How do you handle holiday decorating with your fibromyalgia?
I love Christmas and usually look forward to decorating the day after Thanksgiving, but I’m dreading it this year.
Why?
Because I’m dreading the pain I’ll have as I twist, bend, and move while I deck the halls and trim the tree. I dread the days after I’m done, when I should be basking before the soft twinkle of Christmas lights as I sip my coffee, and instead I’m relegated to the sofa with my heating pad and muscle relaxers, doing my best to ignore the throbbing in my joints and head. Praying the throb in my head doesn’t escalate into a migraine, because I took my muscle relaxer and can’t take my migraine meds for fear of developing Serotonin Syndrome.
Because I know my body will kink and seize and cause me pain that steals my breath, my energy, and my will to enjoy the effort I put in…because I know that the light of the holiday season will dampen and dim as the pain brightens and conquers…me.
Still…I will decorate. Because there will be moments, fleeting moments, where I’ll catch the glow and feel the spirit of the season. I’ll look for those moments and cherish them.
Struggling hard today. I don’t really have anyone to talk to about what I’m going through. When I try to talk to the people I love, their eyes glaze over, they change the topic, they don’t want to hear about it constantly. I get it, because I don’t want to feel this way all day every day without an end in sight because there is no cure. I get to be in some type of pain forever.
I’m so tired, beyond the fatigue, I’m soul-weary. I’m always disappointing someone. This isn’t who I am, or who I want to be, but the constant pain and mental deflation are killing me, leaving behind a husk of my former self.
The last flare I had brought me this low. I was able to scrape and claw my way out of that pit of despair, but can’t seem to sustain the effort this time.
Hey fibro warriors…anyone else’s eyesight change throughout the month?
I had to get bifocals recently because I was suddenly having issues seeing up close (I thought it was due to my age) but after a week, I was having trouble seeing with my new glasses and no longer needed them, then the last couple of days, bam! Back to needing the new glasses…wtf?
I’ve also had issues with intermittent focusing issues for years. One eye would just unfocus on its own, and I’d have to look away to refocus it…super annoying! Is that a fibro thing??
Anyone else have these issues, or any issues with their eyesight?
It was the strangest experience to take my ADHD meds for the first time…
“This is how neurotypicals think all the time…WTF?!?”
It was eye opening and frustrating.
I got so much done and was able to get everything I needed to do organized…that was the eye opener.
Wondering what I could have accomplished had I been diagnosed with ADHD at a young age…that was frustrating.
I’ve lived so long in a kaleidoscope of emotion and action. Excelling in some areas, digressing in others, pretending through them all that I was what people expected.
I didn’t know that the reason I felt so different from everyone else was because my brain worked differently. Instead, desperate to keep what I thought were my flaws a secret. I people-pleased my way into anxiety, panic attacks, & self loathing. Until, at my worst, I found myself curled into a ball in the corner of my closet. Stimming, sobbing, and wishing I could just sleep until everything was better.
There is a lot more to that, but I’ll spare the worst & lowest in this post…let’s just say that getting diagnosed with ADHD (and later ASD) and choosing medication helped me see that it isn’t me. It’s just the way I fit in this world. A world built for neurotypicals and not neurodivergents.
Trying to fit a square peg in a round hole would leave both frustrated, irritated, and not in sync.
Am I happy, especially as I get older, that I need meds to smooth my edges enough to “fit”?
No. Of course not.
It sucks.
I miss things right in front of me, but catch things no one even thinks to look for. I’m either behind everyone or miles ahead. Either way, I make those around me scratch their heads, while I pull out my hair.
Medication makes life easier, but I’d love to experience a world where being me, thinking the way I think, was an asset and not a liability.
Anyone else discover drawing/painting as an adult? It’s strange that I never thought I had any talent for either growing up. I never took classes and never even considered I could until I attended a paint-n-sip.
The firat painting I ever did was a Venice waterway (black and white with a red gondola) and it wasn’t great, but it wasn’t awul. It was hope that maybe I had some kind talent. Over the years I’ve expanded and tried all kinds of mediums. Last year I was introduced to digital art and got my first Apple pencil.
I fell in love.
Digital art has all mediums at your fingertips.
I know it isn’t the same…but…
There is no clean up or running out of supplies.(my ADHD brain and fibro pain thank me) I can experiment and try new things without fear of ruining hours of work. As an aphant, I need that. I can’t visualize, so if I have an idea, I have to go for it and the result isn’t always what I want. With digital art I can separate the layers, experiment until my heart’s content, and delete what doesn’t work.
It’s great to combat the frustration and depression that life likes to dole out.
Every time I think I have a handle on life, life proves that I, in fact, know nothing about anything.
Still, I try.
My current goal is to manage my fibro flare well enough to start working out again. When I was in remission I lost 100 pounds and got healthier than I’d ever been and I was working out 5 days a week.
Granted my idea of working out is putting on my VR headset and slicing beats with my saber.
It was fun and I worked up a sweat…and I miss it.
(I never felt that way about a Stairmaster)
Unfortunately, stress quadrupled (as it does in life), and I started gaining weight here and there, but overall I was still okay.
Then more stress triggered a flare. As it worsened, I started experiencing headaches and migraines 24-48 hours after working out. So, I started spreading out the workouts to manage it…until I had to stop all together because on top of headaches, the fatigue kicked in and the migraines became more constant. Then came the joint & hand/wrists & feet/ankle pain.
So I haven’t been able to workout with any regularity, and I’ve gained more weight. The gravity of it all has caused an emotional roller coaster that’s dipping really close to Depression Land, which I have no interest in visiting.
Long story short, with my fibro diagnosis along with the ADHD/ASD diagnosis, I’m now on meds which help. The meds don’t take the pain away, but they take the edge off, so I’m trying to put exercise back in. The dopamine from exercise can help feed my ADHD brain, help lose the weight I’ve gained, and help keep me from stopping in Depression Land.
I did 15 mins of Beat Saber on Monday and so far the pain is manageable. I’ll see how I feel tomorrow and decide if I want to try another 15 mins or maybe switch it up and do some yoga.
It’s been great having a name for the pain I’ve had my entire life…naming means I can step back from the life-draining-medical- cycle of:
Experience pain ➡️ see my GP ➡️ bloodwork ➡️ Normal results ➡️ refer to specialist ➡️ more bloodwork & expensive tests ➡️ normal or inconclusive results ➡️ Specialist, “Don’t know, sorry.” ➡️ Me: weeks wasted, still in pain, & now with a bunch bills 💸 ➡️ pain moves ➡️ cycle repeats 🔄
I’d apologize for being dramatic, but chronic pain without a cure is a drama. For example, I’m currently in a flare cycle where intense fatigue and lower back pain are center stage, with hand and joint pain swaying in the chorus. Meanwhile neck, upper back, and shoulder pain are in the pit conducting the play and inciting headache & migraine to swoop in like The Phantoms of My Fibro, to stop the show and knock me on my ass.
Anyway, I’m looking for non-medication pain management options that I can use with my meds. I’ve been seeing info on TENS machines for fibromyalgia. Has anyone used one before? How did it work for you?
I’ve spent years in doctor’s offices, getting tests, and being made to feel like I’m crazy. Yesterday, I finally got a diagnosis…fibromyalgia.
It explained A LOT…and gives me an explanation for all the seemingly unconnected issues and chronic pain I’ve dealt with my entire life.
A lot of people don’t like labels, and I understand not wanting to be defined by one thing, but I’m happy to put a name to something that has caused me endless worry and money.
Now, I can be exhausted waking up, have pain in my hands appear out of nowhere, or consistent migraines, or ribs so sore that I wake from sleep every 45 mins to turn over and not worry it’s arthritis or cancer. I don’t have to drag myself to the doctor to be referred to expensive specialists who run expensive tests that all come back negative or inconclusive…instead I can understand that it is probably my Fibromyalgia, and that I’m in flare…and it sucks, but I can ramp up my self-care and push through (just not push too much)
Chronic pain sucks, but not knowing what is causing the pain while people make you feel like a faking-freak-who-just-wants-attention… is worse.
For anyone unfamiliar with the term, an aphant is someone who has aphantasia, or someone with a blind mind’s eye.
What the eff does that even mean, you ask? Well, let me explain:
If you ask a person with aphantasia to close their eyes and picture an apple…they see…NOTHING. That’s right…nothing…just darkness. Not even a faint outline of an apple. Just a blank screen.
When I realized I had aphantasia, I was shocked, bewildered, and quite upset. As someone who always considered themselves one with a rich imagination and the ability to daydream the day away, it was quite Earth-shattering to realize that my daydreams are NOT the same as 96%-99% of others on Earth?!?
I felt completely ripped off!
Aphantasia affects 1%-4% of the WORLD’s population! That’s it! (Though I think it is probably higher, because if people are like me, they aren’t aware of it…)
You see, when most people “count sheep” to try and sleep…they actually close their eyes and see SHEEP! …or…at least some version of sheep. Sometimes the scene is very faint, just vague shapes, others see black and white, or just outlines…yet still others, (like my husband…the lucky SOB) see a technicolor movie of sheep jumping fences that he can manipulate, adding a saddle with a monkey on the back of one, if he wanted to.
Me…I. See. Nothing. Darkness. An infinite void…no matter how hard I try.
As an aphant, I don’t have the ability to visualize. Instead , when I had to “visualize” in an exercise at school, or during meditation, I didn’t see anything…I conceptualized…I just, sort of, knew it.
Some aphants describe it like a computer with all the information and memory, but no screen to show it. I guess that is accurate…though it feels cold. I can daydream for hours without seeing a single picture in my head. Though most of my daydreams are more about the feelings and inner thoughts of the stars of the daydream.
Which makes sense to me, because when I write, the scenery and exterior atmosphere is second to the emotional noises going on in the hero, heroine, villain, or villainess’ heads…I connect with the character not the environment. I always have to go back and fill that part in later.
Any other aphants relate? Or have your own experience?
Aphantasia is a characteristic where you can’t form mental images to “see” things in your head. Learn more about this trait.
This past year has been full of revelations and most have been life altering. In the past year, I’ve been diagnosed with ADHD & highly likely autistic, and found out that I have aphantasia (which means I have the inability to visualize…my mind’s eye is blind, which is fascinating and saddening).
Aphantasia is a rabbit hole, which I’ll save for a different post. I’ll concentrate on the AuDHD…
Apparently, women and girls are under diagnosed or diagnosis has been missed completely. It seems we women/girls have the ability to “mask”, a term I have only just become aware of but completely relate to!
As a masker, we can “fit in” with neurotypicals, but at a price. Masking is expensive, it costs us our mental and physical health. The constant vigilance causes anxiety and stress which in turn triggers inflammation and pain (just to start). As a masker we naturally become a people pleaser and mentally bend ourselves into the shapes that those around us demand. We’ve had the mask so fully “on” that many of us lose ourselves, and blame ourselves for being “broken”.
My inner dialogue was AWFUL! I was horrible to myself and it wasn’t fair. It wasn’t my fault. My brain works differently than others, that’s all. It isn’t anything to be ashamed of, and I’m not. Not anymore. That being said, I still have to live and work in a neurotypical world, so I’ve had to come up with my own ways of doing it, and I’m still working on it.
I chose medication as one of my tools and luckily I found an ADHD med that work for me. With it, I’m better able to focus on tasks and emotionally regulate…MAN, I wish I had been diagnosed at an earlier age.
I’m 44 and was diagnosed over the summer, now I wonder if I had known why I didn’t easily “fit-in” and why everything was so hard, would it have made my life easier. Not that a diagnosis and medication magically made me neurotypical, it didn’t. I still struggle…every day…but as G.I. Joe used to say, “Knowing is half the battle.”
Knowing how my brain works is helping me build a life that works for me. It isn’t perfect, I still fall into “bad” habits, but I’m not giving up. I’ve been trapped in my own mind, buried under the rubble of misconceptions and missed diagnoses, but I’m slowly freeing myself, one traumatic rock at a time.
Are you MIND BLIND?
If I asked you to close your eyes and picture a brown horse in a field. Which of the pictures best shows the clarity of that visualization?
