I’m Ellen Marshall – in September 2015 I sat in a room with my boyfriend and five members of medical staff. And the neurologist said the words that I was very much expecting to hear “Ellen you have Relapsing Remitting Multiple Sclerosis”…
It hadn’t taken me much to realise that would have been the case, having experienced nearly four months of limited to no feeling in my left hand, the constant trips to the toilet, amongst other symptoms typical with MS.
The nurse took my boyfriend and I into a smaller room and asked if we had any questions. My boyfriend spoke up “I do. Will she get free tickets to the cinema now?”
This wasn’t insensitive at all, this was ‘us’. We always try and find the silver lining and make the most of what is a not-brilliant situation, especially for a then 27-year-old to find herself in.
The nurse’s answer was “no”, but that didn’t matter. I did however wonder how this newly found diagnosis would impact the things I loved most in life… going to gigs!
After going to a few more gigs post my MS diagnosis, I was finding it quite hard to bounce back on the days following these events.
On one occasion, my legs felt heavy standing for hours and when the fatigue set in so did the spasms, and the inability to hold my pint without it flying everywhere! That’s when I noticed a raised platform in the corner of the room near the disabled toilets – there were some plastic chairs out and a member of staff wearing a t-shirt saying, “Special Assistance”.
I looked into this more when I got home and stumbled across a card you can buy where you get independently assessed; the card is recognised in some big music venues. It’s called an ‘Access Card’ and it drastically changed my gigging experience. On my card, I have a plus one symbol, which in some venues allows me to have discounted tickets or a free personal assistant ticket to that event. It also allows me, in some places, to access that special area where I can have the choice to sit down or stand, and I am close to the accessible facilities.
“The hardest thing about having an invisible disability is sometimes feeling like you may be judged for accepting the support available – it took me some time to become comfortable with it. “
This card suddenly gave me a new lease of life. I could minimise the impact of the aftermath on my body of going to events. It also meant going to festivals like Glastonbury and Coachella would be manageable with the right support in place. The hardest thing about having an invisible disability is sometimes feeling like you may be judged for accepting the support available – it took me some time to become comfortable with it.
I can honestly say my boyfriend and I have taken as many opportunities as we can to have fun and to live a fulfilled life, but whilst still managing to preserve my energy and look after my health.
It wasn’t until recently that I found out that I am also eligible for a disabled person’s rail-card; the eligibility list is based on receiving certain benefits, which I don’t. I sent a simple email to them and found out I could still get one. This will mean I can travel any time of day ⅓ off the cost for myself and a companion. Which again will make a huge difference to how I get around.
I travel a lot by train as driving long distances isn’t always ideal if I am feeling a little fatigued or let’s face it, if I want to have a drink… or three! I always find myself (out of habit) looking out for the toilet section when the toilet pulls into a station so I know which carriage to get on to, to be close to it.
Little things like contacting the airlines before you fly can help, I worry that if I have someone next to me on my right-hand side, if I started to have spasms it could be very irritating for them so by contacting the airline in advance, I can usually select my seats with no extra cost. I can also get extra assistance at airports too, which I have only used once and it was a really helpful experience allowing me to preserve energy and not stand for too long in one place (which is harder than moving sometimes!).
So, although I don’t get free tickets to the cinema, there is a lot of support out there for me and others with conditions like mine. If anything, I feel like I do more now than I did pre-diagnosis, I don’t take a single day for granted and live by the motto:
“I will take more from my MS, than it takes from me”