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


  1. www.alicetrippingonair.blogspot.caWed Sept 02, 01:59:00 am

    I am going to Scotland on Thursday and dealing with the exact same thing re: wheels. Thanks for sharing this.

  2. Hi,

    I can't pretend it wasn't strange feeling but the first time I arrived at a destination and was able to walk around said destination, it was totally worthwhile. As long as you're travelling with a willing and understanding 'pusher' (heh) it is not so bad.

    Me and my father-in-law did initially butt heads when I wanted to get out of the chair to negotiate a tricky kerb or walk a little of the way but once we'd got over that we were fine. You know how much you can do, and eventually it was a pleasure (kind-of) to flop into the chair and get pushed along after a little bit of walking.

    - When I started using a walking stick, I noticed that there were many other people also using them. Same thing with the wheelchair - there were loads of the buggers in Italy, and there will be loads where you're going

    - Scotland is NOT FLAT. You'll be thankful of those wheels - your 'pusher', however...

    Thanks for your comment - it allowed me to include things which I missed out of the post (DUH). Always the way!


  3. Good for you! That takes real guts.

    Admitting you're too exhausted to do whatever should be Rule 2 in the Not MS Martyrs Handbook.

    Rule 1 being flushing the oxymoron* 'I've got MS but it hasn't got me', down the toilet with other bull (probably human) shit.

    *Surely exacerbates fatigue due to overuse of the lying part of your brain.

    1. Thanks! We had a much better holiday as a result.

      "I've got MS but it doesn't have me" is one of the other MS sacred cows I wanted to skewer on MS.net. Glad it's not just me!