Here I go again

In an unexpectedly speedy turn of events, today is new drug day.

Woohoo, obviously.

I'm switching from Tecfidera to Cladribine. I am quite scared.

Which explains this week's pie.

:: Here I go again by Whitesnake

You really got me

People deal with a diagnosis of MS in very different ways.

None of those ways are right or wrong, they are simply the way you choose (or are able) to deal with this breezeblock that's been dumped unceremoniously in your life.

Personally, I am an information junkie and I read as much as was available and asked as many questions as I could think of. This is possibly due to a) my previous life as a journalist and/or b) my inbuilt overwhelming nosiness.

During my reading and questioning, I came across a phrase which was repeated over and over again on forums, inspirational quote websites or in interviews. It seemed the unofficial slogan of the community.

If you have MS, I'm pretty sure you've seen it too, it's the catchy: “I have MS but MS doesn't have me!”

And yes! I thought, when I first saw it, that sounds like an ideal mantra to have, maybe I'll even have it on a t-shirt! 

It seemed positive and hopeful and a little bit fighty and I liked that. And while I was still fortunate enough to be pretty quiet on the MS front five years after diagnosis, it remained a slightly smug motto.

But then, as the relapses became more severe, took longer to recover from and left more damage, I had weeks when I was certainly more in this camp:

Sometimes, there is no point in denying that MS does have me. It had me when it took my sight, it had me when it stopped my speech and it has me when it forces me to review and adjust any number of my personal spheres.

But to live with MS means to find your own balance between the two extremes: the optimism and the despair, the denial and the knowledge, the fight and the fear.

Fifteen years since I found the first MS mantra, I still try to retain the positivity of it - but am now far more likely to temper it with the reality of the lived experience. 

:: You really got me by The Kinks

The first cut is the deepest

It's Hallowe'en - what better way to celebrate the night of heebie-jeebies than by dwelling on my own unnerving condition?

I've spent some time today wondering at which point over the past near-15 years I have felt most scared by my MS.

• That very first hospital admission?
• Hearing the diagnosis?
• Telling my partner he could leave if he wanted to?*
• During the decisions we made about having children?
• Leaving work and feeling useless? Restarting and struggling again?
• Struggling with poor balance, pain and gradual cognitive destruction?
• Realising that my eyesight really wasn't going to improve?
• Wondering if this moment is as well as I'm ever going to be again?

I honestly don't know. And the sad likelihood is, unless some sort of miracle cure is discovered, the most frightening is probably yet to come.

Of course, I'm fully aware this is no way to live a life - trembling in the face of what-ifs - but sometimes these thoughts are completely unavoidable.

And maybe they deserve some consideration.

Being diagnosed with an incurable, progressive disease is frightening. There's no getting away from that.

Once we're diagnosed we realise that, to a greater or lesser extent, fear is a part of our lives now. Fear of the unknown, fear of the known, fear of the damage, fear of medication, fear of progression and fear for our future.

I think we need the chance to acknowledge this dread now and again; to talk about our what scares us and rail tearfully/angrily/gin-sodden against the unfairness and randomness of a disease that was absolutely not our fault.

Sometimes we need these times of overwhelming dark to be able to fully appreciate our light: to see how remarkably we're coping, how strong we became when it was our only option and how very proud we should be of the fact that we get up every single day and carry on.

Perhaps if MS could see what it was up against, it might play a few less tricks. 

:: The first cut is the deepest by Cat Stevens

* He didn't. We got married.

Being boring

A lovely friend of mine is currently struggling with the achingly dull and deeply unnerving process of recovery.

She had her first relapse around this time last year and still feels she is dragging her way through the improvement swamp.

After the initial drama of the damage being done, the hospital admission, the steroids and the crisis management, it’s actually the recovery that proves itself to be the more testing journey.

A journey that manages to be both tedious and terrifying.

There might be noticeable leaps during the process, there might be tiny incremental steps, but at some point in every recovery comes the point at which you begin to wonder if this is it. Is this as much as I’m going to get back?

Sometimes it isn’t and your body will surprise you with a further glorious bust of repair.

But sometimes it is and that is when you have no choice but to start the process of mourning and gradual acceptance.

Every time it happens, it is like a mini death and every time it happens, you have to go through a grieving process.

And it all take SO LONG. My longest recovery (or, more accurately, where I improved enough, but not enough to be as I was before) took a year and a half.

A year and a half of hoping and waiting and watching and bargaining and being careful and declining invitations and being so bloody sensible.

With the end result of, well, what? Damaged vision, painful skin, impaired balance, cognitive mash.

As I said to my friend, the whole process reminds me of a line from the wonderful poet Philip Larkin.

In his poem Dockery and Son* he describes life as “first boredom, then fear” and it’s a line I think that could be stolen to describe the recovery process.

It takes a lot of patience and strength to wade through a recovery. It takes a lot to lie endlessly and uselessly in bed and wait, a lot to live in our own unhelpful thoughts and a lot to drag ourselves up and carry on. Living with the dreadful knowledge that sooner or later this will all happen again.

So we should remember to be proud of ourselves – even in the darkest times.

To be proud of how we make our own way through the boredom and the fear.

:: Being boring by Pet Shop Boys

*Read the full poem here. It’s wonderful.

I first fell in love with Larkin's lyrical discontent as an A-level student, but the full aching sense of loss, disappointment and regret in this poem was lost on an 18-year-old. It’s only on re-reading as an adult that it’s made me cry.

Dear Prudence

So I thought I’d write a little bit about fear this week.

I know, cheering.

It’s been sparked by last week’s bike purchase and the things I was thinking as I finally went out on said cycle. TWENTY FIVE years after I’d last sat on one.

We are lucky enough to live within easy reach of the countryside and there’s a handy track behind our little estate, just waiting for nervy cyclists wearing their brother’s old bike helmet.*

So filled with both trepidation and excitement – but mainly trepidation – I clambered aboard and pushed off.

And do you know what, it WAS wobbly and it WAS scary and I DID fall off (distracted by a passing cat) but it was a complete and absolute utter joy.

I was reminded of being a teenager and biking to school, skirt hoiked up, whizzing happily in the traffic. I was suddenly younger and free-er and far more smiley than I thought I would be.

It wasn’t without worry – my steering was questionable and the brakes took me by surprise a few times. Also the seat really, really needs more padding, but I was so proud of myself.

It made me realise that I can, for the time being at least, do the thing I wanted to do – not despite the fear, but alongside it.

And I think this is quite a key part of living with MS.

There will always be fear – fear of diagnosis, fear of the damage, fear of medication: the side effects and the efficacy rates, fear of what others think, fear of relapses, fear of progression, fear of the unknown and fear for the future.

And while I don’t advocate not talking about your fears or refusing to acknowledge that they are there, it cannot help to dwell too much upon them. 

What can help is to find a way to live with this ever present companion and somehow accept it into your life.

Yes fear has a voice, but it isn't the only voice. There are other far more interesting, positive and wise speakers out there that I would like to ride with.

:: Dear Prudence by Siouxsie and the Banshees 

*The helmet might be kindly described as vintage, although my daughter collapsed in fits of giggles when she saw it, so perhaps laughable is a more accurate term. It belonged to my younger brother who last wore it over his questionable mullet at the age of 14. When I mentioned to my dad that I’d bought a bike but failed to buy a helmet, he went immediately went to his magic hoarding shed and pulled the original box out with helmet intact like some kind of head protecting wizard.

Girl on fire

So I ended my last post with hope and it reminded me of a book I’ve just read.

(Note – I realise I am a 40-year-old woman responsible for a child and not an angst-ridden teenager, but I’m don’t care what you think right, I’m a bit of a fan of young adult fiction. And I’m going to slam the door and stomp off to my bedroom to read it. I didn’t ask to be born.)

In the publishing sensation that is The Hunger Games trilogy, young heroine Katniss lives in a dystopian future and enters an unthinkable fight-to-the-death live action programme framed as light entertainment.

Without giving too much away, she turns out to be quite a symbol of hope for the persecuted masses who start to see her as the figurehead for a long overdue rebellion.

But behind the scenes, the film adaptation shows the head gamesmaker and top politician, the twisted minds running The Hunger Games, having the following telling exchange:

Seneca Crane: “Hope?”

President Snow: “Hope. It is the only thing stronger than fear. A little hope is effective. A lot of hope is dangerous.”

And this, I think, is at the heart of my own fight for balance. Not the physical MS balance, that’s a bit of a losing battle, but the emotional MS balance.

Throughout this whole MS journey* I have always strived to keep hold of hope.

I think this is a positive thing and it has often served as a good pep talk for my ailing body: remember, there’s always hope, remember, there’s always hope.

But I’m also conscious that eventually – in each relapse – there will come a point when there is no room left for hope.

Relapses are a perfect example of how a little hope is effective; keeps me positive, keeps me believing, keeps me going - and a lot of hope is dangerous; what happens when reality bites and I need to face the fact I’ve lost that bit of me for good?

Good question, back to The Hunger Games.

The final sentence of that conversation is: “A spark is fine, as long as it's contained.”

Perhaps that’s an example too – keep a spark of hope, but contain it within realistic boundaries. Keep hoping until you have to stop. And then start hoping you will gain acceptance.

There’s quite a lot to read into these kids’ stories you know.

Out of interest, the tagline of The Hunger Games is: “May the odds be ever in your favour.” Let’s have a little hope that’s the case.

:: Girl on fire by Alicia Keys

*Yack, by the way, to the word journey. I can no longer say it without believing I’m on a celebrity reality show.

I am woman

Four days.

Four days is all it’s taken to go from gp referral to diagnosis to hospital treatment.

Lord knows the NHS has its critics who spell out the many reasons why it’s not perfect, but to me it is a beacon of brilliance.

I was fast tracked. My gp had examined me and looked quite worried - never an emotion you want to see cross a gp’s face – so referred me immediately. I had an appointment yesterday at the one-stop breast care clinic at our local hospital.

To say that the care was professional, reassuring and compassionate is a massive, massive understatement.

I had a mammogram (not as uncomfortable as I feared), ultrasound (sticky) and treatment with a consultant (reassuring) all within two hours.

~ I also was given a bonus lesson in how to tie my hospital robe up properly. Useful as I have an MRI pending and I will not have to do my usual flail around in the changing room and hobble to the tube while grabbing onto the ties and trying very hard not to flash other unsuspecting patients. ~

And it turned out that it was a huge cyst. A great whacking sack of breast fluid created thanks to a) my age and b) my hormones.

It was drained – no anaesthetic needed – within minutes. Yes, it might come back and I’ll need to keep being aware but I was done and okay. And I have never been more grateful.

I’d attended the appointment with my long-suffering hubby who has supported me through my many and varied MS issues. He is utterly brilliant.

But I was also struck by the emotion I felt towards the other women sitting in that waiting room. Women hunched holding hands with partners or compulsively clutching their gowns or staring blankly at the ‘breast check’ posters. All with the big, dark eyes and pale, pinched faces of worry.

Faces that had spent days panicking. Or covering up panic because they can’t worry their partners, or their children, their family or their friends. Or panicking only now because they can’t quite believe they would ever have to be here and now they are and its hit them.

And then there were the women who had no one with them, who had made that frightening journey on their own and who might later be making tear-stained phone calls, walking out alone along the sterile corridors.

As I sat waiting for my results it seemed the only, only thing to do was to hope that all of us got out of there with good news – that this unspoken waiting room solidarity could somehow guard us all.

I have no idea what happened to the other women. I don’t know if my silent hope worked. But for one day our lives touched and I felt an overwhelming surge of protection towards my team; my frightened, waiting women.

:: I am woman by Helen Reddy