A Top 10 List for Fibromyalgia

I'm coming up on my one year "anniversary" of being diagnosed with fibromyalgia. Thinking I'll buy myself a cupcake and a venti caramel machiato to celebrate. [Sarcasm font deployed].

The other night as I painfully crawled into bed I started thinking about this blog post - which in itself is a dangerous notion because I can't remember shit most of the time. That I remembered some of what I wanted to write is AH-mazing.

As I thought about my life PF (pre-fibro) and how I feel now....every single day....it's kind of sad. I honestly can't remember the last time I didn't have some level of pain in my body. I'm sure it was some time back in late 2015, but that "old" me is gone.

One of my boards on Pinterest is labeled 'Fibro Girl' and it is where I post all the fibro-related pins I find, whether they're snarky ecards or "do this to feel better" ideas. Several of the pins are "things I wish people understood about fibro" memes.

And so, I thought I'd share a few things with you (my seven loyal readers....lol) about what I wish people understood about my fibro (because MY fibro might be totally different than your best friend's sister's boyfriend's mom's fibro).

1. Most days my pain level is a 2 or 3. [Click on photo below to see what these numbers mean]. On a rare occasion it'll be a 4. I have had a few days where I made it to 5. That's when I sleep and avoid people at all costs. But on any given day - including today and probably tomorrow - I'm a 2 or 3. Today I'd say I'm a 2 but might be headed toward a 3. Last night I was a strong 3. I had pain radiating from my shoulder blades into my collar bones. This morning Emma hugged me and it hurt. Pain is a daily thing for me.That's why they call it CHRONIC PAIN. I cannot remember the last time I didn't have some level of pain. Chew on that for a second. Chronic. Pain.

2. I'm not kidding when I say I don't want you to hug me. Or touch my arm or shoulder. Or grab my arm because something really exciting happened. Or pat me on the arm. Or the back. It really does hurt when people touch me. I'm not being overly-dramatic if you grab my arm (like one person at Emma's school is prone to do during meetings) and I say "OUCH. That hurts." I am super sensitive to being touched and quite frankly I don't like it. If I go in for a hug that's my way of saying it's OK to hug me. Otherwise, hands off me people.

3. Noise bothers me. A lot. If the TV is too loud (as my kids and husband are prone to do) I turn it down. If the whole family (all 10 of us) are together and everything is talking loudly it is literally like nails on a chalkboard to me. I can't handle it. If we're in a restaurant and it's really loud I can't handle it. The only way I can explain it is this: I can't think straight when it is too loud and it feels like my brain is short circuiting. I think I'm going to need headphones just to get through my flight to Orlando this weekend.

4. If I say I'm "OK" when you ask how I'm feeling, that doesn't mean that I'm feeling great (see #1 above). It just means that I don't feel like talking about how I really feel. Probably because I think you won't understand it.

5. I might joke about my shitty memory but my "fibro memory" and brain fog are seriously awful. I hate that I can't remember things without writing stuff down on at least two lists. I literally have a "to-do list" and a "don't forget to do this list." Most days, I will think "OK, I must do [insert random task here]" and if I get distracted even for a minute or two, game over. I won't remember what I was supposed to do. Brain fog takes all of this to a whole new level. My day can be going great and out of nowhere my train of thought derails and that's it. The only way I can explain it is this: it feels like a swarm of bees buzzing about in my head (like I literally have a bee or 20 in my bonnet) and I can't focus. On anything. That's when I walk away and take a nap and hope my brain reboots. I hate this feeling more than anything else because I feel stupid.

6. I am super moody, and the pain makes it worse. Sure I have good days where my mood is fine and all but....no shit, that can change on a dime. When I don't feel good - when the pain is closer to a high 3 or low 4 - that's when I get really snappish and you should probably avoid me. I also have a low tolerance for people in general when I feel like shit. You've been warned. ;-) [Ask Kevin how I act when I'm snappish. That guy deserves a f*cking medal for putting up with me when I'm in a "fibro mood.']

7. I have to take a pill to help me sleep at night. That pill has made me gain weight and I can't lose that weight. Which makes me feel even shittier than normal. Like, I'd love to lose 70 lbs (for reals) but the mere thought of exercising is exhausting. Lately, I've had to take 2 of those pills each night to help me sleep. Why? Because I am prone to wake up in the middle of the night with horrible pain in my elbows and hips and collar bones and if I take two pills I fall back to sleep easier. Imagine for a minute that you wake up in the middle of the night not because you heard a noise or because your husband is snoring but because you hurt SO MUCH that the simple act of rolling over in bed is excruciating. Welcome to my world.

8. I hate having fibro. Like for the longest time last year I kept thinking "this will go away and I'll wake up tomorrow and I won't be in pain." That hasn't happened. Which means I've had to accept this. I hate that going to the grocery store is exhausting. I hate that usually the simple act of taking a shower (especially on a 3-4 pain level day) is exhausting to the point that I have to sit in bed for 20-30 minutes just to regroup enough to walk downstairs. (Yes. Really. Taking a shower makes me tired.) I hate that as I'm sitting there typing I have flames of pain radiating out of my shoulders and collar bones and down into my elbows. I hate that my kids feel like they need to ask if they can give me a "real hug" or an "air hug." I hate that I feel like people will think I'm just being a complainer when I talk about how crappy I really feel.

9. The only thing I can do is power through every day. Even if I'm in pain (which remember IS every day) I have shit to get done. I have a job. I have laundry to do. I have meals to cook. I have ballet classes to drive to and basketball games to attend. I can't let fibro hold me back. And I will power through it ever single day. I have no other choice. But on any given day there might be one thing that sets me off - the weather, hormones, stress, lack of sleep, change in temperature, change in routine. This week it has been a four-day-long headache that sent me to bed at 8:45 Tuesday night because the pain was THAT bad and I felt that if I didn't go to sleep I would be sick. Like vomiting sick. I just never know what is going to be that thing that knocks me on my ass. At the end of this week it'll be the temperature change - which I can already feel BTW.

...and finally....

10. This. And this

No comments:

Post a Comment