*Foggy* Helloooooo! It’s been a while! My P.A has been busy with her ‘other job, hmph! Last week, her ‘other job’ meant I had an adventure at Birmingham NEC and did some ‘work shadowing’ with Stripy Lightbulb CIC. I had a good look around the exhibition hall and saw some stuff that my awesome Foggy Followers could use to make their lives better. I’ll let Sally (my P.A) explain.
I’m only just re-emerging after the manic whirlwind that was The OT Show last week. Thank you to everyone who RT’d, liked and commented in realtime during the exhibition, it meant I could reach more people (pesky algorithm). It was EXHAUSTING. I won’t lie.
When I originally inquired about having a stand at the show my Board of Directors and I discussed how it was completely M.E inappropriate and the implications on my health were discussed at length. However, we decided to go ahead with it because it was simply too big an opportunity to have important conversations (4400 Occupational Therapists under one roof). The original plan was that other team members would man the stand and I wouldn’t necessarily have to attend. Over time things changed. People came and went, or had work commitments that couldn’t be cancelled. So, ‘Team Stripy’ consisted of myself, Gill and Graham my Director (Graham attended the show on the last day), Gill and I had a very busy 3 days that wiped both of us out! Gill was an awesome team member as she has a personal understanding of M.E and knew all too well that I was going to struggle. Lots and lots of ‘Sally, sit down!’. To be clear, a non-M.E affected person would find the 2-day event exhausting add M.E to the mix and… I did not feel well…..at all.
We had hundreds of powerful conversations with Occupational Therapists from across the UK. There were tears and hugs given by them and us. Before we headed to The OT Show, we were anticipating experiencing negativity or brick walls of non-engagement. How wrong we were. There are many OTs who see our desperate need for progress and want to help, they have been frustrated with the lack of training. I was thanked for creating Stripy Lightbulb CIC and thanked for helping their patients as they feel that after doing my training they will have a better idea of the patient experience of M.E. That is the best feedback I could have ever received. That is the motivation behind Stripy – to improve the lives of patients through the education of others.
There were some, naturally, who spoke about the ‘debate’ over M.E being psychological. Gill and I put forward the neurological argument and a few were surprised to hear some of the little nuggets of info that are contained within the e-training. We may have enlightened a few….. *Foggy* AWESOME!
There were also a couple of people who mentioned the Lightning Process and how it ‘cured them’. Anyone who has followed Foggy since the beginning knows my view on LP so I won’t go over it here but needless to say, I kept my mouth zipped shut. I will say this though – both had a C.F.S diagnosis and one said her symptoms still come back occasionally 10 years later (not a ‘cure’ then?). I am always happy to hear that someone’s health has improved, sometimes it’s the method used that is the questionable issue.
I know a few of you are dying to hear about some equipment that Foggy and I discovered when bimbling around the exhibition hall. I came across a stand and noticed an array of what looked like bean bags of a variety of sizes. They weren’t bean bags. I asked the sales rep if they had ever provided M.E patients with their equipment. He seemed surprised and stated that M.E was tiredness…reading between the lines, why would ‘tiredness’ require specialist equipment? I had an awesome opportunity to educate and I didn’t waste it! I explained about our musculoskeletal problems and how their equipment could help.
I tweeted a video of myself wearing their neck support (see video below).
OT's- if you have patients with M.E check out AAT's stand today!https://t.co/F3SzoMrLW2@MEFoggyDog Foggy's Followers- this neck support is awesome. Takes the weight/pressure off. Take a look at their website.#pwme #MyalgicEncephalomyelitis #TheOTShow pic.twitter.com/pWF6g33e3z
— Stripy Lightbulb CIC (@StripyLightCIC) November 28, 2019
Please remember that I only ‘wore’ the neck brace for a few minutes, this is not a product review but it is definitely a possibility. I will, hopefully, be able to write a full product review in a few weeks time…paws crossed x
Would I do The OT Show again? Maybe. It was definitely a huge learning curve and we learned what does and doesn’t work with my M.E body. Maybe I’ll only attend for one day next time and have more staff to stand in for me. We’ll see. This was me 1hr 45 minutes before the end of the show on the last day. I was so close to managing the whole event! (WITH DIFFICULTY) FYI – the floor of Birmingham NEC is cold and uncomfortable but needs must. I had completely crashed.
*Foggy* We played a game of ‘Where’s Sally?’ (Think Where’s Wally?!), she was hidden behind some buggies on another stand.
The owner of the stand (Activate for Kids) has a daughter with M.E and she fully understood my need to get flat and to block out sensory overload. Gill got the duvet and pillow from a nearby stand called Oliver’s Bed. Everyone was helping out, I am very appreciative. I simply wasn’t functioning.
The OT Show was EPIC. Completely not M.E appropriate to the point where OTs were surprised that an M.E patient would even attempt to have a stand at the show. What can I say? I’m on a mission to get M.E into places it hasn’t been before. This was a BUSINESS event and we were selling e-training on M.E. (Note – Stripy’s courses are on offer this week-30% off using cyber30 at checkout. If you are an education/business/healthcare professional please do consider buying a course and getting educated about M.E – stripylightbulb.com)
Both Gill and Graham said they were amazed at how long I lasted, they told me at the end of the last day that they had expected me to not be able to attend both days. Could have told me that!! As MD of the company, I felt it was my responsibility to attend and make Stripy Lightbulb shine. Team Stripy did that and I am very proud of my team. *Foggy* Me too? Yes, you too Foggy, you were awesome!
and Foggy (OBVIOUSLY)
Don’t forget to donate via https://www.justgiving.com/fundraising/mefoggydog Thank you.