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.

Advertisements

On Energy

My nickname is Squirrel. I’m known among my friends for scurrying around, being busy and excitable. This way of being is woven into my sense of identity.

I don’t remember when it started, but over the past few years I’ve realised my energy levels aren’t actually limitless. Where I used to bounce back after a busy weekend or a late night, it can now take several days to shake off the exhaustion. A stressful day at work can have me dozing off at 7pm and I’ve been regularly avoiding nights out as I know that come 10 o’clock I’ll be wishing I was at home and in bed.

My partner introduced me to the Spoon Theory last year, which has given me a framework and a language with which to manage – or ration – my energy. It’s useful, to a degree. Partly I struggle with being sensible with my energy as I don’t want to have to even think about it. I’m 31, not an old lady. I am angry that I can’t keep up with my friends.

I was thinking about this earlier this week and glanced over at my phone, which was plugged in to charge while I was at work. And then it hit me.  Have I become complacent? There is never an excuse for a dead phone battery as I can always recharge it – I am rarely far from a plug socket in this city. I have taught myself that I can use my phone as much as I like, and if it runs low I can simply plug it in. I do not ration its use to ensure it is available on my way home or in case of emergency. This attitude isn’t restricted to my phone – I live in a bubble of abundance. When I am hungry, I eat. When I need money, I visit an ATM. Resources are readily available to me, generally as and when I need them.

Is it any wonder then, that I have difficulty accepting that my own body can’t keep up with the demands I place on it? Why I find it frustrating that I can’t just have more energy when I need it?

I was still busy kicking myself about this when a second thought occurred. Perhaps I SHOULD treat my body like my phone. I don’t want a dead battery and because of this, I keep it charged up. It’s not magic that keeps my phone charged – it’s planning ahead.

So perhaps it’s not about rationing exactly, but about taking proactive steps to keep my battery charged up.  Regular breaks, meditation, quality rest, eating well and sleeping well are all good ways to keep me going. I don’t have to stop being a squirrel. It’s who I am after all.

What They Don’t Teach You At MS School

The headline stuff is catered for. Anyone with access to Wikipedia can find out about tingling and muscle weakness, wobbly legs and concentration problems, the available medications and the likely prognosis.

The fine print comes along later, in the form of lessons in our own bodies, learned slowly and personally. This is the stuff you can’t be prepared for.

It hit me like a ton of bricks when a neurologist dropped the diagnosis on me. I returned to the office on auto pilot after my appointment, and was instructed to take the rest of the day off work, much of which I spent silently reciting the words ‘I’ve got MS’ over and over in my head but not really knowing what to do with the information. It’s four years later and I couldn’t have known I’d still feel a bit lost. I thought that once I understood what was going on, it’d get easier.

Here are a few ‘symptoms’ I didn’t see coming:

Hyper-awareness. I exhaust myself sometimes, with my watching, waiting. I didn’t anticipate the exhaustion that comes from being ever-vigilant, terrified, waiting for my experience to transform into that disease that spurs strangers into setting up fundraisers and sharing uplifting picture messages on Facebook. Hard times are supposed to make you appreciate the good times more, right? Only, I feel like I spend a good portion of the times my body functions well worrying about when and where and how it’ll turn on me again and what comes after that. I’m not saying I can’t enjoy life between relapses, but I can’t always.

Unentitlement (is that a word?). I certainly wasn’t expecting to buy a walking stick before my 30th birthday. But I also wasn’t expecting to have such an internal struggle about my right to take the disabled seat on the bus. I’ve been assured by friends and nurses alike that I am entitled, but I don’t feel it. I feel like an impostor. It’s easier when I have a stick as people around me have some proof of my problem, but without it I think I look like an able bodied jerk, denying a seat to someone who really needs it. I’ve started carrying my stick when I can manage without, so I can signal that I’m not ok, should I need to. I’ve only once been accused of misusing the disabled seat, and it was publicly humiliating and upsetting. But this ongoing struggle is all my own, questioning my own right and validity. I’m not always on my own side, which was a surprise when I realised.

Fear. The people I surround myself with are wonderful humans. I have (reluctantly) tested their love and patience on a number of occasions and found it rock solid each time. But it’s scary to consider that maybe the next time I am miserable and scared and wish I could be swallowed up by my duvet and don’t know how to cope, it might become too much for my partner. I worry about depression swooping in and taking away everything I have and love. And that is the scariest fucking thing in all of this.

It’s not all bad though.

As a result of the above, I’ve started taking my health and my mind and body seriously.  Noticing patterns (eg. overdoing it = floppy body) and giving myself a break when I can instead of pushing through it as I used to. I don’t always have to be the best, or do my best. A half arsed job is OK.  It really is.

I’ve also spent some concerted time and energy investigating my prejudices around disability. It’s been hard, uncovering horrible views I didn’t know I held and mis-truths I’d unquestioningly accepted over the years.

Ultimately, I hope that this desire to learn and understand more, and to educate myself in disability activism will continue to help me love myself and other people better.