I have made the decision to go back to work. Outside of my home.
I have made real progress over the last year, and I am going to get my toes wet with some part time work, just to be sure, and then hopefully by the fall, I will be ready to work full time.
That is my plan.
But I want to talk about reality because when you have a chronic illness, taking this step has real hurdles, real obstacles, and I am feeling very frustrated without an outlet or an escape, and to be completely frank, I don’t know how anyone handles these situations in real life.
I worked full time as an ill person. My symptoms were progressing, but they were manageable, and I continued without saying anything to anyone and seeking no treatment. I could not keep food down. I could not keep my insides inside. I had trouble with pain and falling down. But I made excuses. I was clumsy, always had been, and I kept going.
My last years of teaching, I took a major stumble in the parking lot, asked repeatedly for other teachers to watch my room as I escaped to the bathroom before my insides escaped me, struggled to stand in front of my classroom, spent time with my leg in a cast, on a scooter, and even had to be checked for a potential stroke. I taught often in sunglasses as the left side of my face would droop. But I kept going.
Then I couldn’t keep going. My body spun out of control, and I couldn’t push through the symptoms anymore. I was essentially homebound as I couldn’t see some days, my legs shook so badly it was difficult to walk, I was passing out almost daily from blood pressure drops, and I could not eat anything but ice cream without immediate consequences.
I fell into a major depression watching helplessly as my body deteriorated. We were struggling financially, there didn’t seem to be any answers for what was happening to me, so I felt crazy on top of sick. And then my heart started giving out. It would start to beat exceedingly fast and then slow to stopping causing seizure like activity due to lack of oxygen and blood flow. I suffered a concussion from a fall in my kitchen due to one episode and it required six weeks of recovery time.
I just kept falling deeper and deeper into despair.
I was not an easy person to live with. It was not easy to live.
I tried going back to work. It was unsuccessful. My body could not make a full day without breaking down. I was unable to drive, as I was medically restricted, and so it took my entire family’s participation for me to make it back and forth. It was a strain on everyone, including my employer who had to call an ambulance and my family on more than one occasion due to my body giving out.
I sought treatment, and got my diagnosis of EDS III, POTS, and Degenerative Small Fiber Neuropathy. I have spent the past two years learning to live with some of the symptoms, how to work around some of them, and taking medication and have had a pacemaker placed to alleviate some of the others.
I am no longer a full prisoner to my body.
I have had to accept my limitations, however, and acknowledge that my life will never be the same, and this presents its own set of challenges.
I am young. Not even 40. And I don’t know why my body attacked itself. A few of my doctors have theories. I have some too. It doesn’t really matter why at this point. My focus has been on improving. And I have.
The test is, have I improved enough to function? I have spent three years of my life holed up inside of myself trying to keep my body together. I filed for disability to try to survive the time, but I was told that because I was under fifty and had been a teacher, I was not going to qualify. And I am okay with that, I don’t want to be disabled forever.
But I wonder whether I can work.
I spent all day yesterday in my bathroom, and as I loaded the washer with my clothes that didn’t survive the fallout of those symptoms, I thought, what would I have done today if I had to be at work?
Two days ago, my tremors were so bad, I could not pour coffee or get a drink in my mouth without it dribbling down my chin. I passed out in the kitchen injuring my shoulder, again. My husband came in, after I came to, and found me dripping in sweat, and disoriented. And I thought, what if I was at work?
I went six days struggling to eat. With painful and violent symptoms.
But I have had a lot less trouble than I was having. And I am not passing out as much as before. And no seizures, at all. And the tremors come and go. And I can see a lot better, and so much is improved.
So, I want to work. And, I have to.
I would be lying if I said that the thought of any of my symptoms attacking me in public (and they have in the past), but at my job no less, where I will see the same people day in and day out, and need to maintain a level of decorum and professionalism, is not absolutely horrifying to me.
So, as I venture back into the world of work, I am putting my toes in slowly. I will go with caution, with trepidation, but with great hope.
I know that I am capable. I am useful. I can do things.
I hope the world still has some understanding.
Peerspectives 