orthostaticintolerance

I have been through trauma after trauma, ran away to follow my dreams and did! However, soon after I had injured myself and then diagnosis/chronic illnesses mounted - I never got better. Though my condition is genetic and I've always been sick. I have survived more than most can handle- any given year of my life- people assume that I'm the strongest and most resilient person because I have harnessed the power of mindfulness and silver linings. When misery is standard, any excuse to escape the reality is welcome. This doesnt mean I'm all better now, It means I'm o.k at the moment, I'm managing, I'm finding something to live for in that instance. AANNNNDDD then someone comes and makes me into a hero uses my pain as an inspiration story on how things could be so much worse for Them. I hate "I don't know how you do it?" Like I had a choice in my genetic makeup, like my struggles are speed bumps when to anyone else they are mountains, landslides and monsoons. Like "wow you are so brave and strong" for existing---!%@^#%@& gee thanks. And then when I crash from holding myself together (literally I have EDS) "they" are gone. I'm too dramatic or "I need to get it together" Uhhh No, that's not how strength works! That's not how one becomes a fortress in the eyes about them, it's the same hard work anyone does on themselves, its then humble cry for help because my walls are crumbling. Yes I'll be trying, but strength is not measured by the number of tears that Dont fall. Strength is admitting its it's ok to crumble, its it's ok if you just need to survive the next day or hour or minute. Rather I feel the strongest when bolstered by those that validate my feelings and my experiences as any other. I am just as human as any, don't make responsible for inspiring you when all I need is a hug from someone with compassion. #ChronicPain #EhlersDanlosSyndrome #HypermobilitySyndrome #orthostaticintolerance #DegenerativeDiscDisease #Osteoarthritis #Incontinence #ChronicFatigue #CPTSD #GastroesophagealRefluxDisease #dislocations #Anxiety #OccipitalNeuralgia #Dysautonomia #Dystonia #MTD #TemporomandibularJointDisorders

As you may know, I was just diagnosed with #MyalgicEncephalomyelitis and #Fibromyalgia (among other things) with chronic fatigue (read: exhaustion) being my most severe symptom.

As I deal with paperwork, try to start all the medications and suppliments, and work on figuring out how in the world I’m going to manage this, I have take one step that I’m really pleased with. I got a Fitbit.

Okay, I admit it, I’m cheap- I talked a friend into giving me their old Fitbit, but the point remains!

I’ve been getting data on my movement (not exactly “steps”, as I spend so little time walking that half of the “steps” counted happen while I’m lounging in bed or on the couch). But it is still data on how much I move. I’ve been gathering data for a week.

Here’s what I’ve learned:
- I take less than 500 (actual) steps each day. Closer to 400.
- I average (about) 700 “step” movements a day.
- I move significantly less when I have a migraine and more when I’m anxious.

How does this help?
- I have a baseline. I can objectively see if I am getting better with all the treatment things I try.
- I can help myself avoid “boom and bust” I told my Fitbit that my fitness goal was 650 steps. That will warn me if I am moving a lot more than on an average day so I can be mindful and slow down (and not be as sick the next day).
- I can step it up on down days and try to hit 600 steps even on bad days.
- I have data. When people ask “how tired are you?” I can give them numbers.
- I can also track my heartrate, which helps with other issues.

It’s not perfect, but it’s something.

What steps do you take on your chronic illness journey?

#ChronicIllness #Disability #spoonielifehack #exhaustion #Fitbit #orthostaticintolerance #Anxiety #MentalHealth #SocialAnxiety