I took the plunge and bought a Sunflower lanyard last week. I was against buying one initially. I mean, if I’m out and about it’s because I’m well enough to do what I need to do and then come home so who needs to know about my health? Well, then I had an awkward experience on a train journey. Close to a fatigue crash, I just needed to switch off and daydream until my stop. It was just my luck that a woman and her kids joined us on the table we were sitting at. I couldn’t muster the energy to say I was unwell and didn’t want the subsequent questions so I just gave a smile and tried to keep any conversation short. A few stops later, and to my relief, they left. I was so mentally drained. This made me think, maybe if I had something to show that I’m unwell then people may (for lack of a better expression) stay away or be quiet without me taking more energy to explain myself. So, I decided the Sunflower lanyard was the way to go.
AP and I took Kita to a dog show. This was my chance to test out my new accessory. Arriving at the show we stood in the disability queue which was weird as I still haven’t quite accepted I am disabled. I noticed a few people had the same lanyard. I no longer felt awkward. I also felt part of a group. I had an urge to go up to people to play ”guess their illness” and shout ‘Snap’ if they have the same one, ha!
We entered the show and the first thing I did was use the Portaloo. Yak! I know, but there was a disabled toilet and I get to use that now. I look ‘normal’ but with my lanyard hung around my neck, I feel no-one can question me being disabled. This boost stayed with me all day. I could sit down on a bench without feeling guilty, use a table seat for the two of us without feeling I’ve taken a place from other people. I could be excused for slurring my words and not feel like I need to explain myself. If I yawn they should know it’s not because they’re boring me – I get this a lot. Now, of course, I am assuming people know what this lanyard is for, as they may not, but regardless, just having it feels like I have a pass to stop faking being well.
Another reason why I wanted to use my lanyard at the show was to raise awareness of CFS/ME. I was so ready with any questions if the need arose. This didn’t happen. But at the last minute a 7 year old boy approached me and asked if I had ME. I said yes and he then told me his mother has ME too. Oh wow, I paused as I didn’t know how to respond. Then I asked how long has she been unwell? 5 years, he said. That means he was only 2 when his mam got sick. I felt for him. We chatted a little while then he went off. I didn’t meet his parents but this encounter touched my heart. He was a great, lively little boy with his dog (who beat us in the Best in Show final, drat!) and it just made me remember the people and their families out there who are suffering too.
I think the Sunflower did it’s job. Not what I expected but it’s made a difference, to me.