Entry 4) Climbing mountains and stumbling down stairs

“MS is like a box full of chocolate covered sprouts!”

2015 arrived and the realisation that my life had completely changed was beginning to dawn on me. MS had not only left my career in tatters but was playing havoc with my legs and energy levels. In short, I had a mountain to climb. Hold that thought a mo..

Meantime, I had to buck up and earn some sort of living for myself. I wasn’t ready to look at benefits and such things at this stage – that would be the ultimate indignity in my world. Besides, I CAN DO THIS! I hadn’t yet established what I could cope with either physically or mentally and I was in blissful denial that MS would have any sort of long term impact on my career. Rather than inflict myself and all the unknowns of my condition on someone else, I decided to set up on my own as a retail consultant. I had the skills and plenty of experience so it seemed like a logical step, for now anyway. Thankfully, my first client was someone I knew and I got my first six-month contract almost immediately. Excellent! I set about putting a new shop together for him and thoroughly enjoyed myself. This was going to be ace!

My body however just didn’t feel right. My legs felt really odd, like they were someone else’s, and the pain and spasms at night were disconcerting. I mentioned it to my nurse during my infusion one day. I asked her ‘Just tell me straight, are my legs ever going to feel normal again?’ She knew I wasn’t one for fluffy responses and simply replied ‘I’m sorry Jo but no, it’s extremely unlikely’. Fine, I’d asked for it straight. I thanked her for her honesty and I meant it. My MS nurses are angels and I wouldn’t doubt them for a minute.

After she left the ward, hot, fat tears rolled down my cheeks and I wept in silence while the drugs dripped into my veins. I had already second guessed the answer to my question but I wasn’t prepared, not in the slightest. I had been enjoying clinging to the warm, fuzzy feeling of hope. Goodbye old legs, and in the words of the late, great Sir Terry Wogan, thank you for being my friends. I actually grieved for the rest of the day.

I got back home, pulled on my big girl pants and drank a large glass of Pinot. Bollocks to this. I have literally no idea if or when my legs might pack up and leave me for a sunnier life so I’d better get on and get walking before it’s too late. It was at that moment I decided I was going climb Mount Snowdon. The next evening, I gathered together a group of mates and told them the good news. They would be my support team and we would do this in May 2015 to raise funds for the MS Trust. Game on!!

I trained (ie: went on lots of long walks with my husband) over the following months. Some walks went well, others were, frankly, bloody painful and extremely hard work. I began fundraising and the response really spurred me on. By the time ‘Ascension Day’ had arrived, we had raised just shy of £4000! Blimey, I’d better make it to the top or I’ll look like a right berk!

In case you were wondering, I did make it to the top. A full six hours of hiking followed by a massive dinner, lots of celebratory drinks and a handful of painkillers. I felt fabulous! First mountain conquered. JO: 1, MS: NIL. Take that!

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A side note on Shonky Leg Syndrome..

It’s ironic really. For the first 40 years of my life I hated my legs. They never looked right in my opinion – too white, fat knees, wrong shape. I was embarrassed by them for reasons only of pure vanity and consequently, rarely got them out in public. How shallow was I? But that’s the only reason I hated them. They worked great and felt fine as far as I can remember – I certainly had no problem walking for miles or standing on them hour after hour, day after day. The way my legs ‘felt’ never featured in my life. They were just there and they did what legs do.

When MS rather rudely barged its way into my life uninvited, the little bugger thought it would be hilarious to run off with my perfectly adequate pins. Now I wouldn’t have minded if they’d been replaced with the pair of perfectly tanned, shapely ones that I’d always wanted but oh no. MS doesn’t do nice things. Instead, I get a pair of someone else’s legs, every flipping day. Brilliant. What was it Forrest Gump said? “Life is like a box of chocolates, you never know what you’re gonna get”. Well if that’s the case, here’s what I say: ‘MS is like a box full of chocolate covered sprouts; you always know that whatever you get next is going to be horrid!’

This has been the case for nearly three years now and frankly, it’s getting a little tedious. Shonky Leg Syndrome, as I like to call it, is difficult to explain as it’s not always outwardly visible but I’ll give it my best shot.

Imagine waking up every morning with a dead, heavy, tingly sensation in your legs. You lie there and wonder if they will take your weight when you go to stand up. The sensation is slightly different every day so you’re never quite sure what might happen next. Eventually, you pluck up the courage to swing them onto the floor and stand. Yep, they take the weight. Good. That’s step one taken care of. You venture down the stairs, holding the bannister, just in case. It’ll be another hour or so before you trust them completely. You get in the shower, clinging to the grab rail, just in case. Warm water helps to bring some life to the dead feeling.

Different days bring different sensations. Sometimes they work almost normally, sometimes there are waves of pain traveling over them, sometimes you can hardly lift them at all because of the 20 ton weights your little MS monster has tied to them overnight. Sometimes the day goes without incident and sometimes a wave of pain so strong will shoot down one leg and completely take it out from under you. It’s nothing short of a lottery!

Come the evening, its nearly always an early night to rest my pins. No matter what I’ve done in the day they’re always tired and sore come the evening. Going to sleep is not a problem, staying asleep is a whole different ball game! Night time brings restless legs, pain and burning sensations in the feet and ankles – unless I take neuropathic pain killers, magic pills, they’re a real help.

To the spectator, most of all these goings on are completely invisible. Regardless of how my legs feel, largely I just get on with it. I can feel the pain, feel the sensations, feel the heavy weights attached to my ankles but it doesn’t always show. I have become a master of disguise! The flip side is that it can make you feel like a fraud. I might have climbed a mountain, walked my dog or been to the supermarket to do the weekly shop without anyone noticing my shonky legs. The difference is, while ‘normal’ people can carry on with their next task, I will need to have a sit down. Maybe even a lie down. Sometimes even a whole day on the sofa to get over such frivolous activities like housework or exercise!

A Christmas wish addressed to my legs: Come back my beautiful, white, reliable old friends – all is forgiven!

3 thoughts on “Entry 4) Climbing mountains and stumbling down stairs”

  1. Jo i hope your shonky legs kinda of behave this Christmas . You put my dodgy hips into prospective love and hugs Kris and a big wet sloppy kiss from Stanley xx

    Liked by 1 person

  2. Incredible Jo… you really hit it out of the park with that hike. I don’t know you but I’m proud for you… I’m a member of a support site for folks with fibromyalgia (MyFibroTeam)… I finally got my diagnosis last month followed by another for ankylosing spondylitis in time for Christmas after 2 years of wondering “wtf hit me?” (I still wonder btw but at least now it has a name) There are some among us on the site that have ms in addition to fibromyalgia (which usually comes accompanied by something(s) else) and I gather very strongly from them that just one condition alone is a deal breaker let alone several… So well done you, and thank you for another post of interest. Keep it up, all the best and happy new year.

    Liked by 2 people

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