I’m a Tenpin Bowler – usually at this point I hear fits of laughter from whoever I’m talking to. Followed by being told it’s not a sport.

Yes, really, I go to Tenpin Bowling competitions. Yes, it’s a sport. And yes, it’s a source of constant disappointment that people react that way.

I have been a bowler since the age of 12 – and there hasn’t been a minute I haven’t loved it. While I was never “the best” I was one of the higher averaged young girls in our region. I was offered several spots in national teams that I had to decline because of my poor financial situation and schooling commitments.

Anyone who’s operated at a high level of the sport knows that there comes a time where you have to make a determination. Am I going to be able to just bowl and making a living off it? Or should I set myself up for the future. I chose the latter and while I’ve had pangs of regret – it’s become ever so clear to me that it was 100% the right choice.

I’m 34 now. I have been bowling for over 20 years. 5-6 years of that time I was bowling 6 times a week. While bowling looks like a gentile, pseudo sport – I can assure all who read this that the impact it has on your joints… is neither gentile, nor pseudo.

One of my first brushes with Crohn’s was at the age of 16. At that time I was riddled with injuries. I had a severe problem with the musculature and tendons over my right shoulder (that never really healed), bad tendonitis in my right arm and persistent pain in my hands and elbow. It got so bad I actually took myself off to the doctor. He did his usual thing of trying to brush it off as me being a hysterical woman… but decided to send me for scans all the same. The scans revealed swelling on my joints and I was pinpointed for early onset arthritis.

I was plopped on a course of Celebrex which they discontinued after 3-months and I was left in discomfort, scabbing extra repeats from family and friends when and where I could. The GP gave me some one liner about Celebrex leading to heart problems and be being too young to stay on the drug permanently (I wonder, to this day, what my age had to do with it). This guy was totally full of shit – I really hope at some point his license was taken off him so he couldn’t do this to another person.

No further investigation was done – even after my last lot of annual pathology had some unusually low vitamin counts.

I continued to bowl as much as my finances would allow until I was 20. Then with quitting jobs to be able to finish up university based internship I was more concerned with putting food (and ok, fine, alcohol) in my mouth than sending a ball down the lane. My two best friends (who were really family) I met through the bowl – so I continued a league to stay close to them, but that’s all.

By this stage I’d been bowling at a high level for 6 years with a yet unknown Crohn’s Disease. I can honestly say, the damage was done.

After my diagnosis in 2010, I was put on a maintenance drug called Mercaptopurine (after a failed trist with Imuran). While I’ve never been sure what it’s done for my bowel – I’ve known with certainty it’s helped my joints. A great deal. After just 6 months on the drug I was running – something I was never able to do before because of the pain. I loved it.

Like all good things though – it wasn’t to last. While my joints were being helped immeasurably by the Mercaptopurine – it was trashing my liver. My dose went from 100mg… to 75mg to where I am now on 50mg. Good news, my liver is coping far better on this dosage. Bad news, my joints are not. When you’ve had pain removed for a while – when it comes back, well, it’s pretty hard to explain. Over the last 18 months, after my decline in dosage, much of the pain I was in has returned. And my joints – well, the swelling and deformities have seemingly hastened to catch up on lost time.

I still bowl. Many of my old friends have returned and it’s my outlet. It’s the one thing I do every week – regardless of how I feel. I force myself there. I threatened to quit last year over a silly political row (like most sports bowling is full of overly inflated wind bags that don’t have a good view of what’s actually going on in the sport from their sparkly crystal tower). And I had to ask myself – who am I without it? It’s been a part of me for over half of my life – am I the same person if I don’t do it anymore? This is a question I couldn’t answer – and I don’t know if I cared to at that stage either.

I started loosing feeling in my fingers in August last year – but due to our financial circumstances, I couldn’t do anything about it. Changing grips – well, there is a price tag. My joints continued to swell… late last year, just before we went to New Zealand, I noticed I could no longer make a fist or get a grip with my right hand. I’m sure it wasn’t that sudden, I’m sure it was gradual – but there I was, trying to help Gumtree buyers to our door with a desk we needed to sell … and I couldn’t lift the desk. Not from lack of physical strength… for the fact I couldn’t hold the actual desk.

Over Christmas and into our holiday I had a total of 7 weeks off bowling. This kind of rest helps reduce stress on joints and old injuries.

When we got back from overseas – we came back very grateful. And we came back knowing we needed to tackle some issues that we left in the air before we flew in early January. My joints being one of them.

My GI sat up in his chair when I mentioned “pain” I don’t often bring it up – cause, what-cha-gonna-do? Add a bit of this, that in turn breaks that and makes you feel worse? He was cross that I hasn’t kept him in the loop regarding my worsening joints – but, I’m 34 and I have a digestive disease that prevents me from taking many of the pain killers that would help… I didn’t see the point of us just sitting there staring blankly at each other.

The result? I’m going back through rheumatology, again. Last time I met with them, the Mercaptopurine was working I was experiencing less joint pain and the deformities had slowed to a stop. They wanted to taylor my physical activity program to reduce the amount of stress on the key joints impacted by Crohn’s disease (hands, elbows, back)… they wanted me to quit my sport. They wanted me to quit when I was feeling good, so what are they going to tell me now?

I’ll be honest – I’m the most stubborn person in my life. No one is going to get me to do anything before I’m ready (hence the surgery happening 3 years after it probably should have)… and I’m not ready to give away this part of my life. I’m acutely aware I’m going to be in an increasing amount of pain… because I’ve been dealing with it for a year and a half now. And I do realise there will come a time where I will physically not be able to do it anymore… but that’s then, it’s not this week, it’s not right now.

My best friend (family, really) and coach spent hours with me to try and take the pressure off my joints – but the way he looked at me. You know, I’ve never seen that before. He usually looks at me like a normal person – our physical issues don’t play a part in our relationship. But while he was measuring my hand to change my grip, as tears streamed down my face from the pain of him pulling and pushing on my inflamed joints, he looked at me like he felt sorry for me. I don’t know how to feel about that. I hold the record of having joints worse than his 70 year old clients – and he’s pushed my drillings to the point that in another 12 months there might not be anywhere else to go.

I feel like I should be starting to get my head ready for the day when I have to walk away, not because of the politics or the pain or the Crohn’s or any of that. But for the fact I’ll no longer be able to hold onto a ball to send it down a lane. But I can’t. Every time I try and get my head around stepping away – it feels like I’m cutting through one of my own limbs. It feels horrible, unnatural. Like it’s part of me I shouldn’t be removing so heartlessly and with surgical precision.

… and this is the hardest reality to explain to people who don’t have chronic health problems. You give the issue a name – fantastic. But that name is like… a surface description of what’s actually going on with your body. I can only really use Crohn’s as an example. The people that know the name think I have the runs a lot and that I have a “special diet”… and I’ve stopped fighting that conception because it’s never one I will not overcome on my own. Crohn’s isn’t just about the runs and diets and colonoscopies. It gets into the nooks and crannies of your body, your joints, your skin, your eyes, your mouth… it starts making you feel crazy because – how can you constantly feel sick and in pain, but still function, right? Chronic illness is deceptive and evil and two faced. And while you remain so steadfast and committed to not letting it run your life – there are some aspects that it invariably does. There are some things you have to give up along the way. And it’s not your fault, or your choice and you can’t just “overcome” it. It doesn’t make you weaker or less of a person. It doesn’t mean that the disease is “winning”. It just means… you’ve lived enough life to better devote your time and energy to a battle you have a chance of coming out on top of.