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

Waltzing along

A week is a long time in politics, as Harold Wilson is reported to have said.

Although anyone watching the constantly shifting sands of Brexit would argue that reducing that week to a day might be more accurate.

But it turns out that a week is a long time in my work panic time frame too.

After writing last week's blog about trying to find work, I had an unexpected meeting with my former employer offering me some consultancy work back with them.

Just for a limited period at present - but back doing what I did before and back thanks to a government grant awarded based on work I had done before.

Very relieved. And pleased.

But it has made me realize how closely my self-worth is tied up with working. And I suspect I'm not the only one who feels this way.

I was interviewing a fellow MSer yesterday for the branch's newsletter. A former police officer who had to take ill-health retirement.

I asked her how she had coped with letting work go.

The answer wasn't easy - she knew the health benefits early retirement had brought, but the loss of the status of employment had hit her.

She has managed to find other things to focus on, but the taking away of a job she had done (and loved) for 27 years has been a bitter blow.

I've not enjoyed the thought of not working and I don't know how I am going to deal with it if I get to the point where I have to stop.

But for now I am grateful to have been given a lifebelt that may keep me afloat in the seas of employment for a bit longer.

:: Waltzing along by James

The times they are a-changin'

May you live in interesting times, goes the curse, and I do feel in the midst of a particularly fascinating one.

On a national scale, whatever side of the Brexit divide you are on, I think we can all agree the situation we are currently in is nothing short of a warning-to-history tragicomedy.

On a personal level, my recent freelancing work has come to an end, leaving me facing the prospect of a job search - not something I am relishing.

It's all change - and not necessarily ones I would have chosen.

So to stop me fretting and feeling completely useless, I have volunteered to help with our local branch of the MS Society.

Really I should have done this ages ago because apart from one charity collection outside a local supermarket, I have done nothing practical to help.

But after a committee meeting yesterday and the filing of paperwork, I am now a fully fledged volunteer.

I really hope I'm of some use to the group. And, if I'm honest, I hope that doing the role they need will be useful to me - to help give me a purpose while I'm not working.

Perhaps this change will do me good.

:: The times they are a-changin' by Bob Dylan

Don't give up

When I was first diagnosed I set myself a personal coping time frame.

After the initial relapse, the shock of diagnosis and the subsequent settling period, my aim was to get through the first five years.

I don't know why I felt the need to set myself this limit, it wasn't as if MS was going to suddenly decide to quietly pack up and go away as soon as five years had elapsed.

And I don't know why I picked that arbitrary stretch. Maybe I'd read something about prognosis milestones which made me focus on that as a number. Whereas the benefit of actually having had MS for this length of time means you learn to focus more on the moments than the months.

But five years it was, and I made it through those years relatively unscathed.

So the next aim was 10.
And I made it - although with much more damage.

This weekend I hit 15 years.
And I made it - increasingly altered.

Fifteen years is a long time when you think about it isn't it? It's quite some time to be living with a disease that you did nothing to invite in. Fifteen years to live with uncertainty, change, deterioration and complete exhaustion.

It's an achievement of sorts though and I almost want to organise a bit of a bash. I won't of course, I'm not sure you can get MS party bags.

But I do feel there needs to be some sort of celebration of the past decade and a half.

Even if it's just a recognition of sheer bloody-mindedness, punctuated by periods of unexpected strength and bouts of utter gratefulness all wrapped up with the love and support of family and friends.

:: Don't give up by Peter Gabriel, ft Kate Bush