Founders Blog #9

This month has been like a visit to the funfair. I feel like I’ve gone from the roller coaster to the merry-go-round, followed by a lethargic boat ride on the mini rapids.

My treatment was delayed until the 28th July which in itself, feels like an outer-body experience because up until that point, I diligently put MS at the back of my mind daily – St. George’s makes it real and more importantly, REALLY happening to ME. To add to the situation, we no-longer are able to be in the main building of St. George’s because of covid-19, and of course we have the masks, not just on arrival but throughout the entire 6-hour intravenous treatment – respect to the NHS staff, I’m just complaining about one day. So, I arrive like a bandit who has already stolen everything he needs – food, hot drink, cold drink, iPad, the bag is huge because we can’t leave anymore either. As I settle in, get hooked up, dreading the next 6 hours, in walks Natalie. If you have read my previous blogs, you would realize that, between us, the entertainment is about to begin. We are both there for the same reasons, except Natalie has no filter for her distaste, dislike and total frustration in being there and having MS at all. There are other patients in the room receiving various MS treatments and whatever inhibitions they might have with regards to “MS & your bladder/bowel”, they are about to be thrown out the window, as the question and answer session takes place between the two of us. The misfortunes of long walks, no toilets (covid-19), climbing steps, falling UP steps, sand dunes, the stories riddled with humour, make these misfortunes somehow, acceptable.

When I first visited the Ryan Centre, it was very difficult to digest the equipment and general facilities needed to assist people who were more advanced than me. I have met quite a few people with MS who are reluctant to be part of anything that advertises what’s to come – that included me. Sitting with Natalie who is physically more advanced than me, and openly discussing muscle loss, was a revelation for me. As my legs make life more difficult, it is comforting to discuss, be angry, be educated and be with like-minded people because, like Natalie, you don’t need to have a filter. You don’t need to be emotionally guarded either for yourself or for the protection of loved ones. Going out with a roll of toilet paper in your handbag because you might need to pee in a bush – that’s acceptable. Passing wind whilst cuing at a store for even longer than planned, that’s funny rather than embarrassing. Our openness allows us to let-things-go rather than worry. And this, is good mental health – this day, was my day at the funfair.

I always like to end these things on a high, and Sportin MS, financially is going from strength to strength. We have had some fundraising events, Jessica Leech, Old Reigatians Rugby Club and one other donation which you can hear more about in the near future.

Love my family,
Kindly
Antoinette

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