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

My silver lining

Bit of a bold statement, but here we go: until I had MS, I don't think I knew how to be truly grateful.

I didn't know how to appreciate that I was feeling well.
I didn't know how to really notice what was around me.
I didn't know how to stop. And be happy just to be.

And while all of that sounds insufferably navel-gazey, it is true.

MS is generally a monumental shitshow, but if I search hard enough, there are some silver linings. And those silver lining tell me that sometimes:

• I'm allowed to stop ricocheting from pillar to post
• I'm allowed to lower my guard
• I'm allowed to sit and watch the world pass me by

I haven't let go of all the fear, I haven't stopped worrying, I won't escape an irrational sense of guilt. But I don't have to feel like that all the time.

And when I don't, I am allowed to appreciate it.

:: My silver lining by First Aid Kit

'74-'75

Numbers and me – we're not friends.

I wasn't a fan of maths at school and am now reliving my fear of fractions through my ten-year-old daughter's increasingly complicated maths homework which seems to my rusty brain to be pitched somewhere between Stephen Hawking and Albert Einstein.

And yes, I know we use maths every day and yes, there are numbers everywhere but as I picnic in our local park I don't generally calculate the height of trees from the length of shadow cast. (I'm trying for the life of me to dredge up what this process is called. Gah, can't remember. *Googles* Ah, proportional reasoning. Another fact to instantly forget.)

But you can't avoid the numbers game with MS – which for the purposes of this post I am renaming the Maths Shit.

For a start, there's the odds of developing it – research highlighted by the MS Trust tells me that in the general UK population about 1 in 600 people has MS.

To have developed it, you need to deal with more maths - there are currently more than 230 genes that have each been found to increase the risk of someone developing MS to a small degree. None of them directly causes the condition itself and someone with MS will have a combination of many of these genes.

Researchers have then calculated that genes contribute just over half (54%) of the risk factors. The remainder would probably be due to other environmental factors such as where you live, Vitamin D levels, infections or smoking. 

Then there's the maths of other people – or the chance of developing MS by relationship to someone with MS:

• Identical twin - 1 in 5
• Non-identical twin - 1 in 22
• Other siblings - 1 in 37
• Parent - 1 in 67

So I had a 1 in 600 chance of developing a disease which was itself dependent on a combination of 230 genes which in turn was dependent on two different percentages of two different types of risk factors. And this convoluted calculation has led to the very frightening prospect of having saddled my daughter with a 1 in 67 chance of developing the same disease.

And although that risk is still dependant on her own combination of genes and personal environmental risk factors, it remains a potential - a horrible, horrible mathematical inheritance. And provides proof, if any was needed, that numbers and me are never going to be friends.

:: Song '74-'75 by The Connells 

Hollywood

I rarely pay attention to Oscars season - despite the usual who wore what ludicrousness being splashed all over the papers.

This year, however, it was who used what that grabbed the headlines.

Selma Blair, who announced her MS diagnosis last October, made her red carpet appearance with her pink diamond customised cane.

News outlets have reacted in their usual fashion with words like 'brave', 'inspirational' and 'crippled' sprinkled liberally through reports.

But I think she describes it best herself - with honesty, hopefulness and great humour.

:: Hollywood by Codeine Velvet Club

Losing my mind

One of the less recognised effects of MS (or I suspect any chronic illness) is the loss of confidence you experience as a person with the disease.

This week, chatting with a friend, has really made me really think about the insidious nature of lost confidence as a symptom.

When I was diagnosed at the age of 27, I was working as a journalist; knocking on doors, covering court cases, writing to daily deadlines, getting chased up streets - all the kind of stuff you may imagine. And some you might not.

Fifteen years later, as my cognitive symptoms have increased so has my confidence been gradually eroded.

Struggling with names, places, words, connections and directions are now part of my daily life. I no longer think quickly - or often coherently. I find writing far easier than speech.

These processing issues are, I'm sure, are horribly familiar to others with MS - as is the subsequent questioning of your own capabilities.

Most of the time, I can't work out which way to turn the front door key and stand stranded on the doorstep, simply marvelling at the competence of my former self.

Cognitive difficulties do create a silent panic. What am I saying? Why can't I think clearly? What impression am I giving?

There are some good and sensible tips on how to deal with memory and thinking problems.

But to some extent I feel these rely on having the confidence to ask for help in the first place. When you're already plagued by a confidence deficit, that's not very easy to do.

I'm struggling at the moment to see how I could realistically ask for more time to respond in a work meeting without:
a) appearing foolish or ill-prepared, or
b) having to explain how MS affects me to a sea of blank faces that I may not have met before, who don't really understand and who just want to whip through the agenda because they're on a hectic timescale of fifteen other meetings.

Don't have the confidence to ask for help - so you don't get the help you need for confidence.

It's a depressing Catch-22.

I'm not sure I've found the answer. The only thing I can think of to do is return to the mindset of my reporting days where I conjured up some sort of uber-confident version of myself who could drive off somewhere unfamiliar with an A-Z held up against the steering wheel, knock on unknown doors and ask a series of difficult questions.

It was never the real me. It was a carefully constructed work version I used to strong-arm myself into facing challenging situations.
I really did have to fake it to make it.

I don't know if this is the healthiest way to do it, but it might be the shorthand way to confidence. And - as a former reporter - I'm all for the shorthand.

:: Losing my mind by Liza Minelli

Bad valentine

Me: *drinking tea, reading peacefully*

MS: *crashing noisily through door, arms full of heart-shaped balloons, chocolates and flowers*

Me: *sighing, marking page in book* Oh hello.

MS: *opening arms wide, dropping gifts everywhere* Hiiiiiiya.

Me: Subtle entrance as ever, I see.

MS: Now, now, don’t be like that. No sarcasm today. For today is the day that I, yes I, represent love! Kindness! Appreciation! And also chocolates.

Me: *suspiciously* Well, that’s nice. Any reason?

MS: Duuurrrrr. It’s Valentine’s Day and I bring the love. All the love. I'm incurably romantic.

Me: You're incurable. There's a difference. *think, narrows eyes* Stupid question, but these presents - are they for me?

MS: *laughs hysterically, slaps thighs, wipes tears away* No, you deliciously defective dope. They're for meeeeeeeeeeeeeeeeee.

Me: Yes, thought so. And - do please bear in mind that I am reluctant to ask this - why?

MS: Well, my little brain-scrambled friend, today is the day that we celebrate our very significant others. The date we cherish and reward those who permanently and consistently enrich our innermost being.

Me: *grits teeth* If by ‘permanently and consistently enrich our innermost being’, you essentially mean ‘just won’t go away’ then yes, I guess that is you.

MS: I know! Fabulous isn’t it? Never mind these *gestures at pile of gifts on the floor* just think what I’ve brought you in the 15 years we’ve been together. 

Me:*drops head into lap* And what, exactly, have you brought me in those special years?

MS: Well, if you didn’t have me, you obviously wouldn’t have experienced the high adrenaline thrills of losing control of parts of your body at totally inappropriate times…

Me: Errr…

MS: ….the exciting challenge of huge life decisions involving all that really important stuff like work and children and money, the late-night ambulance rides and LOADS of thrilling medical tests that – if you had to pay for them – would bankrupt you, yet you get them all free…

Me: Errrrrrmmm….

MS: ….the bracing freedom of having to tell complete strangers your personal medical details, the character building admin of appointments/insurance/official claim forms and applications, the indulgence of spending days in bed because you just can’t move, the early independence of letting your daughter do things without you because you're wholly incapable….

Me: *mouth agape*

MS: …..close your mouth please, cherub, we are not a codfish.

Me: And in what world, is any of that a good thing? Seriously what has any of that proven? I can’t believe that you have the barefaced cheek to waltz in here like a diabolical Lady Bountiful and start throwing the contents of your entirely appalling Pandora’s Box in my face.

MS: *pouting* Bit OTT. Come now my little grump muffin, let’s not fight, It’s Valentine’s Day.

Me: *muttering* Nothing, that’s what it’s given me, nothing.

MS: *huffing* Actually, I think you’ll find it’s shown you the strength you didn’t know you had, the patience you always needed and the courage you always doubted.

Me: Hmm, okay. I’ll give you that.

MS: And it’s also made abundantly clear the love that surrounds you.

Me: Okay, well, er, thanks.

MS: Seeeeee, and you wouldn’t know all that if it wasn’t for meeee. Seriously I’m the best thing that’s ever happened to you.

Me: Bit misleading.

MS: Don’t be ungrateful. *gathers up flowers, chocolates and balloons* See you soon my luscious life partner and perhaps I’ll bring you another one of my unexpected treats next time.

Me: I’d rather you didn’t. *starts Googling divorce lawyers*

:: Bad valentine

Waterloo sunset

Yes, I am relieved.
Yes, I am very pleased.

But crikey I'm exhausted.

The concern over my work circumstances has been on my mind for the past couple of months and while I've been trying to appreciate the down time, I've been mainly panicking about not working.

But as this has changed and I'm back in the world of long meetings, lots of travel and team tea-making negotiations - at least for the time being.

So I'm delighted, but I'd also forgotten how tiring it all is. I have been freelancing from home for the past year - where the most taxing part of the day had been taking my daughter to school before sitting in our dining room with a large cup of tea, writing.

I am now back carrying out work for a national charity so this inevitably involves trips to head office in London. Very early starts, very crowded trains, very busy environment.

I travelled last week, train delayed by an iced-up points failure, so I ended up hurtling across the underground, frantically checking my watch, like a metropolitan White Rabbit.

By some kind of miracle, I made it to my meeting only two minutes late - but unable to make any of the faces out around the table because the panic and heated rush had temporarily awoken my eye damage. Not the ideal way to start.

Or, as it turns out, end - as on returning home, it was clear that the trip out had also impacted my legs. Cue five days of ropey walking.

Trying to work as my disability progresses is proving to be an increasingly a difficult balance. It's really good for my self-esteem, it's beneficial to my bank balance but it's a horror for my health.

So what am I supposed to do? Not work and struggle - or work and struggle?

It's a game, isn't it.

(My route to London takes me into Marylebone Station where the loos are Monopoly themed. I rather like them although I do wonder exactly what you have to pass in the bathroom to collect £200.)

:: Waterloo sunset by The Kinks