The Power of Positive Action Pt. 3
1. I did have an MRI as suggested by my MS nurse. And [whisper it] I really enjoyed it. In my memory, my previous experience took part in some kind of dark, industrial, airless tube. This time it was light and airy, and the technicians managed to feed through the sound of my favourite internet radio show. The DJs even dedicated a song to me the next day after I’d emailed to thank them for making my MRI experience so positive.
Why was this so much better? Is it a new-found acceptance and maturity on my part [unlikely]? Is it that, as a relatively new parent, the chance to have a nice lie-down is always welcome?
Or could it be sharing the waiting room with a toddler and his terrified mother as the nursing team prep him for his MRI? I’m pretty sure that might have persuaded me to man-up a little bit.
2. After a bit of back and forth and a whole lot of blood tests, the MS nurses agreed that injecting Rebif was having a detrimental effect on my state of mind, quality of life and my health. So I stopped taking it for a couple of weeks to flush it out of my system. At which time…
3. We took a foreign holiday for the first time in about 6 years, the first with our daughter, and it was amazing. She was great but we still took my in-laws as support, which was handy because…
4. ...after a couple of days spent walking around our (relatively flat) Italian lakeside resort and swimming in the pool, my legs decided they didn’t want to play anymore. After a bit of an emotional meltdown (on the part of my pride), we decided to hire a wheelchair for the rest of the holiday, thanks to the amazing staff at our hotel.
And for a couple of Euros a day it was a revelation.
Don’t get me wrong, I hated every minute I was in it, especially having to rely on family members so much.
Even though I’ve experienced people try to walk through me when I’m toddling around with my walking stick, nothing prepared me for how ignorant people can be with regards to wheelchair users. And the mostly cobbled pavements didn’t do anything to prevent motion sickness.
But it meant I didn’t have to spend the whole week moping on my own by the pool. I could go places and, because I hadn’t walked there, I could then walk around for longer.
Since coming home I’ve got my own wheelchair. And I still hate it. But I also initially hated my disabled drivers parking badge and my walking stick.
These are tools to help me live my life.
5. Shortly after we got back home, two separate life-changing incidents occurred:
- I started taking Tecfidera (dimethyl fumarate) which has been great so far – not much flushing and aside from a few little unsavoury gastric issues it has been incredibly positive – not least because I’m no longer injecting and feeling rough for three days afterwards.
- My daughter started school. I know, where does the time go? I’m now sharing a house with two bossy, opinionated women. And I wouldn’t change it for the world.
Anyway, that’s enough about me? How have you been?
How well do people around you understand MS?