Yesterday, I asked my friend U for a rain check on plans we made to go see a movie. It was the second time in the space of a month; but I had to. This time it was because my feet were swollen to the point of not being able to wear shoes – not even flip-flops – again. The previous opt-out was a few weeks earlier after I committed, with the best intentions, to attend one of her art exhibits. I had an appointment earlier that same day and experience has taught me that my body can’t handle more than one event or activity for a few hours in a day; any more than that will be followed by days, if not weeks, of increased pain.
Sadly, in the nearly five years since my illness started, I’ve lost count of how many times I’ve asked U to reschedule or canceled our plans altogether. Similarly, I’ve lost count of how many times I’ve rescheduled or canceled plans with other friends and family members; some of whom no longer bother making the effort to do things with me. Mind you, the arrival of my illness alone was enough to cause some people to disappear from my life early on. As I got ready to take a shower late last night, it dawned on me as I sat naked in my bathroom, that at the rate I’m going, I won’t have many friends left to reschedule or cancel plans with if I don’t come clean about the state of my life. So here I am, writing what amounts to an open letter to all my friends and my family members about what my version of living with a chronic illness looks like.
I know I talk about feeling pain, but maybe I still haven’t explained it clearly: This illness causes me to feel high levels of pain every minute of every day in almost every part of my body below my belly button. To cope with this pain I take large quantities of high-dose opioid-based pain medications (narcotics) six times each day. Even in these large doses, these opioid-based medications don’t come close to stopping the pain. However, without them, moving around or walking upright would be near impossible feats for me to accomplish. Unfortunately, because of these pain medications, I also have added medical complications from expected side effects and other symptoms – like the swelling in my legs and feet – that continue to defy explanation.
The truth is: nothing I’ve been prescribed controls my pain. In fact, my doctors can’t explain why – after multiple surgeries and many treatments that failed – I still have such high levels of pain nearly five years after this all started. Lucky for me, these doctors are all still invested in trying to figure it out. Although, that’s little comfort to me at times; especially when the pain flares up beyond a level where anyone should be expected to cope.
As a result, all I can do is manage my life in a way that minimizes pain flare-ups and the worsening of any of the side effects. That’s what I’ve been trying to do – and learn how to do better – with the different programs and treatments I’ve been participating in these last couple of years. The problem, I’m only now realizing, is that I haven’t been communicating with all of you what I need to do to manage things and take better care of myself or how much help I need to do it. The latter part of that statement is probably the most important: I haven’t told you that I need help taking care of myself.
Since my focus has been on trying not to be a bother or not making you worry about me, I haven’t been telling you the truth. Most days – even when I sound upbeat during phone calls or I add smiley-face emojis to text messages – I’M IN AGONY. Because of the pain I may not have slept more than a few hours in the previous 24 hours; I may not have taken a shower that day or the day before. I may not have cooked a proper meal in days, I may have a pile of dirty dishes in my kitchen sink or piles of clothes on my bed that I need to put away, and I may have put off doing my laundry again so the baskets continue to fill.
With all of this, and probably more, going undone because I’m in pain, when I ask for a rain check or cancel plans, it’s for the same reason: The pain or other symptoms are at levels I can’t cope with. Or I’m trying to manage them so they don’t reach levels where I won’t be able to move for days, or worse case land me in the hospital Emergency Room where all they can do for me is add extra doses to the pain medications I’m already taking.
Rescheduling or canceling is never because I don’t share the same desire to spend time with each of you. It’s never because I don’t respect your time or value the effort you go to when you plan something for us to do together. The relationships I have with each of you is unique, but that doesn’t mean I don’t owe each of you the same degree of respect and honesty. I don’t know if I’ve shared too much or not enough, but I do know that this is the truth about what I’m living with and I hope each of you will continue to stick around, so we can make more plans I might need rain checks for…