Silent sigh

We talk a lot don't we?

There's a lot of important stuff, obviously: relationships, family, jobs, money, the divisive doom of Brexit.

There's a lot of light waffle: how we felt about the latest series of Love Island, which phone to upgrade to and why on earth more than one woman would want to sleep with Boris Johnson.*

And in between these two extremes are the placatory soundbites that we use to fill the gaps when we're told something completely overwhelming.

Sometimes it's because silence in this situation is just too painful.

Silence allows the unspoken horrors that we cover with our torrent of words rise to the surface and bubble over.

I've seen two friends this week and experienced two ways in which words fall short.

The first friend had some truly heartbreaking news to share. The kind of news that really cannot be healed by words - not even the most well chosen ones. Anything I said sounded like I was just parroting the lines that should be said in these circumstances.

The second friend, who has never quite got to grips with the whole MS thing,  punctuated my mention of overwhelming tiredness and fear-driven cog fog with a dismissive "Oh, I know how you feel."
Gnfff.

But it made me wonder why we feel that the thing to do in these situations is fill them with words.
Is it to try and make us feel better? Make the other person feel better?
I'm not sure that they do either.

The words we have can be very powerful, but now and again they will simply not be enough. They cannot bridge the chasm that lies between us and the person who is suffering in a situation we just do not know and cannot understand.

Quite often the words are about how we think we should react, about our own panic and our own fears. And that is never, ever going to be helpful.

So instead of talking, perhaps sometimes it might be best if we close our mouths. That we just shut up and listen. And truly pay attention to what we're being told.

:: Silent sigh by Badly Drawn Boy

* Answers on the side of a bus please.

Exhausted

Oh my word I'm shattered.

Not just a bit tired, not I've slightly over-done it and a quick nap will pep me up tired, not even I need a week-long holiday tired (just had one, didn't help.)

But really and truly and properly deep bone tired.

This might be due to the following happening in the past 10 days:

• camping. Lovely as the toasting marshmallows and the company was, I was right, it really isn't for me. Made it through one night with the cold and no sleep before giving up and heading home for civilisation.
• a few nights in the Lakes. Beautiful but insanely active. Trying desperately hard to grab every single moment of movement and enjoyment does come with a payback.
• return from hols to a series of emails which appear to consist of other people getting increasing frustrated, arguing in passive-aggressive ways, threatening to quit the project and painstakingly copying me in. (I am freelancing at the moment, it's a new thing and a bit tricky to get my head round.)

I am aware that's a crazy amount of activity so I should be a bit pooped. But the problem with MS (well, one of the problems with MS obvs, as there are a fair few) is that any level of tiredness a normal person may have is leapt upon by an opportunity-grabbing faulty immune system and exaggerated by at least 3 billion. (If tiredness can exaggerate, then so can I.)

MS is essentially a lot of dragging ourselves around in lead-filled wellies through cognitive smog and emotional quicksand. 

There's a lot of cotton-wool thoughts. There's a lot of scrambled sensations. There's an awful lot of yawning, blank stares and missed points in conversations.

However, despite this, I'm not quite at genuine MS fatigue levels.

I'm not yet at the point where I've needed to sleep for 12 hours, crawl to the bathroom then lie on the floor by their toilet for an hour before having the energy to crawl back to bed. That was an enjoyable relapse.

Nor am I at the losing speech point of tiredness or the overbalancing and falling into the kitchen taps level, so I should be grateful really.

But if I don't get a bit of self-enforced shut down soon, it might be the bathroom floor for me again soon. And not in a fun overload of pink gin way either.

:: Exhausted by Foo Fighters

Waterfalls

We're on our hols in the Lake District.

Beatrix Potter! Grasmere gingerbread! Peaceful and powerful water! How lovely.

Reminds me slightly of something I once wrote for my daughter quite a while ago now on an equally watery holidayr:


Immersion

It never stopped that summer.
Rain hammered daily from swollen black skies;
a gathering canopy.

We sulked in our caravan.
Our first family holiday spent bitter and drenched;
heavy shouldered by fate.

Nothing here to delight you, we
fretted above you. Just two years and drowning
under adult surrender.

By the fourth day you'd tired of
chasing beads down the window, of crayoning rainbows
that wouldn't appear.

So you made your own mind up
and bolted for freedom, on tippytoes stretching
to throw open the door.

Unleashed you ran freely, your
happy toes squelching, your whole body laughing
as you blazed round the field.

Our holiday postcard.
Our beautiful daughter.
Dancing barefoot as pierced clouds
streamed rivers from heaven.

:: Waterfalls by TLC

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

Wide open space

I'm mulling over some big decisions at the moment - and feeling a bit overwhelmed as a result.

I've needed a bit of clear space to try and work things through away from work commitments and household tasks - and unexpectedly, I think I may have found it.

I'd never paid much heed to my parent's desire to get out into the garden or put much stock by their claims of how beneficial it can be.

To me, the garden is a mysterious and threatening realm, a plant-filled battlefield which leaves me feeling so useless that I am likely to give up on it before I even start.

I'm not, at the risk of understatement, a natural gardener, I'm a hack-random-things-back-and-hope-for-the-best-er.
In fact I've been tempted on more than one occasion to apply a scorched earth policy to our back garden/rain forest.

But this week I've been out there. Pulling things up, digging things over the generally preparing the ground.

I've found the concentration on the physical helpful - it's helped clear my mind a little and given me something small and productive to focus on.

I can only hope the outdoor space is giving my internal dilemmas room to breathe.

:: Wide open space by Mansun

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

Take a walk on the wild side

I've been re-reading Philip Pullman's His Dark Materials recently, an epic trilogy of fantasy novels set across parallel universes.

In Pullman's incredible worlds, humans have daemons. These take the form of an animal and are the external physical manifestation of your inner-self.

Obviously I have spent way too much time considering what form my daemon might take* and my perusal of highly scientific online quizzes has sent me skittering from one website to another, eventually leading to a sad animal-human discovery.

And what I've found - although I really wish I hadn't - is that there is an equivalent of multiple sclerosis in the hedgehog community.

It's called Wobbly Hedgehog Syndrome (no, seriously) and it is a neurodegenerative disease which affects the brain and spinal cord of African pygmy and European hedgehogs.

WHS affects hedgehogs in a similar way to the effects of MS on humans. Symptoms of WHS include:

• falling over, often to one side
• tremors
• muscle atrophy
• dysphagia (problem swallowing)
• wasting
• ascending paresis (slight or partial paralysis)
• tetraparesis (paralysis in all four limbs)

As with MS, there is no known cure for WHS. Various vitamin supplements, antibiotic and steroid treatments have been used; some appear to temporarily improve the signs or slow the progression of the disease.

However, as signs of WHS wax and wane, it is difficult to assess the benefits of treatments. Sounds horribly familiar.

Oh the poor Mrs (and Mr) Tiggy-Winkles. This discovery has made me very sad. Turns out that we humans are not the only ones coping with prickly MS days.

:: Take a walk on the wild side by Lou Reed

*I like to think cat, but suspect, more likely, sloth.