Relative Energy Deficiency in Sport (REDS) – Part 2

Last week Johnny van Leeuwen shared the first of a three part series in his personal experience with Relative Energy Deficiency in Sport (REDS).   Below is the second part of his story, in his own words:

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My Fitness is Killing Me

Following on from part one of my blog on an over view of me and on how it can go wrong so quickly I continue this week to the point of just about no return.

After the disappointment of losing the plot and the race at the Coastal classic MTB race I spent most of the following week trying to figure out what was going on. One part of me was saying “get over it Johnny and harden up”.  The other side was saying “it must be something simple I’m lacking, maybe I am just missing a vitamin or something.  There must be a pill to fix this!”.  At this time I knew my food intake was low but it didn’t really cross my mind that it was what I wasn’t eating that could be playing havoc.

Madly I came to the conclusion that the reason I lost was I just hadn’t trained hard enough and was still too heavy – so on with the weight loss I went and more kilometers.

At the time I was always lying to my coach how I was feeling but I did share a bit with him . He was really concerned but took my word that all was ok.  He often would ring and yell at me down the phone to say I was doing too much or was riding too hard.  If he set me 4 hours I would do 5hours.  I think after a while he got clever and made me do 3 hours so I would do 4hrs, which was what I was supposed to do.

Late November 2014 things got a lot worse.  I lost more weight but now was at the goal weight of 86kgs.  Sure I could climb like a rocket and drop anyone but it was when I got home that others didn’t see.

I spent every night changing my bed sheets because I had sweated the bed, sometimes 3 times a night, the bed was completely soaked with sweat.  Every day was 3 lots of washing, I’m sure the neighbors thought I must have had a peeing the bed issue or something.

Yes I was thin, riding fast, eating nothing.  All I could think about every moment of the day was food.  I would dream about eating food. It started to become an obsession.  I couldn’t sleep because I was stressing about sleeping, our pets hated me and my wife was becoming very unsettled by it all.

Our sex life completely stopped not because of her but me.  Women or the thought of touching a woman became disgusting.   I struggled each day to make any decisions at all.  I could not remember what normal life was as the new life now started to feel like the new normal.  By now I made the fatal mistake to shift out of our married bed into the spare room as there was no point in us both feeling like zombies with disrupted sleep.

I woke up a few mornings later thinking what the hell is going on here!!!  You stupid fuck your in the spare room for God’s sake and your life is out of control….but God your fast now on the bike!!!  Incredible I know….

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That morning I made an appointment to see my doctor.  I arrived later in the day to give a few bloods and back a few days later. Finally I thought I was about to get some answers.  He said “well all your bloods have come back normal in fact you are extremely healthy!” I said “Healthy?”,  “Yep, you’re all good, maybe try some multi-vitamin pills”.  Ok then, so I thought I better get another opinion and the same response again.

Next was the naturopath.  We did some tests which I must admit made some sense but I left paying a few hundred dollars for a whole bunch of pills that didn’t really do anything but at least made me feel like I was doing something.

I spent hours on the Internet trying to find out what was going on and struggled to find solid answers.

Just as all of this was coming to the point of just getting too much my wife arrived home with a new job proposal, which was a huge opportunity for us both. This was a stressful time for her and I knew I needed to be strong.  A few weeks of negotiations went past before she committed to the new job and meanwhile inside me I felt like I was dying.

I started to think stuff it, what’s all the determination and weight loss for anyhow.  I started drinking alcohol more as I felt it was the only thing that was making me happy again plus it helped the wife and I have a laugh together.

It was Christmas 2014 and my wife was now on paid leave until her new job started in March 2015.   This was a good thing for me as we were able to spend most days together working on a new property project and training.  She helped me start to eat normally again but by now the damage had been done and I was suffering from the psychological affects of malnutrition.  As I ate food I wished I could throw it all back up again.  So I started my own exercise to eat program where I would need to run, walk or bike enough calories off to eat whatever I wanted and it worked a treat apart from the small problem of no resting at all.

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There is a race that happens every year between Xmas and New Year called the Bannockburn classic.  It attracts a huge field and some top riders from around the country.  I entered like I have for the past 5 years but this time I was as light as around 88kgs and hadn’t raced since Coastal classic so I should be in form.

I started out at a good pace leading the race to the top of the first climb and as we went up into the next gradual incline I couldn’t keep pace.  My Heart rate was through the roof, I usually max at around 181 bpm and I was stuck at around 186 bpm and it wouldn’t go down.  I lasted around 15 minutes at that pace and got dropped big time before bang!  Again I just shut down but this time in a heap on the side of the road.  Again I felt like utter shit and couldn’t make any sense.

The next few days I broke down. I just knew I needed to see some one but didn’t want to be seen as weak.

I was recommended a specific sports doctor who worked with athletes.  When we first meet she was so nice but also she took no shit from me, which I liked.  She knew I wasn’t right but she also new I was a tough red blooded male that needed to be talked to straight but with empathy.

The first question she asked me was do I suffer from depression?  I replied of course not, I have my hard times but so does every one else and you just deal with them.  My family had the odd issue but nothing too major.  Again I got bloods done but this time she wanted to test me for a few more pin pointed areas such as testosterone, cortisol, iron studies and the likes.  A few days later I had a phone call back from her – “Mr Van Leeuwen I think you and me need to talk!!!”.

I was shitting myself, maybe all those 50 cancers I had researched online were true.  Maybe I am dying?  All I knew was when the doctor calls you to meet a.s.a.p. it’s serious.

It was mid January 2015.  I had decided that I needed to maybe stay away from a few races and heal what was going on and clear my head a little and just ride my bike as this was the one thing that made me happy.

The doctor’s visit when I think about it was rather funny in a weird way.  She sat me down and said I have your results back. She showed me all of these numbers that made no sense to me but she said it was bad… like really bad she had never seen such numbers in her time as a doctor.  She said my cortisol level was way out of whack but we needed more testing for an accurate result but my Testosterone level was that low it barely even registered.

She placed a pen at one end of the desk and said this is the max range testosterone level a male can have around 40nmol then another pen in the middle which was an average male of around 25nmol  then the equivalent to women’s level but as estrogen and then there was my score at the other end of the table of 0.3nmol……. “Your less of a woman than I am she said”.

I was sent the next week to a specialist where we went through a huge line of testing.

First off was a dexa scan.  A dexa scan is an X-ray of your whole body and this was done to find out what my bone density was as people with low testosterone are at greater risk of osteoporosis.  The results came back as being below normal and the break down of bone strength was starting. This was a little bit of shock but I was told it could be easily reversed if caught quick enough.

The next was another dexa scan but this time for body fat.  At the time I had gained weight again as I was told I needed to put on some pounds.  I weighed in at 89kgs when I had the scan and my body fat percentage was 5.7%.  At first I thought cool, that’s low and that’s like Tour de France level. But then I thought what the hell was I when I weighed 86kgs then?

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After all of the tests were done I met with the specialist again who gave me the low down. First question he asked me was, do your suffer from depression in which I gave the same answer as before.  He went on to explain that in a nut shell the connection from my pituitary gland to my testicles had stopped working.  Ok, I said, so that means I take a few pills or something and its all good?  No, he said.

The damage you have done we believe could be permanent in the fact your ability to have children maybe taken away from you.  Really?, I said.  First off I was like oh well, didn’t really think I would have kids anyhow, then he asked, how would your wife handle this?  That’s when it dawned on me.   This whole situation wasn’t all about me it was affecting my wife also.

I left the specialist lost and not knowing who I could talk to about this.  Lets face it no man likes talking to another man about his balls.

I was scared at first to tell my wife and I just needed a break away from it all so now being February we thought we should just get out of Dunedin and go on a road trip.   We packed the truck with our bikes and loosely planned out an EPIC trip exploring the south island riding when ever and where ever we wanted.

She had the time off so it was like the last chance we had to be away together for a long time until she started work again.  We just rode each day, ate what ever we wanted, drunk far too much but had so much fun.  It was like being alive again.  I told her a few days into the trip and she completely understood (I don’t think she was surprised) but for me it was killing me.  I was thinking in my head “what a fucking failure, you can’t even provide your wife with a child”.

By now it was getting close to her starting work again.  But before that we had our first race back from having time off and it was ‘Motatapu time’ again in the beginning of March 2015.

I put the pressure on myself to at least place top ten & go under the 2 hour mark.  The weeks leading up to the race were hell.
My mind kept on playing over and over the failures I had created.  I arrived on race day on a soaking wet morning and hadn’t slept in 3 days.  On the drive out I made the call not to race in which I knew made the wife happy.

I stood at the start line and all the friends and fellow racers just looked at me wondering why I wasn’t racing.   I felt like the biggest piece of shit because not only was I not riding but I felt I was letting them down also.   Thank god I didn’t as it was the muddiest race I have ever seen and every one hated it so maybe I dodged a bullet.

The next Monday was the day I wish to never happen to anyone and is why I am writing what I have now in the hope others stop before it gets to late.

Join me next week for the final chapter of my journey as I explain what diagnosis I was given and something that is very rarely talked about but has been shown to affect a large portion of the cycling community.

johnny26

 

 

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