Johanna; triathalons and M.S.

Johanna; triathalons and M.S.


So what can I tell you about Jo?
She has a very calm presence. I sometimes wonder if that's an artefact of illnesses that sap energy - we tend not to move as much, and people can often interpret that as being as relaxed and confident. But I suspect she's always been like that, because she works for the fire service, and I really can't imagine anyone ever coping with that sort of job if they had any predisposition to panic.

It turns out the fire service have possibly the oldest rules on what to wear in the UK, barring our legal people's silly wigs, maybe.  So in the day job, it's white or beige, you have to wear a skirt but no seams on your hosiery, and there are only some very, very sensible shoes you're allowed. 

Outside of that, she's been a triathalon runner and had elbow-length flowing red locks. 

Jo is living with Multiple Sclerosis. There's some debate about if MS is primarily auto-immune or neurodegenerative, but whatever way you cut it it's bothersome. Here's the extremely simplified explanation.

Your body works by transmitting tiny electrical impulses around the nerve system; send that signal, this muscle moves, trigger this nerve, you feel an itch on your foot, that sort of thing. Nerves are a bit like electrical wires; they have an insulating layer, called a myelin sheath. In some people, their immune system attacks this seemingly at random. Where the myelin is gone, that nerve either works badly or not at all.

This means the effects of MS are erratic and difficult to spot. The damage is only visible with fairly sophisticated technology and we're not all that great at understanding nerve stuff so . . . MS is still very big unknown. Most people get relapse-remitting MS, and recover somewhat in between episodes. A small percentage of people get progressive MS, in which the damage accumulates until the complications are fatal. Clearly, this is not ideal.

Jo's doctors aren't sure why she is still able to move as her myelin is very depleted, and she's tried chemotherapy and a stem cell transplant in Mexico (it's not available in the UK), which is why she doesn't have the red hair in our images. She wanted to do the shoot to get some glamour in to remember on days when it won't be possible.

Wondering what you can do to make a difference?  Here are two things.

- Please do not assume that everyone who walks wobbly is drunk! Seriously, so many illnesses cause issues with walking and it gets really frustrating having to explain it to every casual critic, or when getting refused service.

- Help us find new ways to affix stockings. Hands stop working as often as walking does - everything from arthritis to Raynaud's can make fingers behave badly (stop sniggering at the back there), so we're looking for different clips, fasteners and ideas. Currently, I'm waiting for a day when my differently ill body can experiment with magnets, but anyone who can figure out something that means we can get as much use as possible out of expensive stockings bought when sliding a grip into a hook possible is definitely on the list for a present!

If you want to know more about MS, the MS Societies website is here. If you want to tell me I've mucked up the explanation, have an innovative idea for stockings,  or want to chat about anything that came up here, pop it in the comments!

You can also find a discussion on facebook here.