7 weeks post Lemtrada Round 2

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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 (!)?

<<<Always see your glass as half full – then you shall never suffer from thirst>>>

 

 

 

 

 

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