#dSavannahDefects – F is for…

F…fatigue

If I need to quickly define my health issues, I say I have “chronic fatigue and chronic pain”. (Cuz even *I* can’t remember all 20-something of my diagnoses.)

As I described depression as being sad times 1,000, fatigue is being tired times 1,000. Times a million.

I just ran across a site called “Mis-Treated“, about a woman’s search for answers to health problems. As I’ve clicked and clicked and read a bunch of posts, I’m mentally jumping up and down (cuz physically jumping up and down would hurt). She is writing about ME. About MY Story. About dealing with being chronically ill and disabled.

She wrote a very cogent post, “Five Reasons Fatigue Isn’t Like Normal Tiredness (Proving Most People Don’t Get It)“. And it is SPOT. ON.

I hope she won’t mind if I share her five reasons:

5. Sleeping “cures” tiredness; it’s only mildly helpful for fatigue.

4. Fatigue can actually keep you awake.

3. Pushing through tiredness means you get extra work done; pushing through fatigue means you’re out of commission for a week.

2. Tiredness is to fatigue as a pimple is to face herpes.

1. Fatigue is a daily struggle; tiredness is a temporary inconvenience.

All of that is true. So very true.

What it feels like: being bone-tired exhausted practically every second of the day. If you have a little energy and do something, you know you’ll pay for it later in further, deeper exhaustion.

What it is: being so tired that nothing helps. You want nothing more than to go to sleep, but even sleep, once you fight your way there, doesn’t necessarily help.

Treatment: None. Seriously. None.

… fibromyalgia

dsavannah_defects_noballsAnother of my super-fun health issues.

As my chiropractor says, it’s kind of a “waste basket” diagnoses, because it essentially means no one really knows what’s wrong with you.

However, fibromyalgia is a “real”, “recognized” diagnosis, even if most people have never heard of it and don’t know what it is. Or, you only know the term from seeing those annoying medication advertisements on TV. You know the ones: that promise you’ll get better from one condition, but in the meantime, your eyeballs will fall out and you’ll bleed from your fingers and oh yeah, you might die. Medication that I have tried that did nothing for me but make me put on 30 lbs. Which is ironic, because extra weight on your joints can also cause pain.

Sounds fun, doesn’t it? Pain times 1,000?

What it feels like: Everything hurts. All. The Time. Prolonged pressure of any kind causes pain. My dog knocking in to me in her “I’m-so-excited-to-see-you” dance hurts. My cat lying on my leg hurts. My hubs accidentally brushing my arm hurts. Running into a wall (because I’m a big klutz) hurts.

And I’m not kidding when I say “everything”. Nor am I being hyperbolic. If I think about any part of my body, say, my little toe, or my elbow, or even my eyelid, it hurts. The hurt can range from a dull ache to a railroad spike being hammered into my spine to throbbing to tingling to everything in between.

What it is: According to mayoclinic.org, fibromyalgia is “a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.”

Treatment: There are some medications that are supposed to help, but in my case, they did nothing but make me gain weight. Or did nothing at all. (I’m sure they work for some people, so if you’re suffering, don’t NOT try just because it didn’t work for me).

I’ve tried muscle relaxers, all kinds of sleep meds, pain medications (from OTC to the ones that they warn you might get addicted to), physical therapy (which did help, but I can’t afford to continue with the co-pay), talk therapy (to learn to deal with this hand of cards I’ve been given, and which I’m continuing), chiropractic (which helps), and, as I wrote about under C (“coping”), exercise can help.

I’ve also had some positive benefits from some OTC pain creams, including arnica (I get the best relief from this, tho it would probably really help if I could bathe in the stuff), tiger balm (I use the patches on my back when a tornado pops up back there), and penetrex.

… friendships

One of the more depressing (to me, anyway) parts of having Invisible Illnesses, and being a Sick Person, is what happens to your IRL friendships. They… sort of disappear. (Thank goddess for online friendships. I can sit here in my PJs and wearing my sexy-sexy lumbar brace and not having showered for a few days, and no one knows. Or cares.) (Cuz taking a shower wears me out. And it’s difficult to wash my hair with arms that won’t go up, thanks to ye ole rotator cuff and frozen shoulder nonsense.) (And thank you soooo much to a friend who sent me an email yesterday. It means the world. Really.)

Prior to being this shell of my former self, *I* was the get-together planner. I threw the surprise parties; I found things to do and rounded people up; *I* made the contacts and the plans.

I can’t do that anymore. I’m a Sick Person. I haven’t the energy.

Now, I want to make this VERY clear – I am not pointing fingers at anyone in particular, nor do I cast blame or aspersions on anyone, because I understand the reasons, but … being a Sick Person means being a very lonely person.

And this is how it is (for me, not necessarily everyone) as a Sick Person:

  • If you were the planner and the get-together-er, and you don’t do that anymore, people kind of forget about you. They are used to you calling, and now you don’t, and they don’t even think about it.
  • You never know how you’re going to feel on any given day. Your friends don’t invite you anywhere because they know this. They also know you are flat broke and can’t really afford anything that costs anything.
  • Your friends don’t call, because there is nothing to say. And you don’t call, because there is nothing to say. (I literally have four calls to return to people who have called me, but I’m trying to wait until I don’t feel like death-warmed-over so the chat won’t be a big bummer.) (In the meantime, they probably think either I suck or that I don’t love them any more.)
  • Convos, if they happen, go something like this:

Friend: How are you?

Me: I feel terrible. My eye just fell out of the socket and I’m considering polymer as a replacement.* You?

F: <silence>

Or:

F: I’m doing great. I’m dancing up a storm, I just met Matt Damon, I’m dating a new guy, I got a huge raise and a promotion, and oh… <trails off, remembering how your life sucks right now and your eyeball mishap.>

*Note: this has not actually happened to me. :)

  • And sometimes, you just don’t want to get into all the crap that’s happening in your life because it’s too depressing. Or you don’t want to bring your friend down with all the terrible things in your life. So if there is a call, it’s very short.
  • And then, if you do actually make plans, and IF are able to do those plans, said plans (whatever they may be), wear you out so much you’re wrecked for days.

I have a friend who suffers from crippling anxiety and depression. She lives about 20 minutes away from me, a fairly easy drive (considering the general horrid state of traffic around here) and we love each other dearly. But it can be months between our visits, because she’ll be feeling bad on a day I feel good. Or vice versa.

It always lifts both our spirits when we see each other, but somehow, too often we just can’t manage the 20 minute drive (or even the getting dressed before hand) to see each other.

Thankfully, our friendship is strong enough to withstand this Sick Person business (partially because we only too well know what the other is going through)… but it seems most of my other IRL friendships have not.

And that, my dear readers, is terribly, terribly depressing.

…forgiveness

I almost decided not to include this topic – after all, my word count is already 950! – but since forgiveness is such an important part of healing, I decided I needed to write a few words about it.

But first, these words are from the book Love Letters from Vietnam by Alex Woodward, a singer/songwriter / writer who started writing songs based on people’s letters. (The first book in the series is For the Sender, and it, and LLfV include full-length CDs of the songs written.)

forgiveness

I read those lines, and my heart stopped.

“let go of hope for a better past”.

Damn.

Because, yeah, isn’t that what we want? I want my dad not to have abused me. I want the other things I’ve suffered not to have happened. I want my first marriage not to have failed. I want to not have hurt people I love. I want to find that Ford jacket my first love gave me, that somewhere along the way got lost. I want to be a better friend. I wish I’d written more over the years.

But none of those can be un-done.

The past is gone.

I have to forgive my younger self. I have to forgive my past. I have to forgive my friends who don’t live up to my expectations and can’t stay in my life the way I would wish.

I have, with a LOT of work, forgiven my father, even if I can’t forget.

And that’s not what forgiveness is; it’s letting go of the hurt, while remembering what happened and the lessons learned.

I have to continue to hope, believe, and work for a better future.

I have to forgive.

And so do you.

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

dSavannah

About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
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16 Responses to #dSavannahDefects – F is for…

  1. Joy says:

    Excellent writeup of fatigue. Man I hate it and am too diagnosed with CFS. Hope you get better soon!

    Joy @ The Joyous Living (F: Fritzl Case)

    • dSavannah dSavannah says:

      Ugh. I’m sorry you suffer from it as well. I really think I have CFS because all the symptoms sounds just like me. Course, I’d rather not have any of it!

      Hugs to you!

  2. Hang in there, Goddess! I’m on your side.

  3. After reading this one, my sympathy for you is at an all time high. And I feel a bit like a whiney-butt for complaining about my milder discomforts. I’m glad you find comfort in online friendships. That bit about letting go the hope of a better past is quite an epiphany. One a lot of us could use some time contemplating.

    @mirymom1 from
    Balancing Act

    • dSavannah dSavannah says:

      It’s okay to complain about your discomforts… you just can’t live in the complaint-zone all the time!

      And yes, it was an epiphany for me too. A big one. I’m glad it is one for you as well.

      {{{hugs}}}

  4. Linda says:

    I’m sitting here curled up on my sofa in my pj’s with wicked bedhead and it’s been like this for a few days, I managed to get the flu on top of everything else. Your post describes everything I am feeling and have been feeling for so many years. We may be separated by miles but not by heart. You get me and I get you. Let’s hang out in our pj’s together. ~ hugs ~

    • dSavannah dSavannah says:

      Hanging out in PJs together – commencing now!

      Ugh. Sorry you have the flu. *knock on wood* I somehow manage not to get “normal” illnesses these days, even with a suppressed immune system. Probably since I never leave the house. (So there’s one benefit!)

      {{{hugs back to you}}}

  5. I suffer from fatigue related to iron deficiency anemia. I’m working through the treatment. When I experience fatigue I feel like I’m just not even participating in my life.

    I think you could have ranted on here about “Fake” as well, because I know others who suffer from fibromyalgia and fatigue and they are constantly fending off the stupid comments of people who think these aren’t real things.

    Just because medical science can’t explain why something is happening doesn’t mean it’s not happening.

    • dSavannah dSavannah says:

      Ugh. You poor thing. I had anemia before, and while my iron is “low”, apparently it’s not “that” low. Whatever that means.

      And I often feel like I’m not participating in my life. Just trying to survive each day.

      OHhhh yeah. I could rant about “fake”. I wish all this crap was “fake”. But it’s all too real. And I think the topic’ll be under “I” for “Insults”. ;)

      And… getting on my feminist soapbox… I think a lot of ailments suffered by women aren’t even STUDIED by science. IBS only became a “real” condition after men started to complain about it.

  6. Betsy says:

    F….is for FABULOUS blog.

    Great description of fatigue and fibromyalgia. Reading about it is one thing. Hearing about it from someone living with it another thing.

    You know how important friendships are to me. I think most people want to be there for their friends. Why aren’t they? Sometimes I think people are having their own struggles and have a hard time being there for anyone but themselves. I also think some friends just do not want to add any burden to friends that are struggling. True friends will be there or will eventually come around.

    Forgiveness is such an easy word to say but such a hard process. Glad to see you on that path.

    • dSavannah dSavannah says:

      You are absolutely correct. I do agree that most people don’t intend to be absent; it just works out that way because of things happening in their own lives.

      I’ve also come to learn that some people are only in our lives for a bit, but they are there for a reason, and perhaps when we don’t have that “need” (whatever it is) anymore, they go out of our lives. I am trying to learn to accept the “going” of some…

      And yes, forgiveness is a “path”, not a one-stop shop. Bummer. Guess I’ll have to keep working at it.

  7. Fatigue? I don’t think I’ve ever been exhausted all the time…to the point of fatigue.
    I hope I never experience that.
    Sounds like a life-draining force, sucking…sucking…sucking…everything out of you…
    I think you are incredibly strong.
    Take care of yourself.
    Writer In Transit

    • dSavannah dSavannah says:

      If you haven’t experienced that, you are very blessed. And I hope you never do! Yes, it is very draining and I often feel completely wiped.

      Thank you for reading and for your kind words.

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