These days there seems to be a convention for whatever you are into – whether it be food, craft, lego or star trek – there are events and get togethers where people sharing similar interests can congregate and revel in whatever floats their boat.
And, believe it or not, MS is no different. MS Life is an event organised by the MS Society where us ‘MSers’ (the MS equivalent of trekkies) can get together.
And, believe it or not, this MS event takes place in Manchester of all places, right on my doorstep.
This year it took place on 14th/15th April at the Gmex exhibition centre.
I went along on the Saturday. There was a full programme of events taking place, with various talks on different aspects of MS, research and treatment, with different experts. There was a section called ‘ask the experts’ where you could speak to MS nurses, consultants, neurologists, physiotherapists, occupational therapists – a whole host of experts all in one place, available to answer questions which was pretty amazing.
I wandered around, looking at people. Trying not to let them see that I was looking at them. I could have done with sunglasses. Trying to work out which member of a group or couple was the ‘MSer’. After all none of us were wearing the equivalent of ‘tekkie ears’. Some were obvious, mainly because they had difficulty with mobility and used a scooter or stick, but others weren’t at all.
I wondered whether they were looking at me, wondering the exact same thing.
I wandered around looking at the different stands … mobility aids … assistance dogs … bladder and bowel care products (catheters) … disability law service … carers … off road wheelchairs … contemporary walking sticks … riding for the disabled ….
‘Bloody hell!’ I thought. ‘This is like … well … (not wanting to sound un-politically correct, as if everyone could hear what I was thinking) … stuff for disabled people! People who can’t do things. Who need help with things. This isn’t me!’
I suddenly thought that me being there was a terrible mistake as none of this stuff seemed to apply to me at all. I contemplated leaving there and then. But then again I hadn’t been there very long so I went to the refreshment area, got a complimentary coffee (and a huge bun to cheer myself up) and sat down to ponder upon what to do next.
As I arrived at the Gmex I had been given one of those cotton shopping bags with the MS life logo on the side – a ‘goodie bag’. It had stuff in it … the programme of talks and events … an MS pen … some leaflets … and a brochure of ‘mobility products’ with a state of the art mobility scooter on the front being ridden by a grey-haired lady who looked very pleased with herself.
“Bloody hell!’ I thought. Again. ‘Do I look like someone that needs a mobility scooter catalogue?!’. After all I had walked there from my flat without so much as a stumble.
In need of some moral support, some assurance that I was not … ‘disabled’ … I text Tom who was in Spain on a stag doo and told him that I had been given a ‘scooter catalogue’.
‘Ooh, do you want one’ came his reply a few minutes later.
‘Want one?! Want one?! What kind of f**king reply is that?!’ I thought, furious. This was not the time for jokes or flippant quips. How bloody insensitive.
But, rather than storming home in a huff, I had a look through the programme and chose some talks that interested me; one on managing relapses, one on how to cope with diagnosis and finally a scientific one on disease modifying drugs. These were actually very useful and I learnt quite a lot in-between catching sneaky peaks at the rest of the audience and playing ‘spot the MSer’.
By this time the day was coming to an end so I decided to leave. On my way out I stopped at the ‘ask the experts’ area and had a quick word with an MS nurse about my monster bites (injection site reactions – see blog 18. ‘Bumps, bruises and bio oil’). She asked when I had been diagnosed – Christmas – and whether I was there on my own – yes – she asked whether my family knew about my diagnosis – yes – and how I felt about it – ok(ish) – she said I seemed to be dealing with it really well, especially the injections.
Now you know when you are putting a brave face on things, but infact, inside, you are upset. And your brave face does not crack as long as no one is nice to you. And then someone is nice to you and your brave face slips to reveal your true face underneath? Yes that. Well that’s what happened then. I had been ok (just about) up to then with the mobility aids … assistance dogs … bladder and bowel care products (catheters) … disability law service … carers … off road wheelchairs … contemporary walking sticks … riding for the disabled …. even the bloody scooter catalogue … but as soon as the MS nurse was nice to me I realised that I was not ok at all. I was devastated. And so I decided to go home.
Luckily that evening I was rescued by my friends Wendy and Mark and their niece Sofia who cheered me up no end with a trip to the cinema and a pizza.
What an amazing event. But so upsetting at the same time.
Some time later I brought up Tom’s rather heartless response to my text message about the scooter catalogue. It turned out that when I said ‘scooter’ he thought I meant ‘scooter’ as in ‘Vespa Scooter’ as I had learnt to ride one last summer… and when he said ‘would you like one’ that’s what he meant …
Well yes actually … I would like one … a black Vespa with a tan leather seat would be much more my style. And that sounds like an offer to me … 😉