Hello again

It’s been a long time since I have written a post. I hit a really hard time and depression set in for a long haul. I stopped coaching, had several stoppages to training, was being bullied at work and fighting to get myself out of bed each day.

Fortunately I have a 3 legged fur kid and I have to get out of bed to feed him. So that at least was a start to the day.

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I was going from injury to illness to the next injury and so on. I wasn’t sure if I was going nuts or if there was really something wrong. I know that when I first got sick with the tumor I had in 97, I knew something was wrong when no one (including medical staff) believed me. So I kept working with my GP to try and figure it out.

I tried training for a half ironman but I was stuck in this vicious spin cycle from injury to illness. Some “friends” were getting stuck into me telling me I couldn’t do it because I wasn’t training as hard as them and they know what it takes and it would be irresponsible for me to get out there and try. I just wanted to try. I knew if I could get out there and get past each time cut off, that I would finish no matter how slow.

Like my physical battle wasn’t hard enough I now had a mind battle in addition to the one I was already fighting. I was in pain. Some of the worst chronic physical pain I knew and despite hating medications, I succumbed some days and took pain killers. When it was really bad I also had to take sedatives to sleep.

Three weeks before my event, I woke in the morning from a sedated slumber to extreme pain in my uninjured shoulder. When I got to my awesome physio the next day, I got the bad news that it was dislocated at the sternoclavicular joint (where your collarbone connects to your sternum). Race over.

My event was in Cairns and i had paid my airfare and accom already so I packed all my race gear including my bike and went anyway. I had booked in with a physio up there in the hope she could pop it back in and i could still race. 

Turned out she was also part of a charity I am a part of (Tour de Cure) & after discovering that when she gave me the bad news I trusted her. My dislocation was not going back in and was sitting over my sternum which put me at risk of cutting off my oesophagus  with any further movement. I was put in a sling and given instructions to give to a hospital if i needed it….

Instead of racing I was put in a sling and i officiated. This was a good thing because I met Sharn McNeil and over the last 12 months I have picked myself up drawing strength from her and John McLean.

Sharn and John both spoke at the pre race athlete dinner. John was training for the Nepean triathlon when he was hit by a truck and snapped his back. John went on to compete at Kona finally meeting all the cut offs in his third attempt as a paratriathlete. Remarkably, John has started regaining feeling in his legs and at the dinner stood out of his wheel chair. Here was a man who was told he would never walk again now standing and in training to complete the triathlon he was training for 25 years ago. 26 years on from his accident, John completed the triathlon as an able body athlete.

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A beautiful photo taken by the wonderful Photo Ninja Delly Carr

Sharn also spoke at the dinner. 2 years ago she completed the Cairns half ironman. She planned to come back and do the full ironman with her friends when she was diagnosed with an aggressive form of Motor Neurons Disease (remember the ice bucket challenge?). Sharn is a nurse in Wollongong but her body is slowly slipping from her. As she loses more and more control over her muscles she will eventually choke on her tongue.

Sharn and the Sharnie Army were in Cairns to get her through the Ironman. She sat in an inflatable Kayak while her friend Craig towed her through the swim. She was then helped into a recumbent bike attached to Craig ‘ s and they completed the swim with her team keeping on top of her meds and nutrition needs. For the run, Craig pushed her in a wheelchair until the end of the finish line red carpet where they helped her walk across the line. I stood there in the pouring rain with loads of people to see her become an Ironman.

After listening to Sharn speak, I got to meet her when they had to pull into the mechanic with another flat (they had several as did many athletes in the incessant rain. She was so beautiful and kind despite all life was throwing at her.
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Sharn helped me get the strength to start investigating what was going on with me. After a big cry to my GP, something I said clicked. She asked how many partial and full dislocations I’d had recently. When we went through it we knew of 6 in 4 locations within 12 months. A quick double check on her computer and she had pieced it together. Well part of the story…the injuries were because i have a genetic condition called Ehlers Danlos. It has since been confirmed by three different specialists and is an answer to why i have chronic pain, digestive issues, extreme fatigue and a large portion of why i was getting bad/chronic migraines. I was still waiting for a CT guided cortisone but I suddenly had some light.

The CT scan showed my collarbone had been dislocating for some time. So much so there was a spur under the bone that was preventing it being put back into its groove properly. To take the spur off would limit my range of motion. To leave it makes the joint unstable.

Faced with needing to strengthen joints, but also keep the muscles plyable I got myself onto a yoga study at uni. Lucky me got selected in the control group…no yoga. But in talking to my GP again (while I was getting medical clearance for the study) I asked one little question that made her ask several more. She now had a possible answer to the illness side of the puzzle….she thought I might be insulin resistant. I had to do blood tests for the yoga study so we added in a glucose challenge test. At fasting overnight my insulin levels should have been around 6…mine were 25.7, one hour after drinking the solution it should have been around 60…mine was 248. After two hours it should be dropping below 50. Min was 206. My pancreas and liver were getting slammed. My muscles (including my brain) were starved of glucose because insulin couldn’t bind to it to carry it around my body to feed it. End result, I had a growing waistline that is toxic fat around my organs. I am not diabetic but I was damn close to my pancreas shutting down.

This was the other source of my fatigue and chronic pain and other likely cause of the migraines (which are much less frequent now).

I am still rebuilding my body to a healthy state and i am still finding it difficult to go slow and steady but I really do have a bright shining light leading me out of the pit of despair I have been fighting to escape the last couple of years.

John and Sharn aren’t giving up on finding answers, so nor am I.

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