You keep it all in

Interesting isn't it, the way other people see you.

After my recent unexpected blurting out of my diagnosis and my conviction that I go on about MS just a bit too much, it appears not everyone thinks the same.

I was having a brief text catch-up with a friend who lives nearby, but who I haven't actually seen that much of in person this year.

I mentioned that I hadn't really felt well since March and they texted back with condolences and the reassurance* that no one would notice. They added that they didn't think I'd want it any other way.

And that surprised me - on two counts.

Firstly - and admittedly I'm speaking as someone who lives in this gradually declining body - I assumed that people would notice.

I do have to stop and sit down (or even lie down) more often than I ever used to before I can face the next part of the day.

I have had to rely on others to drive me around, I've had to turn down invitations from sheer exhaustion and while I have managed to keep working, it's been at quite a cost.

So is it that I've become a real expert in covering up? Is it that the changes aren't always easy for others to notice? Have we all just got too much going on in our own lives?
Or is it - if we're completely honest - that we don't always want to see?

Secondly, is it right that I wouldn't have it any other way?

Is that the impression I give? It may well be.
Or is that the impression that makes it easier for everyone else? It may be that too.
And if it's an impression and not the truth, then who am I lying to most?

It should be no shock to anyone that disabled people are still struggling with other's perceptions of them and I think this is particularly true for chronic, progressive diseases.

We've been one way for a long time and now we are gradually becoming another. We are striving to be the person we always were, but we are battling against something determined to thwart that effort. It's no wonder that we're confused, exhausted and almost continually grieving.

It's very hard to admit to yourself that you can't do what you used to, it's very difficult to explain it to others who have only seen the impression you are used to giving.
And I suspect I project that image because I am frightened of the person I am gradually becoming.

If I honestly think about the way I have managed my 15 years with MS, I don't think my friend was wrong on either of their points.

But I do think it's perhaps time I reconsidered the way I talk about my disease.

:: You keep it all in by The Beautiful South

* Is it a reassurance? And who is it reassuring?

What's going on?

Multiple sclerosis is a disease of questions.

What is happening to my body? Why is it happening? Why is it different for different people? When will I relapse? What will happen to me in the future? Have I done something to cause it? Why isn't there a cure? Can someone make me a cup of tea?

As a former journalist - and all round nosy person - I have asked these questions a lot.* 

And my role as the communications volunteer with our local MS group now allows me to ask the questions on behalf of others too - and share the answers in our quarterly newsletter.

I try and interview someone medically knowledgeable each edition, and autumn was the turn of our neurologist.

Here's one of the Q&As from our conversation. It's very interesting and may (or may not) be reassuring:

Q: What interests and frustrates you most about MS as a condition?

A: There are a large number of puzzling issues about MS which make it a very unusual condition. These include:

* why does it affect people in different ways - some people have a pretty 'benign' course, others have a terrible time

* some people recover extremely well from relapses, so why do others do badly?

* why is it so unpredictable? I have seen some people in their 70s have a relapse after 50 years of stability? 

* why do men and women have a different pattern of MS? 

* how does pregnancy - at a fundamental level - affect MS? 

* when/at what stage is it appropriate to give the most powerful disease modifying therapies? 

* what is going on in "true" progressive MS? 

The frustrations are mainly to do with a lack of resources (funding, facilities and people) to support people with MS, a complicated and pretty unsupportive benefits system and the complicated rules and protocols that have to be followed when considering therapies for MS. The lack of approved treatments for patients with advanced forms of MS is particularly difficult.

:: What's going on? by Marvin Gaye

* especially the last one

I'm coming out

I've lived with MS for so long now that I sometimes forget that everyone else around me doesn't know I have it.

I talk about it, I blog about it, I tweet about it. (I should perhaps sometimes shut up about it.) So surely it's out there enough.

But this week I was reminded that actually not everyone does know.

Despite my May relapse I have carried on working - this is mainly because I am self-employed and have no safety net apart from myself, but also because I picked up a really interesting new project just as the relapse started.

As a purely sensory one, this relapse has been unpleasant but not completely debilitating. I've been tired and very, very uncomfortable, but to look at me, you wouldn't know.

So it was a little odd this week that I found myself suddenly on the office floor and blurting out my situation to relatively new colleagues.

The scene: typing at my laptop (only mis-hitting every fourth key now, the hands are picking up) I decided to do the team round of teas.

Stand up, take one step, fall immediately on floor.

All heads turn.

Try to stand, fail, dramatically fall over again.

My immediate thoughts were - a) oh no, is this the sudden start of something new and horribly MS-ey or b) is it just a shoe issue?

You see I was wearing some new work trousers which were slightly too long. To stop them dragging on the floor and creating a trip hazard, I'd had to dig out an old pair of wedges - with a slightly dodgy heel.

Sitting on the floor with confused colleagues asking me what had happened, I gave them the two potential options and cheerfully mentioned I had a stick in my bag if I needed it.
Not the way I had thought I might out myself.

After the concerned witnesses had got me back on my chair, made me a cup of tea and fetched copious biscuits, I was able to give a bit more of an explanation.

It's become so normal now for me to talk about MS and I've told so many people in so many different ways over the years. But never yet from the floor of a busy office.

I'm not sure if it will get mentioned again, I'm a contractor who's only in one day a week and haven't had chance to get to know everyone very well yet.

But I was boosted by their thoughtful concern, their gentle questions - and the lovely girl who ran for some mounting spray and sellotape in an attempt to fix things.

Because it turns out that this time it was the heel of my wedge that had come adrift and resulted in a twisted ankle - and not multiple sclerosis.

But their quiet and kindly reassurance was good for the sole.*

The offending shoe. With emergency sellotape attached.

:: I'm coming out by Diana Ross

*Bad pun intended.

Mad world

Fingers endlessly tingling, workload keeps increasing and our political system is imploding.

I just want to sit like this. For quite some time.

:: Mad world by Tears for Fears

(Let me be your) Teddy Bear

We're back at Butlin's!

Hurrah for:

• the familiarity that prevents the cog fog
• the catering that helps the fatigue
• the AMAZING new swimming pool that eases pain and stiffness
• the family time 
• Billy Bear

:: (Let me be your) Teddy Bear by Elvis Presley

Wheels on fire

So, where are we on the sensory relapse?

Hug - all gone. Thank fudge.

Wet clothes feeling - mostly gone. Huzzah.

Sandpaper hands - stubbornly remaining. Sigh.

But, as Meatloaf once wisely trilled, two out of three ain't bad, so probably a suitable time to celebrate.

And because I don't like making life easy for myself, I decided to mark the occasion with a bike ride.

Now this may not have seemed wise for a variety of reasons: crap balance, ropey grip, general tiredness, non-MS-related clumsyness.

But I felt the need to do something to recognise the almost-out-the-end of the relapse state, so a bike ride it was.

Off we trooped as a family to a nearby (and mostly flat) country park and saddled up.

My word, what a joy it was. I balanced, I whizzed through puddles, I didn't have to think about anything except peddling and smiling.

The absolute best part was trusting my legs to be able to get me up a (very) small hill and then freewheeling my way down the other side, laughing like a small child.

It was completely exhilarating and made me proud, post relapse, of what my body can do and how my mind has dealt with it.

:: Wheels on fire by Julie Driscoll, Brian Auger and The Trinity

Fix me now

We combined my work trip to London last week with a short family break.

This was ideal as it gave me time to rest and recuperate in a hotel after my meetings while also offering hubby and 10-year-old the chance to explore.

Our daughter loves trips to the capital, she is particularly keen on the underground and the excitement of being somewhere so busy and diverse.

In fact she even declared over dinner on the first night that what she likes the most about London is "all the cultures and languages."

Wise words I think, especially as we're living in a time of such division.

I didn't have to work the day we arrived so we took ourselves off to the Science Museum, it wasn't a place we'd been to before and after spending four-and-a-half fascinated hours there, I really couldn't understand why.

It's an astonishing place and this summer there is a spectacular space-themed exhibition. Should you ever want to know what astronauts eat, what they do to train and where they poop (gigantic space nappies apparently) then this is the place for you.

But just along from the space extravaganza were two other fascinating displays - one looking at the advancement of technology from the 1700s onwards and the other looking at the body, brain and self.

As it happened, I found MS in both of these exhibits. From one of the first MRI machines, a very small and clunky-looking contraption dating from 1983, to the advancements in ways science has started to rebuild and repair nerves.

And from the Science Museum to the science of MS, finding treatments to repair myelin is becoming the holy grail of multiple sclerosis research.

Its importance is explained by Professor Anna Williams in the MS Society's summer edition of research matters:

"Without myelin, the fragile nerve fibres are left exposed and unable to send signals clearly. Our brains have the incredible ability to repair myelin. but with age and repeated attacks, this stops working so well. And as MS progresses, disability accumulates because nerves are permanently lost.

"Research has shown that people who have higher levels of myelin repair see a reduction in the progression of their MS. So if we can repair myelin, we should be able to reduce the number of nerves that people lose, and slow or even stop disability progression."

At present, myelin repair has not been tested on humans but clinical trials are in the process of being designed, organised and funded.

The hope is that myelin repair treatments will become a reality for people with MS over the coming years.

Wouldn't that be great? Wouldn't it be lovely to see a display in the Science Museum in the not too distant future explaining how we discovered ways to repair our damage?

Aberdeen Magnetic Resonance Imager from 1983. Science Museum.

:: Fix me now by Garbage