Not sure who said this but I loved it. "When a flashlight grows dim or quits working, do you just throw it away? Of course not. You change the batteries. When a person messes up or finds themselves in a dark place, do you cast them aside? Of course not! You help them change their batteries.
Some need AA...attention and affection; some need AAA...attention, affection, and acceptance; some need C....compassion; some need D...direction. And if they still don’t seem to shine...simply sit with them quietly and share your light."
Share with someone who needs to hear this.
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
Since I moved up to the Inogen One G3 I no longer need my homefill system but I do need the space it takes up. This thing is large enough to be added to my lease. I have been looking for months for a responsible way to move this piece of equipment on without luck. The company that gave it to me has changed names three times and denies any knowledge of me or the equipment (while trying to sign me up for additional equipment to abandon no doubt). I'm out of ideas. Have any of you ever been in this situation? What did you do? I want to do the right thing. But I'm tempted to set it outside the door of the oxygen company that supplied then denied it.🤬
#LivingWithPOTS #EhlersDanlosSyndrome #Disability #heart aneurysm #Migraine #ChronicLungDisease #JointHypermobilitySyndrome #Arthritis #AxonalNeuronalNeuropathies #SmallFiberNeuropathy #chronic bronchitis pneumonia #ChronicFatigue #TemporomandibularJointDisorders #Fibromyalgia #Myositis #Insomnia #ThyroidNodules #diaphram disorder #VocalCordDysfunction #MajorDepressiveDisorder #EatingDisorders #toomuchtoremember
After years of dealing with a daughter’s mental illness / drug use , was diagnosed with a chronic lung disease and smoldering multiple myeloma. These diagnoses threw me into MDD with PTSD. Have been on numerous antidepressants , and last summer tried TMS which helped minimally. So terrified of covid which is making me so much more depressed. Who can relate ? I appreciate any support that is offered. I feel like bad things keep happening, despite all my effort.
I am reposting a friend's and fellow the Mighty's thought who needs help to find a doctor or medical professional (better if pulmonologist, TB specialist or an ID doctor) who may cater online consultations or can be consulted.
The health care system in their place is really in a bad shape now (and some medical professionals are not empathetic and caring enough) and TB has become more rampant. Some medications don't work well enough too and she's not getting better after year/s of treatment.
If anyone can help or even suggest people please comment down and we'll really appreciate it. Thank you for the help!