A Look Back on Rare Illness Day

Capricious at The National Underground Railroad Freedom Center

I decided to share with you my original blog post here on disability depot for Rare Illness Awareness Day, here. It contains a rather detailed history of the slow decline I experienced and my ruminations about the origins of my decline, but it’s rather incomplete.

At the time, I knew I was still missing an important piece of the puzzle, but didn’t yet know about Ehlers-Danlos Syndrome and how integral it would be not only to understanding a lifetime of my personal medical hardships, but would actually make sense of those running throughout my family for generations.

It’s not exactly that I don’t have ME/CFS, after all, I fit the criteria and was formally diagnosed with the illness, but it didn’t explain the whole picture, just as EDS doesn’t quite capture everything, most notably the inability of my cells to properly store and produce energy and the continued, significant cognitive dysfunction I suffer.

In fact, it’s quite possible that EDS created the breeding grounds upon which I developed not only ME/CFS, but also Fibromyalgia and POTS, the diseases creating a challenging nexus to see just how much one woman can truly stand.

In the year and a half since I wrote that introduction, it’s been a wild ride. It started out with even more decline and months spent in bed. Weeks passed me by where any amount of light or sound was simply unbearable to behold and my cellular energy production ground to a halt. Even bathing required several days’ recovery.

I contemplated suicide daily. I just didn’t think I could go on this way and I felt I’d exhausted all avenues of treatment available. But slowly the extended rest began to do its work and I had enough tolerance of light to return to my online research. Before long, I had a new plan complete with new supplements and therapies. Slowly but surely over the last nine months I’ve pulled myself from that bed and begun living my life again. First an hour at a time until I found myself able to make it through the day. I may spend much of my time in my recliner, but so long as I follow a careful schedule, I can do my therapy, bathe, cook, and clean regularly and even occasionally make a trip to the grocery store or run errands without the assistance of a wheelchair or motorized cart.

I still have to recover for a few days after a trip out. I still have to pace myself very carefully. I still have to plan everything just right.There’s still a great deal I can’t do. I can’t last more than two hours out whether I’m in my wheelchair or not, but since I could hardly make it out the door 9 months ago, I consider it excellent progress. I still can’t work on a computer or write for any length of time without having migraines for a few days (which is why I blog so little). I can’t multitask. I can’t stand in one spot. I can’t bear bright lights or loud sounds.

To be perfectly honest, most outings I attempt are more torture than fun. I’m often in pain, confused, stressed out and my discomfort increases by the minute. But I’ve learned when to say enough is enough and to choose wisely. Each outing teaches me something new for the next.

Having such illnesses are beyond frustrating. They come with a plethora of symptoms and zero out of the box treatments or cures like other well known and established diseases. Even symptoms that should be easily treatable don’t respond to traditional solutions. But if you’re willing to be your own resident researcher and healer. There are ways of improving your plight.


3 thoughts on “A Look Back on Rare Illness Day

  1. Yes! I have always been able to sleep fairly well, although this is decreasing rapidly. It must be the medication. When I started having sleep apnea problems, I began hallucinating quite quickly, I thought. I was waking up at night, clutching my chest, with bile and acid in my mouth. I had 85% central sleep apnea, I think. So, from medications likely. I’m very glad you’re through the worst, as I know how horrific my experience was. Sleep is so important!

  2. It’s tough. There are days where I don’t want to live, but I don’t want to kill myself. If I could just die for a couple of weeks, maybe that would do it? There is an illness called Sleeping Beauty Syndrome where people sleep for weeks at a time. I’ve often wondered if I have that… only semi-facetiously.

    1. Ahhh, if only I could sleep during those periods! My autonomic system gets stuck in fight or flight mode, so sleep is almost impossible, one of the reasons I deteriorated to the point I did. I think now that I have that all worked out, those dark days are behind me. There’s a reason sleep deprivation is used in torture. You’ll do anything to get some!

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