On a bike, not at work

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Lemtrada plus 4 weeks.

I am improving. I am getting there. But it feels like progress is very slow.

Last weekend, for the first time, I was out on a bike. It felt a bit wobbly (I felt a bit wobbly) – but it was hugely spiriting to feel some fresh air on my face. Things were definitely moving in the right direction. Turning “glass pedals”, wrapped in layer upon layer to keep out the cold, I, at least, felt as though things were going to be ok.

The air was crystal clear and the sky was blue.

Happiness seemed so uncomplicated.

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To add a sense of challenge to my “Lemtrada” treatment, the last few weeks have seen, firstly, a house move; and then, secondly, my wife losing her job. As is often the case, timing could probably have been better. This undercurrent (overcurrent?) of stress has been somewhat exacerbated by the fact that I’m not getting any sick-pay during this current period of recovery – I’ve long benefitted from the freedoms of being self employed, but sadly sick-pay is not one of them. With all this in mind, I made a bid today to get back to work. The financial imperative.

What a disaster.

It went wrong before I’d even arrived. As I tentatively commuted in by car, another driver crashed into me whilst I sat stationary at some lights. A crumpled bonnet, smashed number plate and a sore neck & head. Could have been worse – lucky I wasn’t on my bike.

When I first got back to work, I couldn’t remember my laptop’s 6 digit user ID. The same ID I’d used every single day at work for over a year. I really hope my brain hasn’t turned irreparably to mush. I panicked that I couldn’t remember my colleague’s name… and I wondered how long I could hope to maintain the pretence of a job if my mind has actually ceased to function…

Despite leaving home a good hour early, I was then running late and had to hurry to my appointed training room without having lunch. (I was due to take a training session of perhaps 15 attendees).

I didn’t have any time to prepare, and had started talking to my audience before I’d really had a chance to compose myself. It quickly became apparent that I couldn’t focus on my screen. I was trying to use my laptop as I illustrated points on an OHP – but the focus, then re-focus, on more than one screen was too much for me: the dreaded vertigo kicked in. I started to hear, and then listen to my own voice as though it was somehow disconnected from anything I was doing. A thought flashed into my head that maybe I was dreaming… and then a second later a panic that I was maybe going to faint. Mid-sentence, I paused… sat down… then announced that I couldn’t continue. A colleague gamely stepped in, as I exited stage-right and adopted the brace position.

I wondered if I could get away with charging 2 minutes of time for the period that I had actually been talking. I wondered if I’d be able to get back home safely. I felt very ill.

Happiness can be so uncomplicated. What a shame that we can’t always just be so.

 

 

 

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Acceptance?

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Reactions to a diagnosis (in my case of MS) are widely described in literature as following similar patterns to a bereavement:

Shock – perhaps confusion or denial;

Anger;

But then acceptance.

One of the (several) emotional conversations I had during my recent Lemtrada treatment was with a fellow patient who had symptoms extremely similar to mine. He was the same age (almost to the day) – and was even (slightly spookily) of similar appearance. But he had been diagnosed much earlier than me – some 3 years previously.

In the last few months, triggered by symptoms very similar to what I had been experiencing, he had stopped full-time work; and “retired” from his sport (where he had reached a decent level). He now used a walking-aid when his symptoms were at their worst.

He was quite incredibly calm and phlegmatic about these concessions (or, at least, described himself this way). I tried to articulate the amount of fight I still felt I had – but he was philosophical about this as well. His story was that he had been ‘furiously angry’ for 2-3 years after his initial diagnosis (I think he had taken out a lot of that anger playing ice hockey which was perhaps why he’d got so good at it!), and his marriage had fallen apart. But he believed that he was now calmer and happier; growing with his condition – living with it, rather than fighting against it.

I still have not accepted the changes that MS is bringing, will bring, to my life. It seriously agitates me. I wonder if, in time, this will calm, and I too will reach my own acceptance of sorts. But I wonder, too, if this is really what I want – or part of what I want to fight.

Teaching an old dog new tricks

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Three weeks since Lemtrada and I’m still largely house bound. I’m deeply frustrated by my current lethargies and am not dealing with this relative immobility too brilliantly.

When asked how I am, I complain about an ongoing issue with my eyesight; and a debilitating vertigo that seems to strike 3 or 4 times day, almost dragging me to the floor; and I mention an ongoing exhaustion, which I can’t seem to shake. But what I’m struggling to cope with the most is inside my head. Inside I’m so angry at these lost days; these opportunities at life which are passing me by.

I can’t help but wonder whether its the same for everyone- or whether, for some reason, I’m particularly ill-suited to these changes; or just stubbornly unable to accept them.

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My two boys wrestle on the floor. Again.

They’re  incessant bundles of frenetic energy, and don’t seem to do much else.

There’s a 4 year gap between them – a space that the younger one furiously tries to bridge (on determined repeat).

Although they’ve been brought up the same way, they are undeniably different boys – special, of course, in their own ways 🙂 Who knows which brief moments in time have most formed their personalities; and which strands of their DNA pushed them one way rather than another? Whatever “they are”, of course, they come (at least, in part!) from me.

From a young age I, too, have always had a restlessness; and what is becoming all to clear is that, however I was born – whatever it is that I am now – I’m certainly not well-equipped for being a patient. I feel that there is some poorly understood process within me, something that compels me to get up at 4am on a rainy February morning to cycle 200km, that sits particularly poorly with being largely housebound for (what is now) 22 consecutive days.

In fact, it’s driving me mad.

What gives me the compulsion to get up at 4am and cycle 200km? It’s a worry that I might miss out. I hate any feeling of life passing me by. And, at the moment, it feels as though it’s slipping through my fingers at the rate of knots.

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Reading more about MS – and the possible behavioural traits associated with it – a “nervous energy” is described as being particularly typical. I don’t like the term “nervous energy”; it feels negative and implies some sort of anxiety, unease or dissatisfaction, none of which I (want to) relate to; and maybe I’m extrapolating my own paranoid sensitivities here, but it also seems to imply a certain degree of self-centredness: whirring on my own hamster-wheel at a different pace to others. I don’t like that thought.

But, although I might not like it, in parts, I confess, the cap does seem to fit.

And, as I get older, I do wonder if it’s getting worse.

After I left school, my back-packing days (which were seminal times for me) certainly didn’t bring me to a calmer acceptance of my place in world. Instead, the most significant perspective I seemed to glean was of the temporal fragility of it all: how I was to be forever fated to miss so much more than I could ever see. This panic of mortality only enhanced my desire to see and do as much as possible, as quickly as possible, before it all turned to dust.

It feels as though I now need to learn some new techniques for life because my philosophies and life-skills that have been slowly developed don’t seem to be so appropriate anymore. Maybe I have to consciously unravel a bit of what I am, and teach myself to change.

I don’t want Valium to the be the answer to it all.

Treatment done; recovery ongoing.

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As I left the treatment centre a week ago, I received an upbeat text: “So, you survived Lemtrada!”

And so I did.

But the phrase didn’t ring quite true – this didn’t feel like a moment for a celebration. My “surviving Lemtrada” feels akin to “surviving MS”: there seems to be the need to add the disclaimer, “for now”. Something slightly murky had been done to my immune system – the immediate and direct impacts of which were fine – but the endpoint was/is still far from known. Since then, a directly related (albeit anticipated) flare-up of my old MS symptoms has been difficult to absorb. But the week of treatment, then week of recovery, has certainly given me ample time to think… maybe too much time… and so, now, another blog as I piece together where I am now.

This blog was always intended to intertwine MS and cycling…. but I’m afraid there (sure as hell) isn’t any cycling going on here at the moment. If I have to stretch to a cycling analogy to maintain the thread, the last fortnight has not been unlike a 2 week cycling adventure: there’s no way I could sum up the emotional extremes in a simple sentence; there have been some highs and lows; some tears; some pain; and, at the end of it, I’m simply back where I started.

Apologies for this unusually long blog, but this fortnight feels as though it’s been the confluence of many hopes and fears; big emotions that I want to try and get on top of.

 

The week of my treatment

The actual facts of the treatment were perhaps the least interesting aspects of it. The drug was delivered via the steady drip, drip of IV. Me, the patient, in bed, watching my pulse, my blood pressure and the time of day. Nurses with unfathomably deep reserves of kindness asked me how I was, stuck needles in my arm and took my temperature. The drug looked no different to water, but arrived each day in a black sack of thick plastic, stamped with toxicity and danger. It felt slightly cold as it went in.

The first few mornings I was given steroids first – which seemed to have the same effect as a glass of champagne, nervous before some social ‘do’. I don’t think I’d felt so good for months; sipping a coffee, sitting up against fluffy pillows, texting friends and making bad jokes to whichever nurse happened within earshot. By the first afternoon though, my temperature was 38.5, my HR was pounding at 80, I was nauseous, sweaty, and crawling into a ball as my head spun. But that transition on Day 1 was the worst of the week. From then on, the daily pattern was more… expected. And less severe. Each night I slept badly – slightly feverish, twitchy and invigorated by steroids; but, each morning, I seemed to get a window of respite before more negative side-effects kicked in. The worst grogginess was in the afternoons, but this was subsiding by the evenings.

My fear that I’d get bored stuck in a bed all week proved unfounded, but so did my hope that I’d catch up on some good books and DVDs. By the time that all my morning checks had been completed, all I felt like doing was lying, largely motionless, eyes shut, but not asleep, seeing how low I could get my resting heart beat.

Whilst I’ve never been accused of having a model’s good looks, I think it’s fair to say that as the week wore on I started to look quite remarkably bad… even by my standards. Blotchy cold sores appeared all round my mouth and eyes; and a heel-to-head, full body rash, both front and back, glowed the brightest of swollen reds. Although these were only mild irritants, they seemed to make me all the more lethargic and tired.

It brought a wry smile to my lips when I considered quite how similar I felt to those head-crashing hangovers of my younger self: the sensation was of being slightly poisoned, drinking water to try and flush myself out. At least this meant the drug was getting into me, doing what it should be, rather than something I’d brought upon myself through youthful craziness.

A week of treatment was certainly enough. My pallor was a tired grey and I had black rings round my eyes.

But it had been fine.

If the choice to accept this drug treatment was a decision to suffer short term gain for long term pain, I would have gladly suffered much worse if this would have meant an improved long term prognosis.

As I left the hospital they ran a blood test to confirm that the white blood cells in my body had been wiped out.

 

The week after my treatment

I had steeled myself to feel pretty bad for a couple of weeks. But the strongest body armour can’t help you from the thoughts within.

The growing doubts – and fears.

The hardest thing to deal with hasn’t been the physical side-effects; but the burden of feverish ghosts and dreams. This week all of my gremlins and boogie men have come out to play in my fitful sleep, my fears for the future dressed up in the ridiculous white-sheets of halloween <<My eyesight. My ability to walk>> I’d been warned to expect a possible relapse in my MS symptoms – and so it has proved.

Several times I have had to lie down on the dining room floor as a spinning vertigo has pulled to the left… to the left….

I trust in what I have been told: that such collective flare ups of past symptoms are not unusual. But for them to be here all together feels like a scary portent of the future: I am losing my balance when I move my eyes too swiftly from one object to another; my legs are shuddering with spasms and shakes whenever I leave them still for too long; and the touch and movement of my hands seems disconnected and removed. I have pins and needles; numbness and hypersensitivity. Lethargy. My vision feels wrong; I can’t walk more than a few metres at a time; and need the loo with seconds notice.

This week, I hope, will pass (yes – it will) – but I take it to represent what a worsened condition would be like… all the time. It feels pretty crap if this is my future… there sure ain’t no cycling going on here.

 

Talk and Tears

Before last week I hadn’t talked to many (or any) other MS sufferers. I hadn’t really talked to many other people about my MS, full stop. Then suddenly, all at once, there was a stream of patients sitting beside me, phone calls with old friends and family visits.

Since I was diagnosed in March, my conversations about MS have been released like my Lemtrada: in little drips, a bit at a time; drops which I was happy to let go when I had grown comfortable with their form. But this last week was like a sudden flood, inundating even my most guarded thoughts, many of which I didn’t even know I had.

As other patients described their symptoms & their lives I often felt choked – as they described places which maybe one day I’d go; maybe places I’d already been. I learned that, behind whatever apparent calmness I might show, there’s a pinprick of intense sensitivity that no conversation can step around: I can’t be told that MS is “not so bad”; and I get angry when I’m told that it is. I’m sensitive when told that “we all need to deal with it in our own way”; but then I’m defensive if I’m offered advice.

There’s been much introspection (too much?) this year – but not many tears. Then, on the Thursday, feeling swamped at a fellow patient’s tale of how he slowly had to give up his job; and then his mobility, for the first time I felt my eyes prickle. At that moment another visitor, I suppose trying to help, interjected with how terrible a condition MS was.

“A friend of mine has terminal cancer. They say they’d much rather have the certainty of cancer than suffer a deteriorating MS for the rest of their lives”.

The exchange had made me wobbly with a disproportionate irritation. I called an old friend of mine who lives many miles away, and he listened to me talk for more time on a phone than I probably have done for many years combined. Emotions tugged away. My bed began to feel like some lifeless capsule cut adrift from my actual life; some non-descript corner of some foreign field, far from home.

The nurses, suddenly and obviously, were not my family – I felt as though I was being experimented on by white jackets.

I badly wanted to see my wife. And my boys.

When the nurse next attended, I seemed to have shed a few silent tears. (By the way, I found rumours that tears are cathartic to be unfounded – they left me with a headache and a sore throat).

“Don’t worry… it’s the steroids,” she said. “They give you the baby blues”.

“What’s the cure to those?”

“The only known one is no baby in the first place….”

All this talking was proving too emotional for me. The last thing I needed was to get started thinking about my boys…

🙂

Now I just want this window of treatment/recovery to end – I’ve had enough of it – I want to get back on with my life.