Happy Christmas. Two months post-Lemtrada Round 2

Out on a bike ride last week, one of my companions lamented (/laughed) at the phone-calls received from his son, who was away at university. These calls would come out of the blue, and would start with teenaged charm turned to the max. After the pleasantries though, the request for a little financial help would never be slow to follow (!). And, of course, the love/curse of a parent is to succumb.

Poor parents – always reached for in times of need. I’m probably guilty of calling mine most typically when one or other of my boys (or me!) are ill – “what medical emergency is it this time?”. It is usually when I’m most seething with frustrations at my MS that I’m sufficiently exercised into writing a blog – I have wondered if this is just my own way, subconsciously, of reaching out for support…. – “o pity me!”

So what disaster is it this time?

59 days post-lemtrada and I’ve just been out on my bike.

I wheezed on the hills – but for the first time in ages, I felt strong. This mild excuse of a winter’s day, had blue skies and not a breath of wind. On one of the longest steady descents I reached forward on to the drop bars, and pushed my highest gear. I stood on my pedals coming round the corner on newly laid tarmac and raced to the next bend. My malaises seemed to melt away.

I’ve now ridden 12,000 miles in the year – few have given me as much pleasure.

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After all the professional turbulence of the last few weeks, and uncertainty, a previous client has just offered me a new contract for next year. As a contractor you rarely get feedback (unless it’s criticism!) or praise… a repeat contract is probably as near as I’ll ever come to, if not praise, at least some level of acceptance. And a financial breath of relief.

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The building work, which has been going on in our house for over 15 months now, is coming to an end.

The damage caused by a burst water pipe a fortnight ago has been decorated away.

As I type, a painter is putting the finishing touches to our new, white gloss door frames.

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A couple of weeks ago, our Ford was written-off, “T-boned” side-on by an errant driver. We’ve then enjoyed the stresses of a front wheel blow-out; and the delights of filling our diesel engine with £65 of petrol.

…but my wife has just successfully navigated a week of smooth commuting in our new car without so much as a parking ticket – at least, not one she’s admitted to! 🙂

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Our Christmas tree stands, freshly decorated, ready for the weekend to come.

My 5 year old, has penned his letter to Santa with a dedicated focus that brought a tear to my eye. He spent his nativity play, back to the audience, showing impressive stoicism as he tried to attach his “King’s” cape, which seemed to have a life of its own.

For his part, my 9 year old, had atop his own Christmas List: “More Independence”. In case the point wasn’t made, this was swiftly followed by: “More Freedom”. So the teenage years approach….

I sit at my desk drinking a fresh, strong coffee. I look out the window at our garden and ponder the fact that our fencing could probably do with a clean.

A job for next year.

Happy Christmas, everyone.

 

7 weeks post Lemtrada Round 2

My in-laws came to visit last weekend. And nephews, uncles, aunties and all. I never thought I’d be the adult saying this, but, my goodness, those kids really do grow fast. “I remember when you were just this tall….” Toddlers become boys become teenagers, in what seems like the blink of an eye.

As the building work still going on in our house continues (at what feels like glacial pace), removed observers occasionally pop round ‘amazed at all the change’ – “can’t believe how much has been done…”

Our friend nearby has just had her baby. “No way! That’s been 9 months already??!”

This last week, I rode my bike again. And got myself into work.

I heard, “I can’t believe you’re back so soon!”; “You’re so brave to be back on the bike!” To me, it’s been a very long 7 weeks…. and, although the trees must now be thinner, I certainly don’t yet feel ‘out of the woods’.

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Tiredness (fatigue), and indeed pain, are so subjective. My experiences of A&E, being asked to grade my own ‘pain’ between 1-10, immediately prompts the thought that I could be anywhere on that scale depending upon who is asking and why… But, right now, I feel like my batteries are seriously low whoever is doing the asking. Kind comments of “I can’t believe you’re back so soon!”; “You’re so strong back on the bike!” tempt me to retort with how far from easy I’m finding this recovery process.

Yesterday morning, I briefly rode my bike alongside some friends in Bristol. It was a beautiful, blue sky, winter’s day. “…back on the bike!”… Yesterday afternoon I was phoned by my neurological consultant to discuss my latest blood results. [Excuse the technical terms but…] My lymphocytes (which my treatment was designed to target) were still ~zero. My neutrophils (another element of the body’s immune response) were still considerably lower than ‘normal’ and fall within the boundaries of a condition called “neutropenia” – and neither had moved in 7 weeks. And, perhaps most pertinently to the phone call, my overall white blood cell count had actually fallen a further 50% since my first readings taken immediately post-treatment (the overall figure is now 2 vs a healthy range of 4-11). All this information can probably be summarised as:  yes, I may be back on the bike; but I’m still cycling in the woods, not yet through them. The consultant encouraged me to continue to take things easy and to perhaps avoid work (and its germs) for a bit longer…. (I pointed out that, at home, both my boys had been pretty ill last week, off school with coughs, colds, sickness, headaches and vomiting….)

Vulnerable to infection. Sleeping 10 hours a night. But also “back so soon!”; “strong on the bike!”. Health, like A&E pain, would seem to be in the eye of the beholder. I hear of Lemtrada patients who returned to full-time work a fortnight after their treatment… I wonder what they would give their “fatigue score”- and, perhaps more interestingly, I wonder that they would report if they were me? How do they cope when their vision starts swimming and they need to lie down when they’re mid-task – or are they just made of sterner stuff (!)?

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