Training through chronic illness - living life on the edge.
I'm living a double life.
My superhero persona goes to the gym and lifts enormous weights. She's vital and has her life together. Endless to-do lists in a bullet journal, juggling work and kids and being an athlete and performer with theatrical effortlessness.
Then there's the secret side people don't see, where I lie on the sofa in my flare day leggings and fleece, clutching a cup of tea for the slight relief the warmth affords my stiff, clawed hands.
I know I'm not the only one. I know a lot of athletes living with chronic illness. Outwardly fitter and busier than the average person, inwardly wracked with pain and fatigue.
There are two ways people tend to interpret this. Either we are not as sick as we claim, or we are stupidly putting our health at risk doing sport that seems counter-intuitive to our well being. The reality is a lot more complicated. I wanted to formulate a decent answer to "why do you do this to yourself", so here goes....
Training as therapy
I have Ehlers Danlos Syndrome and Fibromyalgia. Both are conditions that cause chronic pain and fatigue, but both also have "exercise" recommended as part of the management plan. There is a fair bit of discussion about how that should actually happen, to the point the some types of exercise (like yoga) are both widely recommended and warned against.
The basic recommendations are walking and strength training (to stabilise joints). And that is exactly where I start when I am working with personal training clients with hypermobility or similar chronic issues.
But everyone needs a why, and I can honestly say that things like "not falling over so much" just don't stand the test of time when you are doing theraband exercises 5 times a day. If we are going to be consistent with our training, we need...
- a programme we enjoy
- goals that feel valuable, with frequent reward
- a sense of progress
- habits we can build into our lives
- grit and determination.
So my bodyweight and theraband exercises became freeweight exercises, and freeweights became powerlifting Walking became running. Not overnight, but over several years of gradual, careful, patient progress.
I started to understand what I could be capable of (and what I clearly wasn't capable of...) I have far fewer subluxations and dislocations, because I am stronger. It works.
The side effects of training
Training makes me feel good. The post exercise endorphins mute my screaming central nervous system, if only briefly.
The achievements and little wins, getting to feel like a competent badass. They keep me showing up week after week. For me it's worth the work.
Even the post exercise muscle soreness feels good because I worked for it. It turns pain from "what did I do to deserve this" to "I did a great job today".
The price of management
Of course it's not that simple. Exercising takes energy (or spoons), Energy that I might want for stuff like, cooking dinner, doing a grocery shop, going to work and earning a living, that sort of thing. I have to decide what I am going to prioritise. Then ultimately, the benefit of exercise, is that it keeps me well enough to do more exercise.
When I started, training took more out of me than I got back, but over time it has levelled out and my increased fitness and vitality pays off, but I still feel it's mostly a "spoons neutral" process.
I could live at my desk, use splints and walking aids when I need to move and ultimately have no more or less "spare" energy (but a lower turnover). I've been there. It's OK, I understand and respect anyone's right to do that. Having boisterous children and loving stuff like dance and being active outdoors makes it worthwhile for me to invest in the ability to be more active.
I like feeling good in my body. I love my physical capability. I am prepared to make sacrifices for it. Also I can eat a lot more cake this way.
Pacing and recovery
Some of the powerlifters I speak to are lifting 5-6 times a week. I don't. I train 3 days a week with great programming from a coach who understands that progress isn't about training until you drop as much as possible.
On top of that I teach 2 fitness classes and one dance class a week and do a short cardio session *if* I feel it's a good call. In between I rest. I manage my day around making sure I keep mobile, but low key, sleep well, eat well and give myself the best opportunity to grow strong ready for the next session.
Managing my own work schedule makes an enormous difference for me. I can deliberately put pacing breaks in my day to let my nervous system wind down. Managing my tasks in an organised fashion means I get less stress from late deadlines and panic over forgotten responsibilities. Low stress hormones means better recovery and less for my systems to have to handle.
With this in mind I have also got really good at boundaries. I used to do everything for everyone because well, I'm a helpful kind of person. Now I have to think carefully, I am literally donating my life force and I am very careful about where that goes!
The relentless habit
A sad truth about EDS, is that gains are slow and losses are rapid. It takes a long time to build connective tissue strength because my connective tissue is always going to be lacking. But also, if I stop training, I lose strength very quickly. I am well aware that I am potentially a few weeks "off" away from being back with serious mobility problems.
It's also very easy to decide not to train because of injury. I have a sprained wrist right now. For most people I would advise total rest, but if I rest through every injury, I would always be resting, so I work around it. I can still train if I splint my wrist, or use stiff wrist wraps.
I subluxed a kneecap a couple of months back and it's been tricky since. I've asked my coach to drop all lunges out of my programme. I can still squat, it's just the unilateral loading that is problematic, so there's still squats and leg press in my routine, building much needed stability around the joint.
I have to make pragmatic choices about when to train and when to take time off. I don't take time off when I feel a bit tired. I make sure my recovery and nutrition is on point. I pressure myself in ways that I couldn't and wouldn't pressure anyone else, because I can feel exactly what is going on in my body, and I have learned to read it objectively. I have to figure out the trade off between losing a training session, or potentially triggering a flare from overwork.
That's not advice there, it's not for everyone but it's what keeps me in the game.
Today is hard. #fibromyalgia is rough and I'm having a costochondritis flare that makes bracing feel like a kick in the chest. But I've put my #biggirlknickers on had a #coffee and showed up at the #gym to lift a gnarly #5x5 at 70kg. Albeit with a bit of whining at @ryangriff_projectbarbell, who showed me a #dog in his feedback video. What more could you ask from a #coach? #powerliftingwomen #powerlifting #eds #edsathlete #chronicillness #showup @trainstationgyms
Being a health bore
If I went back in time a few years and told my past self what my nutrition and rest regimen looks like now, she would laugh at me and say "no way". But over time I have been figuring out what feels best in my body and I have started to realise that some things just aren't worth it.
I gave up wearing non-practical shoes, because I wanted to be well for dance. Now I've come for other lifestyle factors.
A couple of months ago, I stopped drinking alcohol completely. I've not been a "drinker" for a long time, but I realised that even the odd glass of wine was wiping me out the next day, and it's just not worth feeling that awful for.
I go to bed by 10.30pm, every night. I am boringly stringent about this. I can't function the next day otherwise.
I haven't "cut" anything from my diet, but I do make note of the foods that make me feel well and the foods that don't. I need enough protein and vegetables. I have to drink plenty of water. Stodgy, refined carbs don't sit well with me and too much of them make me feel gross. I accept this and act on it, the result is eating a healthy and minimally processed diet. I'm not strict with myself, but most of the time I recognise that going "off plan" is going to make me feel ill, or compromise my ability to train, which is important to me.
Sacrifice and balance
Dropping some things has been easy, others less so. Recognising that I can't spread myself too thin means harshly pruning back on many aspects of my life. Being well for my clients and family comes first. Anyone else wanting my time or energy has to take a ticket and might have a long wait.
I have had to make ruthless and sometimes painful decisions that prioritise what is essential and most important to me.
I once told my occupational therapist - I walk a fine tightrope in order to be this functional. I can't afford to take on extra load, look around at the scenery or stray off the path.
But it's my path, and I love it and it's totally worth it.
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