From Elite Athlete to Chronic Illness

It's almost 10 years on from "the good old days" but yet I can't ever forget the feelings I had when playing at the top of my game. I reminisce and play back every trophy, league and playoff that we won. I remember every game like it was yesterday and I can take myself right back to that complete sense of belonging - after all, these people were my family and they were "home".

It's really easy to just focus on the great moments but don't get me wrong, I can definitely also remember the heartbreak and the hard work that went into every season. We would spend months and months working on tactics that just didn't seem to come together and then by some sort of magic switch, it would all click and we knew that come the first game of the season we would be unstoppable!

The good and the bad, we went through it all. As a team but also as individuals. I can remember epic highs and the dreadful lows. Unless you have been at the top of your game, it is almost impossible to imagine how addictive those feelings can be. My whole life was committed to becoming the best ice hockey player I could possibly be, and I would have done quite literally anything for my team and personal success.

A LIFE-CHANGING INJURY

Now fast forward to the modern day, so much has changed. It's well known within my sports community that I suffered a pretty devastating injury back in 2014 - it was an injury that I had never seen coming, and certainly didn't expect to have the lasting effects that it did. I suffered what is known as a grade 3 concussion, this is the most severe level of concussion and can result in permanent brain damage if not treated and recovered from properly.

Unfortunately for me, 2014 was a time way before we had such advanced knowledge about brain injury in sport and the actions taken immediately after my initial injury meant that it would indeed lead to permanent damage.

I always asked myself, "why me?" It wasn't a bad hit after all, and it certainly didn't seem to warrant such severe consequence - for a long time I was told I was just unlucky - but come on, who can be that unlucky?

I spent years going back and forward about whether I should play again, and for whom, and if I should try and play at national level again. Eventually in 2019 I got my lasting wish - to play for GB one more time before having to say goodbye to that part of my life. I think this picture perfectly shows how much that last game meant to me (I’m six players from the right in picture 1) and what "my happy place" looks like.

What happened next, I'm sure none of us expected - 2020 and the pandemic hit - it meant we all had to take a back seat from sport and focus on surviving as a nation. I won't go into details here, but after a bit of a medical mishap, my outlook following my first vaccine was not the greatest. I spent two months in hospital in an extremely frightening reality. After being discharged from hospital and many months of tests and doctors’ offices, I was seen by a consultant rheumatologist who took one look at my paperwork and looked at me and simply said "I think I've got a good idea what's happened here".

CHRONIC ILLNESS

I was then referred to The Royal National Orthopaedic Hospital, Stanmore, where I was seen by Europe's leading consultant who specialises in a genetic disease called Ehlers-Danlos syndrome. A name that now seems to answer so many questions. My initial appointment went on for almost 3 hours. We spoke about my whole life - all the hospital admissions, all the "you're unlucky" moments, and all the previous diagnoses I had been given, including my concussion.

After much back and forth discussion, I was told I have a firm diagnosis of Ehlers-Danlos syndrome - I fitted into two categories (classical and hypermobile). Ehlers-Danlos syndrome is a genetic disease of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body. So in a nutshell, it's basically what sticks your body together, a bit like glue!! Without this "glue-like" substance your body is susceptible to all kinds of wild symptoms and can actually be the underlying cause for many other diagnoses.

For me, my main issue had always been poor bowel function. From as early as I could remember I was on long term laxatives and medications to help it, as well as many hospital stays due to bowel blockages. Other symptoms for me include asthma due to "saggy lungs" 😄, loss of hearing due to patulous eustachian tubes, countless dislocations every day - mostly in my shoulders and hips, along with chronic pain and fatigue associated with all the stress it has on my body.

FINDING ANSWERS

But let me just bring you back to why I mentioned this to you all. It was also confirmed that the most hypermobile joint in my body is in fact my neck - now what happens when you have a hypermobile neck and whack your head hard on the ice is a very wobbly brain that hits your skull hard. That is why my concussion injury was so severe. Out of all the questions I had for the doctor, having an answer to that was the most important because I finally had an answer as to why my passion and dream playing ice hockey for my country had to be cut short so suddenly.

Moving on to the current day, I am living with a disease which I know will get worse and I am aware there isn't a cure but I'm okay with that because at least I have an answer to my questions. I knew it wasn't just a case of bad luck. I spend every day in pain, I also spend every day with the constant reminder that I am no longer "normal". I don't have the luxury of being spontaneous anymore because I require medication and medical equipment to let me function - I would mention poo bag here but I'll save more information on her for another day!! I think she deserves a full story just for her!

I try my absolute best to give positive energy to my friends, family and clients. I don't like to complain because it doesn't seem to help me - in fact it just makes me feel worse. Instead I try and defy the odds and show people what you CAN do and I will continue with that until I physically can't anymore.

COMING FULL CIRCLE

In recent months I decided I would give ice hockey one more try. This was after a chat with my consultant- she is great! To paraphrase what she said - "well Monica you know the risk and you're a smart girl, however I also know that the fact you're sat here 10 years later still asking if you can play means that I have one answer for you - be smart and know that whatever you choose, we will still look after you, that's what doctors are for." And with that knowledge I dived into the shed, found my kit and got back on the ice.

A few months have now gone by since my first time back. I've played three games and been to a few practices. My general feeling is that being on the ice is still my home and my safe place (being an autistic adult we struggle to find safety). However it's hit me hard realising that I am not the person I once was, my body doesn't react the same and my body aches in such a different way than it used to.

To play a sport like ice hockey in the UK you have to be reallllllly adaptive because it usually involves very late nights and lots of travel. It kills me that I can't just jump in the car and drive up to Sheffield anymore for numerous reasons - I can't eat normal food anymore so it always has to be pre-planned and prepared, I have to do the poo bag at a set time (and that can't just be done at the roadside!!) and after all of that, even just the action of siting in a car for too long can result in my hips displacing. If I can combat all of the above, the final big hurdle is TIME - women's hockey in this country unfortunately has the lowest priority for ice time so if you make it on the ice before 10.30pm at night, you're doing well. My medications means that by 7/8pm my body is exhausted and the struggle to stay away is something I can't even fathom the words for.

EXPLORING EVERY AVENUE

So what does the next chapter look like for me? I'm not sure. My hockey head has never changed, I still see the game like I always did. My fitness is better than ever but it feels like perhaps I'm a square peg trying to fit in a round hole these days. Nothing compares to those golden days and I will not stop until I know I have given every avenue a look - because that's the little girl who at six years old had a dream to play with the best the country had to offer, and I will not let that dream be taken away from me without a fight.

Thank you for reading my first blog post! Keep an eye out for the next blog posts coming very soon to MPT Blog.