Fall at your feet

It's all got a bit much this week and I'm therefore struggling with knock-on symptoms.
The only way to deal is with a bath, a cuppa and some lovely music.
Enjoy this week's tune from some superb songwriters.

:: Fall at your feet by Crowded House

Lazy

I am in the lucky position (especially at the moment) of being able to work from home.

I work in communications and a lot of it is as you'd expect - sitting at a keyboard typing, hunched at a makeshift desk planning or Skyping into meetings and trying to say something useful.

At the moment I'm in the middle of writing and uploading some online training for a national children's charity. I've been learning some new digital stuff from a very helpful chap at a company in Serbia.

So the work calls have been a little different - usual chit chat about work, bit of weather comparison and then a resume of whatever new Covid-19 announcements have been made in our relevant countries.

Fascinating to see how different places are dealing.

So it's all very positive and very busy - but good heavens I am exhausted. And doesn't my MS know it

Numb hands, permanent hug, terrible balance - they're not new symptoms, they're all very, very familiar. And I know they're rearing their heads to unpleasant levels simply because I'm so shattered.

Really, what I want to be doing now is just being hugely lazy for, ooooh, about a week. Yes, just a week to be utterly and completely and unashamedly slothful.

And then I'll be able to get back into it.  Promise.

:: Lazy by Suede

Mirrorball

When I was at university I worked behind a bar during the holidays to earn some extra funds.

One stint I did was in a working men's club which had a 'male only' room - so as you may imagine it was quite full of eyebrow-raising comments and exaggerated machismo.

And while I never actually had anyone say to me that old cliched classic 'My wife doesn't understand me' there were certainly variations on the theme.

Of course the vast majority were just trying to get away with chatting up a young barmaid - and therefore it was likely to be the case that their wives understood them all too well.

But that doesn't take away from the fact that maybe everyone does want someone to understand.
And this is very often the case with MS and all it's confusing, frustrating, frightening and invisible symptoms.

It's nigh-on impossible to explain some of the symptoms we experience and even harder to describe the impact they can have on almost every aspect of our lives.

So I was really touched by this film made for Shift MS, a social network for MSers, which so accurately captures the day-to-day life of many of us with a diagnosis.

Everything in it is overwhelmingly familiar to me - the visual colour loss checking, the finger-to-thumb testing, the full-body weakness, the struggles with concentration and the "I'm fine" lie.

It's a really wonderful depiction of a really horrible disease and reflects what we deal with astonishingly well. Have a look.

:: Mirrorball by Elbow

I will survive

Oh dear.
Oh dear, oh dear.
Oh dear, oh dear, oh dear.

Just three more days of civilisation before I embark on a short* camping trip.

My friends have been encouraging me to join them in this so-called tenting joy for a few years and I have, until now, managed to point blank refuse politely decline.

The reasons I have declined are manifold. They're not all strictly MS related, although there's a fair bit of that. They are:

• no sleep. Which to most people would just be a bit of a downer, but for me means trouble speaking and thinking. I don't want to be a incoherent quivering mass under the canvas.
• pain. The chronic stuff that you can sort of live with because that's just how it is, but which is likely to swing into full-on performance action after a night on a blow-up mattress.
• the cold. Yes, I am aware we are on track for the hottest summer SINCE RECORDS BEGAN but this doesn't cater for sleeping outside under a thin covering of fabric.
• grumpiness leading to lack of friends. Grrrrr, I'm not happy when I'm tired, cold and pained. I am concerned that my friends are about to see the worst of me.
• the bugs. Don't mind creepy crawlies generally speaking, just don't want to share my pyjamas with them.
• no sleep. Again. (We're aiming to go for two nights. For some insane reason.)
• just general MS faff. You know, the eating around meds thing, the timing of the meds while somewhere out of your comfort zone thing, the remembering the meds in the first place thing. The lack of familiarity leading to cogfog blundering, the anxiety of forgetting stuff - pants, blankets, husband, the random spasmy nonsense that lands from nowhere and might result in one of those tin dish things (or whatever people eat from when they're camping) being accidentally thrown at nearby children.
• toilets. I'm concerned.

However, and I am repeating this like it's an emotional lifebelt, it might be fine.

I could be a camping convert; it's a possibility. I am slightly excited by the fact we're borrowing my in-laws' tent which hasn't been used since 90s and has curtains and little windows in it.

The friends who invited me have pointed out that I'll have cute melamine cups and plates to play with and a little camping stove to make tea on. They know my weaknesses.

But mainly it's for my daughter who has never been camping and who really, really wants to go. She'll be able to play with her friends and have a little taste of the (almost) wild.

So, for her sake, I'm packing up duvets and painkillers and hot water bottles and repeating to myself: It might be fine. It might be fine. It might be fine.

And if it's not, we're then heading up to the glorious Lake District two days after, which is acting as the water-filled light at the end of the earthy camping tunnel.

:: I will survive by Gloria Gaynor

*but really, not quite short enough

Memory of the future

I can't decide if I would like to know how my MS will progress.

Do I want to know about every single problem that is heading my way? Would I like some warning on the symptoms or a heads-up on the relapses? Do I want to know the point at which I'll tip from RRMS to SPMS?

Would it be better to know in advance so I could dial down the anxiety of uncertainty and plan the practicalities accordingly? It might mean a bit of overshadowing the enjoyment of the present with the threat of the future, but at least I'd have some time to, well, brace.

Or is it better to simply carry on without that heavy knowledge? Enjoy the moment and not think about it until I absolutely have to. Not let it take over.

Would knowing when the next bolt from the blue was going to strike be better for my mental health or worse? Would constantly watching the clock gradually count down to relapse tarnish the rest of my time?

I can see the pros and cons of both arguments, I really can and I am very torn on this.

I know people with MS who are firmly in the no-awareness camp. For them, it's a case of not worrying about what might happen because it might never and even if it does, they can't do anything to stop it.

Then there are those who'd rather know. Be able to pack things in when they can, take the trips, expand their family or make the big decisions. Who have the desire to enforce certainty on huge unpredictability.

After 14 years and many relapses, I remain undecided.
I'm very much aware of the argument for simply enjoying every moment. But I think that's separate to just wanting a bit of a hint on what might be heading my way - and when.

However, the whole thing is a moot point, since although there might be prognosis indicators, MS is such an individual and contrary little bugger, we have absolutely no way of predicting for sure.

Our only option is to sashay through the good times and battle through the bad. The rest, whether willingly or not, we have to leave to the hands of fate.

:: Memory of the future by Pet Shop Boys

Invisible

It's a common conundrum among MSers - the struggle to explain to the outside world why you are feeling horrendous when "you look so well."

The hidden nature of a lot of MS symptoms - the cognitive swamp, the peculiar pains, the altered sensations, the bone-crushing fatigue - are just not that easy to get across.

We are sometime our own worst enemy - desperate to do stuff when we're able, desperate to hide our symptoms at work, desperate to protect our children from the worst.

But sometimes we need to explain the many hidden ways MS can kick us and although words are useful, they don't always get the point across as effectively as pictures

Shift.ms, a social network for MSers, has produced a really useful short film which aims to represent some hidden symptoms. Have a look.

:: Invisible by Alison Moyet

Do you want the truth or something beautiful?

I’ve just been on a lovely hen weekend with a small group of girlfriends.

There was drinking (afternoon tea and the stronger stuff), eyebrow raising lady chats and, of course, ridiculous willy straws.

And among the cafe stops, spa swimming and general amusement, I almost forgot that I’d been quite worried about the entire experience.

I’d been worried for one big reason: it was a weekend away with friends who know I have MS, but who don’t really KNOW I have MS.

A couple of them have seen me when I’ve been pretty rough, but the other four haven’t. And while I try to keep the optimistic ‘I’ll manage, I'll be fine’ mantra going, it's starting to occur to me that maybe I shouldn’t do this.

Because then my struggles with walking, talking or thinking wouldn’t come as such a shock. An unknown issue for my friends to suddenly try and accommodate. The unexpected spectre at the feast.

The endless balancing act of MS is as emotional as it is physical. And quite often it's one we keep to ourselves.

To live with a chronic illness means to adjust your physical activities, weigh up your energy, eke out your reserves.

But it also means finding an emotional equilibrium between the stark reality of what this disease does alongside the optimism that is being seen as increasingly important in our experience of it.

Frankly, it’s exhausting. And if we wake up like this, where does that leave us for the rest of the day? (Or the rest of the hen weekend?)

Sometimes I wonder if it would be better to just tell the truth. To do what the wonderful Caitlin Moran does and share my full visceral experience. An experience which at present, I am fully aware, is not as bad as it could be.

So should I just start to be honest about my fears? About my drugs causing night sweats, hot flushes or such an over-production of saliva and mucus that I feel like a leaking sieve most of the time? 

About the spates of repeated UTIs? About the middle-of-the-night despair? About the vomiting from fatigue? About employment panics? About my hands being too numb and shaky to competently insert tampons resulting instead in Tarantino-esque bathroom blood wreckage?

Perhaps if I was brave enough to tell the truth, then the wobbly legs from a cold walk into town or the struggle to speak after the heat of the pool would be out in the open and not a hidden issue.

Yet if I did tell the truth then we’d all have to face the havoc that this disease is wreaking. 

And that’s not attractive. Especially on a fun and celebratory weekend away.

The truth of MS isn’t pretty and that’s a very hard thing to tell – to our friends and to ourselves.

:: Do you want the truth or something beautiful? by Paloma Faith

Reward

I was on the train to work, half reading something to do with a celebrity I’d never heard of in Metro when I couldn’t help but overhear the phone conversation of the passenger behind me.

He was speaking in that exaggeratedly hushed tone people use on trains. A tone which tries to indicate that you realise it’s annoying to virtually everyone else nearby but you have to take this call as it’s really, really important.

Anyway, I don’t know what the bulk of it was about, but I did hear his report of a trip to the dentist – which was fine, in case you were worried - he needs to go back next August but he didn’t get a sticker.

And this made me smile.

We’re so used to this rewards-based recognition of dental appointments as children, that it’s almost a universally accepted trade-off.

It also remains an irrational but slight disappointment when you don’t get the same sticky well done as an adult.

So, with my annual neurology appointment looming in two days time, I’ve been considering what might be suitable rewards to receive at the end for those of us who are a bit more scrambled.

Obviously new brains and spinal cords, the ability to continually remylienate and genuinely feeling as well as we may look would be ideal.

But in the sad absence of those, here’s my thoughts:

1. A personalised hot water bottle/cool pack, which can be adjusted to suit your personal temperature preferences. And therefore prevent hands/legs/everything packing up on you when the outside environment gets just one degree too warm or too cool.

2. High heels with fancy microchips in the bottom that automatically balance you.

3. This eyepatch 

4. A flashing badge which has a slogan to represent your particular experience on any given day. Choose from: “TODAY I wet myself in public/said stupid stuff in a meeting because my brain won’t work/cried in the kitchen to hide it from my children/fell over outside a pub and had to explain the not-being-drunk thing for the 75^th time/despaired at the benefits system/inwardly crumbled at a thoughtless comment BUT I AM STILL GOING.”

5. A machine which magically allows other people to experience all of your symptoms – both the Boo! Gotcha! Bam out the blue ones and the constant, wearing, dragging ones, both emotional and physical. Admittedly it would only be for a short period (unless they’d really annoyed you), but it may help them to gain some insight into what it is you’re trying to explain.

:: Reward by The Teardrop Explodes

Don't let him waste your time

I’ll be honest, I’ve been putting it off forever.

Finding many and varied reasons not to: it’ll be very dull, no-one will be interested, work is frantic, home is frantic, there’s places to go, there’s friends to see, oooh, there’s that thing on the telly, the cats need feeding, I’ve got to help with the homework, the loo needs cleaning (no one says this voluntarily, ever) I need a cup of tea.

But! No more! I now have a large cup of tea, the loo is sparkly fresh and at almost 13 years into this multiple sclerosis malarkey it’s about time I tried to write it down. Surely there’s something of use that I’ve learned since that first unknowing trip to hospital in January 2004.

Erm.

Well yes, there is quite a bit, but the vast landscape of MS means there’s an awful amount I don’t know too. Perhaps because it’s too frightening, because there’s no point in worrying about it until it happens, perhaps because it’s too overwhelming and perhaps because, quite honestly, I’d rather-not-consider-that-aspect-of-it-yet-thank-you (yes, I am looking at you bladder and bowel control, sneaking your icky little faces over the parapet.)

But if I do have any words of wisdom* they are:

• that dealing with MS may take things away from you – physically, mentally and emotionally – but it still leaves you with a choice about how you deal with those losses. And having a choice, even within diminishing parameters, is a massively powerful thing;
• that MS forces you to find out what kind of person you are and to discover that you are stronger than you think – and that’s not a bad thing to find out about yourself;
• that MS helps you, in the nicest sense, sort the wheat from the chaff – your decisions about who to spend your time with, what to spend your time on and the things that really make you happy; and
• that MS can sneak in like a really, really rubbish Milk Tray Man and instead of leaving you some iconic (although possibly slightly squashed) 80s chocolates, may steal your legs, your sight or your speech. But don’t let it take your sense of humour, your faith in yourself or your time.

If there’s anything you think you should be doing then, wherever possible, do it now. It’s taken me almost 13 years to realise that – and there are many things I haven’t done that I regret, but there’s an important lesson there and it’s one I’m now trying to live by.

:: Don’t let him waste your time – by Jarvis Cocker

*I say wisdom, I mean slightly incoherent ramblings that can get a bit passionate. Then I cry.