Friday 11 September 2015

remember what the dormouse said

This post has been forming in my head for over a week but that pesky REAL LIFE kept getting in the way. Hence writing this at 5 to midnight on a Thursday.

[*shakes fist at reality - again*]

Anyway as I mentioned last time, we poddled off to have a talk from the Queens Medical Centre MS Nurses last week. There were only three other people with MS there, but it was a bit weird for me to be the most obviously disabled person in the room - walking with a stick, that kind of thing.

We had a talk about the various foods which have been shown to mitigate various side-effects. And I quote from the handout:
[to offset Gastrointestinal side effects such as diarrhoea, abdominal pain and nausea]
Eat fat and protein rich foods before capsule e.g. eggs, bacon, sausages, nuts, peanut butter, cheeses (Baby Bel), avocado, full fat yoghurt.
Then we made our way downstairs to get some baseline bloods taken before going to the Pharmacy to pick up 5 weeks worth of Tecfidera - one week at half-strength (120mg capsules) and four weeks at full strength (240mg).

We were told to wait until we'd heard from the MS Nurses before taking our first dose - the bloods were also taken to see if our white blood cell count was so low as to make starting a course of Tecfidera dangerous (thankfully my wife was there to hear this in person - I was all set to go home, stuff my face with bacon and eggs, then neck a capsule - selective hearing strikes again).

When the MS nurse called the next day, she said that my white cell count was back in the 'normal' zone (I'm not even going to try to sound like I know what I'm on about, ok?), which was a relief as my blood tests in June (when I was on Rebif) were fairly unhealthy.

So the following morning I checked and rechecked (and then double-rechecked) that I was taking a 120mg capsule and 10 minutes later it was down the hatch.

The most common initial side effect is said to be some flushing - other than feeling a bit warm after that first capsule, the only other thing was a slight feeling of nausea one night.

I've been trying to watch what I eat - but I must admit I've never really got on with Peanut Butter. But after a childhood as an immensely fussy eater (I didn't eat CHEESE until I went to university, and even then it was only because I'd reached the bottom of the food parcel my parents had sent me away with), I don't like to let things beat me.

On the first day I tried spreading it on a slice of toast (revolting). Then I noticed that Peanut Butter doesn't actually contain any butter (I know, what was I thinking) - so I tried it on a slice of toast with butter (disgusting).

So I lathered the rest of the slice with Jam - now you're talking.


Yes, I know that my PB and J is considerably more J than PB.

And it's not something I can eat every day - I just take a capsule halfway through my breakfast (whatever it is) and the same again during my evening meal. I've also joined a closed Facebook group for UK Tecfidera patients which is great - really active and supportive. Although I'm trying hard not to get too excited when people talk about positive side-effects and improvements to their walking and energy levels (but still...).

This week has been a good time to change meds, as this was the week my daughter started school - you think it's scary? We think it's TERRIFYING. But there has been a lot of other stuff to think about.

Tomorrow I start on two capsules a day at the full dosage - I've told my boss that if I come into work a darker shade of beetroot, he's allowed one jokey comment. But no more.

Tuesday 1 September 2015

wheel's on fire

We've just had a week away in Italy - this is the first time we've been abroad in six years and the first time we've flown with Young Miss Domino. Any worries we might have had about her were unfounded - I looked over at her when we were taking off and she gave me a thumbs-up while grinning from ear to ear. Furthermore she ate pretty much everything which was put in front of her and charmed any Italian waiter she came across.

We went on holiday with my in-laws which certainly took a lot of the pressure off. Where we were staying was a flat lakeside resort but our hotel was a good mile away from the centre of town.

On the first day I managed this fairly easily (lots of places to sit down along the way), caught a boat to another resort, walked round there, caught another boat then walked back to our hotel. After a couple of lazy poolside days, I tried the walk again in the evening.

This was the low point of the holiday - there's a phrase which we tend to use whenever I walk anywhere: "I've / Steve's been doing some good walking". Well, on this night I was NOT walking good.

I got super-frustrated, proper pissed off and everyone was upset to see me struggling. Me and Mrs.D had a chat and decided to look into hiring a wheelchair for the rest of the holiday - we'd talked about this before we left and though I can be fairly stoical about the fact that a chair is only a tool to help you live your life, it was still a pretty major psychological step for me. But the only alternative was me missing out on half of the holiday for the sake of three poxy Euros a day.

The hotel staff were amazing especially the guy on reception who sorted it all out for us (he could speak FIVE languages, and speak them well - unbelievable and shaming).

I can't deny it was a weird feeling being in the chair (it also made me feel a little bit sick) but at least Ms.D said my chair was "cool".

It was pretty shocking how little other people noticed the chair, and I did get a bit (not so) passive-aggressive with pedestrians.

The pavements in this area of Italy were pretty good but every know and again there would be a pothole or raised cobble - I imagine that this is not news to people who use wheelchairs regularly and / or full time but by the end of the week I (and my father-in-law, my regular driver) had pretty much got the lay of the land - which drop-kerbs were going to hurt me or the chair, which tree roots to approach at a certain angle.

And once we'd got to our selected destination I was free to walk about as much as I wanted to or was able.

It IS a tool, and one which I'll have less qualms about using in the future.


Tomorrow we go to the Queens Medical Centre to talk to the MS nurse team about Tecfidera. If all goes to plan I'll leave there with my first stash of tablets.

The two weeks off Rebif have (touches wood furiously) passed without much incident. And if I do find myself thinking about the good old days, I can just look at the massive injection-site sore on my belly (no pictures) from the last time I injected there - over FOUR WEEKS ago, and it hasn't stopped itching yet.

Which has obviously given me the following earworm - you're very welcome!

Roll on tomorrow! *

* genuinely unconscious punning here - sorry