Diagnosed after rhabdomyolysis

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I was diagnosed with McArdle disease at 33 years of age after ending up in hospital following a holiday in Spain, where I became ill with what I now know to be rhabdomyolysis. Luckily for me I was under a great rheumatologist who referred me for a muscle biopsy for McArdle disease and it came back positive. I had always thought of myself as a lazy child, but now I had the answers and knew this was not the case.

A heart attack pushed me to get fit

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I still never really got much fitter after that until I had a heart attack in 2011 and realized I had two options, give up or get fit. I opted for the latter. I live in North Wales and started walking and going up local hills. I found I could get into second-wind and there was no stopping me. I even climbed Snowdon. Then I walked the London Marathon and raised over £3000 for McArdle Disease.

A long-held dream

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“What next?” I thought. I had a long-held dream of seeing Machu Picchu in Peru, but rather than just visit on an excursion, I saw an advert for our local hospice to trek the Inca Trail to Machu Picchu. Myself and my husband signed up immediately.

I knew I would have to be mountain fit as we were due to trek 42 km over four days, at altitudes up to 4300 metres. We purchased our new boots and set about wearing them in. We walked up local hills, we climbed Snowdon, at Easter this year we stayed in the Lake district and climbed Scafell Pike (that was a hard one, very rugged and uneven, coming down being as bad as going up!). It took me a long time to get into second-wind when ascending and I paused many times, on the flat or going downhill was no problem. We just walked whenever we could. I also walked a few 13 mile trips on the flat on my own to keep my legs strong.

Covid delays, then we were off

Due to Covid the trip was delayed several times until on 1st July 2022, we finally set off with 18 other intrepid trekkers from Wrexham. I was excited but nervous at the same time. I was going to be doing this trek with people who did not have McArdle’s and I knew I was going to stick out like a sore thumb. Our group was a mixture of young people and people who were around my age or older. People were all different sizes, and it soon became apparent that maybe I would not be the only one to struggle at times.

Acclimatizing to the altitude

We travelled for over 36 hours on three separate flights until we arrived at Cusco. On day one we were taken on a bus to do an acclimatization trek back to our hotel. This was meant to be easy as it was to help us to adapt to the altitude, which was 3600m. I found this first day quite difficult as it was more hilly than I had anticipated. Fortunately for me, the altitude did not affect me at all, unlike some of the others who really struggled and required support from our doctor who accompanied us during the whole trek.

I spoke to the guides and doctor

The next day the trek itself started. After a two-hour coach ride we found ourselves walking along a river in-between mountains, and we were off! I found this day particularly OK. Although I was at the back for most of it, so were others and I did not feel ostracized. I was so grateful to see our campsite at the end of that day.

Thinking back to previous advice, I spoke to our guides and the doctor as I had not really mentioned McArdle’s yet. It was decided that on day two, when we stopped for breaks or lunch, I was allowed to set off 10 minutes before the rest of the group. This worked so well that when we climbed to the highest point at 4300m over Dead Women’s Pass, I was the third person from our group to reach the summit. I was crying inside, tears of joy, tears of exhilaration – me with McArdle’s had made it to the top of the highest point ahead of 17 other people. No one knew how I was feeling as I stood with the fitter people, we waited over half an hour for the next people to arrive. Go me!