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?

Busy busy busy

I've not been a good blogger recently. In fact, I've been very bad.

I have often thought of things to say then forgotten to write them down.

Ideas come and go in the blink of an eyelid or snag of Jemima on a pesky kerb.

I have been very busy - this is not an excuse, a boast or a plea for help. Or perhaps it is all three. I have lost count of how many miles I have driven since my last blog post but I've been to London, Leeds, Oxford, London, Oxford, Nottingham, Oxford, London, Oxford.... yes, I live in Oxford!

Somewhere along the way I have been involved in radio interviews on behalf of the MS Society UK about the not 100% nice NICE decision on Gilenya. It's nice for me that they have agreed to prescribe the Wonder Drug but there are criteria to be met and I don't know if I will fall through a loophole. I am hoping not as I have been taking it for a year and have no intention of ever self-injecting again. That would not be nice.

I would rather not be on any DMD than go through the half hour hell of injecting three times a week. Apologies if Copaxone, Rebif etc etc work for you. I think my tummy has only recently recovered from the Rebif injection site side effects and I stopped using it a year ago!

So NICE have made their decision. As arranged by the press office of the MS Society, I recorded an interview for local radio (from my mobile phone outside a jolly* London pub**) saying what it means to me and how the Wonder Drug has changed my life, which it has. I can come and go without thinking about autoinjector, needles, freezer for cool bag, let alone the time it took to actually do the injection.

Some MSers may not take any meds but I do and my morning cocktail is easily supplemented by an additional capsule of Gilenya.

My second interview was for BBCRadio5 Live. That one I did live from a local radio station. Bizarrely, a friend heard it and emailed me: 

"Put my car radio on as I set off about mind ago (sic) .Heard a distinctive voice and thought that's our [Toots]. Missed the beginning of your interview, but caught most of it. You argued your case coherently and eloquently. Thought you would like to know"

Another friend has donated to (one of) my fundraising ventures. His comment is: "You are SO the female John Noakes. All power to you." - how lovely of therm both. (If you don't know who John Noakes is you probably didn't watch Blue Peter on BBC1 in the same era as me)

All the comments and affirmations are truly heart warming and as I carry my mantle of campaigner, fundraiser and idiot - whoops, daredevil - I am glad to be appreciated.

It is spring.  Time for things to blossom.

I have posted pictures to the MS Trust I also have MS project

I am forging ahead and if you want to sit in despair then please don't bother me - I'm too busy!

*busy

** Urban Bar in Tower Hamlets

“Reasons why the north will always be better than the south....”

I don’t drink beer but I do buy pints for friends and by ’eck it was cheap up north. As you can see from this photo MyMan posted on Facebook with the caption: “Reasons why the north will always be better than the south....”

We had a wonderful few days and the best news came on Thursday via a text from my MS nurse: 'Morning. Yr pacmans have returned. Hooray! 0.7. Text me when u can come + see us for ecg attachment.'

I was wired yesterday and now am detached and hoping the red splodges will have faded before tonight’s posh frock wearing for a friend’s 40th birthday party.

I’m back on Gilenya. I have wonderful MyMan who literally went the extra mile for me on our Yorkshire break. As he would say: ‘all is good’. And he’s a Yorkshire man.

This is my reason why the north is better than the south

This is how it is but that was how it was

I’m going to Huddersfield, West Yorkshire tomorrow. It’s a bit like going home. I lived in this bastion of Luddites’ uprising for many years. It features the location of the first home I ever owned. A wonderful stone built, end terrace house appropriately enough opposite a mill where they spun yarns – a bit like me. Though mine are less good at knitting into cardigans.

A great friend of mine still lives there. Not in my old house but in one of her own, a back-to-back in what some might think of as a slightly posher area of town. She doesn’t have a genuine Irish pub down the end of her street. Nor a mosque at the other end.

Many years ago we went away together on one of my very few holidays abroad. I was reminded today that I had promised to email my photos of it to her although I have already given her a little booklet with them all in. I had scanned the prints for an online site so I could create that booklet. They weren’t taken on a digital camera – it was that long ago.

I love old photos. They remind me of how things used to be. How I and my friends and family used to look. Things we used to do. Just this morning, I emailed a bad photo I had taken on my mobile to MyMan saying: “I still want a photo of you… and of us together.”

He doesn’t like having his photo taken. I don’t particularly like it either. Of course, some photos are different. They are a professional necessity. Despite this evidence from childhood, I am not really a poser – I’m the one in the middle!

At home I have a photo frame with a picture of me and two of my best friends in. The frame says Good Times all round the edge. That’s what photos are great for – reminding us of the good times. In the dark days and in the dimness of my diminishing memory I need those reminders.

I hope I can persuade friends to take some photos over the coming few days. Then, in years to come, I’ll be able to look back at them and say “This may be how it is, but that was how it was”. Meanwhile, tomorrow night me and my Huddersfield friend will be saying “those were the days my friend”. I don’t think we’ll be singing it. Even in Corfu we weren’t that drunk.

P.S. Hopefully, on Thursday I'll get my new blood test results. Equally hopefully there will be something to celebrate and I will be having to curtail my Yorkshire holiday to come back for the ECG testing that accompanies restarting wonder drug Gilenya. Cross your fingers for me please.

Today is a gift

I have been trying not to worry about ‘what ifs’ but focus on ‘what is’. Particularly important whilst on suspension from the ‘trial drug’ Gilenya due to my neutrophils (Pacmans) being “decimated” and feeling worse than I have for a long time with the annoying return and/or increase of some of my MS symptoms. Thinking about ‘what is’ led me to hesitate at my new boyfriend’s recent question – incidentally, as a pretend grown up, I hate calling him my ‘boyfriend’ so will probably go with MyMan when referring to him in the future… Anyway, MyMan asked the other day “What do you see for us in the future?”

This was not a casual question nor was he worried I might be seeking more from the relationship than him. From the start, he has been talking about how we have many years to do things together and where we will be together in our 70s. I love this man!  I queried whether he meant the future future or just the immediate future.

Either way, his question made me think about a lovely quote I got from @lucyhunter on Twitter:

“Yesterday is history

Tomorrow is a mystery

But today… today is a gift.

That is why they call it…

the present”

Most of my recent todays have felt gift-like but have not been without their MS induced mood changes. Tears are not particularly attractive but at least I am lucky now to be with someone who seems able to take the ups and downs in his stride.

In a bad ‘what if’ downer, I partially dreaded meeting up with people I hadn’t seen for many years at an old friend’s 50^th birthday celebrations this last weekend (and no, I am not 50 myself). It turned out to be a lovely occasion and my doubts were unnecessary. The ‘what is’ was so much better than my what ifs and I even told a couple of people there about my MS without any trouble.

Driving to the hospital this morning for the blood test which will prove whether or not recent resting and almost healthy eating – well, trying for three meals a day anyway – has been successful at replenishing  my pacmans, this song by The Wanted came on the radio.

And in case, like me, you are not an aficionado of The Wanted here are the Glad You Came lyrics

The lines that struck a particular chord were:

“all that counts
Is here and now”

My here and now presently is fine. I hope your today is a gift.

What price well-being?

What price do you put on well-being? And what is the cost if that price is too high? The drugs I currently take, in monetary terms, cost well over the amount of my annual income. In fact just one of them costs more than my annual income. I have eight different regular meds. I don’t pay for any of them.

I am extremely grateful to have excellent access to medication. I am equally thankful I have a prescription exemption certificate. I was even glad to have the dreaded self-injection disease modifying treatment Rebif. That can’t have been cheap.

In April, I read an interesting post about the price of DMDs by Lisa Emrich on her blog Brass and Ivory: Life with MS and RA.

Yesterday, I was daunted when my MS Specialist Nurse told me the UK market price of the trial drug I have been on. 

Fingolimod, now called Gilenya, costs many thousands of pounds. It is a daily capsule and each week I am swallowing hugely more than my weekly income worth of it. The trial has ended.  I and fellow trial patients are now on an extension until NICE and the PCT decide how to prescribe Gilenya and who is eligible for it.

These will be difficult decisions and people’s health and well-being are involved.

I was devastated today to be told my blood count from yesterday’s test show my neutrophils are again severely depleted. I am suspended from the extension trial until those pesky pacmans return to ‘normal’ strength. I have another blood test in two weeks. I desperately hope my blood count allows me to resume taking Gilenya.

It is hideously expensive but the upset caused to me by being told I can’t take it cannot be priced. Without drugs like Gilenya, my well-being might be as crushed as my pacmans seem to be. You can’t buy well-being but I’m sure if the price of my meds is too high for my PCT to stand, the cost to me would be the loss of it.