I’ve been doing well lately, really well, but I haven’t blogged about it until now as I have not trusted it at all. I’ve been waiting for my body to knock itself over and cackle at me with a maniacal grin, “just tricking, you can’t do all this”. But maybe I can?
There’s no guidebook for this illness, no 10-step plan, there’s just a vague guessing game with help from others who’ve been there and insufficient advice from doctors who have not. And the thing is, I’m so scared of going backwards, of returning to that bed-bound mess of a dizzy, thirsty, achey, exhausted human that sometimes I forget to celebrate how far I’ve come, and to acknowledge that I’m actually doing very well!
How well? Well, the highlight of the last few months came in March when I went to my cousin’s wedding in country New South Wales. This consisted of two car trips and two flights to get there, and I suffered NO PAYBACK for the trip, the wedding, the lunch the next day or all the talking I did. None.
I kept waiting for the fatigue to kick in, for a headache to start hammering, but no, I was ok. In fact, surrounded by all the hungover people the next morning I was better than ok, I was great. My family cautiously asked how I was, worried I was putting on a brave face and was actually in a lot of pain. I’m fine, I said, I don’t understand it but I’m fine. I got to enjoy spending time with my extended family and loved being back on their farm. Ok, I was very sensible at the wedding and only had two glasses of champagne not 10 like some other guests and I snuck off for two 30-minute preventative naps at the house and was in bed by 11pm, but other than that I was just like any other normal wedding guest – and god it felt great!
Other things I’ve noticed that mean I’m doing well:
- I rarely lose my appetite now, which has to be a good thing.
- My sleep is consistently good and if a bad night comes out of nowhere it doesn’t destroy me for the next day, I can still function.
- I can get through big days well, such as last Sunday when I made lunch for my whole family and an epic birthday cake for my brother’s partner and played with my niece and fed the horses morning and night and was alive and well at the end of the day
- I’m experiencing spontaneous bursts of actual energy and getting restless when I am not doing much. Energy? Yep, that old thing.
- I attended a three-hour writing workshop a week ago and didn’t have to leave halfway through as I thought I would.
- I went to see The Sound of Music on stage in Melbourne with my spoonie sister Gemma and was completely ok, even after driving myself into the city, climbing the stairs to our seats, singing along silently and clapping until my hands buzzed – no noise or light sensitivity in sight!
- It apparently takes 200 muscles just to execute the simple act of walking… so I used to struggle to walk to the living room, but now walk up to 1800m on my walks, clocking up over 5km on my FitBit most days; therefore 200 muscles are better.
One of the reasons I haven’t written about how well I’ve been doing is that having worked so hard to get people to understand my condition and make allowances for me I don’t want them to suddenly think I’m healed and expect me to launch back into life. Because as well as I am doing, I am not better, and I’m not about to behave like I’m a normal healthy person; it’s just that my baseline from which I operate is so much higher, meaning I can do so much more, and if I do do too much the payback is less severe. But if I were to throw my rulebook out the window and do whatever the hell I wanted? Well, I don’t even want to think about that. That fear is there because what I’ve been through was so freaking hard. It was scary and isolating and overwhelming and now that I’m back to feeling like say, 60% of the human I was before this illness, I’m terrified of going back there. But that doesn’t mean I can’t celebrate the wins, I just need the caveat of “but I’m not there yet” to keep me calm.
The thing is, I’d now say that I spend more time feeling well than I spend feeling sick, and that’s a huge realisation to come to! I don’t feel amazing all day long, my energy is interrupted by bursts of fatigue or nausea or a headache comes along to say hello, but I’m not destroyed by these symptoms; I can exist with them. The way I’ve been talking about it is I imagine my body is like a music metronome and the aim for recovery is to keep that needle pointing up and steady at 90 degrees, whereas my body used to lurch out of balance from one extreme to the other, bringing with it some horrendous symptoms. What it feels like now is different, it’s like my body is only wobbling about 10 degrees either side of normal. That wobble is enough to bring along some nasty nausea or dizziness but it no longer lasts all day and can be gone in an hour or sometimes even ten minutes. It’s been hard not to freak out at every wobble I have as I spent so long learning how to listen to my body in order to know when to go and when to slow. Now though, I’m aware of the signs and symptoms but 80% of the time if I just sit with them quietly they’re gone in an hour, sometimes even less. It’s like my body was in such desperate need of rest and time to restore itself that it used to scream at me to go back to bed, now it’s just a whisper saying, hey, we’re off balance but I’m working on it, let’s see if we can right ourselves, if not, we’ll need to go to bed soon… Maybe that doesn’t make any sense and I’m just alone in my metronome metaphor, but it’s helping me accept the ups and downs of a day and explains why I had about 10 minutes feeling weak and woozy this morning while feeding the horses but I am functioning well now as I type this post.
So this new and improved baseline or energy envelope I find myself with, it’s pretty great, and I’m finding such a good taste of normal life again. Whether that’s dinner with friends, driving for an hour without having to pull over for a preventative rest, cooking for others or reading a book; it’s all awesome to do again. I still pace myself throughout the day and my approach to most things is still, “slowly slowly” and I laugh when my memory absolutely fails me, but I am able to do so much more. It’s been interesting this week to see how far I’ve come as I’ve been helping out my mum who’s had surgery on her hip and was knocked about my the general anaesthetic; it was all so familiar to me! The brain fog, the fatigue, the wooziness – it all used to be me day in, day out! And do you know what’s been awesome, after my mum looking after me for almost three years of CFS I’ve been well enough to help look after her, and that feels fan-bloody-tastic. I’ve been bringing Mum cups of tea in bed, and nutritious but delicious morning teas, I’ve been feeding the horses for her morning and night (and coping brilliantly) and later this week I’m driving her to a physiotherapy appointment, not the other way around!
So I’m trying to learn to trust this body, and accept that it is ok to do things again, that I can be aware of a symptom but that this no longer means “take our body to DefCon1” and make a hasty retreat to bed. It’s hard to sit with a symptom and just mindfully say ok I hear you, let’s see if you go away with some gentle time, but that’s where I’m at. I now know that I can still do my walk if I’m feeling a bit tired because hey, healthy people get tired too. And just because I have a headache I don’t need to cancel all my plans anymore, maybe I’ll scale them down, but it won’t kill me to go out into the world with a sore head anymore. That headache used to be my flashing orange light saying, Warning, Warning, Crash Approaching, but now it’s just there, and I know it will eventually go away as long as I don’t push myself too hard.
In the meantime I’m going to enjoy the gasps of good life I’m getting, whether they be social events, walks along the river with my dogs, cooking more or the simple luxury of being able to read my book in a cafe – something I 100% took for granted before I got sick!