Periodic Paralysis

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Work life balance, when your work is your life.

It’s 6. I responded to 50+ alarms last night. I was teetering on the edge of the bed I share with my child- trying to sleep between blaring lights and loud beeps. A normal night before a normal day. A friend recently complained about “work life balance.” Annoyed with being called at night occasionally-with how disruptive that was, how little praise was given. In my sleep-deprived state, I googled to see what the fuss was about. Forbes had some tips and I read them as a person whose “work” is indistinguishable from their “life.” “Let go of perfectionism.” No one is perfect, but some of us don’t have the option of lowering our standards. There’s never been a day when I thought I did enough- so I guess I’m doing this backwards. As a mom, I try everyday to be better. “Unplug.” Enjoying the moment is something everyone should do, especially parents who understand the fleeting nature of time. But, we track meds, and symptoms around the clock. “Exercise and Meditate.” Does crying in the shower count? (With the door open of course, because you are *still* “oncall.”) Workouts come in the form of running late to an appointment and getting to do all the loading and unloading at warp speed. “Limit time wasting activities and people.” When you’re a caregiver, often your priorities ARE someone else’s. That’s kind of the point. “Change the structure of your life.” This tip revolved around getting out of a rut, and focusing on the tasks you value most. Ruts are critical in a lot of households- without them, mayhem can take hold. I focus on what HAS to be done and that leaves dishes and an immaculate house sitting on the back burner. Delegating was mentioned, and I nailed this one. I got a roomba on sale. And now I delegate sweeping. “Start small. Build from there.” This is the only tip on the list that really resonated with me. The ONLY way that I can imagine having changes occur, is slowly and in bits and pieces. In some of the groups we celebrate inchstones, instead of milestones. Small, maybe, but mighty progress.
So how DO you find balance when your work and your life are one in the same? I still don’t know. I love my job, as a mother. I love my job as a caregiver, although I would give anything to go back in time and take at least some of the struggle from my child. Not because I want to “work” less, but because I want him to suffer less. While the husbands and friends out there are complaining about THEIR work life balance, I do wish some would look around and see the moms (all the moms, but especially those with medically complex kids, kids with disabilities, neurodivergent kids, etc.) that are not only oncall 24/7 usually in unpaid positions (hey! Check out the waivers in your state for paid parent caregiver options), but also don’t have the option of meditating in the park. For me, I think I’ll throw this imaginary scale out of the window and just keep on keeping on. #SpecialNeedsParenting #MedicallyComplexChild #PeriodicParalysis #SleepApnea #Disability #Rare #Laryngomalacia #Pharyngomalacia #ChronicLungDisease #Dystonia


Pep talk?

Hey everyone,

I need to go though another round of medical care. We moved and I have specialists in my known diseases I need to get established with, and I have new and alarming symptoms which may have serious causes that need to be evaluated.

Even though I'm being treated well currently by my medical providers, and have real diagnoses for the symptoms that were originally called psychosomatic, I'm having a lot of trouble trusting and not having panic attacks. I'm worried any little thing I say is going to make them change their minds and not help me because it's "psychosomatic", and I desperately want and need help right now. I don't want to keep being this sick, and if the knots can be untied slowly and in the right order, Lord willing perhaps I don't have to be this sick.

So how do I do it? How do I get through medical care without losing my mind?

Anyone have a good pep talk? :-) ❤️

#RareDisease #Disability #LivingWithPOTS #PsoriaticArthritis #PeriodicParalysis #Anxiety #PanicDisorder #CPTSD #AntiphospholipidSyndrome #Dysautonomia #MalDeDebarquementSyndrome #OvarianCyst #VonWillebrandDisease #CheckInWithMe


PSA: You can Opt out of Care Everywhere!!

Doctors sharing notes can be extremely detrimental when you have a complicated medical history. Even changing medical systems often isn't enough to escape something wrong/misleading a doctor once wrote about you or diagnosed you with because of "Care Everywhere", which lets all doctors using Epic see each other's notes.

You opted in without knowing it, but you can opt out.

The good news is, you can opt out! You can get back in control of who sees which notes from your past! One bad doctors visit doesn't have to be it ❤️

To opt out Google "NAME OF YOUR HOSPITAL/CLINIC" and "Care everywhere opt out" Fill out the form you find (should be a simple one page with check boxes), and send it in!

Hopefully this will help someone else. I was just able to do it (and just saw the records are really not shared anymore!), and though being told my problems were psychosomatic was deep back in my chart, it's existence still made me nervous. Now I not only have diagnoses, but I don't have to worry so much about the past getting drug up.

#RareDisease #Undiagnosed #Disability #PTSD #PsychosomaticSymptoms #Psychosomatic #Undiagnosed autoimmune disease #autoimmune #PeriodicParalysis #FibromyalgiaDiagnosis #Fibromyalgia


How do you find your limits?

I'm struggling trying to figure out what is within my limits. It seems like my limits shift moment to moment, hour to hour, day to day. Yet I want to be able to do as much as I reasonably can do, how do I figure out what that is?

Is there a system you use? Do you just play it by ear? What has worked for you?

#PsoriaticArthritis #ChronicIllness #Spoonie #MyalgicEncephalomyelitis #Disability #PeriodicParalysis #Fatigue #PanicDisorder


1st film about my disability #ChronicPain #PeriodicParalysis

I just finished a 48 Hour Arthouse film competition by myself, and it's the first time I used my own disability as subject matter. Though fictionalized (my wife didn't leave me, and I can't see through time), it was a strange experience, even more so now that it's publicly online, in competition against other, sillier short films.

I would mean so much to me if the community could help show support by "Liking AND Commenting" on the video, since that's how they judge the Audience Award. Do both and its counts twice!

#NeedSupport #FeelingVulnerable

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“Oh cool! You *get* handicap parking because of him?”

Thanks to the Valentine’s holiday, our school’s parking lot was much busier than usual for pick-up. The handicap spaces were taken, so I parked our swagger wagon with the other cars next to curb, making sure I left enough space to be able to load up the adaptive stroller, trilogy, walker, etc.
“Wow! It’s busy! Even the handicap spots are full today.” (Me, making awkward small talk.. as moms do.)
“That’s so cool that you GET handicap parking *because* of him.” (Other mom... probably also feeling awkward.)
While my brain registered the shock followed by passionate and witty responses that never made it to my mouth- I heard my voice explaining that it’s not for me. “It’s FOR [not because of] my son, who can’t walk far.. and sometimes can’t walk at all. It’s because he has so much equipment. He uses oxygen and needs a machine to breathe if he sleeps. It’s because his doctor thought it was help...” the explanations went on. I know I didn’t have to justify the parking situation, but I felt compelled to. For some reason I also felt compelled to add that we park far away when there’s enough space if we are using the stroller. Was I angry that this mom thought having a child with disabilities came with perks? Or maybe I felt guilty- because I don’t have a disability, and I’m the driver? I don’t know... but I do know that being able to park closer is *for* my child. It’s not a perk. I’ve never felt personally “lucky” using it, or lugging around a van full of equipment to go anywhere. I’d rather park in the back and have my children hold my hands as we skip on the concrete towards the far away store, but that’s not how we roll... and that’s okay. I’m grateful for my children and I love them more than anything. I’m lucky to have them and be their mother. *They* are perks. Parking isn’t. Having multiple therapies a week isn’t. Spending hours on the phone, emailing, scheduling, etc. isn’t. Hospital visits aren’t. Medications aren’t. Non-invasive ventilation is certainly not a perk. No sleep=not a perk. Equipment all over the house isn’t a perk either. Watching my child cry because his legs don’t work... you guessed it. Not a perk. We “get” a lot of extra stuff FOR our child... and most of it isn’t anything to be jealous of. 100% be jealous of my amazing beautiful children- I don’t blame you. I’m a lucky mom and blessed human being. But please- don’t assume I’m using my child’s disability to avoid walking 30 extra feet, or enjoying the parking perks. Thanks. #specialneedsmom #HandicappedParking #RareDisease #Hypotonia #PeriodicParalysis #AirwayDisorder #MobilityAids

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On the Edge #PeriodicParalysis #Hatethisfeeling

Had to call in to work today. Now I've got that feeling that I'm on the verge of having an episode, which makes me scared to do much of anything lest I push myself over the edge. I hate this feeling: the confusion and anxiety it brings, on top of the usual weakness and pain. Bleh.

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anyone out there deal with this? #Migraine #DopaResponsiveDystonia #DopamineResponsiveDystonia #Fibromyalgia #Seizures #PeriodicParalysis

I’ve been diagnosed with dopa responsive dystonia, fibro and complex migraine. last night I experienced leg twitching/restless legs followed by paralysis in both legs when I tried to get upstairs to take a sinemet, followed by a strong short seizure (I was fully conscious), followed today with a massive migraine, fatigue,like a severe postdrome. does anyone else go through events like this?