Accepting the stick man

As I mentioned in my last post, I have recently started Ocrelizumab infusions. After a year of lockdown, this has involved a couple of trips to the city for long days in hospital hooked to a drip and, face-to-face interaction with other living and breathing human beings outside of the family bubble. I have noticedContinue reading “Accepting the stick man”

Ocrevus checklist

I’ve just had part 1 of my initial Ocrevus infusion. Beforehand, I asked the MS community on Twitter for their top tips for infusion day and I thought I’d combine them with my observations so that I can share them here. This may be useful for new Ocrevus patients, and I’ll also refer to themContinue reading “Ocrevus checklist”

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 upContinue reading “It’s about quality of life”

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,Continue reading “Pass the parcel”

The brutal brilliance of bladder Botox

I’m away on holiday for a couple of weeks soon and this means taking two boxes of urinary catheters plus an extra box just to cover all eventualities. And that’ll take up a considerable amount of space in the case. Recent experience bears me out. A couple of years ago, we spent four weeks travellingContinue reading “The brutal brilliance of bladder Botox”

Making lemonade

“To make lemonade out of the lemons life throws at you, you sometimes have to strangle kittens.” Somebody tweeted that recently. Oh wait!… It was me! I tweeted it! Why? Because to aid a restful night’s sleep and to stop myself getting urinary infections, I will now have to self-catheterise every day, at least onceContinue reading “Making lemonade”

The eyes of the monster – part 2

Well, I went to see the eye surgeon. The upshot of my meeting was that I’m not going to have an operation to correct my doublevision. I decided that it wasn’t worth it because I have what he termed a “complex squint” and any correction to my doublevision to the left would be offset byContinue reading “The eyes of the monster – part 2”

The eyes of the monster

Regular readers may know that I have had doublevision ever since my last big relapse in 2008. Every time I look left I see double. Looking straight ahead I’m fine and looking to the right, results in a textbook case of nystagmus (shaky eyes). Doublevision is the reason I saw my GP in the firstContinue reading “The eyes of the monster”

Neuro update

I went to see my new neurologist last month at big city hospital. Like my last neuro, he is another twinkly eyed, amiable bloke. My last neuro- has a vastly increased workload apparently. Either that or he’s too wrapped up in his trials and research (which I have consistently turned down the chance to takeContinue reading “Neuro update”

“Sorry, there’s nothing we can do”

There is a stand up routine by Sean Lock where he recounts being told off for swearing by belligerent airport staff. His exasperated reply finishes with “This is exactly the sort of occasion swearing was f***ing invented for!” Excuse me a moment… a$%e!…  &u$%&!!…  (%d%*!!! %^&*!!…   f&*^:~!!…  ~*()&*&^$%$”!!!!!! There – out of my system… No, wait,Continue reading ““Sorry, there’s nothing we can do””