#dSavannahDefects – M is for…

My theme this year for the #AtoZchallenge is #dSavannahDefects, aka “What’s it’s like dealing with #InvisibleIllnesses”. Or, in short, {some of} what’s wrong with me.  And I really am truly sorry that I haven’t been reading or commenting or tweeting or promoting the other blogs I’ve been following. Y’all are great. It truly is not you – it’s me. And the only few good hours I have in each day.


M... maintaining

My therapist suggested this topic, and I thought it was a good one.

When you suffer #InvisibleIllnesses, you still attempt to maintain your life. As best you can.

But many days (like for me, today), you wake up feeling like death warmed over that was run over by a giant truck and perhaps for good measure flung around in a tornado, and the sound that wakes you up is that of your cat horking on your bed (true story), and then you have a hot flash (getting to be a certain age as a woman is just fun city, I tell ya) you have two choices:

1. cry and crawl back in bed and pull the covers over your head

or

2. Get up and do something.

I did both. I crawled back in bed and cried a bit, then I got up. One of my besties calls it putting on her BPGs (Big Girl Panties). But me? I put on my wrist guards and my lumbar back brace, and here I am.

I pulled a few weeds and stripped the bed and started laundry. Yes, I’m having to rest between each “activity”, but I’m doing it.

I’m trying to maintain as “normal” a life as I can. I’m trying to maintain a household. My spirits. How I feel about myself (which is usually bad, but I’m trying to feel better). My relationship with my husband. And improve my relationships with people I care about. All of it takes work.

Now, I’m gonna share with you a great post on The Mighty (and if you aren’t already following them, and you suffer, please do so… you’ll probably cry at every post you read, but it’ll be worth it. I promise.). This writer, , wrote something called “To the Person With a Chronic Illness Who Doesn’t Feel Strong Right Now.” I just read it again. It’s good stuff.

… medication

There are all kinds of different medications out there for all kinds of different conditions.

And they all have side effects. Seriously. The side effects are enough to turn you off from taking medications ever. again.

I have an 11-page document I call “health info” where I keep details on my doctors (current and recent past), diagnoses, medications (current and recent past), allergies, and procedures, and I take it to each new doctor. (They rarely pay attention. My new allergist did, tho. I was shocked.)

Pile of my meds and supplements. (I shared this photo last Oct.; it's a little less now, but I'm too tired to take a new photo.

Pile of my meds and supplements. (I shared this photo last Oct.; it’s a little less now, but I’m too tired to take a new photo.)

In looking at the list, I am currently taking 7 medications, and 7 supplements. The previous meds & supplements number 34. (I went off them for various reasons; allergy; they didn’t work; etc.)

I also had vitamin C given to me intravenously, four times, which isn’t on the list. (It was for my chronic Epstein Barr Virus. We’ll see if it helped any.)

I totally had to create a spreadsheet to keep track of my meds and what to take and when, and to mark off when I do so, because otherwise I won’t remember.

Again, I was taking a LOT more stuff at one time, but my primary decided (and I certainly felt it) that there was just too much, so right now I’m taking pretty much just three classifications: anti-depressants, joint health, and pain management.

Some people believe that doctors are too quick to throw medications at a problem without understanding the underlying cause. And yeah, that’s true. I’ve experienced that.

Other people think you should NEVER EVER like ever take medication for anything. I don’t believe that either, tho for some reason, I used to.

I believe there should be a balance. If you need medications, by all means, take them, and don’t be afraid to do so. If you don’t need them, don’t feel pressured into taking them.

You do what’s right for you. You win, every time.

… migraines

You know how I said fatigue was tiredness times 1,000? And depression is sadness times 1,000? Well, migraines are headaches times 1,000. (I’m not really sure why I’m talking about something to with heads again, but I thought I’d delve a little deeper into migraines.) Most people have heard about this particular #InvisibleIllness, but many have never experienced it.

So, according to ye ole google (my favorite source of info), migraines are “a headache of varying intensity, often accompanied by nausea and sensitivity to light and sound.”

“Varying intensity”. HA! I mean, yeah, some are worse than others, but … that sounds like some aren’t too bad. They are. They all suck.

And calling it a “headache” is like calling a saw through the arm a “paper cut.”

Google also says that about 3 million Americans suffer from migraines. Headaches are not fun, but a migraine is flat-out debilitating.

I began suffering from migraines in high school. (I might have had them earlier, but that’s the first time I remember.) I would walk outside after school into the blazing hot Florida sunshine and bam! Migraine. Those were (more than likely) caused by hormonal changes (teenage girls and hormones! Oh boy!), and eventually I (thought) I outgrew them.

Sadly, I did not. They never really went away entirely, but started up again in more frequency than before. And now they seem to be getting worse again since I’m on the other end of the hormone train: starting menopause. Fabulous. (Not.)

Migraines can be experienced in different ways. Some people have visual auras. I don’t get this particular fun manifestation, but I know people who do. I imagine it’s like having a particularly aggressive rock concert laser and light show – in your eyeballs.

Another symptom, one I experience, is severe sensitivity to light. Pretty much the only thing you can do for that is to get in a dark, cool room.

I also have sensitivity to noise. And again: dark, cool, quiet room is a must.

Others get nausea, ranging from mild to so severe it causes vomiting. I never had that issue before, and now I’m starting to. (Oh joy, unbounded.) Nothing like having a pounding head and a stomach that makes you feel like you’re seasick.

migraine

I tried to find the artist for this work, but a search just led me to more and more pages with no details. But this is *exactly* what it feels like.

Pretty much always, a migraine feels like a vice around my head. There’s usually some sort of pounding going on. Sometimes it feels like small elves are attacking my head with metal staves and pounding them in with metal mallets. Sometimes the vice moves around, but it generally stays in one place – back of my head to the other side of my head.

My pain doctor diagnosed me with occipital neuralgia, which basically means that my migraines are caused by some sort of injury to the occipital nerves, which per WebMD “run from the top of the spinal cord at the base of the neck up through the scalp”. Of the list of nine medical conditions associated with occipital neuralgia listed on the site, I have five of them.

And… medication doesn’t really help. My primary doctor in Arkansas tried to put me on a daily pill, but … big surprise … it didn’t do anything. I have a medication that can sometimes help – IF I can catch it in time and crawl into bed into my dark, cool, quiet room. That med used to knock me out, which was preferable, but the knocking-out thing seems to have stopped working. Big bummer.

If you want to feel what a migraine is like (and you really don’t, trust me) (but you should, to develop ye ole empathy), stop by The Migraine Experience. Watch the video, read the stories. Pray to whatever deity you believe in that you never get them.

… mold

You’ve heard of mold, I’m sure.

You’ve probably even seen mold, and perhaps smelled it.

But did you know that mold can cause a HOST of health issues?

Lucky me got diagnosed with Toxic Mold Syndrome last November. It is a real thing, and lots of people suffer from it, even tho most of you haven’t heard of it. It’s worse than just an allergic reaction.

And I know I should write more about it to explain what it is, and how it affects me, but I’m honestly too tired. So I’ll just stop with some other sites you can visit to learn more:

I have gone through an entire mold removal protocol, which if I feel up to it, I might write about in another post.

More ramblings / other posts you might want to read...

dSavannah

About dSavannah

~ disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ when my brain & body cooperate: #writer #editor #artist & #bibliophile ~ also #feminist #ally
This entry was posted in #AtoZchallenge2016, #dSavannahDefects, health, illness, learning, making a difference, mental illness. Bookmark the permalink.

6 Responses to #dSavannahDefects – M is for…

  1. Elaine LeDoux says:

    As a lucky owner of migraines I know whereof you speak…I get the crazy visual auras before which in a way is a Godsend because I can medicate right away!

  2. Betsy says:

    Maintaining….it is better than going backwards. Hang in!

    Medications…they can help, but they can sure be a PITA, too. I hate having to keep track of my own. I can only imagine what you have to do.

    Migraines…I have had these my whole life. I understand completely. I always love when I mention a migraine some people said oh you had a headache. No, that is completely different. People who do not have them will never understand.

    Mold…this was one of the issues I had never heard of until you….people having mold in their body. Hoping that this issue can go away!!!

    M is for Magnificent blog. :)

    • dSavannah dSavannah says:

      Yeah. No. Headache does NOT = migraine. At. All.

      I think the mold issue is better because of everything we’ve done. Unfortunately it doesn’t seem to be the only problem, so here’s to figuring it out… eventually!

      Aaw! You’re so kind!

  3. Doctors do love medications, don’t they? Always looking for the quick fix, instead of the deep understanding and lasting change. Maybe that’s why my villain is a doctor . . .

    @mirymom1 from
    Balancing Act

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