Mayday Mayday Mayday! I am without power, crash approaching, arm your battle stations, this is not a drill. Oh dear, I’ve done too much, I knew I was pushing it but I was having so much fun so I decided to push through. Pushing through worked for me for 26 years, maybe it would again? Err, no.
The concept of feeling that I have done too much and need to lie down right now is hard to contemplate for the non-fatigued out there. The only comparison I have come up with is when you really really need to pee and you’ve held on for a while and you’re in public so you can’t even swallow your pride and find a bush to squat behind and you’re walking funny and oh my god what if I wet myself? This photo that I took of a German toilet sign sums that feeling up quite well I think. That’s kind of like the desperate oh-god-I’ve-done-too-much feeling CFS sufferers get, that makes them eye horizontal surfaces longingly for their napping potential.The thing is though, that there are warning signs before you find yourself at this point (I mean the fatigue point of no return, not the wetting myself one), but when I’m having fun or doing stimulating things or distracted by something shiny I don’t see them. Alarm bells ring and I don’t hear them because I don’t want to, I’m feeling normal and healthy! Well, I’m acting normal and healthy and I don’t want to think about fatigue. It’s kind of like the recalcitrant dog that runs away from you in the park, finally stopping to notice your shrieks and looking at you in surprise – oh I’m sorry, you called mistress?
If I tune in to my fatigue warning signs I can avoid a crash, if not, well, I’m going to feel like crap. First for me is usually a bit of brain fog reminding me that it’s not such a perfect day and I’ll get confused, or muck up speaking or fail to follow a conversation; then I get quite sensitive to noise and need the tv turned down, or to get away from the construction zone I’m walking past – doctors call it “sensory overload”. If I go and rest at this point I might be ok later, if I don’t I’m headed for a crash landing. Then comes a headache or sore ears and the brain fog shifts into gear and I get the gross spaced out feeling.The thing is, this is a battle that can’t be fought aggressively. I can’t go out, all guns blazing and demand my health back. It’s not like deciding I will get fit and signing up for boot camp where the harder you work the more results you see. It’s about making smart choices, accepting your situation, asking for help and making 5-10% increases over time, not aiming to be fit in six weeks boot-camp style. It’s really an un-boot camp; the award for stopping pushing yourself is your life back… I can’t force my way to better, I just have to rest and slowly rehabilitate. In essence I’m rehabbing my life, not just a sprained ankle but my everyday life. And just like a sprained ankle I’m impatient to be better, so I do too much and roll it again. Unfortunately there’s no CFS support brace like the big bulky ankle bandage I used to wear to play netball. So it’s really about being patient with myself and not pushing too hard too soon and not trying to achieve too much (says the overachiever) and accepting my limitations. No, I cannot go for a run or play netball, but I can do about 15 minutes of yoga on the verandah in the sun each morning and get a taste of the endorphins I crave. I have lots of rest breaks (it’s a wonder there isn’t a child’s pose imprint in my yoga mat) to make sure I don’t push too hard and end up being outside, using my body and clearing my mind every morning. Awesome! It’s about learning from my mistakes and not trying to write an entire blog post in one go when I’m coming out of a crash – this post has been written in four instalments, interspersed with yoga, two episodes of The West Wing, an audio book and some time spent sitting outside in the sun with my doggies. And what do you know? I don’t feel destroyed – winning. The same as how normal healthy people learn from mistakes I need to too. I remember when I was working in an office before I got sick and I copied and pasted an email to the wrong client, the very much wrong client. I was suitably chastised by my employer and never sent an email to the wrong person again, lesson learned. So, next time I feel like baking I won’t make three batches of rum balls in the one day, I will make one batch, and rest in between measuring out the ingredients and actually rolling them in to balls (they’re easier to do if the mixture spends 20 mins in the fridge anyway!). In this same vein I vow to not attempt to play with my six-month-old niece for a solid hour, singing and rolling around with her; 15 mins then give her to the next green-eyed relative standing nearby. There’s progress in doing the right things more and more so the bad crashes don’t happen. This is simply having the strength to ask for help rather than do things myself. This past month my mum has driven me to several appointments that I could have pushed myself to drive to, but I didn’t want to suffer the payback the next day from too much concentration. Stubbornness doesn’t help here, being a little bit vulnerable and asking for help does, so each time I do this I give myself a little pat on the back and say, yes, good girl, you’re making smart choices, you can be independent again when you’re better.
The big complicating factor in my recovery is when my lessons are learnt and it means I have to be a bit of a crappy friend at times. My friend had her 30th birthday this weekend on a farm hours away from my house and I did not attend. I had every intention of going, and had organised to get a lift with another friend, but once I started thinking about the long trip there, then the social contact, the inevitable late night, having to interact with more people in the morning when my body would be screaming for rest and then another four-hour drive home before I could be tucked up in bed it did not make sense to go. I wanted to go, but I also didn’t want to feel like utter shit come Monday and spend the week (or even weeks) recovering from it. Raeya at the CFS Health Centre summed this up for me when she said, “every sacrifice to your health that you make now by overdoing it is sacrificing days when you could be better, are these sacrifices worth it?” Not quite. No, my friend won’t turn 30 again, and I missed being able to celebrate with her and catching up with friends this weekend, but being able to have my health back is more important. If that makes me a crappy friend then I’ve just got to deal with that now and know I’ll be a better one when my health improves.So the idea is to be a good girl, to plan to avoid battle stations and not have to climb back out of too many crashes. To slowly, slowly inch back towards my life. In fact, the idea of trench warfare seems to be an appropriate analogy, just aiming for that next trench, not winning the war in one night. Some WWI soldiers fought over the same 100m for months on end, I’m calmly fighting for extended concentration periods and extra yoga poses. Yeah, there we go. Well, except for the fact that I’m not being fired at by enemy soldiers or bombed, or suffering from dysentery or trench foot and that this was a barbaric form of warfare… hmm, maybe not. Terrible analogy, I must be tired, there’s the brain fog warning so I’m signing off to rest now.