Making your mind up

I read an astonishing statistic recently – apparently the average person makes more than 35,000 decisions per day.

THIRTY-FIVE THOUSAND.

A DAY.

Seriously? I can't think that's right. I can’t even work out how we would have time in the day to make that many decisions, never mind what on earth they could all be.

But according to the helpful techie updates I get at work that is the figure our brains are grappling with.

And, as anyone with MS knows, it’s not even a fully functioning brain that is trying to deal with these thousands of decisions to begin with.

It’s no wonder that we, more than most, can suffer from decision fatigue – a term coined by social psychologist Roy F. Baumeister.

Just like muscles tiring after a long workout, our brains are also a muscle that become exhausted.

And when our brain is tired, it conserves energy by making impulse decisions—or by making no decisions at all.

This explains a lot about my inability to decide, well, anything, after a day at work.

But there are a few things that can help:

• Stepping away from the chaos – some of our best decisions are made when we are relaxed and away from the demands of daily life. Giving my brain a break - lying in the bath, back-chatting the cats, zoning out on the settee infront of rubbish tv - can help
• Establishing daily routines that minimize decision making – my work clothes are chosen and put out the night before, I plan meals for the week on a Sunday, I make my office lunches the day before. Yes, I admit, if I suddenly don't fancy the outfit/food it's a bit limiting, but I can live with that
• One thing at a time – OK, not hugely successful at this one. I’m a bit scattergun. Too many emails open in one go, different household jobs begun at once, three part-started books by my bed. Surely it would be a lot less fatiguing to just do one thing at one time
• Setting a deadline on decisions – tell your brain when it needs to concentrate on making that decision, freeing it up to think about other decisions at other times
• Switching the phone off – we face an information tidal wave every day forcing stressed and speedy decision making. Having very little time to think is likely to lead to impulsive decisions. I definitely need to try and step away from technology for a bit to re-set the process
• Eating something healthy - hunger is scientifically linked to our desire to make impulsive decisions. (Actually, pre-MS this might explain some of my youthful fashion decisions. Or university flings)

It’s pretty clear with 35,000 of the little blighters waiting to be tackled every day, there’s no way to avoid making decisions.

And it’s not as if adhering to the above tips will work on those days when absolute brain paralysis hits and decision-making anxiety takes over.

But it’s a start and gives me a bit more confidence in my next big decision. Which is: tea – regular or large?*

:: Making your mind up by Bucks Fizz 

*Actually, I can do this one. Large tea. Always the large tea.

Getting away with it

I firmly believe that when you get your MS diagnosis, you should also be presented with a hamper of indulgent goodies and a nice card.

To be precise, this card:

Not because I am some sort of boot-shaped recidivist, but because if you’re given one crappy incurable disease, surely you should automatically have a free pass from any other sort of health calamity.

Seems only fair.

So imagine my horror when an envelope from my GP landed on my doorstep inviting me to attend an appointment because ‘you are at risk of a long-term health condition.’

My first reaction was, yes, I know, it’s MS. Bit of a late warning.

But, on ringing the surgery, it turned out that actually it wasn’t the usual suspect, it was, in fact, the entirely new prospect of diabetes.

As part of its new prevention programme, anyone who has ever been at risk of developing diabetes is now being invited to a yearly screening appointment to assess that risk and talk through what can be done to help.

I’d been called because - despite having absolutely none of the risk factors - I’d somehow managed to develop gestational diabetes during pregnancy. It went after my daughter was born, but I knew that it would always put me at an increased risk.

Almost 10 years later, it had become a very vague thing at the back of my mind to consider occasionally. But then this letter arrived and brought with it the very present threat of having to deal with another chronic illness.

You would think that being dealt one bad hand should be enough for anyone. But sadly, in life’s faulty deck of chance cards, this is not necessarily the case. Something outlined in this particularly scary article linking diagnosis of MS with a higher risk of developing other nasties.

So what can we do?

We can adapt our diet, take our rest, watch our stress levels, adjust our dreams, change our outlook, grip tight to our humour.

We can try and construct some semblance of a healthy life with the cards we've been given.
But sometimes it feels like a pretty flimsy paper structure.

In the end, I had my screening and I was okay - no diabetes at present. Although I remain at risk and will be reviewed on a yearly basis.

So, for the moment at least, I breathe a sigh of relief.
But I am all-too aware that the sigh shouldn't be strong enough to blow my house of cards down.

:: Getting away with it by Electronic

Journey of the Sorcerer

I’m 42 tomorrow.

Really am hoping it’s the answer to life, the universe and everything.

:: Journey of the Sorcerer by Eagles

Lemon meringue

So it’s farewell to pancake month. V sad.

But in its honour, here’s another MS-based Venn diagram. Like last time, apologies to John Venn for subverting his genius maths tool.

And here’s the recipes for battered and scrambled pancakes if you get hungry.

:: Lemon meringue by Poe

Painkiller

In a way which is very, very different to the Fifty Shades sort, I have recently experienced pleasurable pain.

Yes.

No restraints, compulsive lip biting or red rooms required for this one, just a pair of humble high heels.

And the reason for the joy is that – my feet hurt!

The soles of my feet hurt!!

The soles of my feet which have not been able to feel anything for almost 10 years, they hurt!!!

I’d noticed in the summer that the feeling had started to come back to my feet but the sensation got a really good workout recently at my friend’s wedding where there was lots of emotion, lots of prosecco and a helluva lot of dancing.

And by the end of the night, as the band played themselves out, I was finally able to join the cohorts of ladies rubbing the soles of their feet and cursing their fancy shoes.

I haven’t been able to do that for nearly a decade.

It was a curiously pleasant pain because it confirmed the return of sensation, something I had feared was long gone.

It’s a pain I welcome, rather than one of the many sorts of MS pain which I really don’t.

Interestingly, up until the 1980s, MS was thought to be a painless disease. It was presumably thought of as this by medical types who didn’t have the disease and therefore didn’t actually know how ruddy painful it can be.

Types of MS pain I have experienced, in a countdown of hideousness:

5) L’Hermitte’s Sign – a sensation similar to that of an electric shock running down the spine when the head is bent forward. Makes washing hair over the bath an impossibility.

4) MS hug – it’s really not friendly

3) Optic neuritis – stabbing pain whenever I move my eye a fraction followed by sight loss you say? Not today, thanks.

2) Trigeminal neuralgia – nicknamed the suicide disease. Horrible.

1) I don’t actually know the proper term for this one, but it was worse than labour. And I can say that as I’ve done both. It started in the night as a severe burning pain across my stomach. This then led to screaming agony, paramedics and gas and air (pointless) as the sensations spread across my entire body and there was no way to be that wasn’t pain. My neurologist suspected that all the nerves in my body had gone into spasm all at once. For more than five hours. Heralded a relapse, obviously, but I took the view that the resultant destruction of sensation from my chest down was worth it to get rid of the pain that started it.

So the recent normal, high-heeled, dancing pain has been something of a pleasure. Which is just as well as I have another wedding in a couple of week’s time.

Bring on the dancefloor.

:: Painkiller by Turin Brakes

Love to hate you

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, you dope and I bring the love. All the love. I am an incurable 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 14 years we’ve been together. Oooh, 14, that’s lovely isn’t it? Matches today’s date and everything. It’s like we were meant to beeeeeeeeeeeeeeee.

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*

:: Love to hate you by Erasure

Thank U

My boss is leaving work this Friday. This is very sad.

She will leave a massive gap of knowledge, expertise and passion in the organisation, but she will also be a huge loss to my personal working life.

She has been nothing but understanding and supportive to me – even when I managed to end up hospitalised with a massive relapse just 12 days after I’d started.

Yes, I’d voluntarily told her about my MS during interview, but I didn’t expect to have to slap her in the face with it quite this quickly.

Because from her point of view, it was a panicked early morning phone call from an unproven employee with whom she had little personal connection.

A phone call telling her (in a very slurred fashion) that I now couldn’t speak, walk or function anywhere near well enough to do the role that she had entrusted me to do.

Not the best of first impressions.

In the end, the relapse was so significant, I needed more than three months off sick and had to have an extremely managed return to work with equipment organised, transport signed-off and tasks shared. Although I returned to work, it actually took ten months before I felt fully on top of things again and all that time I knew I wasn’t working to the best of my ability.

And I’m aware there are legal requirements and company policies in place that should help with this sort of thing and I know HR teams manage the mechanics of illness all the time, but in the end, it was down to her to look after the day-to-day mess of me that she had been left with.

Without her willingness to back me I doubt I would have been able to continue working in this role. And I really want to work.

It should be patently obvious that trying to keep a job with any kind of chronic illness is not an easy thing to do. For anyone involved.

It takes understanding and support, communication and openness. It takes being scrupulously fair and it means gaining trust. It takes patience and belief and a lot of hard work. And it takes these things from the employee AND the employer.

Distressingly, it doesn’t always happen. Look at the papers, read online forums, ask someone - there are too many people who do not feel they can talk honestly to their employer or who have encountered prejudice and discrimination when they have.

Many people who have been treated unfairly or who do not feel able to continue working, are in that position not because of their health, but because of their workplace.

Many people with MS cannot work – and they should be supported.

Many people with MS want to work – and they should be supported.

I really don’t want to feel useless, either in my personal or my professional life.

So, I’d like to thank my boss for being thoughtful and considerate and kind. For fighting for me and for never once making me feel like I was her workplace burden.

:: Thank U by Alanis Morissette