As I’ve mentioned before, I go through this life with a constant companion of Fibromyalgia with an occasional companion of Chronic Fatigue. I haven’t really blogged much about it, but that’s simply because it’s not a major focus in my life – as it’s been with me since birth. But because of that, I’ve learned a TON about living with it – and often see the advantages of lessons it’s taught me. And a friend mentioned to us recently about a business opportunity that opened up for him – the people were selling their business simply because she was diagnosed with FM/CF last year. And they saw no way to continue – which has bothered me a lot. Maybe being quiet about my life with FM/CF is wrong – maybe sharing more about it here will help others realize that while chronic pain is definitely not fun, it doesn’t mean life stops. So, I’ll be adding in a new category here: Life with Fibromyalgia.
Borrowing the phrase from my friend Patrick who deals with Brain Injury, you just Enter Life as Fully as Possible Each Day. It’s all anyone can do who has a chronic illness or not.
I have lost zero pounds, but I think I’ve lost some inches as my jeans are fitting more loosely these days. But I didn’t measure, nor will I since the actual shape of my body or the pounds I weigh isn’t my main priority and looking at the numbers can actually become a distraction that might make me lose sight of my goal. Energy to do more is my focus. Yes, I’m hoping my shape changes for the better as I go, but that doesn’t matter to me nearly as much as being able to do all I want to do. I want to enter life more fully than I am now.
Staying in shape with Fibromyalgia/Chronic Fatigue has a different, rather sharp edge to it. The first few minutes of exercise can be excruciating – but as far as they know it does no damage and eventually goes away as you keep working out. And it seems to diminish for me over time as I move more regularly. Chronic Fatigue adds in the trick to gaining energy is to do more, but don’t overdo it. And it’s a pretty fine line. You see, I CAN do most anything, but the price I pay can be steep. You think credit card debt is bad? Try physical energy debt that’s compounded hourly with added pain (up to 8 or 9 on the pain scale at times) to boot. The worst type of loan shark you can think of – because it’s easy to just do and not even know you’re well into tomorrow’s or next week’s energy. But on the flip side, it’s also motivation to try and stay on top of my energy levels. I’ve been a bit lax on that this past year and it needs to change.
In the fall of 2001, I paid a huge price for an event I helped to host and attended. A five year price. It took that long to come back. I would try to do more only to find it knocked me down farther. Finally, I decided to try a pedometer. Just focus on the number of steps each day. Figure out how many steps I had before going into further debt. To start with, it was a shockingly low 3000. I had to plan ahead trips upstairs and down. I had to think about how to vacuum using the fewest amount of steps. Shopping could wipe out two days worth of steps. I got a handicap parking tag – and tried to ignore the dirty looks I got because I didn’t ‘seem’ handicapped. I had to quit the job I was doing at that time (machinist-CNC operator) because standing too long was also a part of the problem. And there’s this wonderful guy I married who ignored things not done or just jumped in and did whatever was needed. We’ve talked about it and he doesn’t mind simply because I don’t take advantage of his helpful nature. And because of that, he knows I authentically need the help. In a way he also lives with FM/CF, but in the respect that he has to share me with it.
Eventually, over about a five year period, I went through a couple of pedometers, but got up to 10,000-12,000 or more steps a day. On a day walking the geyser basins in Yellowstone, I’d hit 25,000+ but didn’t crash for more than that evening and overnight. By the next morning, I was tired, but not exhausted, and still functioning. That was when I knew I was finally back to a good energy level.
So now – I’m not down as far as I was in 2001, but I’m also not where I want to be. Inspired by my friend, Patrick, I’m embarking on a journey to barefooted health. Knowing how slowly FM forces me to pace myself, for a year I simply went barefoot as much as possible and found shoes (Born shoes) or wore slippers that asked to fit to my feet more than asking my feet to fit to the shoes. I was dealing with plantar fasciitis and figured I would just keep it at that level until that went away – which didn’t take nearly as long as I thought it would. It’s been gone for at least 6-8 months now, and this spring, I’ve added in the treadmill – barefoot. I don’t have any specific amount of time on it, or speed, or distance – just until I feel the muscles starting to talk back. Some days that’s 5 minutes, others it’s 20 or 30.
One day a couple of weeks ago I tried a bit of running on the treadmill using the foot placement technique needed for barefoot running at around 1:00 in the afternoon. Holy Love of God! Patrick had warned me that my first ‘run’ would amaze me. And to not overdo it. I literally ran/walked on the treadmill for about 20 minutes feeling energy surging through me! I can’t ever remember feeling that type of energy in my life! But the muscles in my feet starting to feel the workout. So, I stopped. Sort of. The energy surge kept up so long, it took me until 1:00 AM to get to sleep. Patrick had mentioned how a short run – even as short as 100 yards out and back – helps his brain energy, but I never imagined it would work like that for me!
Since then, I’ve been on the treadmill or jogging in place on various surfaces barefoot most every day – and since getting the pedometer a week and a half or so ago, my first week averaged right around 8100 steps. This week, I hope to see that increase. I’d like to see a 10,000 step average, but each day is unique and we’ll just take it as it comes. By averaging the steps on a weekly basis, it also keeps me from obsessing on that number. I’m just looking for an overall increase, which means I have wiggle room. Nor do I expect each week to increase, but I do want to see the general trend to an increase. It’s a part of being gentle with myself and slowly reshaping my life to enter life as fully as possible.