As a lifelong overachiever one of the hardest things I find with recovery from CFS is acknowledging the slow progress I’m making. I don’t want to improve at turtle-pace I want to wake up recovered. I want to progress in leaps and bounds and achieve things like I used to, glacial pace doesn’t please me at all. The thing is though, with this illness, that’s not how recovery works. I have had to change my outlook and mindset and not expect perfection but rather celebrate every step I take as progress, as a step towards full health. Instead of “practice makes perfect” I’m going for “practice makes progress”.
I went to a tai chi class the other day, something that has been on my goal list all year and I was so disappointed when I had to retreat to bed for a few hours after it. I eventually checked my frustration and realised I was hoping to cope perfectly with the class, to tick another box off and find a new goal. CFS doesn’t work like that though. For someone who used to play lacrosse a tai chi class didn’t seem like much; the fact that the rest of the class were in their 60s and 70s also made me feel like it should be a breeze. Physically I actually coped really well, and had no pain or wooziness or crushing fatigue in the class, but it was mental fatigue I hadn’t factored in. Following the instructor in a sequence of movements I’d never done before, trying not to mess up because that’s how I roll, meant that I was cognitively screwed by the time I got home; I was mixing up words and barely able to tell you my name – it wasn’t a pros and cons list but rather a cros and pons list. I got angry and frustrated and moaned about how annoyed I was: I thought I’d be fine to do the class, but clearly I wasn’t; another thing I couldn’t do, when would I ever be better? Happy thoughts hey? I eventually got my head around what had happened, after a day feeling sorry for myself, and realised that I have made huge progress physically thanks to my walking and yoga and daily exercises, but cognitively I haven’t improved much, and that’s what I need to start working on. The next day I posted this pic to my Instagram and shared it with the CFS Health inner circle with the caption: “Went to a tai chi class yesterday and it was such a good taste of normal by being in a class again! I was the youngest in the class by like 40 years but I didn’t care I was so happy. Physically I was fine but mentally I was concentrating for 50 mins was a bit too much for me – terrible brain fog today. Next time I’ll finish before the end and arrange Mum to drive me I think .”So I had a plan to handle it better next time, I was acknowledging how far I had come physically and could see the whole process as an examination of progress, and not be expecting everything to go perfectly.
My friend Gemma also has CFS (spoonie sisters!) and after I was grumpy about another day I’d expected to be ok and was moping as I was feeling awful she said, “it’s all data gathering for your recovery.” I really liked that. I was testing out what I could and couldn’t do, and I can never know where my body is at without trying it. Another friend of mine is a research scientist and was working on a study on prostate cancer. I asked him if he thought he would find the cure and he looked at me sideways and said, “Oh I won’t find the cure, I’ll just find out what doesn’t work, which will help the next person as they won’t need to try my method.” I think that’s a really interesting way to look at recovery. While I am determined to achieve my overall goal of recovery I do need to see what doesn’t work, what I can’t do and what I can do, and use all that information for my recovery.
I was feeling like I needed a bit of “social training” a few weeks ago, no not walking with a book on my head while reciting which fork to use for the fish, but rather training myself to handle social situations with my CFS and not end up crashing after every one. I decided I was capable of an outing every day for five days. And you know what, I did it! I had coffee with two different friends (I mean a chai latte as I can’t handle coffee), I voluntarily went to that sapper-of-all-energy places – the supermarket, I drove myself to and from my acupuncture, physio and leg waxing appointments and had great conversations there as well. I took myself out for coffee just because and I left the house each day, driving between 15–30 minutes each way. Did it all go perfectly? No it did not, but did I feel like I was making progress – hell yeah I did. I was having afternoon tea with my friend Tegan in a cute café in Inverleigh and loving our catch up but about halfway through some wooziness struck. The world was not in focus anymore. Shit, I thought, I still need to drive home, what will I do? What I did was calm down and go to the café bathroom, where I sat on the toilet seat lid for 5 mins until the wooziness went away. And then I was a-ok; I used not to bounce back like this, this was progress! I could easily have focussed on this as failure, I hadn’t been ok the whole time, but instead celebrated the fact that I’d been social and out with a friend and again posted to instragram to make it clear to myself that I was achieving still, that I was making non-perfect progress. And the best thing, the next day I went out again and had a chai latte and had no fatigue from the day before. Awesome.
Just like I write this blog in stages I have been progressing not in leaps and bounds but in small measured and controlled increments. This is my exercise chart for each day, did I start with 30 burpees, 40 sit ups and 20 push ups? No I did not, I started out by stretching daily and foam rolling.
This is no bootcamp, there is no pushing myself in this graded exercise regime, it’s about finding what I can do and slowly adding to it week by week. The same with my yoga practice, I literally started with one sun salutation, now I can do 30 minutes of yoga at home and hope to return to a class one day soon.A big goal I have had for a while is to ski again in winter. I almost went last year but decided I wasn’t physically strong enough for it, but I’m thinking this winter I might just be able to do it. Will I be bombing down black runs from first to last ride on the lift? No I will not. Will I be carving down moguls and ungroomed tree country, most likely not. But I think I’d be capable of one hour, maybe two, maybe even a morning of skiing. Sure, one day would be brilliant, but really I just want to click my boots into those bindings and feel myself slide down the snow. It won’t be perfect – hey I was a messy skier before I got sick so there’s no chance of that – but it will be progress and I will be the happiest person on that mountain!
The other day a good friend was bemoaning to me about her lack of fitness and said her boyfriend hadn’t encouraged her when she’d done a lap of the local park and had said it was easy. She was pissed off at him for it, and wanted my take on it. I thought to myself, well for CFS person that would be a big deal, but for someone like her boyfriend who is really fit I get where he was coming from. I told her she needed to celebrate things herself, to pat herself on the back for going for a run and not expect others to do it; regardless of how long it was she’d run for it was still more than the day before and that’s what she needed to focus on. I thought to myself, gosh if I had to wait for external validation for everything I achieve with CFS I would feel like I was getting nowhere! As I’ve written about before it’s about being your own cheerleader, not looking for others to do it for you. Sure it’s really nice when they do, it feels great, but it’s so good for you to do it yourself.
And it doesn’t have to be mountains you’re climbing, I told myself I was doing a good job when I managed to clean a mould-infested kitchen the other day. Yes I was annoyed with the person who’d left a moulding stack of dishes in the dishwasher and had forgotten to prop open the powered-off fridge, boy was I annoyed, but after venting to my spoonie buddy Gemma she pointed out that it was huge that I’d managed to do all the cleaning, a year ago there’s no way I could have de-moulded a fridge and dishwasher. I celebrate going to bed on time, remembering to have preventative rest, for eating healthy meals when all I feel like making is toast. If I don’t celebrate these things I feel like I am stagnating in this CFS world, and that’s one dark road to go down.
Many people criticise the carefully curated social media lives we present to the world, but for me Instagram is the perfect place for me to share my wins with the world. I make myself acknowledge when I’m doing the right thing and making smart choices – whether that be upping my graded exercise program and acknowledging my progress with a photo of the new gate I’m going through, or sharing the fact that I slept in a sleeping bag last night as I was too fatigued to put sheets on my bed. I could get annoyed about the fatigue, or, worse, push through it, or I could accept it, make a smarter choice and acknowledge that I’m doing the right thing. A year ago I would have forced myself to make the bed, ignored the flashing orange warning light and then well and truly crashed on the other side. And what’s the other side for me after using my sleeping bag night last night instead of pushing through the fatigue barrier? Well, I’m writing this, that’s progress!