Blitzkrieg post-script

Well, everything was a bit miserable at the end of my last post so apologies for that.

I’m a week or two further along the line now and I’ve been applying the patches to their designated places in the literature and experimenting with each zone.

I’ve found that the only place that works is my upper arms. I just have to find out how I can rotate the patches so I’m not sticking them in the same place every 14 days (space is limited), as all the literature says “do not stick the patch in the same place in a 14 day period,” without explaining why – will my arm fall off?

Anyway, it’s 7 days of patches just above the left elbow, followed by 7 days above the right. After that it’ll be 7 days just below each shoulder (on the non-hairy bits).

Sleep is blissful again, but I’ve found that I’m very weak in the legs when I wake up, and fairly weak during the day so I’m thinking about referring myself to the physio again.

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.

Baclofen fun

Well it’s the new year (happy new year!) and after over-indulging over the festive period, my thoughts have naturally turned to new year’s resolutions. Normally it’s something to do with losing a bit of weight and becoming fitter, even if it’s just a little bit fitter and being able to take my belt in a notch, or maybe even two notches if I’m lucky.

I’m not talking about joining a gym or going on a crash diet, because that’s just not me. It’s not something I can sustain or commit to. I know I can shed the pounds I need with a few sensible lifestyle changes. I’ve done it before, and that’s what I intend to do.

Also, the trouble is, I’ve come to the realisation that if I need to get fitter I need to build up some strength in my wobbly legs first.

There’s a brand new branch of the co-op just over half a mile from where I live. This has provided a good excuse to nip out for any supplies we might need. The co-op is about as far away as other local shops, but the walk involves a traverse of a local park so it’s much more pleasant and enticing than nipping to the local Spar or the Morrisons supermarket. If we run out of milk, or if I need some green pesto (co-op do a very good pesto), I treat it as an excuse to get some fresh air and a change of scene.

By the time I get home, though, I find it becomes a real effort to coordinate putting one foot in front of the other, my legs will be in the process of turning to jelly and I’ll clumsily fumble with my shoelaces like a crap Houdini once I’m through the door.

The truth is that I can barely walk a mile these days without the need of a ‘good sit down’ straight afterwards. This is a far cry from the five miles I used to run around the neighborhood until relatively recently, or the eight miles I used to walk every day while working in the east end of London some 15 years ago. When that mile is up, I’m already off balance; I feel like I’m leaning forward, waiting to collapse into the friendly welcoming arms of my sofa.

And it’s not just walking: I went to see one of my favourite bands – Mudhoney – in Leeds towards the end of last year and spent most of the gig worrying about my ability to stand up for long periods, only for someone else’s legs to give out in front of me.

So what’s the big difference between then and now?

Like any human being looking to lay the blame fairly and squarely at someone else’s doorstep, I’ve laid the blame at the doorstep of Baclofen.

Baclofen is a muscle relaxant that I take a couple of hours before bedtime to alleviate nighttime leg spasms. These spasms can literally kick me awake in the middle of the night and then repeat on a cycle every 20 to 30 seconds over a period of an hour or two. On the rare occasion they don’t kick me awake straight away, they’ll kick my wife awake who then obliges by throttling me into the world of consciousness.

Initially my dosage was a single 10mg tablet, but this stopped working as well as it had in the past and I upped the dose to 20mg towards the end of last summer. Over the last month or so I’ve noticed that the 20mg dose had stopped working as effectively, and now, when I wake up in the middle of the night for whatever reason (and I wake up every night), I know I’ll get a spasm by the time I count to 20.

I rang the MS nurses for advice. Should I seek an alternative drug? One that will not only prevent the spasms but also not cause the muscle weakness during the day?

Well, the short answer to that question is ‘no’. I seem to be prone to side effects, and they all have their side effects.

Twenty milligrams is also still quite a low dose and I can apparently increase this to 80mg if I need to. The leg spasms could also be kicked off by factors other than the medication losing its efficacy, or disease progression (my other worry).

Questions that the MS nurse batted my way included whether I’d had any infections… None that I knew of, although, being a catheter user, I could have had a mild infection without being aware of it. Also, I’d come down with a heavy cold in the previous 48 hours.

Also, have I had any major stresses? As I can confirm from my relapse history, stress can apparently influence MS as strongly as any infection.

Apart from my dad dying a month ago, his funeral occuring a couple of days previously and Christmas in the intervening period, I had no stresses that I could recall at all. Maybe the normal day to day stresses of being a parent to one teenager and one nearly-teenager, and being married to someone who takes a not unreasonable dislike to being kicked awake at 2am, but hey!… apart from all that, life is generally sweet.

The upshot is, I’m increasing my dose to 25mg until life gets a bit more tranquil. I’m starting to introduce more gentle exercise in my daily routine and I’m keeping a close eye on any changes for better or worse. Hopefully, when things are a little more settled, I can reduce the dose down again.

It’s about quality of life

As hinted at in my previous post, after a couple of nasty infections, my dad’s in his final days.

At the time of writing he’s being made comfortable. He’s not in any pain and he doesn’t really have the strength or inclination to eat or drink, other than a couple of spoons of mashed up weetabix he had yesterday and enough water to keep his mouth and throat from drying up. He barely has the strength to lift his head or even open his eyes.

This doesn’t mean he’s asleep though. I was talking to a doctor by the foot of his hospital bed earlier in the week and I’d mentioned my MS in passing. The doctor had started telling me about a disease modifying drug he’d read about in the BMJ: “Ock… Ockra…”

“Ocrelizumab?” I ventured.

He looked surprised, “Yeah – that’s it.”

Having MS sure makes you do your homework.

For some reason, my dad chose this moment to lift his head and eye us suspiciously; he lifted his right hand like an imaginary gun and shot me twice before nodding back off.

Good old Dad, he’s had a long life, he has never done any harm to anyone  and he still has a sense of humour.

Now, I’ll lay my cards on the table: I’m an atheist. Plenty of people have tried to convince me otherwise: evangelists, jehovah’s witnesses, you name it, but it’s like water off a duck’s back to me now. I’ve considered the evidence and I’d say I was solid in my (non-) belief. It’s not like I can say I wasn’t taken to church as a kid or anything. I’ve done it all. I’m even a Sunday school drop-out.

It comes from having a vicar as a dad.

I lived in vicarages for the duration of my childhood until I was within grasping distance of my teenage years, and then we moved into my gran’s old house and that’s where we settled.

Dad gained a job as the first full-time chaplain in the newly built local hospital, building the role up from scratch.

I don’t meet that many people who remember him in this role as it was a long time ago. The ones that I do, however, always take pains to tell me what a lovely man he was and how he had time for absolutely everyone.

He really found his vocation in life, and made it his mission to keep his finger on the pulse of all the staff as well as the patients.

Whether it was meeting or sharing jokes with the cleaners (or the ‘pink panthers’ as he called them, due to their pink uniforms), the consultants, or the mortician (who memorably tried to get the measure of my dad by inviting him to a post-mortem, expressing surprise that he hadn’t fainted during the experience), he listened to them all, and he let them all unburden their stresses, complaints, fears and sorrows onto his shoulders.

He respected no social hierarchy. We were all human. We were all made equal. We were all loved.

I remember him telling me that he’d been to see a patient who’d listed wicca as their religion. I’d expressed surprise that he’d been to see someone who wasn’t a christian. He put me right – it didn’t matter what your religion or lack of religion was, we all need someone to listen to us and that was why he was there.

When I was diagnosed with MS, I had, and still largely do have, a light-hearted attitude towards the disease and everything it throws at me. I guess it’s my way of dealing with it. No matter how breezily I’d mention anything to do with it to Dad, he’d always take me off-guard by stopping whatever he was doing, removing  his glasses and giving me his full attention.

He was retired medically in the early ’90s. A dodgy ticker wasn’t being helped by the stress of his job. He’d had pressure from management at the tail-end of the Thatcher years. He said they sat in offices away from the rest of the hospital and their main concern seemed to be balancing budgets above all else. He felt that his was a role that had no empirical value in their eyes, though I’m pretty sure one or two of the senior management team sought him out when they eventually needed him.

I also remember that he’d found it especially hard dealing with stillbirths and bereaved parents at a time when he’d become a grandfather for the first time.

Years of happy retirement followed in which he became a devoted grandfather to 6 and, in the last year (to his enormous glee), a great-grandfather. When my mum (who was born into a typical methodist mining family) died 12 years ago, on her encouragement, he ‘crossed the Tiber,’ and joined his friends in the Roman Catholic church. This was a move that eventually and inevitably led to him achieving ordination as a catholic priest, teaming up with an old hospital colleague at a church in a working class suburb of town. He retired for a second time only a handful of years ago.

Despite being a non-believer, my upbringing means I’ve always found it very familiar and easy to talk to clergy. Thinking about his last rites, I’d mentioned to my dad that I was going to talk to a priest, and in a feeble whisper he told me it wasn’t necessary. His short term memory had already been blown to pieces by his recent illness, so I assumed it was similar to him telling me about self administering his own communion after his second retirement, but no – the priesthood had been there already.

“He’s all signed off, the Monsignor came to see him… let me see… ten days ago,” the local Dean informed me at the end of the phone, and then in a beautiful turn-of-phrase that made me choke back the tears, “he’s had his passport stamped, and he’s ready to fly.”

It must be a phrase that my dad is familiar with because when I told him I’d heard his passport was stamped, he managed a smile. Then following the Dean’s advice to give reassurance that it was OK to go, and for him not to worry about who or what he might be leaving behind, I added “when they call your flight number, just go for it Dad, just pick up your bags and go straight to the gate, OK?”

“OK” came the whispered reply.

He’s back in his care home now. The hospital where he’d worked has done everything they can for him, and he’s now being treated by nursing staff who visit daily and the lovely living saint who is his main carer. It’s a surrounding that he’s familiar with, that doesn’t involve beeping equipment, the groans of other patients, the pink panthers with their mops and brushes, or having his blood pressure checked at regular intervals. He can be lulled to sleep again by the night trains on the nearby railway, rattling past to destinations unknown.

The future and the wellbeing of the planet has always seemed to me to be on a knife edge with global warming, the ongoing mass extinction event that is the human race, and now the era of Brexit, Trump and the rise of populism across Europe. Dad’s left such a legacy to be proud of, he has touched so many people’s lives, and we need more people like him. More people to redress the balance of an off-kilter world. More people to heal the human spirit.

It’s about quality of life after all.

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Yes – I was a porker of a baby and I remember that monkey

Pass the parcel

A week or so ago, I stood at the end of my elderly dad’s hospital bed while he squinted at me and asked “Daddy?”

Just a couple of hours earlier, he’d been rushed from his care home with pneumonia and possible sepsis, and ‘conscious’ moments like this were fleeting and rare. A few days previously, he’d been wide awake, taking several attempts to record a wedding message for my niece. While my eldest daughter held up her iPhone, he amiably stumbled over the details. He managed it more-or-less in the end, with many a chuckle between takes.

I didn’t know either of his parents; both of them had lost their lives in the years before my birth. With my dad’s milky blue eyes struggling to focus on me, I suddenly recalled a photograph from the 1930s of my grandad playing with his son – his only child – in the sand of a Suffolk beach. It felt like he was in the room – a presence handing Dad over in a game of familial pass-the-parcel, saying “Here you go: We brought him into this world, you’re seeing him out.”

Since then, my dad’s rallied a bit. He’s responded well to antibiotics and he’s been moved into a ward with other semi-conscious old men. It’s still early days and he still has a mountain to climb. Whether that climb has an end point that involves falling off a cliff or dozing in front of daytime TV with his care home cohort remains to be seen but the latter’s looking more likely now.

All in all, Dad’s bucked the trend. His parents died in their 60s and he’s overcome a history of high blood pressure, heart problems, and more recently, diabetes and Parkinsons, to come within grasping distance of his 90s.

When he was my age, he was fit and healthy, a former cross country runner, and a fairly active dad with no apparent sign of the health problems to come. Of course, I can see the many parallels between the pair of us already – we both have a compromised neurology after all.

I know any straight comparisons between us will involve lots of negatives for me in terms of balance and mobility, dependence on catheters (a sure fire way to bring microbes on board), a now thankfully distant history of cigarette smoking (including the odd dodgy one), a desk job and the lack of exercise that comes with it, and the timebomb that is antibiotic resistance. I’m not 100% sure how my pescatarian diet and the fact that I have only a dash of semi skimmed in my tea and low fat marg on my toast offsets all that, but it might be high time for me to knuckle down and set about safeguarding my future.

It’s just that right now it’s impossible for me not to imagine a day when I might confuse my daughter for my mum.img065

Let’s get physio.

Here’s a video showing a typical minute in the life of my calf muscles.

Yesterday I added to my Panini sticker book of health professionals by seeing a neurophysiotherapist for the first time. It was mainly about leg pain and my twitchy calves, but also about my general clumsiness, fatigue and my general state of affairs.

My fasciculating legs are a remnant, along with my doublevision, of my last BIG relapse in 2008. While other symptoms have fallen by the wayside or make occasional quick unannounced visits like an unwelcome relative (I’m talking about you, vertigo), my painful legs have been a problem for the last decade. I’m not saying the twitches are painful in themselves, but there’s a correlation: the more painful my legs are, the twitchier they’ll be.

I reckon seeing a physio is one of the best healthcare experiences you can have, as it’s pretty hands-on. It’s just nice to hold someone’s hand, even if they are jerking your arm around. I had my balance, my range of movement, my reflexes, and what sensations I was (or wasn’t) feeling assessed. Most importantly, I got to talk everything out, relaying everything I’ve been through from day one, to someone who genuinely listened.

It also helped me get my head round things. I’ve been using the word ‘pain’ as a box ticking exercise; it’s a convenient way to describe an unpleasant sensation, but it’s not pain in a conventional sense. If it was the pain of a headache, burn, tooth or even a bad back, I could rationalise it, no matter how intolerable – my pain threshold is pretty high (ask my dentist).

This is the pain of extreme discomfort; the pain of an itch you can’t scratch or the ache of an amputee’s phantom limb. At its worst, it’s torture.

I was asked to describe the way my legs feel, and after thinking for a while, I said they feel charged; they have an electricity about them. I’m pretty sure if I listened carefully enough I’d hear the crackle of static or the hum of an overhead power-line. If they wake me up in the night, the charge builds up over a period of about 20 or 30 seconds before discharging in a spasm. Only one leg at a time will be a problem. If I gently touch the sole of my foot or my calf muscle when they’re at their most sensitive, they’ll recoil in a hyper-reflexive instant.

Again, I thank my lucky stars for MS nurses because it’s only this year when I mentioned my legs in one of my nurse appointments that anyone has taken them seriously. Even my neurologist has dismissed them in the past as a twitch that everyone gets (really?) just like a twitching eyelid.

At least now I can take baclofen a couple of hours before I go to sleep and combine these with stretches and exercises to ease my way into the land of nod. I also have a series of follow up appointments with the physio to look forward to.

Post script:

After writing the above, a mildly arthritic big toe joint has decided to flare up. This is causing me no end of agony from the attached leg alone. When I saw the physio, it was after a fairly comfortable morning of working from home, so typically, I couldn’t demonstrate the worst case scenario. Today’s a different matter, it’s like my whole leg from the knee down is on fire. My reflexes are kicking in every time my foot touches something, making it pretty hard to walk. I’ve taken my baclofen early, and I’m taking ordinary painkillers for the toe, so fingers crossed I’ll get some sleep, but I’m not holding out too much hope.