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Hallo, willkommen

This blog is a personal record of the life of a chronically ill (chronically awesome), disabled, dyslexic, doctoral student and entrepreneur.

I share the beautiful moments, and the hard ones. It's unfiltered, and extremely uncensored.

Enjoy!

The Trouble with Not Being Terminal

The Trouble with Not Being Terminal

I want to start off by making one thing perfectly clear - I am incredibly thankful that I do not have a terminal illness. I am in no way making light of the tragedy of those living with a very clear expiration date. Suffering is not a competition, and that's not what this is about. Okay, now that we are clear, let's begin.


Just a couple of months ago I passed the 10th anniversary of my diagnosis with Fibromyalgia (FMS), and am in my 29th year of Ehlers-Danlos Syndrome (EDS)(plus a nice lifelong side order of anxiety and depression). I mentioned a few posts back that, according to a chart that my doctor gave me years ago, the pain of fibromyalgia ranks squarely in-between cracking a molar, and childbirth. And it's constant. Every moment of every day. There are days that it's reduced, and days that it's more severe, but it's always there.  Paresthesia shooting down my arms and legs. My skin burning. A deep aching that I can't even begin to explain. The feeling of sand and acid in my joints. Boiling water in my veins.

There are cognitive difficulties that cause memory and recall problems, which, when you are in school, or seeing clients, or just trying to function and/or not sound like a complete fool, can be really debilitating. For me, this is a problem. I value my intellect above most things. I've spent thousands and thousands of dollars on education, that at some moments just doesn't seem to be in my brain any more. I've spent years building a holistic medical practice, which is a field that already struggles for credibility, constantly having to prove the science behind my therapies. To try and explain a concept, or quote a research study, and just not be able to remember what I'm talking about, or where a study was conducted, or the correct percentages quoted therein, or to mean to say "magnesium" and somehow say "sodium" seriously discredits my work. It's overwhelmingly frustrating. As a scientist, as an entrepreneur, as a person.

EDS, for me, in addition to a thousand other things, means my joints dislocate really easily. I usually can pop them back in place and move on, but not always. And it's super painful (because obviously I was short on discomfort, right?). It means I have to use mobility aids (KTape, a cane, braces) sometimes to function, which leads to a whole lot of exacerbated depression, anxiety, and generally doubting myself, as well as judgment and ridicule from the public at large. Fortunately, this provides me with great educational opportunities, but sometimes I don't want to educate and advocate, I just want to get a cup of coffee and be left alone.

While EDS is degenerative, FMS technically is not. However, as the body ages and health declines, pain becomes more debilitating. So while not technically degenerative, you could probably fool a lot of laypeople. My doctors tell me that I will probably be confined to a wheelchair full time by the time I'm 40. I don't know if they're right or wrong, I'm just shy of 30 and fluctuating between walking with a cane and going trail running. I take good care of my body and try to practice good self care, so time shall tell. Either way, some day my mobility will most likely be taken away from me.

But at least I'm not dying, right? Absolutely! I have a whole lifetime ahead of me of learning new things, trying new foods, meeting interesting people, and having new experiences. But it also means I have, working off the average lifespan for someone like me, as reported by the Social Security Administration, 57 more years of daily, ever-worsening pain. 57 years of losing my independence, my mental faculties. Of forgetting everything. Of having my hips and knees and shoulders forcibly relocated. Of being to exhausted to function. Of having to carefully monitor what I eat, how I sleep, how much activity I participate in. But at least I'm not dying. 

It's funny though. Working hard, pushing through excruciating discomfort, struggling to function, but not having a terminal illness is a weird situation to be in. Especially if you try and stay positive, be happy with the life you have. People don't take you seriously. Like you're not really sick. Like you don't really struggle. Like it's all in your head, or you're blowing it out of proportion. If you use your mobility aid, people stare, make rude remarks. If you don't use your aids, people point out that you're "all better." If you have to cancel a social engagement or activity, you risk losing your relationships. If you're me, and you work 90+ hours a week, every person in your life will suggest that you just need to slow down, reduce your stress, relax, and everything will be fine. Three things on that point. One, things might be slightly better physically, but it's not a fix. Two, are you offering to run my businesses or pay my bills for me? And three, who on earth are you to judge my life and my healthcare? (See the entry on Ancient Abled Proverbs for more on this).

I honestly don't know how long I will live. I don't know if my conditions will cause some surprise problem, or if I'll be in a car accident, or mugged in New London (seems likely), or maybe, some day, I'll make my last independent choice to turn off the pain. Maybe I'll live to be 100! Who knows?  But here's what I do, confidently know. Terminal diagnosis or not, we all are living with an expiration date. We're all living with our own sorts of struggles. We all have things to overcome and a set time to do so in. So I'm doing all the things I possibly can, while I can. I'm living large, taking no shit, kicking ass and taking names! I'm being bold and trying new things, meeting interesting people, learning as much as I possibly can, working hard, pushing myself, eating delicious food, drinking good bourbon, jumping out of planes (well, soon), traveling, basically whatever the fuck I want. Because who knows?

Basically, a non-terminal but still life altering diagnosis may be the worst thing that has happened to me, but it's also kind of the best. I'm mousey. I'm awkward and a little shy. I do better with books and lab equipment than with people. While politically liberal, I have a natural tendency to live conservatively, not spending lavishly or doing anything too crazy. I people-please, at the expense of my own well being. But no more. I'm talking to interesting new people. I'm writing a letter to the person I admire the most (yes, again. And yes, I'm terrified). I'm actively checking things off my list. Next month I'm completing my motorcycle safety training so I can get licensed, so I can get a motorcycle. In the spring, after I graduate, I'm getting my pilots license. I'm being more liberal an less apologetic for cutting toxic people out of my life. On days I don't have to use my cane, I'm training for a 5K. I'm making travel plans. Because life is incredibly short, and our ability to fully enjoy it is even shorter. Yes, I'm still a workaholic who pours all her time into her businesses, but it's because I want to, because I love to!

Moral of the story, find what lights your fire, rings your chimes, makes you feel like your life is exciting and worth living, and do those things! Every single one of them. Move outside your comfort zone. Talk to people, but only invest in good folks who are up to cool shit. Plan for the future, by all means, but don't forget to live in the now. I certainly am!


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