Tag Archives: numbness

MS + T + W + MA = Stress?

new to MST = Teenager and W = work – an impossible equation.

The MA is just the wildcard.

MS = LIFE x 1000.

I’ve been exploring the theme of MS and radical life changes recently, and a good few of you have got in touch with your own incredible stories, both personally and through the blog.

The overriding theme is, ‘ok, I’ve got MS, but I changed my life for the better, and decided to do what I always wanted to, sticks/wheelchair/nerve pain or not’.

Of course, walking with a stick or waking up to numb limbs doesn’t tend to feature heavily in our good-news scenarios but the fact that a large number of us appear to live more fulfilling lives puts it all into perspective. Yet it can take a while to get used to.

Like me. On Monday, we had our book club Christmas party. Readers, I had to take my stick.

Awkward. I had unwittingly marked myself as ‘other’, even though I knew I could grasp the tables and chairs and stagger my way round the room without it, the stick was a solace and it helped. I am proud and didn’t want to look like a toddler taking their first steps or face the inevitable whispers of, ‘has she? Too much red? She always says she dances on tables when she drinks red’.

Yet the stick also rendered me speechless and quiet. And anyone who knows me will know that’s pretty unusual.

Anyway, Monday taught me a lesson. I am still the same person, with or without a stick for balance. Perhaps I should fashion my own one from driftwood, imbuing it with magical powers, terrifying the neighbourhood children. I already have the black cat, so why not?

What I’m trying to say is, what does it look like like to have MS? For me, and people like me? The few memories of my father are distorted and shaped by familial prompting. All I remember is that in his final days, he lost his power of speech and moved from his wheelchair to his bed. And he looks odd in the few photographs I have, whereas I appear to be happily sucking my thumb on the grass in the backyard.

So, what am I? Yup, I got his eyes, his chin, his dismissive sense of humour. And for good measure, the MS.

Who are you with MS?

Are you still denying its existence or have you accepted it and understood that you are not MS. It does not have you, unless you allow it.

For those of you with more advanced forms than I, I apologise. The aim of this post is to inspire us who are still at the beginning; if we give up now, who’s going to care?

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Numb And Number

Numb and NumberWe certainly know how to enjoy ourselves in our little household.

Yesterday, after some lovely chicken pie, my big toe went completely numb (I’m not saying the two are connected, but we’re having lamb next Sunday).

Unable to keep this to myself, I nimbly/numbly stumbled into the living room and told The Teenager.

‘I can’t feel my big toe!! See (flick) nothing! Go on, you try.’

‘Mum. You’re weird. If you weren’t my mum, you’d be the kind of person you tell me not to talk to.’

‘Look, try this (finds a drawing pin), you be the neurologist. Just press it on to my toe.’

‘*sigh* Did you feel that?’

‘No! Weird, huh?’

‘Feel that?’

‘That was my ankle. It’s fine. Give me that.’

I’m no stranger to numbness. One of my first symptoms was completely numb feet, making walking a painful and tedious exercise in tentative negotiation, often resulting in ‘hilarious’ trips, foot drop making matters even worse. I was on first-name terms with every pavement in the vicinity.

Since my last relapse, things have calmed down a bit, although my feet still constantly tingle and buzz. In fact, I can’t remember the last time they didn’t. If I could go back to that very last day of ‘normal’ feet, I’d wear 4 6 8 inch Jimmy Choos for 24 hours and dance til dawn. Then I’d box-frame them (using my glue gun, natch) and hang them on the wall.

Numbness is an odd sensation, and to other people it doesn’t even sound like a troubling symptom, but it sure makes life…..interesting. If I hold a book for too long, numb fingers. Waking up in the morning, numb arms. Sit for too long, numb legs. No wonder The Teenager calls me Numb Numb.

But as with most of MS’s weird and wonderful box of tricks, it’s surprising how much I’m used to it now, especially dropping things. I am a past master.

Like the other day when I was in a smart cafe having breakfast. You know, those places that don’t just put your beans on the plate, they serve them in dinky little chrome buckets (why?). You can see where I’m going with this. The thing flew out my hands, I caught it, smiled with relief, then it jumped back out my very loose grip and clattered across the floor. Raised eyebrows from the next table.

The waitress rushed over, ‘Is everything ok?’ It was so tempting to say, ‘pull up a chair love, this may take some time….’

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Getting On My Nerves…

special offerIt’s been a stressful week and stress plus MS equals a spike in symptoms.

I have tried everything to stay serene and in control – deep breathing, chocolate, mindfulness, two episodes of Mad Men.

The deep breathing made me feel a bit silly, the chocolate nudged the scales up,  The ‘Power of Now’ was the ‘Power of Not-Right-Now’ and as for Mad Men, well, two episodes are never enough.

For me, it’s mostly an increase in nerve pain. Ever tried describing nerve pain to the uninitiated? Burning, tingling, numbness, crawling, aching doesn’t even begin to cover it.

Tingling sounds delightful, numbness sounds painless, crawling sounds weird and we all ache, don’t we? Just like we all get tired.

It’s been driving me round the twist all week and as always with MS, it doesn’t come alone. It’s the great MS special offer – ‘get one symptom, get three free’. So, as well as the nerve pain, there’s the fatigue, the wonkier walking, the hands that’d be better suited to a Greek taverna. Smashed plates? Yup, as well as my last proper grown up wine glass and yet another chip in yet another bowl.

I lay awake most of last night listening to Izzy miaow loudly. For a tiny cat, she’s got a huge set of lungs. The Teenager got up and shut his door and I was left to ponder the cobwebs on the ceiling and listen to a group of drunk woman sing ‘Simply The Best’ outside my window at 1.30 am. The pain was excruciating and made even more unbearable as my legs started to jerk and twitch.

I wasn’t sure if it was like being possessed by a malevolent spirit (The Exorcist sprang to mind in the wee small hours) or being stretched on a rack. Only problem was, I couldn’t get up and go downstairs as new cat Izzy would think it was perfectly normal to sit in the kitchen listening to the shipping forecast before sunrise. I was trapped and the women outside moved on to a Tom Jones medley, a tortuous backdrop to insane pain.

Action plan for the weekend – rescue ‘The Power of Now’ book from the corner I flung it in to, lie on the sofa with a huge bag of crisps and a relaxing face-pack on and chant, ‘this too shall pass’ over and over and over again…

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Fun In The Bathroom

The snowpocalypse has meant I have spent an awful lot of time at home, which has given me an awful lot of time to stare at the mould creeping along my bathroom walls. Finally, I have had enough.

In the old days, pre-MS, I could paint the bathroom in half a day, whizzing around barely stopping for a breather. This time, I will need to approach the project with caution, precision and a battle plan.

So, the other day, I began. After trudging up to the doctor’s for my blood test, I trudged back to the paint shop. I had done my research, and I knew I needed an anti-mould solution, an interior seal damp and finally, paint, so I asked the guy for help finding them.

‘But why do you need all that stuff?’ he asked. Well, the bathroom is exploding with mould, it’s horrible. ‘It can’t be that bad, surely, how old is your house?’ Oh dear. Obviously women shouldn’t know anything about painting or preparing surfaces, yada yada yada. I gave him my best steely look, gritted my teeth and informed him the house is 160 years old, the window sills are over a foot thick and if the damp has gone in that far, I’ve got a serious problem.

He gave in, but got the last laugh, thrusting a couple of paint brochures into my hand before I left, saying ‘here, take these, they’ve got some lovely pretty colours in there.’ I stomped home in  a mood. I don’t care if I paint the bathroom in ‘ocean ripple’, ‘chic shadow’ or ‘urban obsession’, as long as it gets done. If I had my way, I’d paint it all black so I’d never have to see the mould again.

Anyway, I am all set to go, but nothing has been done. Three reasons: my arms get tingly and numb if I hold them up for too long, my balance won’t be the best on step-ladders and I worry about suddenly get tired half-way through.  The guy in the shop didn’t quite succeed in making me feel completely stupid and girly, but MS certainly has….

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You Can Call Me Al

I’m getting used to my new job as a builder’s mate, but am relieved it’s only for a few months. I like my morning latte at McDonalds, nodding to other builders who look at me with sympathy/amusement/shock. I like being a passenger in the van, bumping along the roads.

We head to Spar before work and I spend five minutes dithering between a pork pie, a Scotch egg, a grotty sausage roll or huge white-bread sandwiches for my lunch. The other day one of the assistants looked up as we entered the store and said a cheery, ‘Morning chaps!’ Huh? What is it with everyone thinking I’m a bloke?

The lovely eccentric woman we are working for right now is still calling me ‘Alan’ and it’s my new builder’s nickname, but at least it’s better than ‘Half-Shift’. Something rather disturbing happened last time I saw her though. She came upstairs holding a book out, saying, ‘I think you might enjoy this, here, take it’ and she thrust it into my hands. I turned it over. Susan Boyle’s autobiography, ‘The Woman I Was Born To Be’. I didn’t know whether to laugh or cry.

Gender-confusion to one side, I think I will enjoy myself until my proper job starts. I’m loving the fresh air, the fact that every day there is something different to do and it’s good to learn new skills. After nine weeks of working from home, it’s a blast to have company again.

MS is always hovering in the background though, like a bad fairy at a christening. One day, it could be my balance playing up, the next my hands might be tingling. We just work round it. It’s part of me, there’s nothing I can do about it, so there’s no point worrying. For now. One thing I have noticed is that my confidence is increasing, after taking a severe bashing last year. This more than makes up for the black dust up my nose, the bits of plaster in my ears and being mistaken for a man…

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