I knew I was planning a bit too much for the week. But I rationalized. Dinner with a friend. I would be eating better than I would at home and we would just be sitting in a booth the whole time. Then there was a movie - again, it’s all sitting, basically resting, right? Then there was a dress fitting with a friend. Again - easy peasy. Lots of sitting, snacking, nothing strenuous.
Then came Thursday. Thursday came on hard and heavy. Sore throat, swollen lymph nodes, body aches, chills, and a migraine. My mind was in a complete fog all day. By 4:00pm I basically blacked out for an hour, completely unconscious to the world. I awoke to feeling like a semi-truck had just run me down. If only I had the energy to get off the couch... Too tired to eat, having no energy to chew, even though I knew a bit of food would help. My week of plans, most of which involved sitting... was still too much. This was a harsh reality check!
Myalgic Encephalomyelitis, you took me prisoner once again and threw out the key! Or did you?
Some days you let me think I’ve got a grip on this whole pacing thing, that I’ve figured out a routine that works... and then suddenly you rip the rug out from under me. And I despise you for that. I despise that you’ve made me accept non-stop pain as my new norm. That you’ve done it in such a way that no one sees it but oh, do I feel it. That invisibleness - it adds a whole new layer of challenges to my life. Many people think if they can’t see my pain it must not be there. Or they simply forget that the pain is ever-present. I don’t talk much about it because I don’t want pain to be the story of my life. So, they forget what I wish I could forget.
Myalgic encephalomyelitis, fibromyalgia, cancer, Lyme, lupus - pick your condition. They all rain down on us a barrage of ever-changing symptoms and severity levels. They leave us guessing what the next moment and the next day holds.
So, what do we do? What do we do when it gets to be too much? When there is no end in sight yet we can’t imagine another day like this?
First, quitting cannot be an option. Off the table! Our conditions may get the best of us some (or many) days, but we cannot let them win. There is so much more to us then our conditions. We cannot let it erase all that we’ve worked to become and the people we are today because of that. We are far too special, have too much to give to this world, and make such an invaluable difference in the lives of our loved ones.
So, here’s how I’ve analyzed it all out for myself:
First, I can fight. But honestly, I’m too tired to fight. On to option two!
Second, I’ve decided to continually work on accepting what I cannot change. It’s not always easy; it’s a work in progress on many days but quite frankly, I don’t have energy to focus on what I can’t change. If I can’t change it, fighting it or focusing on it is simply wasting my precious energy.
Third, I will continue to challenge what may be possible to improve. I think this is an area that is bigger than I often realize. For example, I once accepted my back pain. Now I spend precious bits of energy on strengthening my lower back muscles daily, muscles that weaken from being so sedentary. The reality is that it’s a bit of a tie in this area - what I gain daily in strength I lose as well, but I’ll take a break-even over a loss. When allergy season sent me into a flare these past few weeks, I began supplementing my day with some allergy medicine to ward off the extra fatigue. This has become a win for me!
Fourth, I do my best to stay on top of the latest recommendations from friends with my condition to see if they are options for me. Admittedly I fall endlessly behind on this, too tired to stay on top of the updates and sometimes unable to understand them on my heavy brain fog days. However, I have had some nice gains in this area that make the pursuit still worth it.
Another big area for me has been learning my triggers. I don’t know if I’ve just been super naive, inadvertently ignoring patterns, or simply oblivious but when friends have mentioned their triggers, I’ve realized they have been mine too. I just never connected the dots. For example, loud areas, concentrated winter driving, and too much screen time all drain my energy. If these things are in the mix now, I know I need to plan rest time, not more activities, after. If I can’t avoid the trigger, at least I can plan for the aftermath. This has greatly reduced my plan cancellation rate. Tied to that, outings in general are also a trigger so I make less plans with friends now, which isn’t ideal, but it also means less guilt from plan cancellation. To compensate, I’m learning to find new ways to stay connected with my friends to lessen the effect of this.
While I may be a prisoner to my condition on occasion (to put it mildly), over time I’ve learned that the key to my freedom is not forever taken. It’s just buried a bit, waiting for me to find it, when I am ready.