2 months on and I remain somewhat disappointed with Test day 5 and indeed with my ability to stick to a regime I had intended to follow as below
"having broken my fast its I had intend to push on and see what I can achieve with:
Living with Type V Glycogen Storage Disorder. I am quite mildly affected but will try and highlight everyday problems and my adherence to the regime designed to keep me healthy........
2 months on and I remain somewhat disappointed with Test day 5 and indeed with my ability to stick to a regime I had intended to follow as below
"having broken my fast its I had intend to push on and see what I can achieve with:
12 October
I write sitting in
a cafe in Koh Samui, where my keto journey started with a water fast in 2014.
Tomorrow I shall commence another 10 day water fast and this time with the
added incentive of testing the impact with specialists in Copenhagen next week.
Those that have read this blog, or know me on FB, or otherwise, know very well that I am an advocate of a low carb diet for McArdle disease, so to be able to participate in a clinical trial in Copenhagen, over the last few months, has been a privilege. I was the last patient to go through the trial and so my blog now will not prejudice it in any way.
8th August
Up early and excited to be heading to Copenhagen today 8 years on from returning from Koh Samui, exuberant after a fast and my new found exercise capacity. Since then keto has become a patient advocated "treatment" for McArdles so being part of the current clinical study both excites me and has me a little nervous. I have found a good balance between a low carb diet and fasting which enables me to be at my best for playing cricket. With 3 League matches left for me this season I hope I am doing the Keto diet first and nervous that the higher carb placebo diet will leave me jaded. Keen to get to Copenhagen and get the full details.
Ketogenic: 80% fat, 15% protein and 5% carbs
Placebo : 45% fat, 15% protein and 40% carbs
On to the test and 35 minutes of static bike, gradually increasing resistance after 30 minutes. Followed the classic McArdle pattern and after rising rapidly heart rate and pain levels began to decline after 8-10 minutes until levels were increased from 50 watts to 60, 70 80 & 90 where I had to call a halt after a minute of cycling. No issues after the test except saddle soreness...cycling shorts now a priority before my next trip. The diet begins tomorrow with a short escalation period before its full steam ahead on Friday.....
28 August
30 August
1st September
Test day 2 and I felt a lot better than on the prior visit. Managed a significantly Higher watt level at the end of 35 minutes and felt much more comfortable throughout the ride, and not just because of the padded shorts! Plenty of blood taken and data to analyse but hopeful I was on the keto protocol and improved performance was significant enough to show in all the data. Good to have no dietary restrictions for a little while and to sample the delights of Copenhagen....cycle lanes a permanent danger...
12 September
After 10 days of not dieting I am back in Copenhagen for testing prior to diet 2. Feeling fine M wise, know I am in need of a weight loss regime, and hoping the next 3 weeks will not be quite as bad as I fear. Luckily cricket is all but over for the season and as the regime requires no more exercise than normal I expect to be fine. Testing day tomorrow to get through first!
13 September
Diet 2 and everything seems harder. Only a few days in but just carried a box of paint etc. Up a small flight of stairs - struggled and am finding I need to go slowly.
30th September
Diet has become quite painful. I have felt fatigued and have taken to my bed twice in the afternoon in the last 3 days. Not only tired but distinctly fed up. Convinced this is the higher carb leg and wonder if, at times in the past when I have equally exhausted, diet was a driving factor. Certainly keen to get this diet finished, the last test done and then to head to Koh Samui for a much needed fast.
Wandered through Heathrow in a zombie like state heading to Copenhagen feeling exhausted and glad this dietary nightmare will soon be over.
6th October
Despite 10 hours sleep I still felt as if I could lie down and sleep for several more hours. No surprise then that bike results were poor. It was hard just to see through the 30 minutes and at no stage did it feel easy. It most certainly had post the keto diet when I managed 35 minutes, today just getting to 30 minutes required me to dig quite deep. Nothing left at the end to try and increase watt level..NOTHING
Performance wise my in keto max was nearly double what I was able to achieve this time, with so much less pain, and the struggle throughout the session is not something I would want to regularly endure. It's clear to exercise comfortably and at my best I need to have a low carb diet and ideally to exercise fasted from the night before and after black coffee. Next step for me is to get the carbs out of my system and reset completely
If I felt like I felt today every time I tried to exercise then I would give up.