01/07/2026
When you're managing this many symptoms, daily life is a real struggle.
And how I feel may change from one hour to the next. To those on the outside, this can make me seem "flighty or dramatic," unreliable or even dishonest.
Unfortunately, it is my everyday life.
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Here are a few recent examples:
Over the holidays, I had family in town, and plenty of plans/activities. And my birthday is in between Christmas and New Year's...
I started one day feeling ok. Went to my parents' for some holiday traditions and dinner.
Got home and was in terrible pain in my back, hips and neck...from multiple degenerative issues. Just from "normal activity."
Ended up with a migraine, maybe from nervous system overstimulation, maybe from not resting my neck enough (cervical instability/hypermobility/degeneration), maybe from rich foods my body isn't used to...
The interstitial cystitis in my bladder flared up (extremely painful)...was it sitting for too long, too much caffeine, MCAS flare? {Figured out later it was probably the cranberry/orange juice punch -- too much irritation for the bladder lining}. This took 3 days to calm down.
Left hip has been subluxing, causing pain (need both replaced), limits activity.
Dealing with an MCAS skin rash, that is so itchy I need ice packs to sleep.
Had a hard time getting comfortable enough to sleep well. More holiday plans the next day.
*Be happy and thankful to be with everyone for Christmas, no matter how I'm feeling*
I got glutenized at a restaurant on my birthday. This causes extreme gastro upset, joint pain, fatigue, migraines, skin issues and more. I was ok that day, until the dinner, where it hit me before I even left the restaurant. So much for evening birthday fun...
Today- Woke up feeling decent. Got some stuff done around the house, homeschool, phone calls/paperwork.
Pouring a large container of juice caused a painful pop in my forearm and it's been hurting since (probably tendon). Took son to an activity, met hubby for dinner, stopped by the store.
Neck has been hurting for days, causing headaches, dealing with it. Go to bed to watch show with hubby...five minutes after laying down, extreme pain hit in lower back & hips, nausea and pain in stomach (off and on for a few weeks now--again🙄)... Hubby goes into nurse mode. I feel guilty.
Did I do too much today? Did I sit weird in the car for too long? Was it the grocery store?
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These are just a FEW examples of a few days, not even everything I was dealing with during those times.
EVERY. SINGLE. DAY I am managing multiple symptoms at once, that are mostly outwardly invisible. I am good at masking. I am never "fine."
If I cancel on you, or have to tap out early...it must be really bad. Because this has been my life for so long, that my tolerance is extremely high.
I completely understand how others might find it hard to believe that there is just "always something wrong." If I wasn't living it, I might agree.
But this meat suit has faulty coding that affects every bit of hardware and software it has, causing glitches in every system it uses.
Clearance rack defective model🥴
This will get worse the older I get.
There is no cure.
There aren't even great treatments yet.
It is only managing each symptom, the best I can, mostly on our own because the medical field hasn't caught up yet.
My family is amazing. I could not do this without my husband, my rock.
The symptoms change and flare without notice. Sometimes treating one thing will set off another.
It's an awful, systemic, painful, life-sucking demon of a disease, that is still poorly understood, and widely unheard of by the general population.
I want to participate. I hate cancelling plans. I hate feeling like a burden. I want my life back.
I'm not crazy. I'm not unreliable. I'm not a hermit. I'm not a hypochondriac. I'm not a faker. I'm not an attention-seeker.
I am sick.
Have patience with me.
And pray for me🙏🏻
