Why I’m Buying A New Walking Stick (When I Don’t Use One Every Day)

I bought my first (and currently, only) walking stick a month or two before I turned 30. It was amid the first relapse since my diagnosis – one I’d been waiting for and when it arrived, scared the shit out of me.

Half of my body suddenly felt numb, like it had disappeared. At my insistence, as a terrified novice, I was prescribed a dose of steroids (not a course of action I’d necessarily push for in future unless absolutely necessary) which left me weak as a kitten and unable to walk far without getting tired and floppy, taking the arm of whoever I was with.

My dad suggested buying a stick. My parents are wonderful, supportive humans, and both being from a medical background, they lean toward practical ‘solutions’. I was pretty resistant.  A lot of wailing ‘but I’m not even 30 how can I  need a walking stick?!’. Dad argued that it was temporary, like using crutches when you have a broken leg, and that if I needed to hang off an arm, a stick would probably be sensible.

So we bought a folding stick. There were a range of colours and styles available at the chemist shop we bought it from but I opted for the basic, black and chrome. The one that looks temporary, or NHS issue. I chose it because I didn’t want it. I didn’t want it to advertise that I am ill.

I don’t use it all the time – thankfully my legs recovered fully from the relapse and worked normally again after a month or so. I use it from time to time when I feel wobbly – my balance is very hit and miss and I often experience ‘jelly legs’ where I feel like my knees might buckle and my calves give way. Mostly though, I keep it in my bag for confidence. To know it’s there when I need it makes me a bit less afraid of a repeat episode; a crutch and a signal.

As the year following my relapse has progressed, I have become quite fond of my stick. Where I’ve used it, I’ve been strengthened by the response from the people around me. The more space, patience and consideration I have received from others, the more I have been able to buy into the idea that I deserve it and that it’s ok to need it. Testing out my stick, which I initially hated using, has turned out to be a massive catalyst for accepting my disease and being proactive with self care.

And so, I’ve been looking into buying a new stick. One which I can be proud of, to signal my acceptance and to make it mine.

EDIT Jan 2016: Here she is! http://www.topandderby.com/collections/the-chatfield

 

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Fuck MS #638

Today is my four year MS diagnosis anniversary. To celebrate, I have cooked us a dinner of things beginning with M and S. We have sausages and mash with spinach. And melon, M&Ms, Skittles, Maltesers and Magic Stars for dessert. Bought from M&S.

Fuck MS.

Why Having (RR) MS Can Be A Bit Like Being Burgled

I remember an advert on TV a few years ago – I think it was an insurance advert. The gist of it was that while you can have your stolen belongings replaced after a burglary, you can still be left with a sense of vulnerability and fear. The insurance company promised to help with that too, by recommending security improvements to avoid future break-ins and make customers feel safe again.

I was trying to explain to a friend how I feel between relapses when this advert sprung to mind, and it just fit.

In 2007, four years before I had a name for it, I developed a tingling sensation in my legs and back whenever I looked down. It lasted about a month, and then disappeared. It didn’t hurt and wasn’t massively disruptive, so I didn’t think much of it until it returned the following year for another month. My GP prescribed anti-inflammatories and a physio referral to resolve what was thought to be a trapped nerve in my neck. Sure enough, it vanished, but when it returned the following year I was finally sent first to the hospital plastic surgery dept. (where they deal with carpal tunnel amongst other things) and later, neurology, where after undertaking various tests and scans, it was determined that I was experiencing symptoms of MS.

I’m generally doing OK these days. I have more regularly recurring periods of weak legs and numb hands, tingles when I look down, but I’m in roughly the same shape as I was in 2007. The difference between those four years before my diagnosis and the four that have followed is that before I knew what was happening, I wasn’t afraid. At that time, and at that age, I had no reason to doubt my invincibility. It felt weird, but it didn’t hurt and it went away, and I could forget about it until it came back.

Once I had a name for these sensations, I had a possible trajectory. Obviously, I don’t really know what’s coming and nor does my neurologist, but I have an idea. The future has a frame.

The first relapse I had after my diagnosis knocked me for six. I had to know that it’d come, but I hadn’t been waiting for it. It had a greater impact than previous flare-ups, and took away my legs for a time, parts of my hands and mouth felt like they’d disappeared. Not numb exactly, but like they just weren’t there at all. Gradually, they were returned to me.

What was left behind after this ‘burglary’ though was massive unease, fear, dread and anxiety. Now I know what it feels like to have something taken, and know also that it’s very likely I’ll have my belongings taken again, I wait by the window.

As with a real burglary, I can take precautions. Get better locks and security cameras, make my house less inviting to intruders in future- that is, take care of my mind and body, eat and sleep well – but every floorboard creak or rattle from the attic sets my heart racing.