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Every Day, Lately

Yesterday, I shared how my mornings go. Today I will elaborate on why "Every Morning" is so very exhausting.

I've been in the mental hospital more times than I would like to admit. However before that, I went to college majoring in biology and neuroscience. I wanted to understand my chronic issues and "fix me".

Unfortunately, I did not find for what I was looking. Going through several different specialists, I found some diagnosis (treatment resistant depression, generalized anxiety disorder, a circadian rhythm disorder, sleep apnea mixed in with a bit of obsessive compulsive disorder and perfectionism).

I never found a medication or medication combination that revolutionized my life. I found many coping mechanisms that helped like medication, a proper diet, journaling, blue light therapy, talk therapy, yoga, dance, deep breathing techniques, transcranial magnetic stimulation therapy (TMS), acupuncture, Chinese herbs, teas and lately, homeopathy.

However, as I alluded to earlier life happens and you are left flat broke (literally), unable to pay for most of these services. For example, due to my mental health, I had to leave graduate school and move in with my parents. My business failed, and at this point no one will hire me. My ex-husband left because he couldn't support us (along with a mental breakdown of his own). So, I am left alone, depressed, anxious, unemployed, living with my parents, picking up the pieces fighting the strong urge to just give up. Did I mention I my mornings are actually afternoons? (More on that later.)

Yes, this is officially a "Cry Me a River" post. However, that's why I joined this platform. I officially have no one to really talk to or in my case 'vent'. However, I think that is why we are all here. Am I right? Let's get all of our problems out in the open and support each other?

Well, I definitely hope that is the case because most 'normal people' look at me, when they hear my story and say, "I am praying for you". They also say, "I am sending you good vibes".

That's all very nice and appreciated but I am sincerely looking for the support and strength to keep going. I want to keep finding the good things in life, the joy, the wonder, the excitement, anything that makes my life worth living. I don't want to give into the perpetual desire to clock out of the human race. (Not that there is any guarantee things will be better on the other side, just saying.)

As Angelica Hudson says to Drew Barrymore in "Ever After" (It's a really sweet movie by the way.) "No matter how bad things may get, they can always get worse."

It's up to me to make it better and that's a hard concept to swallow. It's just me against this crazy spinning rock. :/

#Support #Depression #Anxiety #ChronicIllness #Community #Support #venting #circadianrhythmdisorder #Journaling #TMS #Acupuncture #chineseherbs #homeopathy #financiallystruggling #unemployed #Divorce #Burnout #Loneliness #Hope #strength #NeverGiveUp #onwardandupward #togetherwecan

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Tired of MS: MS Fatigue and the Ways I Cope With It

They told me there might be fatigue. It was right there, on the laundry list of symptoms in brochures with titles like, “So Now You’ve Got MS”: “Your symptoms may include yaddy yaddy yaddy, blah blah, fatigue, boom shockalocka, fiddle dee diddle dee dum, etc.” So yes, they did warn me, but it should have been printed in red letters or something. Because no one can make you understand that MS fatigue is an entirely different animal than simply being tired. MS fatigue is a deep, down-in-your-bones tiredness, something that rest does not remedy. MS fatigue feels more like a deadening. It is collapsing at the end of the day, numb with exhaustion, and then waking up still feeling wiped out. It is having to rest after resting. In the case of MS and I’m sure other chronic diseases as well, those seven letters — f-a-t-i-g-u-e — are doing a lot of hefty lifting. MS fatigue should be spelled differently: It should be something like “fatiiiiiiiigue.” I’d like to buy a vowel, Pat, seven of ‘em.

These days I’ve got it more under control, usually. Since disease-modifying therapies haven’t helped me a lot, my MS experience has been about symptom control, and so it goes with MS fatigue. I have to be mindful of my energy level, and by now that’s become second nature to me. Also, over the years I’ve built up tools to fight fatigue and save my energy. Here I’ll throw them out to you, to maybe spark some ideas or questions for somebody out there. In the comments, please tell us: What works for you?

— Muscle tone/spasticity — Spasticity is your muscles firing and tiring because of the mismatch of signals between your brain and muscles due to an MS-frayed nervous system. The effects: tightness, stiffness, spasming, kicking, cramping, interrupted sleep patterns, fatiiiiiiiigue. Sound familiar? Baclofen tablets as needed have helped over the years. But eventually I needed industrial strength spaz-busting and moved on to a baclofen pump. This is a hockey puck-sized implant that feeds microdoses of baclofen into your system and works quickly and very effectively. Gone were a lot of (but not all) leg cramping and (not all) overnight kicking, plus it reduced some of the caregiver work for my wife. For at least one of my friends, the baclofen pump led to better sleep and serious pain relief, so if you are suffering from MS pain, look into it.

— New routines — This is the learning curve of having a chronic condition, and adjusting and adapting to a new normal. Pacing myself in everything I did. Still doing things, but doing them mindfully. Giving myself more time to get ready for work and everything else. Eating lighter, with more veg and less meat, which instantly stopped my post-meal sluggishness. Read up on the Overcoming Multiple Sclerosis program at overcomingms.org.

— More sleep — Yes, normalize taking naps as needed, without guilt. I had to learn this one. Actually, my body taught me the lesson.

Sleep apnea — Finally buckling down and getting used to CPAP. Before, my attitude was “CPAP my ***, I sleep just fine.” But afterward, I was still sleeping fine … but with no more naps. My need for those simply disappeared.

— Substances — Prescription amantadine didn’t do it for me. Coffee does. Ditto medical marijuana products, especially indica and Rick Simpson oil, but only before bed. During the day, I turn into the Couchlock Kid.

— Going on disability — This opens up a whole other can of worms, but I have to say that getting disability and not having to struggle in to work every day was a gigantic load off my shoulders. But it was an eerie adjustment too — I really had to work on staying engaged with writing and with keeping contact with others — but at least my bruised-up body could begin healing.

— Weather — My energy level and my fatigue are seasonal. In the early years of my MS, summer heat was a killer. As the summer heat relented, fall would bring a massive wave of energy almost like I was in remission, but only for a few weeks. This happened every year, you could count on it. But now, years later, any extremes of temperature, hot or cold, will set me back, kicking up my muscle tone especially. Now summer is less of a drag than winter. Go figure, but that’s multiple sclerosis. Keeping track of its ups and downs will absolutely fatigue you.

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What do you feel is the hardest part about living with achondroplasia?

Living with achondroplasia can be really challenging, and oftentimes looks different for everyone.

What do you feel is the hardest part about living with achondroplasia? What do you wish others better understood?

#Achondroplasia #RareDisease #Dwarfism #Caregiving #Parenting #ChronicPain #SleepApnea

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Multiple Mental and Physical issues. Now narrowing down myself due to a decade of NHS not helping.

Hi guys,
This is my first post using this app so I'm not sure on the amount of activity and don't have the capacity to write out an entire story if it won't be read

The main things I'm seeking to talk to others about is:
Craniosynostosis
Myoclonic jerks
Hypermobility
Ichthyosis
Sleep apnea
Fibromyalgia
Cervical spine curves
Unable to do anything physically demanding

Basically I know craniosynostosis can be linked to several genetic conditions and due to the sheer number of mental and physical disabilities or symptoms I have, I feel they must be related

I understand that I should not seek anyone to diagnose or try to verify my specific condition but maybe if I find someone who has a lot of similar struggles who has a genetic disorder, I can note it down as part of my plan to narrow down my health and then go back to Drs

I'm willing to write more in Comments

Thank you

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Share an important, informative, or memorable part of your achondroplasia journey.

Each of our health journeys are multifaceted, complex, and unique — but that doesn’t mean we’re alone in what we go through. Those shared experiences are what make us Mighty! 💪

If you feel comfortable, share a part of your achondroplasia journey that has stuck with you and made a lasting impact — no matter if it’s a positive or negative mark.

#RareDisease #Parenting #Caregiving #Achondroplasia #Dwarfism #ChronicPain #SleepApnea

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What’s My Name Again?

The brain fog struggle is real! There are also those annoying moments when you find yourself describing what car keys do, but can’t actually recall the word ‘keys’ in the moment 🤪

#DistractMe #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #ChronicFatigueSyndrome #AdrenalInsufficiency #Lupus #LymeDisease #PosturalOrthostaticTachycardiaSyndrome #MyCondition #Headache #Migraine #Insomnia #SleepApnea

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What’s a health goal you set but find it challenging to implement?

Making short-term — or even long-term — health goals can create a roadmap for you to follow when you’re looking to make decisions about your health. It’s not always easy, though, to implement every goal immediately — especially when you’re met with challenges or barriers. This can be anything from health limits and demands, limiting beliefs, finances, your living situation, or even circumstances that are out of your control. What’s a health goal you set but find it challenging to implement?

#RareDisease #Parenting #Caregiving #Achondroplasia #Dwarfism #SleepApnea #ChronicPain

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What’s your experience with dream journals or sleep diaries?

Mighties, I’m contemplating whether it would be beneficial for me (or not) to keep some record of my sleep — whether I specifically keep track of my dreams or about my sleep habits in general 🤔… TBD.

Has anyone have experience keeping a dream journal or sleep diary? If so, did you find it helpful?

#Insomnia #ChronicPain
#ChronicIllness #SleepApnea
#Depression #BipolarDepression
#Anxiety #MentalHealth #Disability #MultipleSclerosis #CheckInWithMe

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