I recently found myself in a CFS setback, back to being housebound and some days bedbound. On the other side of this setback though, having returned to my baseline, I can now see that it was a good thing, that those six weeks of fatigue and confusion and pain and grossness were actually worth it. Why? Because I realised my health is actually improving!
So, in this setback I hadn’t just hit the wall; I’d leapt at it head-on and fallen to the ground with its bricks scattered on top of me. The biggest baddest crash I’ve had in a long while and I had no idea what was going on at first. Oh, I had tonsillitis, you’re supposed to be feeling crappy with a viral infection, this won’t be fun. And just as I was getting over that, starting to feel vaguely normal: Oh, my body is in withdrawal from a prescription drug, right, yeah you will feel terrible for a while! It was like someone had come up to me and pushed me back over the cliff I’d been slowly scaling for the past two years and it felt like I was right back getting diagnosed with CFS and had no idea what to do. Showering was exhausting, I had no appetite, I was in pain and I had such bad brain fog that I was wearing clothes inside out without realising it, burning my hand making a simple cup of tea and getting my age wrong when asked.Then came the inevitable wobbly and confusing stage of “can I or can’t I”, trying to figure out where the hell my baseline had gone and what I could do in a day without curling up in bed in punishment for it. Should I try washing my hair? Should I call a friend on the phone? Should I walk to the front gate? Woah risky business there… Nope, you should not have done that, you should definitely not have done that.
About halfway through this I started to notice things about my recovery; it was the same picture I was looking at, I just changed my focus so I could see different aspects of my life. Instead of feeling indignant that the fatigue gods had smited me again I could actually see how far I’ve come in over two years. Those six weeks were shit, but that’s what I used to feel like ALL THE TIME! Not anymore! Barring this setback, these last six months have seen periods of okayness, goodness and even greatness mixed in with flare ups of chronic fatigue, but not its sweaty painful awfulness every minute of the day.So, with this in mind I sloughed off any residual anger and feelings of it’s not fair and focussed on gratitude and enjoying the things I can do, not what I can’t do. Through my online connection with chronic fatiguers around the world I know some are far more ill than I am, many are bedbound, more are housebound and lots feel like they aren’t getting anywhere with their recovery – here was evidence slapping me in the face that I had been getting somewhere, sure I was a housebound hermit for six weeks but I could see how far I had come, and valued enormously the remnants of health I had.
My attitude about this setback made it so much easier to deal with, compared to the last time I felt this bad. Sure, I was still a grumpy sweaty monster (which my parents will attest to ;)) but not a dejected hopeless and morose one! The fact that I’ve perfected my rest days over the last two years means I can do it easily, so I bought some new DVD series on eBay, downloaded some audiobooks and put on my favourite pyjamas, ready to rest and recharge. I resigned myself to a few weeks of television and small meals and baths and heat packs and painkillers and drooling in to my pillow. I let all three dogs inside to keep me company, cancelled plans, eschewed all social contact (even book club, which I never miss – gasp!), hid away from loud noises and coped with my days of nothing without getting cabin fever. The reason it was easier this time? I knew it wasn’t forever!Even in the gross symptoms I could shift my focus to see the good side. The ten days of withdrawal from a drug reminded me that I no longer get headaches every day, have a lot less muscle pain and no longer deal with nausea several times a week (I had to ransack the house looking for stematil as I hadn’t bothered restocking it!). This withdrawal period highlighted how bad my anxiety can be and how awful adrenaline surges feel. It felt like someone was shooting me up with a stimulant and I’d be on edge and jumpy, changing direction like I was on a sports field again when really I was just going back to my room to get my slippers. It showed me how awful that feeling of running on adrenaline is, and just how exhausting it is. Now, on the other side of the setback I am very aware of what that feels like and can check in with myself and ask, is this real energy or adrenaline? Do I need to be this hyped about finding a car park? And when the adrenaline ran out and I had the feeling that someone had unplugged me from my power source I remembered how this used to feel normal, this all encompassing fatigue that makes even your shadow feel heavy, and that it’s not anymore. That is recovery!
A few weeks on and I’m still getting flare-ups of course and pacing throughout the day but the new focus I have is not on the symptoms and the bad times but enjoying the good. On Friday I drove my car for the first time long distance in over two months and I couldn’t wipe the smile off my face as I zipped through the countryside. What freedom! I’d relied on my parents driving me most of the last two months and here I was grinning at the novelty of swooping in and out of the curves of a roundabout! Vroom vroom! Yesterday I managed to cook dinner and go to the supermarket without looking I was like an extra from The Walking Dead! At the check-out I momentarily baulked at the overpriced coastal supermarket charging me $60 for two bags of groceries but then I was like, hey, I’m buying groceries, woo hoo and swiped my card quite happily, feeling excited to get cooking! When the perfectionist in my head piped up saying my quinoa I made for dinner wasn’t fluffy enough, I quickly snapped out of it, ‘your quinoa wasn’t fluffy enough’! Really? You made a gigantic multi-coloured salad! You had the energy to drive to go to the supermarket for the ingredients, the discipline to rest before cooking, the stamina to keep standing up and the mental capacity to make it without a recipe, without burning anything and without cutting off your thumb, who cares about the fucking quinoa’s fluffiness!
And of course, as I finish this blog post I am super excited to be writing again! I was too sick or too scared of getting sicker to blog during this setback, the only thing I did was scratch in some journal entries at the end of the day, forcing myself to list positives and things I was grateful for, even if it was just “showered without dizziness”. So, here’s to dizzy-less showers, wearing my clothes the right way round and letting my fingers tap away on this keyboard… here’s to recovery from chronic fatigue!! Off to make a cup of tea now without the brain fog risk of burns…