Thursday, 26 April 2012

(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

Tuesday, 24 April 2012

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

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 - 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

Monday, 9 April 2012

Dead to the world

I’m tired. I’m often tired. When I’m fatigued I’m pretty much dead to the world. I’m not fatigued today. Today I am wearing PJs. I haven’t had a shower or got dressed. I haven’t been outside. But I have got out of bed. I have done a bit of organising for All 4 Cake -
I have designed and ordered some car door magnets - 
And a sign for the window - 
And I have dealt with death today - . 
It was ‘only’ a fish but there have been a few fish fatalities and it’s not even my fish tank. I didn’t really have to do very much dealing. I just removed the body from the tank using a pair of tongs and flushed it down the toilet. I then watched the (animated) film ‘Flushed Away’. Pure coincidence.

There have been other bodies that I didn’t do anything with – a bird, a mouse
And there are always the plants I simply put in the compost section of the recycling point
I’ve been driving around a bit recently and seen a lot of road kill. You’ll be pleased to know I didn’t stop and take photos. I didn’t even keep count but there were badgers, rabbits, foxes and at least one pheasant. I didn’t kill any of them.

I do sometimes wonder what happens to all those poor battered corpses. Does nature take care of them or is it somebody’s job to go round clearing up the, often human-induced, mess? If it is somebody’s job then I’d like to add it to the list of jobs I’m glad I don’t do. They are important jobs. Unlike what I do. I remember stressing over a difficult project years ago and a friend gave me a good reality check. “It’s not like you do anything important,” she said, “not like cleaning the roads or emptying the rubbish bins.” A thought to remember when I still have to work though I feel dead to the world.

Monday, 2 April 2012

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):

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:
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?