Category Archives: Symptoms and Treatment

Mar 18 2014
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Symptoms and Treatment

Energy Overkill

exhaustedI seem to be in a remission of sorts.

Saying that, I still trip over my feet, the cat, cobwebs, etc. I still lurch in the shower, find shampoo bottles impossible to squeeze and hold onto walls in my house whilst pinballing round corners.

But – I have energy. Energy! An odd, highly intoxicating concept.

And typically for me, I am exploiting it to the max -who knows how long it will last? I could be unplugged within the next hour, tomorrow, next week, so boy, am I going to make the most of it.

The downside is, I crash and burn any time between 7 and 10pm, woken from my gentle slumbers on the sofa by The Teenager turning the light on in the fridge, ferreting around for stray yoghurts that escaped his first food-finding mission.

And when I say crash and burn, I mean it quite literally. I can be absorbed in a book, a TV programme, my diary and suddenly I feel my eyelids growing heavier, shutting up shop for the day. Just when I think, ‘must stand up, must move away from the sofa, now, this minute’, blam. Sudden oblivion.

I am heading for a fall, stumbling on the knife-edge. Something’s got to give, I just don’t know when. I’m a gambler. I make pacts with MS, who has never been the fairest of players. Why am I doing this? I have been swept along by The Energy, but it has to be repaid in some form.

I make mistakes. I think I can do more than I should. Which is why my right arm is bandaged up and I have sprained my ankle. I am covered in bruises from moving quicker than I really should. I’m hobbling around, mentally exhausted but still physically moving on.

I reconcile this danger with the sheer pleasure of being released from the daily grind of MS. Or have I just got used to it? Thinking about it, even though I believe I have energy now, it’s nothing compared to how I used to feel, pre-MS.

Inwardly, I am tired. Externally, I am pushing myself far too far. When will I crash? Probably sooner than later.

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Feb 19 2014
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Symptoms and Treatment

A Double Diagnosis?

HypochondriacAs if having the label of MS slapped on you isn’t bad enough, there’s another sneaky diagnosis that creeps up alongside it.

That of the well-meaning hypochondriac.

I never really worried about my health in those halcyon pre-MS days.

My body did what I told it to do, when I told it to. I had the usual sniffles and aches, just like anyone else. I even used to boast how strong my immune system must be as I rarely took a sick-day off work.

How times have changed. It probably all started after the first Official Relapse. I was urged to keep a symptom diary, noting down anything unusual or out of the ordinary. For the first time in my life, I was closely observing my body. Every single teeny-weeny symptom was duly logged and dated.

At the following appointment with the neurologist, he asked me about any recent symptoms. I took a deep breath and read through my list. Ten minutes later, with the neurologist no doubt planning his grocery list or clocking the cracks in the ceiling, I finished with ‘oh, and my nose sometimes twitches AND my eyelid does too. Weird, huh?’

In short, am I well on my way to becoming a full-blown hypochondriac? Not that I pester the medical staff or take up endless appointments. I am reluctant to ‘bother anyone’. I keep my anxiety to myself. But it’s awfully tiring. Or is that the MS fatigue?

It’s very difficult to differentiate between MS and non-MS symptoms. Some non-MS illnesses are made worse by MS, or at least, not helped. And am I more tired than usual because of work or because of MS? I could tie myself up in knots, if I had the energy.

I think the problem is that a lot of us with MS live with the knowledge that we are only as good as our last relapse. We scan the horizon, waiting for the next bunch of symptoms to ride over the hill.

And speaking of over the hill, I probably need to remind myself that I have indeed reached the milestone age of 40. The age when bits don’t work quite as well as they should. When we nod off in front of the telly. When we get creaky joints.

Must dash (stumble). The tip of my finger has just gone numb, perhaps I’d better jot it down…..

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Feb 09 2014
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Symptoms and Treatment

Dodging The Bullet

dodging the bulletWell it seems the draggy, schleppy foot is here to stay for a little while longer.

It’s surprising how quickly I’ve got used to it, the exaggerated lifting of the offending foot. Apart from The Teenager mimicking the Kennedy Space Center voice – ‘One giant leap for woman….’

Anyway, I’ve been thinking. It could be an old symptom coming back in a sneaky, evolved form, or it could be a new symptom. I could tie myself up in knots about it. Like most of us with MS, I spend my days inwardly saying, ‘there goes the foot drop, oh, that’ll be the heat intolerance and yup, some loss of balance for good measure.’ And, ‘can I go to sleep now?’

Maybe I spend so much time in fear of a new symptom, a relapse, a further loss, that I forget to concentrate on the here and now. The MS symptoms will go their own way regardless. The way my mind goes is of my own choosing. Over that, at least, I have a modicum of control.

So maybe I should stop worrying about dodging the bullet. If it happens, it happens. I was utterly paralysed by fear last week. And what good did it do me? I came down with a stomach bug.

In a way, it was a relief to concentrate on a non-MS symptom for once. All thoughts of MS were pushed out my mind as I put my much-diminished energy in to becoming better. As quickly as possible. I crawled back into bed, the monotony of it only relieved by my friend delivering me all the Saturday newspapers, a McDonalds burger and Coke (I know, I know, but it helped) and a big bag of chocolate buttons.

If this last week has taught me anything at all, it is that MS is part of who I am. The more I try to side-swerve and ignore what is happening, the more I suffer when a symptom comes to the fore. It’s not about giving in, but accepting that it happens.

The meltdown I went through was probably far worse than the symptom itself. And what does that show me? It is my mind, not my body that is out of control. A sobering thought.

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Feb 07 2014
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Symptoms and Treatment

Dragging My Feet….

don't panicYou know when you wake up with a brand spanking-new MS symptom?

That heart-stopping moment when all your worst fears come crashing in on you?

Yup. This happened last week. A normal morning – coffee, cat, catch-up with paperwork, countdown to waking The Teenager.

Except that morning was different. My foot refused to play fair. It gave up the ghost, schlepping behind me like a stroppy Teenager (and boy, do I have experience of that).

Panic rose and I quelled it. The next day, same thing. And the next. A new symptom. Probably every person with MS’s worst nightmare.

I decided to beat it at it’s own game, determinedly lifting the naughty foot with every step. Only problem was, I looked ever so slightly odd. Exaggerated. Like I was walking in slow motion to the ‘Chariots of Fire’ theme tune.

I ran it past the MS nurse (the problem, not my foot) but declined an appointment. ‘I’ll be fine!’. I ran it past the chiropractor who urged me to call the MS team. ‘I’ll be fine!’ I put it out my mind. But it stayed and I dragged my foot round the house. Finally, I took the offered appointment.

What’s worse? Being told it may be a relapse or it may not be a relapse? It doesn’t really matter either way, I won’t take any more steroids. I can’t bear the thought of waking up at 2am and having a strong compulsion to dust all the lightbulbs and clean the skirting boards, such is the bizarre energy those tiny tablets give me. Plus they destroy taste buds. And I pack on the weight no matter how many edamame beans I eat.

So I am in a kind of weird limbo. I worry that the endless relapses have found a sneaky way through the Campath treatment I had. I worry about my mobility – the defining point of being accepted as ‘relatively normal’ within societal boundaries.

Above all, my dodgy, annoying, schlepping foot has dominated the last week. I am panicking. Ever so slightly.

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Feb 05 2014
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Symptoms and Treatment

If You’re Happy And You Know It, Shake Your Meds….

Nurse RatchetI had my annual medication review at my doctor’s yesterday.

I survived the bloke who coughed all over me in the waiting room as he read a leaflet about the flu jab pinned to the notice board above my head (no hankie, yuk).

And the toddler who toddled in my direction, licking snot from his nose in tandem with every step, eyes fixed eerily in my direction,a mangled teddy in his hands.

The doctor was lovely. We rearranged my prescription, I waited for it to be printed off and I left,relieved that it would be another year til I was there again.

Buoyed up with the ‘how easy was that?’ sensation, I parked outside the chemist to pick up my repeat prescription.

Big mistake. Huuuuuuge mistake.

The chemist is tiny. Opening the door, I counted eight people standing around waiting. I clutched my prescription, desperately seeking someone who would take it from me. Finally, a woman made her way through the crowd, plucked it from my hand and peered at it.

‘Oh! A change of prescription. Let’s see.’

(I’m slowly slinking backwards into the wall of decongestants)

‘Address?’

I gave it. And my date birth. And my favourite TV shows.

‘Ah. I see you’re still on the BLADDER medication. Yes?’

(the assembled congregation are leaning forward, eagerly anticipating my answer) ‘Um, yup, if that’s ok, thank you very much.’

‘And the…let me see… NERVES?’

(wilts in corner, dying ever so slightly). ‘Not nerves, neuropathic (whispers) MS’.

‘AHHHHH.’

(she peers over her glasses, looks me up and down, as do the assembled crowd).

‘Now. What about THIS one?’

‘Um.’

I scribble my signature on the repeat prescription and joke with the woman next to me, ‘haha, being ill is like a full-time job.’ Lol.

She stared at me, devoid of any compassion, no doubt thinking back to the Benefits Row special live on Channel 5 the previous night.

I turned and absorbed myself in the Peppa Pig display, wondering if I should buy some bubble bath, just to look….normal.

Finally, I was rescued. A bag of medicine was thrust into my hands.

I fled.

I love chemists. They helped me through The Nit Crisis (not me, The Teenager, when he was The Child) . They were there when I needed cough medicine. But confidentiality?

Well. My name is Stumbling, and I take bladder medication…

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