One might think that after a year and a half of being debilitated by Lyme Disease, I’d be a pro. Sure, I can sort pills for the week in record time, and swallow an obscene amount of them at once without batting an eyelash, but the truth is that this disease continues to test me in ways I never could have imagined.
Looking back over the notes I keep of my symptoms, I have had only a handful of good days since January. My good days all but disappeared for a while – replaced by good half or partial days, which always ended in awful, symptom-heavy evenings. My days have been filled with a rotating combination of exhaustion, brain fog, joint pain, neuropathy, flu-like body aches – the works.
Never getting a full good day began to take a toll. It can be very isolating to be ill for a long period. It’s hard to get out and do things. It’s hard to even make plans because you don’t know if you’ll be well enough to keep them when the day comes. It’s hard to chat with friends when you know your answers to “What’s new with you?” are not particularly happy or interesting. It’s hard to be stuck at home, seeing your space become increasingly unkempt as you struggle to complete even the most basic household maintenance. It’s hard to hope for better days when they just don’t seem to come.
This is when it is all too easy to get depressed. The longer you go without feeling well, the harder it is to remember how it feels to be well. Throw in some guilt and the societal rhetoric of “mind over matter” and “stay positive,” and you can end up wondering… Am I really feeling exhausted and run down from pain and illness, or am I being weighed down by sadness and negative thoughts? Am I not trying hard enough? Am I being lazy?
Over the last couple of weeks, I was starting to sink into that hole. I wondered if I needed to push myself. Perhaps if I could try to be a little more active, I might feel better just by virtue of getting up and moving. Mind over matter.
Spoiler alert – no amount of positive attitude can negate illness. Can it help? Absolutely! But I have a serious illness, and no matter how positive my outlook is, I have limitations. I can certainly put on a funny podcast and start doing some dishes, but I will only last until my joint pain or neuropathy becomes unbearable. Some days, that’s long enough to clean all the dishes, some days, I can only get through a few. That pain will come when it’s going to come, regardless of how positive my thoughts are.
I was reminded of this reality when, two days ago, I woke up and felt…kind of great! I did not get extra sleep, or eat healthier the day prior, or think extra positive thoughts – I just got lucky with a good day. I was so happy to feel well and spent my day buzzing around the house attending to all sorts of neglected projects, laughing with podcasts and singing along to favorite tunes. That evening I still felt pretty well, and was able to play soccer and have a Nerf shooter battle with my son!
I was happy not just to be active and productive, but even moreso to be reminded that I am not lazy, or being kept down by my own sadness and negativity. When I actually feel well, I revel in it!
So here it is, for me, and for anyone else struggling with a long term illness, in black and white, as a reminder: Our illness gives us limitations, and we have no choice but to respect them. That does not make us weak. I am not weak. I am not lazy. I am sick, and I am doing the best I can.