(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

That's what we can do

I haven't mentioned my work for a little while. I think it's because I've been too taken up with my recent/lingering relapse and all its varying sensory delights.

But as I am (hopefully) coming out the other end of this one - hug has gone, sensation is almost back to what passes for normal for me, I just need my hands to start fully cooperating again - it's time for a work update.

I am currently self-employed and am working on two different projects for two different organisations. They are both very interesting.

It's not been easy carrying on working during the relapse. If I were an employee I would most likely have taken some sick leave, but I work for myself so if I don't work I don't get paid.*

Not ideal for someone with a chronic illness obviously and something I'm going to have to really consider as and when these projects come to an end.

But today I am working. I am travelling down to London for a few days for one organisation, having been at my other one on Monday. The juggling aspect of this appeals to my brain and makes me feel like I'm doing my bit to keep it active and engaged.

But the effort is taken to keep on going during this relapse has been incredible and looking back now, I'm not quite sure how I've managed it.

I think it's because I'm a) ludicrously proud, b) ridiculously stubborn and c) it's my choice - something which is really, really important when living with a disease which can strip you of them.

Work is important to me and I'm lucky that I'm currently in a position with my health where I can still choose to do it. I am aware that this may not always be the case.

I know a number of people with MS who are not currently working and who warn me that I shouldn't I tie my self-esteem up with my job.

They are absolutely right, of course and there have been times over the past few weeks where I have really struggled with what I've chosen to do.

But I've gritted my teeth and - against all reason and good sense - carried on. Because it's my choice and I'm just not ready to choose to stop quite yet.

:: That's what we can do by Deacon Blue

*I could apply for Employment Support Allowance, but the thought of the forms just makes me want to cry.