When You Are Too Sick To Be Well, But Too Well To Be Sick

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.

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4 thoughts on “When You Are Too Sick To Be Well, But Too Well To Be Sick”

  1. This is very much where I am with dysautonomia – still having to crash right after work to keep GOING to work (and thus not having much outside my job), but also able to do that job. I can travel, I just have to be prepared for the flare it’ll through me into with my blood pressure potentially – but I can faint on vacation and get back up with aplomb:-p I’m still getting finalized with what sort of hypermobility disorder I have (apparently my rheumatologist gave me one but an out of date one he never told me about – so doctors aren’t sure how to convert it to 2017 standards:-p), but other than maybe qualifying for some PT for that, it’s basically “meds, water, salt, let us know if you get as bad as you were last year again and we’ll adjust”

    Liked by 1 person

    1. Yes I understand completely. It’s hard with Dysautonomia, many doctors just stick to the “fluids and salt.” Which is important no doubt, but frustrating because we want more than our illnesses to just barely be managed. All we can do is keep plugging along and try to live our best life with illness. Thank you for reading and sharing your thoughts!

      Liked by 1 person

  2. This is so relatable! Some days, I feel great; I go to the grocery store, I wash my dishes, I go for a small hike with my husband. And other days I can’t get out of bed. I look at living with chronic illness as a spectrum. Some people are more functional than others, but that doesn’t invalidate your experience. I think all you can do is enjoy the good days, cope with the bad days and live your life the best you can.

    Liked by 2 people

    1. So true! Cherishing the good days and knowing the bad days won’t last forever is important to realize. Perspective. It’s all about living our best lives despite limitations. Thanks for reading!

      Like

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