I’ve come to the realization that lately my life contains a lot of “lesser of two evils” decisions. I’m faced with a lot of choices where neither outcome is exactly pleasant. I know that I’m an adult and not everything is rainbows and unicorns, and as an adult we’re often making choices that aren’t always pleasant. But it just seems like things are on a whole new playing field when dealing with chronic illness.
For example, I can’t do everything I used to. Between pain and fatigue, I just can’t. So what do I skip or give up?
The hobbies or interests I had? While they aren’t strictly necessary to the running of my family or doing my job I do believe they are important to my self-concept and happiness, which does impact my family and work. I think everyone should have something they do just for them – that’s not about their children or significant other, but something that’s just for their soul. I’ve already given up mine, for the most part, because I don’t the energy, or they physically hurt.
Or tasks around the house? That seems to be one that I’ve picked so far – I do very little around the house and my poor husband has been picking up the slack for me, but that doesn’t sit well with me…I hate being “that wife.”
Or do I give up fun things with my kids? I already don’t have the energy to physically play with them like I used to…I hate telling them I’m too tired to do something.
Do I give up my long-term career goals because I can’t put in the effort to maintain the work along the way that is necessary to reach them? I’ve worked so hard for so long and still have contributions to make – the thought of walking away from it all hurts.
No matter what I choose to give up in order to be able to do the other things, I’m losing something. I know that no one can do everything – we all make choices in where we put our time, energy and focus…but these are things that I used to be able to do…things that I really believe that if I wasn’t dealing with this disease that I’d be able to continue to do.
Another example is tomorrow. I’m presenting at a science teacher’s conference tomorrow in Denver. I love presenting and getting the chance to interact with teachers and discuss something I’m passionate about with other educators. I was even super excited that it was in Denver. I went to college in Colorado Springs and still have many friends there. I was excited to get to catch up with them for dinner or something. I’ve always enjoyed when work takes me there over the years as there’s always a chance to hang out with at least one or two people while I’m there.
But this time is different. Traveling for several days wears me out. Not just in the “I need a vacation from my vacation” worn out that I’ve experienced from traveling before (especially when said travel includes bringing your children along with you!). This is a “takes days to recover” kind of worn out that is very different from the normal post-travel tired I’ve felt in the past. In the last month I’ve gone an hour away from my home to present for 6 hours one time, and another time for an all-day interview (about 6 hours as well). That’s 8 hours a day (hour drive, 6 hours there, hour back) – what most people work each and every day. Each of those times it literally took me two and a half days to be able to function at even my lower-level of functioning that has become my “norm.” That’s a scary thought that each “normal work day” took up to two recovery days out of me.
So do I spread this trip to Denver out over three days – travel there one day, present the next and travel home the third? That makes none of the days overly crazy by themselves, but the three days of travel together do add up and will need a recovery period. I’ll use up three days on the travel itself, plus a day or two to recover. I literally will be mentally and physically worthless during that recovery period, so it really does need to be taken into account. That’s 5 days worth of energy and effort for a 1-hour presentation.
Or do I fly out in the morning, present and fly back in the evening? That makes for one insanely busy and tiring day – but it’s over in one day and then I can recover for a couple of days. That’s only 3 days worth of energy and effort for a 1-hour presentation. That’s better for the energy-expending aspect, but that leaves me no time to connect with some old friends – something that would likely boost me up for a while as visits with old friends always do. And it also leaves me no time to enjoy the conference – to get to sit in on other presentations.
And there’s other things to consider because of my chronic illness. If going with the three-day option, I would have driven. Driving allows me more flexibility in visiting friends in Colorado Springs and Denver, but that would involve driving the 8 hour drive by myself. It’s not that big of a deal and I’ve done it many times, by myself, but not with the fatigue and hand pain that I experience now. I just don’t know that I want to (or CAN) do it by myself, with those obstacles, in the winter, through long stretches of nothingness in western Kansas and eastern Colorado.
These are things that I have to deliberate over and make choices over that I would not have had to prior to this disease. Previously, I would have driven out there, spent the three days on the trip, seen some friends and come home tired from an 8-hour drive, but not excessively so. I would have had a great time catching up with friends and gotten to have the professional time of presenting and conversing with fellow educators.
But now, because of this stupid disease, instead of being excited about a professional opportunity that also allows me time to see some friends, I’m deliberating between two things that I know are going to cause more fatigue and pain (travel is painful for me with this disease, no matter if it’s being cramped in a plane or sitting in a car) and if I choose the route that will get the whole thing over more quickly (disrupt my “regular life,” my work and my family the least), and that’s probably safer for me at this point, then I’m giving up the fun part – the part that would have given me a little boost of spirit.
I’m flying. Overall time and energy, along with my safety, won out. So there goes another little piece of fun and joy to this stupid disease.