I have daily dislocations/subluxations, chronic headaches and constant breathing problems. It seems to be the flavour of the month and I have learned that variable symptoms mean that certain things peak when others ebb and it creates some interesting life experiences.
One of the blogs I have been following the longest is Kerrie’s “The Daily Headache”. A couple of days ago, she wrote a post on The Trade Off. It’s a concept I have become intimately familiar with. Living with chronic illness can be like juggling pluses and minuses. There are physical pluses, like taking a break or getting a good night’s sleep and physical minuses like shopping trips, hospital appointments or just about anything that expends more energy that you have. There are also emotional pluses which may be physical pluses too – such as taking a hot bath – or may have physical minuses – like driving 7 hours to attend your nephew’s birthday. I learned the concept of the trade off early on, but it took a while to learn the difference between physical and emotional pluses and minuses and that the tricky part is that some things are complicated.
I enjoy playing WoW, but raiding most definitely takes its toll. However, it also helps me improve my coordination and lets me exercise my brain a little bit. I enjoy it as much as I sometimes find it extremely stressful. So, is it plus or a minus? Physical or emotional? Or all of the above? I enjoy reading. It’s great exercise for the muscles in my eyes, but after a while, it becomes quite a big stress on my eyes which can eventually progress into a headache. I sometimes feel as if I live inside a Russian Doll. The smallest doll and last doll is my safety zone. It’s what I can do without any negative consequences. The next doll contains activities that have a small negative or positive impact and as long as I have an equal amount of positive and negative, I’ll be okay. The more layers are added, the more complex and less precise the juggling becomes.
Trade offs are not always as simple as overdo one day, take the next day off and all is well. Sometimes they are. I do all trips like that – morning trips need an afternoon off, day trips need sick days scheduled in. But sometimes, sick days just happen without any rhyme or reason. I woke up with a migraine from hell again this morning at 4 a.m. and Chris’ first question is ‘what caused it?’. I dislocated my shoulder again last night and Chris asks ‘what caused it?’ I spent a good few hours barely breathing and Chris asks ‘what caused it?’ And I can only say ‘I don’t know.’ I haven’t done anything, changed anything. I haven’t cashed in on any trade-offs, I’m just sick.
This month, it’s headaches, asthma and shoulder/wrist instability, six months ago it was vision problems and recurrent eye lens dislocations, a year ago it was patellar dislocations when I looked at my knee and six weeks in immobilization thumb splints. EDS most definitely has a flavour of the month. I can’t help recalling Chaucer with a twinge of irony:
Whan that aprill with his shoures soote
The droghte of march hath perced to the roote,
And bathed every veyne in swich licour
Of which vertu engendred is the flour;
It’s april, I wish it was Chaucer’s spring, but instead asthma, allergy and chronic migraine season has arrived. Let’s hope that’s the whole package.