chronic pain / Migraines / Spoonie Challenges / Working / Writing journey

The ‘new’ me. Can I function in the world at my own snail’s pace?

Let’s discuss tomorrow, today, and right now.

Tomorrow

I am going to take the first step towards getting some (very) part-time work by being interviewed at the local Vocational Rehabilitation office. Compared to the majority of the people they see, my Bachelor’s degree, my year of graduate school, various successful professions, and being a business owner probably places me with the most qualified.

And that scares me because the more I come across as competent and intelligent, the less the counselor will believe I’m severely disabled.

A little over three and one-half years ago, I had a really, really bad migraine. I still have it, 24/7, every minute of every day, sleeping or awake. It’s always there. With it came neurological auras that damage my ability to think. It’s like I lost a third of my IQ points. The problems vary. I’m a writer/editor/proofreader who doesn’t always understand words and language. I’m a hypnotherapist who can hypnotize, but the therapy? How can I use my client’s own language and imagery to speak to her mind when I can’t get a handle on my own? Things that shouldn’t be confusing are. What’s the best order to get things done? Is this exhaustion or pain? Stinky versus dizzy—is this a good shower time? Sometimes my brain feels like it’s completely stuffed with bits of Styrofoam.

How do you tell someone that, while I seem relatively normal, after more than ninety minutes where I have to think hard or work at something easy, the migraine will be so severe that I won’t understand what it is I was doing? Or, I’ll hear what people say, but have no clue as to what those words could possibly mean. I can’t stand for more than 15 minutes, I get confused alphabetizing things, and my short-term memory is less than a millisecond.

As if that’s not enough of a reason never to hire me for anything, if the pain keeps me from sleeping and I’m too tired, nothing makes sense and I can’t leave the house. It’s too dangerous. If it’s too hot, everything, including the pain, becomes overwhelming and I can’t make it out of bed. To be a professional and to hold a job, you have to be reliable, so that the same-old-same-old should be easy peasy.

Editing snailBut I’m not. Every day is a new adventure in pain and confusion. When I write—and I am so incredibly thankful I can still write—I move at my own snail’s pace.

Emotionally I’ve accepted the frustration that is my life now. I know I can’t do all those tiny things I took for granted. Dirty dishes soak past my comfort zone, clean laundry takes about a week to find its home, and if I’m too dizzy to shower, go to the market, or get my mail . . . well, that’s life now.

But will an employer accept that? Will they understand that I really am doing my best, but my best simply isn’t good enough any more?

Today

It was way too hot out. Far out of my safe zone. Plus, the air conditioning didn’t start working fast enough in the car. As I walked to the Vocational Rehab office, I was glad I had some iced tea earlier. It keeps my temperature down and a little caffeine also helps with my migraine. (A personal tip: If you get migraines and someone gives you that list of foods you should avoid, consider the possibility that those same foods might be helpful. Journaling is useful). *

I was greeted with divinely cool air-conditioning and then I met with a really nice young woman who, shockingly, gets it. There is nothing better in my world than meeting someone and explaining what’s wrong with me and they understand. While sympathy, pity, and all of those similar emotions are things I don’t care to evoke in people, it’s a nice thing when someone acknowledges that spending over three and one-half years feeling like you’ve lost half your I.Q. points and are always confused . . . isn’t fun! That it’s okay to be frustrated.

And, in case you like pretending that migraines are not primarily physical conditions, the air-conditioning kept the migraine relatively low. It might have only been 30 I.Q. points that I got back, but it helped so much.

So what if it took going through all the local psychiatrists whose surnames begin with “K” for me to remember my current psychiatrist? My memory used to be good enough that it would thoroughly frustrate people I worked with when I couldn’t remember a foreign phone number immediately. Now I can’t even remember what to use to call France or England.

Of course, it was obvious that my skills as a hypnotherapist, dBase user/modifier, script supervisor, film editor, film writer/director, jewelry maker, or on-set sound recorder were pretty much useless.

But, my skills as a writer of fiction and nonfiction, editor, proofreader, and ghostwriter are still there. Even as being ‘stupid’ as I am now, my verbal ability is still extremely high. A bachelor’s from a top-notch college, years editing professionally, and helping friends communicate in writing means there is one area where my brain problem hasn’t destroyed all of my marketable skills.

It might not be possible for me to work on anything for more than total of two hours a day. It might take me three times as long to do the work. However, I’m better than your average proofreader because not only will the grammar and punctuation be correct, I’m also able to help a writer put their ideas on paper better than they can alone.

* This is a personal observation and should not be a substitute for advice from your medical professional.

Right now

I know I’m not completely useless. There might not be any jobs I can do in my area but then, again, I think my limit is maybe five to eight hours of work a week, depending on my schedule. Even so, that’s over twenty hours a month of time spent productively with a small income to augment my disability, which requires regular gifts for me to survive any minor crisis. And to get some of the cable channels.

I’m editing a romance and writing another. There won’t be any useful money from that for a while. But . . . to hold a job, to feel like I’m doing something productive, and to get to interact with other people as an equal? That’s one of the best possibilities I’ve had in, oh, a little over three and one-half years.


Susan Franzblau is currently convalescing in Vermont’s Northeast Kingdom with her lord and master (a mostly black cat named Raisin) while waiting for Western or Eastern medicine, luck, or chance to end an unrelenting severe migraine. In her copious amount of spare time, Susan reads, visits doctors, reads, goes to her acupuncturist, reads, watches TV, plays Sudoku, reads, beta-reads/edits/proofs colleague’s work,  and when the migraine eases up enough to let her think clearly, Susan writes sexy romance novels under a pseudonym and designs fun and comfortable clothing derived from photos of nature at www.vermontseasons.net.

You can learn more about her books on her Amazon author page and follow her hypnotherapy website, too!

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2 thoughts on “The ‘new’ me. Can I function in the world at my own snail’s pace?

  1. This was such a good look inside to how it feels to navigate the modern business world when we have to walk a couple of beats behind. Great article. Thank you for writing it. I look forward to more on this subject.

    Like

  2. A friend’s daughter had the same problem with the non-stop migraine. She eventually ended up at the Mayo Clinic where one of the doctors managed to get the problem under control. Sorry I don’t have any specific details, but thought that if you haven’t already tried Mayo, it might be worth your time.

    Like

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