(Looking kinda normal at my eldest's deb. Well apart from the hand he's using to desperately hold me up.)
It's one of those issues that makes it so difficult to convey just how hard it can be to live with our various illnesses. How can we explain to family, friends and strangers that yes we were at a party, dinner, or in Hayley's case a wedding, and seemed relatively normal, and still impress on them just how difficult our lives are. Even after seven years it can still be hard for me to understand at times. Or, to continue the theme, in the words of Merle from The Walking Dead, "I'm a damn mystery to me".
Why is it I was able to push through my son's debutante ball, even manage to do the mother-son dance with him, yet not be able to cook dinner or get out of bed some days?
Part of it is the fluctuating nature of my symptoms. Some days I can simply do more than others. Often there is no clear reason why one day I can clean a bathroom and just be fatigued, and another it will leave me bed bound and crying in my pillow as yet another bout of overwhelming nausea and low bp hits.
Stubbornness is also a great, though not always healthy, motivator in these issues. I am after all, the classic Taurean, stubborn as a bull, or as my mother likes to put it, I am known "to cut off my nose, to spite my face". This of course gets worse the sicker I am. Somehow that always transforms to "you can't beat me!" as I push myself unsuccessfully and vomit in my newly cleaned toilet bowl.
But perhaps the most important part of the equation, is the value I place on the event or activity.
Everything I do has a cost. Drive the hour into town to see my neurologist? That'll cost me at least a morning of vomiting, diarrhoea and low bp with perhaps a migraine thrown in for good measure. Only my need for a review and better pain management make that payment plan acceptable.
Do the grocery shopping? That'll cost me multiple trips to the public loos, nearly vomiting in my trolley, the stress of potentially falling or passing out in public and then usually at the minimum a day of recovery. I've now handed that task over to my eldest son and/or husband as the cost is too high to ensure I get the brand of cheese I like.
Vacuuming and mopping my house? That can land me in bed for a few days or at least being little more than a comatosed blob on the couch. I can live with dirty floors. And lets face it with a house filled with teenage boys and two Great Danes that live in the house, the floor will be in the exact same state 20 minutes later. I may not win any awards from Home Beautiful but I would rather save that energy and be able to sit and talk coherently to my kids about their day or maybe wash my hair so it's more like human hair and less like greasy straw.
When it comes down to it, there is essentially nothing about these and other mundane daily tasks that make them worth the effort involved.
But there are some activities and events whose value far outweigh the payment demanded.
Last night my best friend came around after dinner. This is one of my hardest times of the day, only trumped by the early morning. Didn't help I'd been up since 7am (for the WEGOhealth Health Activist Awards ceremony, of course the ceremony actually started at 8am Melbourne time, and I'd cocked it up like usual, but that's another post). Normally by the end of any day I am pretty non-functioning. I am indeed the Rusty Hoe by this stage of the night and it doesn't take much for me to fall over the edge. And yet I managed to make it through. And not only make it through, but had a great chat and many many laughs. Even when the laughter ended with the inevitable excruciating vice to the back of my head and greying vision (long time readers may recall that my neurologist told me that I had to avoid laughing as it drops my bp. Only an arsehole disorder would not allow for laughter to be the best medicine) I still kept going. Even today as I sit typing and the muscles on the back of my head are still sore after losing so much blood flow, it was worth it.
You see, catching up with her is always worth any payback and is worth pushing through. Somehow that one fact allows me to summon up every last bit of energy I have. Because for me, it's worth every bit of post-event exhaustion and increased symptoms. And for the short time of the event itself I can push down or at least deal with my symptoms. (Also helps that she's one of the few people I know wont bat an eyelid if I get vague, or grey, or need to lie down. And that she can interpret my incoherent thought processes and sentence structure with ease. Removing that extra level of stress is also a huge factor as to why I can generally make it through a catch up.)
And for me that is the crucial factor. There are very few people that I would value highly enough to sit up talking late into the evening. Equally there are very few events that are worth that amount of effort. And not just the effort of the event itself but the preparation beforehand and also the inevitable crash afterwards.
There is always a price. My son's deb equalled a week's worth of preparation (eg shave my legs one day, wash my hair the next, start increasing my salt and water intake a few days beforehand, minimise doing anything bar the essentials to minimise fatigue, taking extra salt, water and meds on the day), followed by a few weeks of recovery and completely writing off the week immediately after the event. A one night event is transformed into a month long event when chronic illness comes into play. And yet there I was stumbling my way through the mother-son dance and spending 4 hrs in a noisy, hot ballroom without passing out. In comparison, the day-to-day minutia are not so worthy of my efforts.
There is also the factor that these events are one offs or intermittent. The level of effort involved combined with the payback, could never be sustained 24/7, 365 days a year. Cleaning or cooking everyday means a level of activity that in the short term may be achievable, but at a sustained, every single day level, is simply not. I would rather have dirty floors and multiplying dust bunnies and be able to blog, interact with my family or maybe catch up with a friend, than a perfectly clean house. I'd rather save my energy for showering or some days, simply breathing, than having a fully cooked meal. That's why they invented takeaways. And on the days I feel bad, cleaning, cooking or social engagements that are more obligation than enjoyment, are not worth my pushing through, and without that motivation I am simply unable to do them.
Most patients with chronic illness know The Spoon Theory by Christine Miserandino, and it continues to be one of the best explanations about the way I function (or don't function as the case may mostly be) that I've come across. I have a finite amount of energy each day. And once it's gone that's it. Sometimes, I spread it out over the day and sometimes, I use it all in one spectacular moment that I deem worthy. In those moments I can look normal, I may even dance like Hayley. I know I will most likely even surprise the hell out of myself and I will look back and think, "How the hell did I do that?" Or in the middle of the aftermath I may question, "Why did I do that?" I know there will be payback. I know that it can sometimes be bad. But now I make sure that whatever it is, that it is worth it.
I want value for money.
More bang for my buck.
I want a life punctuated by shining moments worthy of all my spoons.
The in between moments may not be great.
It may make it hard for others, or even myself, to understand my illness.
I may have a house that is more dust than decor.
But I choose to prioritise what is important for me.
What makes my life worthwhile.
And lets face it, when Nutbush City Limits inevitably comes on the playlist of every wedding, party, deb ball, or my personal iTunes collection, doing the moves is one of those times it's worth pushing through. Even if you should happen to end up face down on the floor afterwards.
If you pop over to check out Hayley's blog, and you should, tell her I sent you. She has great information about Complex Regional Pain Syndrome (CRPS) as well as being an amazing writer and having a wicked sense of humour. You can also find her on Twitter.
Now if you don't know The Nutbush dance moves, I'm not sure we can be friends.