“I used to have chronic fatigue”. I said that the other day, it rolled off the tongue easily and I continued on with my sentence. Easy as can be, I used to have chronic fatigue… wow, how good that sounds. But do I believe it?
I’ve resisted writing about this stage of recovery for a while now, I felt like I was jinxing myself, tempting fate or whatever you want to call it… because having worked so hard to first have people believe that I’m sick, and then go through the hard yards of recovery going up and down and not knowing if it would ever end it’s scary to say it out loud. I used to have chronic fatigue. As in, it no longer controls every minute of my life. As in, I now can work again. As in, I have a life. As in, I no longer need to live with my parents but at 31 can be independent again. As in, I can do whatever I want with my life? What? CFS has ruled my life for years, it’s scary to step away from that and claim back health and my own life. And what if I’m wrong? What if this is just a good period and I’ll come crashing back down in a month’s time?
Earlier this year one of my brothers said to me that he didn’t think I had chronic fatigue anymore, I just got more tired than most people… I bristled at this, about to leap to my own defence, how dare he question me, after all I’d gone through to get people to take this seriously, how could he say that? But I calmed down, this brother was always kind and had been very supportive, he wouldn’t say that flippantly. I thought about it and I decided he was right. Gone were the myriad symptoms that plagued me, there was only fatigue left, and minor fatigue at that. And when I did something out of the ordinary, like stayed up to 1am dancing at a wedding I did pay for it more than my fellow 30yo friends… was that CFS? I don’t think so… Maybe it was the remnants of it? Or maybe I was so scared of this illness taking back over my life that I was scared to live?
There’s the conditioning of CFS to break through too. I tuned in so intently to what my body was saying that it’s hard not to listen now. I overreact to getting tired. It’s taken me about a year to realise that fatigue can be absolutely normal, I call it Normal-Person Tired. If you’ve spent a lot of energy during the day you’re going to be normal-person tired that night. Everyone gets tired from late nights, anyone can get a cold in winter and need to sleep more to get over it, lots of people find driving for long periods of time hard – why do you think they drink energy drinks and cups of coffee? I went on a trip to Tasmania in March for a friend’s wedding and it was so good for my confidence. Not only did I dance and drink at the wedding with hardly a hangover the next day, but I drove all around Tassie, I went white-water rafting, I went on bushwalks, I slept outside in the cold. And you know what? I was absolutely fine! Was I tired? You bet, but so were my fellow travel companions!! We all went to bed early because we were normal-person tired.
So, my idea at the moment is that I no longer have CFS but rather, I am just unfit for life… Things I once took for granted are still hard as I am out of practice at living. I didn’t drink for several years, so alcohol affects me more than it did pre-CFS, that makes sense. I didn’t concentrate for hours on end while I was sick (I couldn’t) so work is harder for me than it used to be, I’m out of practice. But it is getting easier. It’s like when you go back to work after a long holiday and think to yourself, god how do I do this again? But you get there, you adjust and it becomes normal. That’s how I’m feeling.
In addition to all this I’m also physically unfit – cardio was forbidden during CFS. I’m trying to learn to run again and the novelty of being out of breath willingly is amazing. For years I’d had night sweats from CFS but here I am sweating from going for a run, yes! From my aerobic energy system working how it’s supposed to. And if you haven’t run in 5 years it’s going to hurt when you start again! Your muscles are not used to it, so get out the foam roller, make sure you do your stretches and give it time. The same goes for socialising, I’m out of practice at a big room of people. When I was unwell I limited my time with other people, only saw those who lifted me up, and didn’t really do small talk to strangers if I could help it. Now I see far more people on a day-to-day basis and it’s tiring. It’s not a problem at all, but it’s new for me and tiring.
Just as I said in my last post:
“It’s the same as every time I restarted a sport each season. I’d drop catches in lacrosse that I knew I was capable of making, I’d get called up for stepping on the netball court or fall over on the lacrosse field, my fancy footwork no longer there. Was this frustrating, you bet, I’m sure I swore a fair bit, but was I despairing over it? Nope. I knew the skills would come back to me, I just needed to keep practicing.”
Whenever I wonder if I’ve overdone it I think, is this Normal-Person Tired?
- Is babysitting a 3yo exhausting for everyone? You bet! Let alone going on a trampoline and several bouncy castles for the first time in a decade… look around you, the other adults here look exhausted too!
- Going to a wedding is more tiring in your 30s than 20s, you’re going to feel crap after halving your nightly sleep, dancing like a loon and drinking too much.
- Working in a kitchen is tiring, all that standing. Remember your first waitressing shift way back when?
- Concentrating all day at work in an office, yep you’re going to be tired afterwards and might even read “super fund” as “supper fund” but you’re not used to doing it. This is normal.
Since I last wrote on this blog I’ve moved out of my parents’ home to my own place. This is fantastic and I’m loving my independence, but it also means all the life admin I hadn’t been doing adds up: paying bills, buying groceries, planning meals and doing my own laundry. All doable, I’m just out of practice. Also, it’s almost like I’d imagined a euphoric post-CFS life. That once I was healthy everything would be right in the world and my life would be great. But then there’s this thing called real life that you deal with. And it’s hard! For 4.5 years I haven’t worried about my career as I was too sick. Now I do, that inner over-achiever beast is back telling me I should be doing more, should be using this brain, should should should. I have a few part-time jobs that get me by but I’m looking for something else which means I’m writing job applications – oh joy. Now that I’m living on my own again I need to consider money a lot more. I need to make sure I can pay my bills and afford to live – this wasn’t a problem when mum and dad were providing a home and food for me. Again, this isn’t a big problem, it’s a good thing actually, but it can be a bit stressful. The same with dating – when I was really sick I shoved the idea of a partner far away, it was in the too-hard basket and that was fine. Now I’m swiping left and right and going on dates trying to get to know these people and look fun and interesting and non-neurotic. Is that fun? Not really. Every now and then there’s a great date that lifts you up but most of them are a bit draining and unsatisfying.
And then there’s the fearfully whispered question, what if it comes back? As much as I wish it wasn’t, this thought is in the back of my mind. People do relapse. This is when I reassure myself that I’ve done everything I can to improve my health, that I haven’t rushed back to life but let myself fully recover. I could have been working more six months ago, but the fear was too great, so I let myself step back in slowly. I also think I’ve learned too much about listening to my body to let it happen again, I now hear my body fire off warning signs, no longer subsist on caffeine and am aware of when I need to have a rest, not because of CFS, but because I’ve had a big week and am a bit tired. I no longer push myself like I used to, I schedule in downtime and appreciate the importance of self-care. And if, god forbid, CFS does come back I know what to do, it won’t take me two years to learn. I’ll have the skills to get me out. And if I do, I know I have a support system and people to ask for help and the determination to do the work to get my life back. I’ve done it once, I could do it again… but I really really don’t want to.
While on my Tassie trip I stood atop Mount Wellington, looking down on Hobart, walking in the freezing wind, feeling well. I went on a short walk with a friend, confidently negotiating the bumpy rocky track. We got to a ledge and I leaned out into the wind and yelled, at the top of my voice, Fuck you Chronic Fatigue I beat you! I was well. I was healthy. I was walking on top of the world. I used to have chronic fatigue.