Some people may not consider me sick. Heck, half the time I don’t consider myself to be sick. Sure, I have all of these diagnoses; too many to count with mental and physical illness combined. But sometimes, that is just not enough. Often times, I feel like I am stuck in this limbo between being sick, and being normal.
Too sick to be well, but too well to be sick.
When I was first diagnosed, I was much worse off than I am now. My world came crashing down with my first and only hospital admission where I stayed for a week. Due to severe dehydration and Dysautonomia combined, I was really struggling. I struggled to walk, struggled just to make it 5 steps to my bathroom. I was shaking, dizzy, weak. When I was discharged, I was not much better than when I was admitted (minus being rehydrated). It was difficult getting around. I used a walker and a wheel chair much of the time. I spent the majority of my time in bed, sleeping or just laying there with heating pads. But then something happened. Slowly, I started regaining my strength. Maybe it was because I said to myself: “enough is enough!” I started pushing my body just a little harder. I signed up for classes, I slowly incorporated more activity into my life, I brought my puppy home who has been the biggest blessing. There was no treatment that kick started this improvement. It was slow and gradual, and for the life of me I can’t pinpoint how it happened. But isn’t that a defining feature of chronic illness? Disease symptoms that wax and wane in intensity throughout someone’s life?
I am not cured. I am not in perfect or peak health condition as I used to be. I still struggle after showers with tachycardia and low blood pressure. I still struggle to stand for more than 5-10 minutes at a time. I still have difficulty walking around the mall or grocery store, and often need my walker for these tasks. I still feel as though I could easily fall asleep during the day. I still get tired and fatigued. But at the same time, I am in school part time. I am a grad student. I go to my internship for 15 hours a week. I work part time from home teaching children English. I do all of these things, more than what many people can do with chronic illness. And sometimes, I feel as though I don’t belong in the spoonie community. That I am too far along, ahead of the game. I don’t go to doctors multiple times a week every week. I don’t have access to IV fluids. I don’t have many hospital admissions. I don’t have much testing left. I am in the stage where, yeah, we know what’s wrong, but I just have to keep doing what I’m doing.
“Keep plugging along.
Keep taking your medication.
Conserve your energy.
See you in three months.”
Sometimes, I don’t have all that much to talk about or update my spoonie friends on (particularly on IG) because I’m stagnant. Sure, I go to physical therapy and work on my dietary changes, but life really isn’t all that exciting right about now. Which, don’t get me wrong, is good. I am lucky that I am not worse! But sometimes, I feel like I have to work extra hard just to keep up with my counterparts and fellow classmates. I am constantly going, running, trying to keep up with people who do not have chronic illnesses. And it is so hard. It is a tough situation to be in. Because the truth is, I cannot do all that other people my age without chronic illness can do. I am still sick. I still am dealing with symptoms. But I’m not in the hospital. I’m not on my death bed. Heck, I’m not even in bed at all some days (minus the days I am free of obligations, lol). So honestly, I don’t know where I belong. I don’t know where I fit in. I don’t know where I should focus my energy, on my life with chronic illness, or my life without chronic illness. In so many ways, I am still dependent on other people in several areas of my life. I see my classmates living alone, supporting themselves, and I feel guilt over not being able to do so. I kick myself for being so far behind, because if I am well enough to do what other people my age are doing, why am I not there yet? Why do I feel as though I am running to keep up?
I know why.
Because I am sick. But not sick enough. I am well. But not well enough.
I am in limbo, bouncing around between being sick and being well, not sure of where I fit in.
But I know I am not the only one in this situation. And that is what I need to continue to remind myself. That, and giving myself grace.