessly, if literally, put it. I didn’t really understand how badly I was bereaved. Dad died in 2008, Mum in 2005. I don’t remember going through the Seven Stages of Grief but when I became thoroughly depressed with my MS I began to recognise my bereavement. I had lost my parents and I had lost myself.

I don’t know when or if I have found myself but I think I have. Or at least I am on that journey as we all are. I don’t think it’s finite because I think we are always changing. I’m pretty sure I have been a good girlfriend. Supergirlfriend I have been labelled. According to MyMan, I tick all the boxes. And yet now I am alone again.

The real irony is that I may shortly be helping with some publicity for the MS Society Cake Break. I commented on this wonderful lickingthehoney blog spot Sharing a Sharps Bin saying that “I met MyMan at my CakeBreak in aid of MS Society so he knew from the start that I have a lifetime condition.” I went on to say “None of us can truly know what a relationship will turn up.” Little did I know that my relationship was about to end. Little did I also know my story would catch the eye of a Press & PR Officer who is working on the PR for this year’s Cake Break. She finds my story unique. I don’t know if it is. I do know hosting Cake Break had its fringe benefits for me. I don’t know who I think I am believing anyone else would be remotely interested but let’s hope they are. Let’s hope more people join in with fund raising and eating cake. I certainly intend to. Now should I invite the ex-MyMan to my Cake Break this year? We found he does make an exceedingly good cake.