Us spoonies are tough stuff. We deserve more recognition for how great we are doing when we undertake a task that is dreadfully painful and will probably cause later repercussions. Having the courage to do small amounts of work that healthy folks take for-granted; experiencing pain and fatigue at unimaginable levels, and persisting anyway, time and time again. Everyday with chronic illness is someone else’s nightmare, and still spoonies find a way to cope. That is bravery. When one of those magical, unscripted moments where we take our illness by the throat and tell it who’s boss finally does happen, we don’t want to be afraid that pushing ourselves will lead to someone using “well, you did it yesterday!” against us later. Just because we did something one day does not mean we are at all better. It could have even set us back a week or two, no matter how small the action.
For instance, I drove my boyfriend to the hospital last month for severe hip and back pain. It was horrible. First time I had driven in over a year. I sat in the hospital sobbing like I was the patient that needed assistance. When we got to the ER, they immediately took my boyfriend and I back to a room, he talked to a doctor for a second, and then they gave him IV valium and dilaudid without so much as making him feel like a drug seeker, not one time. My boyfriend’s doctors kept coming in with boxes of tissues for me and judgmental faces, like I didn’t have a right to be in so much pain. I pushed myself way farther than normal taking him to the ER that day, and I was hurting, but pain alone doesn’t usually make me cry in public. Truthfully, I was also crying about the fact that I will never be treated that well in a hospital, I will always be treated like an addict when I am in the most need. I have been turned away from ER’s and Urgent Care many times because “they don’t manage chronic conditions, that’s what your primary care is for.” OMFG, REALLY?!
Just like with me driving my boyfriend to the hospital, doing something once does not mean I can do it again tomorrow. The next day I was almost unable to get out of bed, and by “almost unable” I mean it took two hours and a handful of pills and I’d rather not talk about it. Pushing through the pain is not always the best choice for those of us with chronic pain, it can and will cause flare ups that are disproportionate to the thing that set them off. One less painful day or one easier week does not mean I am cured (but they are really, really, really nice!). Going outside will not cure my illnesses. Trying harder isn’t really an option since every single day I am trying with all my ability to not let this illness get the best of me. I am not a mooch, I am not lazy, I do not enjoy depending on others for help. I did not ask to be in this much pain or to burden the love of my life with my conditions. All I can do is keep putting one foot in front of the other, like so many others dealing with chronic illness and chronic pain. We are tough because we have to be. It’s not an optional character trait.
When I have these conditions in remission enough to drive, I will get us in the car and head straight for the coast or the mountains. I know my boyfriend wants me to be able to drive again. I do too, so much! But wanting is not the same thing as being able to make it happen. It’s beyond frustrating… it’s a kind of frustration and desperation that try to drag me deep down into depression. I want to be able to assume these responsibilities again, I really do, because emotionally it felt great to drive him somewhere when he needed me, but the way my body reacted to all the movement, walking, sitting, twisting, was enough to convince me that my driving days are on hold again for now.
Despite the pain and restrictions of having several chronic pain conditions, my favorite phrase is still “I can do it” even when I really can’t. It might have taken me an hour to get that glass of water, but damn it, I did it myself. I try to push my limitations as often as I get a chance, in order to feel human.
Healthy or chronically ill or somewhere in between, we all push our boundaries to feel alive. It’s the difference between existing and really living. I’m going to keep pushing myself as so many other spoonies do on a daily basis, and if that allows me to get back to driving eventually, even better! I’m tired of hearing what I “should” be doing… instead I’m just going to do what I can and be happy about it, every day. To everyone else out there struggling with what others think you should be able to do, it gets easier to stand up for yourself every time! No guilt, we didn’t ask to be sick!
Yesterday I had sciatic nerve pain in combination with whole-body sensory overload, no one could touch me without making me hurt even worse for the beginning of it, and it was so bad, so overwhelming and horrific that I went into shock for almost a half hour, shaking so hard my legs were just jumping around and my teeth were clacking together. My lips and fingers turned blue. My boyfriend offered to take me to the emergency room, which never comes out of his mouth. I think it’s pretty rare when my illness is so visible that it’s not just me talking about how I feel, or moving slowly or with a limp.
I wanted to. I wanted to get wheeled into the ER, but then the thought of having to fight with some gruff doctor who may or may not eventually agree to give me something that may or may not mitigate the pain a little…. I changed my mind. Instead I opted to stay home with my herbal remedies and what prescriptions I have saved from years past and just tough it out. I couldn’t walk without screaming, but I knew I couldn’t stay put forever or I would really lock up. When the first shock-wave struck I actually stayed in one place for four hours because I was alone in the house and afraid of falling. As soon as my boyfriend made it home I made an effort to move as much as possible, screaming and all. Sometimes you gotta make noise and just do what you gotta do.
There were some scary moments, but this is a definite victory. I calmly told everyone around me to let me cry and be miserable and I could probably get through the level 10 pain to something I can manage, like a 9. They listened to me and watched me writhing around and I think they thought I would recant my previous statement and want to go to the ER eventually, but I did not cave!