It's a MSsy business

Yesterday I met my first real life MS person.
Thanks to the wonder of Twitter, I have made some online friends with MS. But until yesterday, I had not been brave enough to actually meet these people in person.
Instead I preferred to imagine what they looked like and pictured them in their homes with their lives going on around them. I gave them careers and families and even chose what cars they drove if they could drive.
Then out of the blue, I had a direct message on Twitter from one of my online friends. Would I like to meet for a drink with a couple of other people who had MS?
At first I was smothered in a feeling of being part of a new gang that wanted me to join and I replied yes please! But soon after that feeling started to change. And I began to wonder who these people really were. Would they be nice? Would they be 'normal'? Would they be a bit clique-y? Would they be a bunch of moaners who were going to drag me into an MS slump? Would they gang up on me?
And so the elation turned to dread and I quickly found something else to do that day.
But my MS friend didn't forget me as easily. And another invitation soon followed. This time a one-on-one.
By God this friend was persistent.
"Right," I thought, "I'll meet her for half an hour for a coffee. Job done."
And so arrangements were made.
But in the misery I have been loitering in recently, our coffee date was shoved into the recess of my mind and I forgot about it.
Until yesterday morning, about an hour before we were due to meet, when my treacherous mobile phone helpfully beeped a reminder while I was at the opticians.
I dabbled with the idea of standing her up. But my conscience stopped that notion in its tracks - after all she may well have made a real effort to meet me and I didn't know if she had mobility problems.
I was going to have to do it.
So I made my way to Starbucks (yes I know they are tax dodgers but everyone knows where the Starbucks is) and waited in the queue to place my order.
Helpfully the Starbucks team now have to ask customers' names when they place an order so I was listening intently hoping to hear my friend's name being given.
Nope. I didn't hear it.
After getting my coffee, I scanned the cafe. How do you find someone with MS?
I shamefully confess I was looking for someone with a visible disability. Someone with a stick, or a crutch, or a wheelchair.
But there wasn't anyone in the place who had any of those tools.
I sat down. And I text my friend. She replied "I'm coming in now" as I watched the door and spotted her.
The nervous knot in the pit of my tummy tightened as we greeted each other.
But you know what, it was ok. It was more than ok. It was good.
She was nice. She was friendly. She was normal. And I really liked her.
Our half hour coffee date went on for more than an hour.
We chatted about normal stuff. And about MS stuff. And about MS people we were both in contact with.
And then I confessed that my name Sian isn't the name I go by in real life, rather it is my middle name and my MS alter ego.
When I was in the MS closet I was Sian. But now I am out of the closet and people know I have it but I still like to pretend it is Sian who has MS and not me. (Yes I know I am a weirdo but it's an identity thing...)
She laughed. She thought it was funny.
We shared stories of how we were affected by MS, how we were coping with it, how it still screwed our heads up when we were least expecting it.
She well and truly popped my MS cherry - and I am glad she did it so gently.
Now I want to meet my MS online friends in person and I want to become part of the gang.
It's a funny old business this MS thing and sharing it with people who know what it is like too can only help turn it from messy to MSsy.

Confidence hangover

Sometimes things are set to try us.

Sometimes we overcome them. Other times no matter how hard we try, we can't.

And on the odd occasion, we won't even bother to attempt to get through it. We just let it happen.

I find myself being tried by something I don't even know how to get over.

My current crisis is: I have lost my confidence.

It hasn't been a sudden thing, it has been a long, slow creep. 

I doubt everything these days.

Questions on how and why something and everything is happening haunt me. 

And friendly teasing about my personality traits from those closest to me suddenly feels like merciless cruelty.

Doubt and loathing are now almost daily currency in how I view myself.

I find myself waiting for everyone and anyone who is close to me to also realise what I am. And to quickly rush upstairs, pack a holdall and run screaming from the house, without a backward glance. Never to return. Everything feels temporary now. Nothing seems permanent and it all feels so fragile - and breakable.

I've become self obsessed.

And this is a pretty embarrassing confession to make. 

We've all got friends or family members who literally cannot even contemplate that the world doesn't revolve around them and what they are doing.

We love them and we cosset them and we allow them to believe that they are the universe's centre, all done with a wry smile and a fond shake of the head.

But I now find myself in a position where I too have become self obsessed and am all consumed with me.

How ridiculous! What on earth has happened?

But try as I might, I cannot seem to get through this challenge to put me back where I was - confident, happy but a bit of a worrier.

The only thing I can muster these days is the worry. 

I smile occasionally, I even laugh sometimes. 

But the confidence has slipped.

It is currently lying on the floor in a heap. As if it has been out on a hard drinking session and has only just made it back home. Unable to make it up the stairs to bed, it just lay on the floor. Its coat is half off. Its skirt is tucked into its knickers. Its blouse has a red wine stain and something a bit suspect down the front. Its carefully straightened hair has got wet and dried frizzy and now sports a little bit of sick in it and its lipstick is smeared over its face. Its tights are ripped and one of its shoes is lost. The contents of its handbag are strewn around it. Its purse lingers on the back seat of the taxi which drove the long route home. And the house key remains in the lock on the outside of the door which is still half open despite the cold weather. It's going to take some time for the life to get back into Confidence and when it does, it is going to have a very bad headache.

So what can I do to help poor Confidence get back onto its feet? I can but offer it time and a bit of TLC and just wait until it is back on form.

And until it is ready, I just have to wait because I just don't know what else to do.

New year and new start

It's now the year 2013. And this year feels like a momentous year.

The reason? Well unbeknown to me, all of last year I was waiting. I was waiting for my second and final dose of the Big A. I didn't realise that I felt like I was carrying a weight. My life felt on hold until I had the treatment. And now I have had it. And I feel free.

Weirdly it feels a little scary to be free and not having the excuse of an upcoming treatment to blame my woes and my reluctance and my hesitancy on.

It feels a bit like I am leaving home for the first time with the MS nurse becoming my mother patting me on the head and saying: "Off you go child, make your way. You father (neurologist) and I have provided you with everything we can. Now it is your turn."

I admit I rebelled in the first few weeks after the second Big A. I became a petulant child and took delight in telling anyone and everyone how hard life was for me. Slamming the fridge door in a Kevin-the-teenager kind of way grunting: "It's so UNFAIR!"

Shocked family and friends who I have always shielded from the real truth of how I feel about having MS were gobsmacked at the venomous truth which I answered their well meaning questions on how I was feeling that day.

And then all of a sudden and with considerable relief, I felt calm again.
I disliked the rage and the frustration and the ball of fury which had taken over my being.
I'm now back to being me.

But the anxiety lingers about the future. I realise this is because I have focused only on getting the second dose of the Big A and haven't really thought further than that.
So new year and new start.

I've been given a chance at a relatively-free MS life so I need to grasp it and crack on. I've got to make the most of this thing.
And I am going to.

Round robin (of the last six weeks)

Hello there!

Firstly, let me apologise for my slackness at updating this blog.

The blame lies solely at the feet of an online shopping frenzy over the last few weeks in preparation for Christmas.

Thankfully I managed to get it done with all but three returns and two long visits to the sorting office.

Now the planning has all been done and the Big Eat is about to begin. I fear after the festivities, my jeans will be too tight to fit my increased girth into... but hey! I'll worry about that in 2013.

Since my last post, things have been getting better and better. My energy is almost back to full strength and I feel good.

Unfortunately I am still plagued with vertigo. I have all but lost patience with it now and if I still have it after Christmas, I shall be making a trip to the GP. It's surely not normal for a 'temporary' re-emergence of an MS symptom to still be lingering on like this. Is it?

I have avoided meeting people up to now and have successfully managed not to catch any nasty germs which would have hindered my recovery. 

My sick note from work lasts runs out the first week of January. Although I am feeling good, I don't feel ready for the full on pressure work will bring and so I suspect I shall go cap in hand begging the GP for another couple of weeks grace.

I always feel guilty about asking for a sick note. I come from a family who are ingrained with the work-ethic gene that inflicts major torment if illness tries to get in the way of making it into the work place. Got the plague? Pah! It's just a cough. Burned in a fire? Ha! It's just a blister. Scurvy? Eat an orange and stop moaning! 

Me and my family are probably the reason why vile bugs like norovirus spread because we idiotically go to work when we feel awful. Almost revelling in the martyr like status we adopt after struggling into work despite our affliction.

So you can imagine the guilt at not feeling 100% and know work isn't an option and then have to go to the GP for a note. 

I get myself worked up. I rehearse the conversation in my head. I imagine the GP sitting there shaking his head denying me the note. I work out what argument I will use to convince him to change his mind.

I am already worrying about this conversation and I have a fortnight left on my current sick note. 

And then I see the GP and he is kind and patient and nice and I wonder what the heck I have been worrying about.

Over the last few weeks, I've also reflected a lot on MS. I never imagined MS would bring my anything but negativity. But I was wrong. I've had many moments of positivity. 

One of those is meeting (online mostly) people in a similar situation to me. People who although I have never met in person, I consider as friends. These MS friends, know what I am feeling and the emotions I am going through. They know what struggles I face and the fragile state my mind can occasionally be in when I am at my weakest. They know how the future is filled with worry - and hope. And they know because they are where I am. They are me and I am them. And we laugh. And we cry. And mostly we are filled with the hope that it will all be ok in the end. 

So to my friends, may you enjoy a merry Christmas. And let's all hope for a peaceful future.

With love,

Sian x

Three weeks since round two

Not much to report.
I'm feeling less pathetic which is a joy.
The slight vertigo remains which is anything but a joy. It's a bit of a nuisance.
I'm still tired and like to have a little nap during the day but overall my energy levels are higher.
Leaving the house is still a bit of a chore because it seems like hard work but when I do go out it is actually a bit of relief to escape the confines of the house.
I suppose it is a case of still not 100% but getting there.

Alemtuzumab: The cynical business of rebrand and recost

In August, I posted a blog about the withdrawal from the market of the drug Alemtuzumab (also known as Campath and Lemtrada).

As anyone who reads this blog knows, Alemtuzumab is the treatment I have been undergoing as a way to combat MS.

So far for me it has worked.

It has turned my life around. I no longer suffer from tingling feet and legs. My vision is not affected. I no longer get painful spasms in my arms. My hands and fingers work as they should.  I can now walk with confidence. I’ve even done a bit of running since I had the first dose in November 2011.

I feel better. I feel ok again. I feel I can look to the future.

I’ve just had my second (and probably last) dose of the drug.

But I am one of the lucky ones. I am one of the fortunate few who had the opportunity to get this fantastic drug. According to the MS Society, I am one of the 100,000 people in the UK have MS.

This drug might not be appropriate for all of those 100,000 – but for some of them it could offer the chance for a relatively MS-free existence.

But the company which makes the drug, Genzyme has taken it off the market while it seeks a licence for it to be used to treat MS.

Cynically, this probably means the cost of the drug will increase. And fears are that it will increase to a cost unaffordable for the NHS.

This fact makes me feel angry and saddened that a drug which has already made its developers a lot of money to treat people with chronic lymphocytic leukaemia (CLL) is being used yet again to make another fortune at the expense of the health of those people who could really benefit from such a treatment.

I don’t know if the story about a patient with CLL who also happened to have MS was treated with Alemtuzumab and saw a dramatic improvement to their MS is true. Or if this is how researchers realised the drug could be used to help MS. But the simple fact of the matter is that the drug was developed (and paid for) to help patients with CLL. As a complete coincidence, it also happens to help people with MS.

So how can Genzyme justify withdrawing the drug and then presumably re-releasing it with a heftier price tag?

According to its website: “Genzyme is dedicated to making a major positive impact on the lives of people with serious diseases. Since 1981, the company has grown from a small start-up to a diversified enterprise with more than 12,000 employees in locations spanning the globe and 2008 revenues of $4.6 billion.”

It’s not just people like me – people who have MS who are dismayed by what is probably going to happen.

T – a neurologist who uses Alemtuzumab to treat some of his patients – commented on my earlier blog.

This is what he said:

“To put it bluntly, Genzyme has withdrawn the drug 'Campath' from the shelves. As the sole supplier you'd think they can't - but they can. It is NOT a licensed treatment for MS so they do not 'have' to supply it. It is a licensed Rx for relapsed chronic leukaemia - so they DO have to supply it - and have undertaken to do so on a 'named patient basis' - for free. So if a haematologist wants to treat a CLL patient they make a prescription, pharmacy order it, it is 'for the named patient only' and hey presto. Unfortunately we neurologists cannot use any "leftovers" under law (or prescribing rules); even tho the blood docs use literally hundreds of miligrams for a course and we use 12mg per day (less than half a vial) for 5 days then 3 days a year later - as you have been blogging about. 

The current list price is about £200 per vial. We split vials for MS-ers like you: so perhaps your total course will cost about £800-1000. Not including 8 days in a bed, food/drink/drip costs/steroids, extra scans etc. Just drug costs. The RUMOURS are that they are looking at a price of £60-70,000 per course for the 'new drug' (ie brand) Lemtrada - ie the 8 doses split 5:3 12 months apart. So perhaps just under £10K per vial!!! So not the "10-20x hike" mentioned in the Independent but a little more eye-watering than that - maybe 50-100x hike. They may well have spent £250M in developing the drug, running rigorous worldwide trials etc, but this will potentially ensure that NICE simply says 'no'; at least in the UK. As sure as eggs is eggs....

We managed to stockpile Campath and have enough to treat all our existing patients, as does the Royal Free so I hear on the grapevine. Other centres, even Cambridge that have developed the damn stuff, failed to do so and as you will know Alasdair Coles has been in the news on about this. Frankly, it is incompetent NHS administrators unable or unwilling to make immediate decisions to buy it with less than a day's notice and hence stockpile; that have caused this shortage aswell as the company. That's also a disgrace.”

So it seems patients and medics are united in pulling this drug off the market to rebrand for sale at a higher price is a cynical, calculating and thoroughly underhand thing to do – everyone is united... everyone apart from those people who are set to make an absolute mint out of doing such a thing.

I suppose for those people who make such decisions, money is no object when it comes to treating the health of ‘me and mine’ but for the rest of us, it’s a pretty shoddy deal when a drug which can turn the health and life of someone with MS around is denied because it is too expensive.

We’ve seen it with the banks – big profits overrule any moral or ethical issues. And I suppose, those with their eye on Genzyme's coffers say rebrand and recost is good business.

But just because it is good business, doesn’t make it right.

Let’s just hope someone’s conscience is pricked into doing the right thing. And soon.

Two weeks since round two

Today is the two week anniversary of the start of round two.
How do I feel?
I feel ok.
I'm still suffering from a bit of vertigo but it is more of an annoyance than anything else.
My energy levels have increased although if I do too much standing or try to do too much I do need to go and sit down for a little while. But it's getting better.
Overall I feel better than I thought I would.
I've been signed off work for six weeks which I am glad about because I fear my work colleagues, as lovely as some of them are, are not the cleanest bunch. One takes great pride in sneezing (loud with an accompanying spray of germs) without covering his mouth. Apparently the particles which get fired out in a sneeze can travel up to 12ft. I feel repulsed and disgusted by this on a normal day. But with a compromised immunity as the one I am now sporting as well, you can add fear to that as well.
The dread of catching a bug is paramount in my mind at the moment. To the point where I've become a little obsessed by it. This is an absolutely ridiculous state of mind to be in considering I have a 21-month-old son who has a cough and runny nose on an almost permanent basis bringing home nasty little germies picked up after his day in nursery. Be that may, I am still a bit paranoid about being around anyone (apart from my son!) who may be harbouring some filthy bug desperate to find a new host.
So I've gone off radar from meeting up with people for a while.
To be honest, I don't really have the energy to go gallivanting so it's no hardship.
From this time last week, I feel 100% better but from this time three weeks ago I still feel pretty pathetic.
All in all, things are looking up but there's still a little way to go before I feel me at full strength again.