Whenever I “nap” it’s usually at least 2-3 hrs. I don’t know how some people can take a 1/2 hr nap and be good. Once I get in bed & actually fall asleep, I’m there for hours! 😹🙌🏼 How bout you?
#Fibromyalgia #ChronicFatigue #CPTSD #PostconcussionSyndrome
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12 comments
Needed a laugh today. 😸Well… every day actually. Feeling tired & unmotivated but hey, I took a bath so I accomplished something right?🙌🏼
#Fibromyalgia #ChronicFatigue #Anxiety #Migraine #IrritableBowelSyndromeIBS #PTSD #PostconcussionSyndrome #Depression
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15 comments
About two weeks ago, I wanted to do a post a day, to get back into the feel of writing and processing and just dealing with this lovely process of living with a chronic illness.
Then, I had a bad Friday, and I long weekend, fatigue hit hard and then an appt , then another appt….
Then, just CRASH…
All the best intentions, gone.
Now, I’m slowly coming up for air and it’s like …. Wow, it’s been almost 2 weeks.
It’s so easy to lose time, and then when you’re ready to start again … you feel disappointed…
Starting over…
And over
And over
Sooo
Here we go
Starting over
#Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression
#TraumaticBrainInjury #TBI
#PostconcussionSyndrome
#AnkylosingSpondylitis #ADHD
#ChronicPain #
#Endometriosis #PMDD
#COVID19 #ChronicFatigue
#DiabetesType2
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I'm thrilled! That's all!
I worked hard to navigate college and then graduate school with various disabilities, and somehow.... I did it! I am continuing to write a novel and now looking for a new job as I finish my mental health IOP !
#writer #Disability #ChronicIllness #MentalHealth #ComplexPosttraumaticStressDisorder #ObsessiveCompulsiveDisorder #Autism #ADHD #Dyscalculia #TicDisorders #EatingDisorders #PolycysticOvarySyndrome #GenderDysphoria #Migraine #PostconcussionSyndrome #BipolarDisorder #BorderlinePersonalityDisorder #GeneralizedAnxietyDisorder #NonverbalLearningDisability #Trauma #DependentPersonalityDisorder #Recovery
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I think I’m doing pretty good for the one post a day. I have almost made it a week. 😂✍️
This is progress.
I have a bunch of appts today, so I am preparing to be poked and prodded and make “nice conversation” 😂😂
It’s not the best day though, fatigue is high and I would really rather be in bed, because every moment will be a tiny mountain I have to climb.
Dealing with one chronic illness is frustrating enough, but when they start to combine on any given day, that’s when your body becomes your own personal torture chamber.
Today, it’s joint pain plus the PMDD and the spine pain… and with the PMDD there is the endometriosis… and there is always the foundation of it all , the Asthma…
You have to take it all in, balance it and then try to present yourself to the world as
“Normal”
Life , right..🤔😂
I look forward to the adventure of today. 🥰
##Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression #TraumaticBrainInjury #TBI
#PostconcussionSyndrome
#AnkylosingSpondylitis #ADHD #ChronicPain #Endometriosis #PMDD #COVID19 #ChronicFatigue #DiabetesType2
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“What do you do all day?”
I’m a little late but I’m holding strong with my post a day …
Fatigue is definitely hitting hard today… I’m still hoping to be a little productive…
An old friend asked me that question, and I answered her once, I told her it depends on the day.
But, then she was like but I’m just wondering how do you spend your days….
That question has been haunting me like the ghost of a life gone past…
Because as a severe asthmatic just coming out of two months of dealing with the side effects of having CoVid….
“Nothing”
is really , surviving… struggling to hold on to the little bit of breath and life that you have…
Laying in bed and distracting yourself from the pain and the struggle of breathing and pain…. Is fighting for your life….
“Be still”
is really being a warrior, holding on to all the Hope you have left and get your “One more day”
“Nothing”
… when so many things are broken inside of you that taking a full shower without struggling to breathe or stand up straight is cause for celebration..
But,
When you’re used to multitasking, and being in charged of a business or people and getting things done… When you’re use to creating things that did not exist before your mind said, “Let there be, and it was…”
“Nothing”
Does not feel like an acceptable answer…
It is a text message still left on “Read”, the tiny bubbles keep showing up and disappearing…
I’m still looking for the right answer to that question… ✍️✍️
#Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression #TraumaticBrainInjury #TBI #PostconcussionSyndrome #AnkylosingSpondylitis #ADHD #ChronicPain #Endometriosis #PMDD #COVID19 #ChronicFatigue #DiabetesType2
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4 comments
I had plans.
I had great intentions. I got started and just getting dressed was painful but I was going to push through… but the fatigue won.
Sometimes it’s hard not to be disappointed in yourself for not being able to complete simple things.
I mean overall pain is not simple, and heavy fatigue is not simple but when it’s chronic you think to yourself, you can get used to it and push through it.
It’s a control factor, you’re sure you have some control… It’s crazy sometimes to realize it’s not always a matter of will…. You can’t just “Will yourself through” sometimes your body wins …
Sooo
You try again tomorrow….
And that’s ok…
#Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression #TraumaticBrainInjury #PostconcussionSyndrome #AnkylosingSpondylitis #ADHD #ChronicPain #Endometriosis
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It was pitch black in my room at 4:45AM. I was wide awake reminiscing about my work schedule before being placed on medical leave. By 4:00AM, I would typically be outside walking and then cycling, for HOURS. So, this morning, after being on medical leave for nearly six months, as normal, my body was ready for action. But a new concept for me, self-compassion, interrupted my anxious mind.
As I sat on my bed deciding what to wear in the below freezing temperatures, I figured I will make myself walk some hills for early morning exercise. But a soft thought entered my mind: Why? Well, I pondered, because…? I…I really…don’t…know.
Typically, I motivate myself to do early morning outdoor exercise as a punishment for some THING. Let’s see, I must have sat still too long yesterday; even my watch tells me “it’s time to move!” I must have ate more than I should have, yesterday; but today’s a new day. I’m too fat due to this unexpectedly longgggg medical leave, which is actually allowing my brain to heal. Or some other reason that qualifies as some type of punishment against myself. Why! Oh, because I am convinced SOMETHING is wrong with me!
But this morning, I prayed. And I then thought, “What would you really like to do?” The self-compassion definition floated through my mind, and I thought, “Man, this cold cloudy almost snowy morning, I would LOVE to stay in bed.” And guess what???
I opened my eyes and the sky was bright. I slowly looked at my clock, it was 8:00AM on a Sunday. I was well rested. And before I knew it, with excitement, I was on my (now) stationary Specialized Sirrius bike cycling in my bedroom. I can no longer cycle the city streets due to the many concussions I have sustained from “bike-car” collisions. But as I cycled and listened, and watched, an Inspector Lynley episode, I realized I was exercising with JOY simply for the fun of exercising! Wow!!! It was then that I thought of sharing this experience with you, #TheMighty !!!
This site is helping me learn new skills. And exercising w/o punishment is DEFINITELY a new self-compassionate way of living for this #ComplexPosttraumaticStressDisorder #ADHD #TBI #PTSD #PostconcussionSyndrome #Anxiety , and #Guilt laden survivor!!!
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5 comments
Almost 6 months ago now, in addition to my other chronic health issues, I started having what I can only refer to as “night episodes”. I’ll wake up feeling weird, nauseous, shaky, weak and generally discombobulated. We had originally assumed it to be a hypoglycemia related thing. I took consistent readings of my blood sugar for a while and did a 10-day continuous glucose monitor and neither showed anything abnormal.
I’ve tried tracking my heart rate, my blood pressure, my temperature. I’m going to see a rheumatologist and a neurologist. But I’m struggling to even describe my symptoms.
Sometimes my limbs feel disconnected and floaty. Or they’ll feel unnaturally heavy.
Sometimes my head feels pressurized and floaty.
Sometimes I feel like my body is filled with bees. They’re not stinging, it’s not painful. But they are buzzing around. And I’d like them to stop.
Or it feels like my body has been hooked up to a very low voltage power source. Not enough to hurt, barely even enough to shock you if I touched you. But enough that I’m extra aware of so many nerves all at once.
The only thing I’ve found that helps is heat and food. I will grab a small snack and get under my heated blanket. Then I can usually get back to sleep. Once I get back to sleep, I’m usually okay.
I don’t get night episodes every night. But some weeks they’re more frequent than the nights I don’t. But they do seem to be connected to my circadian rhythm and anxiety as they’re more likely to occur on nights before I have to work the next day or when I stay up too late (past 10pm) and they have gotten a little less intense as I’ve been working on my anxiety coping skills.
Some nights have been especially bad though. One night I kept having a head-squeezing paired with the brain equivalent to the feeling in your nose before you sneeze. It would happen at random though the night. I was so scared I was about to have a seizure, which is odd, because I’ve never had one before. But I think it was so close to what I imagine the lead-up to a seizure feeling like. (For those that are aware of the lead up to their seizures anyway.) Then another night I woke up at 5am in a panic. I oriented myself, thought it was odd and tried going back to sleep. Every time from then on when I would get to the twilight phase of sleep, it would happen again. I’d get an electrical tightness across my chest and upper arms, and panic. Then rhythmically, even after I’d given up going back to sleep and got up, I’d feel like someone were taking each of my internal organs and squeezing them. It was discomforting to say the least.
At this point, I don’t have any answers. I don’t even have good medical terms to describe half of this. But I’m going to keep looking. The flame of hope flickers still. As a song from one of my favorite childhood movies says, “Hope is frail, but hard to kill”. Hope takes a beating. But she rises yet again.
I am determined. I will pray. I will search. I will be kind to myself. I will utilize my curiosity and be courageous. I will acknowledge my emotions. I will wander this road till I find my way home.
#Mystery #hashimotos #chronicinflammatoryresponsesyn drome #PostconcussionSyndrome #IBS
Any thoughts on this book?
Living the Invisible Disability: Coping with Post Concussion Syndrome Traumatic Brain Injury & Depression
Book by Hannah Andrusky
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