Blitzkrieg

One of the things my brand new neurologist did for me when I met him earlier this year is confirm my diagnosis of restless legs syndrome (RLS). It’s something that I’ve been wondering about, on and off, pretty much since diagnosis, so it’s ‘nice’ to have it confirmed.

It’s not a symptom of MS, but there’s a higher incidence among MS patients than the general population.

In fact, what I assumed was leg cramps associated with the MS is actually RLS.

Where it has been an inconvenience before, it has suddenly decided to ramp things up a notch or two. Instead of an uncomfortable build-up of tension in a calf muscle followed by my leg clenching (bad enough), the build-up is leading to a muscle explosion. Don’t forget that, along with most others with the condition, this happens in the early hours of the morning.

It really impacts on my quality of life, and on Mrs Dave’s too when I wake her up with it.

Over the years, I’ve tried different meds (Gabapentin, Amitriptyline, Baclofen) to smooth it out but been flattened by the side effects instead. I ended up ditching Baclofen last year after increasing the dosage to a level that I really wasn’t comfortable with before the initially calmed legs started playing up again.

The last ditch attempt to do something about it came in the last week or so when I tried rotigotine patches that the neuro had suggested. At a higher dose they’re normally prescribed for Parkinsons patients, so they’re a pretty serious drug.

My word they worked!…

…they worked for three whole days. For three days I was restless leg free.

Bliss!

I mean, I woke up in the morning feeling nauseous and headachey as side-effects of the rotigotine, but that’s still heavenly compared to the daily blitzkrieg of RLS.

I could still feel that something wasn’t quite right; there was still a little bit of tension build-up, but not enough to cause distress or explode in a massive leg spasm, more like a stiff leg. But then, after sitting down yesterday evening to watch TV, it returned – bang! – out of the blue.

I wondered if it was a one-off and made sure to do some stretches before bed, but it came back with a vengeance at 2am.

It feels a little bit like I’ve kidnapped my neighbour’s barking dog and dumped it on the far side of town – just far enough to hear it at night in the distance – and now it’s found its way back home.

So I’m feeling quite glum.

My glumness has been compounded by restless leg message boards which state that it’s a common occurrence with this disease. It gets blasted with medication and then decides to go “f**k you! – I’ll show you what happens when you try to fight me” and then untangles its way out of the medicinal straightjacket you tried to put it in.

Restless legs can be so distracting that I’ve even had fantasies of blowing my head off with a shotgun when it flares up at the end of the day when I feel fatigued. Thank crikey for British gun laws as these aren’t light-hearted fantasies in any shape or form at all. The rotigotine prescription is pretty much the final straw medicine-wise, as far as I can see.

So what can I do?

Before the patches, I’d called in on Holland & Barrett, after a discussion with the MS nurse, to see if CBD oil supplements and magnesium tablets might help (as suggested by some on MS message boards). They didn’t, but the CBD oil has helped a lot with balance and leg strength, to the extent that I really notice if I forget to take it.

So I’ve been down to Holland & Barrett again and I’ve stocked up on Vitamin D, because it’s MS innit? And we all know of the potential link between MS and vitamin D, don’t we? I’ve also bought some B12 tablets, primarily because I haven’t eaten red meat for 30 years and I think I probably need to supplement my diet with this, anyway.

I’m not giving up on the rotigotine yet. I’m going to see out the course of this set of patches before making my mind up, but as I’ve been typing this my right calf muscle hasbeen jumping.

Mourning sickness

I recently heard that it’s a good idea to find something to mourn with MS. Something in life that MS has taken from you.

Maybe it’s a good night’s sleep, or the ability to run a long distance or that you’re no longer the party animal you once were. It could be all sorts of things…

Well, I realise this is going to sound bizarre, but I miss being sick.

What I mean by this, of course, is being sick in a conventional sense.

The sort where you spend all day under the covers and concentrate on not moving; where you can settle back into a snuggly bed after a mammoth hurling session* and feel momentarily better in a fuzzy, numb, dozy kind of way.

The sort where life is taken out of your hands for a bit: no work, no kids, no school run, no washing up, no trips to the supermarket, no responsibility at all except to get better. In fact, maybe your other half will pop in any minute now to tenderly mop your brow, plump up the pillows and ask if you need anything.

The other day, I had a smile listening to one of the younger members of staff in our office fretting about job references and the fact they’d had 11 days off sick over the previous 12 months.

Ahh! I suddenly came over all nostalgic for my 20s and how I used to sometimes ring in to work sick on a whim.

While some of these were sick days precipitated by a sudden and debilitating lack of strength involved in the lifting of a warm duvet, and some were the sick days that were self-inflicted by the social event from the night before, there were some actual genuine cases. One food poisoning incident sticks in the mind, particularly.

OK – I’m not seriously feeling nostalgic for food poisoning, but going back further to my school years for instance, I remember slow days of no energy and a gradual build up of nausea with some fondness. Feeling better again and rediscovering food has to be one of the best things in life. Opening a full fridge as a teenage boy on a mission to repopulate an empty stomach is like being handed a golden key to a mystical land of endless opportunity …and last night’s leftover pizza.

Gloriously, there was a day in my teens when I was horrified to find a face full of what I assumed was acne, only to be told by my mum that it looked very much like german measles, that I had a fever and there was no way – NO WAY – I was going to school that week.

I remember nodding sagely, “OK Mum, I’ll just head back to bed,” but with the internal me punching the air, shouting “YESSS!!!”

While I’m a big believer in taking sick days if you genuinely need them (and I know several people who will bravely soldier their way in to work to selflessly redistribute their germs), I haven’t had one for a couple of years. Not bad for someone with MS, eh?

I put my fortitude down to the fact that I’m more in tune with my body than I have ever been before. I am painfully aware that I’m no longer the invincible teen or twenty-something I once was. I am also hugely grateful for working for the sort of employer that lets you work from home if you’re feeling a little bit dodgy, or fatigued, or could do with stretching out in your joggers rather than getting into your work clobber and driving (in my case) the 10 miles to the office.

I also need to keep my sick leave in reserve so that I take it when I genuinely need it and not make a name for myself as someone with the sickness record of a 25 year old.

The drawback to this, of course, is that you might feel obliged to work even if you’re really not up to it. If you’re the cynical sort, it can seem a sneaky way for an employer to get you to work when you should really be taking it easy.

The last time I was off for any appreciable length of time for something non-MS related was when I had taken about 2 and a half hours to drive home in blizzard conditions. A journey that normally takes 15 to 20 minutes. I had successfully and narrowly avoided a collision on a steep downhill; I had dug the front wheels out of the snow when I came to an unavoidable standstill, and after some loud encouragement from a passing RAC driver, crawled (or rather, slid) the last stretch home only for me to suddenly develop something deeply unpleasant and gastric about 5 minutes after entering the front door.

Politely declining my snow-day elated daughters’ offers of a snowball fight, I rapidly ascended the staircase to spend the next couple of days yo-yoing between bed and bathroom. It was either all triggered by the stress of the journey home or my body putting it all on hold until I was somewhere safe.

Of course, when you’re that sick and you also have MS, yo-yoing to the bathroom sounds like an ideal you can’t achieve. It’s more a case of being as still as you possibly can because if you twitch a muscle, vertigo might kick in, and if vertigo kicks in, you have approximately 10 seconds to reach the place you need to get to, to do what you need to do. In those 10 seconds, your legs might turn jelly-like and behave like those of the newborn Bambi on ice as well. There’s no instant relief either – it’s all about trying to ignore the MS symptoms that will have crashed back in.

So I’m mourning being sick in a conventional way… or maybe I’m craving last night’s pizza.

If you have MS (or any other chronic illness or disability) let me know what things you are mourning in the comments .

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* not a session hurling mammoths.