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A place where people who have Post-Concussion Syndrome (PCS) can find: community, conversation, encouragement, info, and resources related to PCS

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Hiii
➡️Welcome to those of you who are new here.
➡️Little recap about myself:
- 2014 - first concussion - recovered in 3 ish weeks
- Feb 26 2019 - second concussion - pcs started
- March 06 2019 - possible third concussion (second impact syndrome) * 5 yrs ago today
- Treatments I’ve tried: PT, OT, Chiro, Osteo, vestibular, vision therapy
- School/work: graduated college in 2020, worked in healthcare until 2022, graduate uni in ’25, hoping to complete a masters ’27
- I finally experience more good days than bad, but on my bad days when my symptom flare up they are just as bad as they were 5+ years ago during the peak of my injury
➡️March is brain injury awareness month:
Brain injuries are often referred to as an invisible injury. This is because our struggles typically present internally, which makes it difficult for those around us to know our condition exists. Though there are many reasons as to why the general public lacks awareness of pcs, I believe the invisible nature of this chronic condition is a major contributing factor. Since pcs is an invisible injury, awareness has to come from sharing about it. I’m here to do exactly that (even though it’s sometimes uncomfortable to) so that those with a brain injury can feel seen, understood, and represented, and those who don’t have a brain injury can learn more about how life changing this condition is. Awareness is a team effort. Therefore, it is my hope that a conversation can be started by you answering the questions below, and that this would lead to more awareness of this condition for those living with and without pcs.
➡️What is something you wish you knew sooner about pcs?
➡️What is something you wish the world around you knew about pcs?
➡️What is the biggest barrier you face living with pcs?
➡️What is most helpful to you as someone who lives with pcs? ➡️if you DON’T have pcs, what are your questions about it?! #pcs #braininjuryawareness #concussion #chronic #community #awareness #inthistogether #raiseawareness #support #recovery #treatment #secondimpactsyndrome #postconcussionlife #headinjury by @pcscommunity

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3 years ago

hiii! last sunday (feb 26th) marked the fifth year i’ve had pcs. i usually take the anniversary of my injury to reflect on the wild recovery journey i’ve been on thus far. but for some reason this time i don’t have much to say for the first time in my life hahahah. sooo i’ll make this short. the other day i was in +++ pain and asked my mum if this is something i’ll have for the rest of my life. not sure why i asked. maybe out of fear? but i already knew the answer deep down inside. a lot can be said about the pcs journey. it is life changing in every aspect imaginable. but today i told myself it’s just another day and to keep fighting. i thought these pictures summed up pcs life pretty well actually - you can try your best to smile your way through it, but your eyes will always reveal your true pain. its seriously a pain like no other and sometimes you just can’t completely hide it. sorry not sorry these pics aren’t cuuute, high symptoms -> no energy, i also stand for transparency. thankful to God for every high and every low, because He sustains me every step i go. #pcs #concussionhope #concussionawareness #brain #braininjuryawarenessmonth #anniversary #fiveyears #pain #chronic #chronicpainwarrior #god #trancparency #recovery #journey #encouragement by @pcscommunity

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3 years ago

God is good all the time & all the time God is good :) swipe for a good read

Even when my strength is lost
I’ll praise You
Even when I have no song
I’ll praise You
Even when it’s hard to find the words
Louder then I’ll sing Your praise

Take this mountain weight
Take these ocean tears
Hold me through the trial
Come like hope again

Even when the fight seems lost
I’ll praise You
Even when it hurts like hell
I’ll praise You
Even when it makes no sense to sing
Louder then I’ll sing Your praise

Even when the morning comes
I’ll praise You
Even when the fight is won
I’ll praise You
Even when my time on earth is done
Louder then I’ll sing Your praise
I will only sing Your praise by @pcscommunity

7

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3 years ago

reality check: fourth major pcs flare up of the year. some days are :) !!! & other days are :( ??? & that’s okay, God is always good. swipe for a good read by @pcscommunity

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3 years ago

➡️I saw this picture the other day after I worked out and instantly related to it…
➡️Unfortunately, most of my workouts end up this way.
➡️I feel like since i sustained my mtbi four + years ago, i have developed/experienced a poor relationship with exercise, in the sense that I need exercise to support aspects of my health such as my mental health, however I feel so limited by the parameters I have to follow so that I don't trigger my symptoms.

➡️My current exercising parameters:

➡️No running
➡️No jumping
➡️No dumping head
➡️Limited to no vestibular exercises
➡️Limited cardio - heart rate has to be closely monitored and has to maintain below 160-170 bpm so that my symptoms don't spike ➡️Take lots of breaks (a 30min workout takes me about 1hr)

➡️Since I sustained my brain injury four + years ago, I haven’t been able to return to the same kind of exercises/sports I used to be able to do when I was growing up, which is extremely frustrating. It took be about the first 2 to 3 yrs to grieve this part of my life. When I get frustrated I remind myself that four years ago I couldn't get off the couch or walk well, and that I should be grateful for the progress I have made.
➡️Over the last four + years I have learned how to adapt to a routine my brain can tolerate a bit better.
➡️If you can relate to this, remember to give yourself grace and be patient; sometimes it takes trial and error. It can also be helpful to work with a specialist. ➡️HOW DOES EXERCISING LOOK DIFFERENT IN YOUR LIFE SINCE YOUR INJURY?!⬅️ #pcs #postconcussionsyndrome #braininjury #braininjuryawareness #exercise #trialanderror #mtbi #concussiondiscussion by @pcscommunity

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3 years ago

➡️I’ve wanted to get a colouring book for a little while now. Over winter break I remembered to stop by the store and pick one up. ➡️Now that I’ve finished my first semester, I’ve had the chance to reflect on my studying habits and have started brain storming better ones. ➡️I noticed that when I took study brain breaks for my PCS that I would go from working on my lap top to taking a break on my phone, which isn’t really a break at all. ➡️So this semester I’ve decided to try colouring as a way of taking a brain break. I can use it either as a mindless break for my brain, or I can use it to work on my fine motor skills, eye tracking, and patience when it comes to irritability flare ups. Simple and effective. ➡️My academic threshold is just about three hours of working without a break. But I usually take a 15 min break every hour and a half or so to prevent flare ups. ➡️It’s been working well for me so far, and so I thought I would share it to encourage you all to find an activity that can help you take brain breaks when you need to. ➡️Other brain break activities I’ve been able to get back into are short and slow walks and indoor cycling.

➡️Comment below your go to brain break activities that work for you!⬅️ #braininjury #braininjuryawareness #concussion #concussionrecovery #brainbreak #postconcussionsyndrome #postconcussionlife #postconcussionlife #postconcussionrecovery #break #studying #studentlife #coloring #coloringbook #recovery by @pcscommunity

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4 years ago

➡️This is what I looked like after writing my three hour university math exam today➡️Exhausted. Poofy sore eyes. Head ache. +++ Nausea. +++Brain fog. Confusion. Unsteadiness. You name it, I had it➡️When my symptoms spike this high, I have to sit by the toilet, put ice on my head, and wear my ear plugs. And then all I can really do is sit there on my own, try my best to keep a positive mindset, and wait it out➡️Sometimes the pain is so intense that I end up sitting in a puddle of my own tears - however, rarely can I ever let myself cry because it builds up too much pressure in my head. I’ve had to teach myself not to cry➡️ I decided to take this picture to show the ugly reality of PCS and to see if anyone else can relate to it, to see if it could continue to help raise PCS awareness, and to hopefully be able to look back on it one day and see how far I’ve come➡️Despite feeling like absolute crap right now, I am so darn thankful. I am thankful that after nearly four years of having PCS I am able to manage my symptoms well enough to return to school. There was a time when I never thought that would be possible➡️I felt anxious going into my exam today because I didn’t know if my brain could handle a three hour exam. I remember pausing to smile after every hour that passed by because I was so grateful and surprised that my brain hadn’t quit on me yet➡️Today I learned that my new academic threshold is three hours - and that is such a gift to celebrate➡️This is a reminder to celebrate every win, even when you think they are small➡️Today I noticed how “well” I’ve trained myself to look “okay” on the outside and keep it all together with a smile, when in reality I’m falling apart on the inside. Sometimes it’s difficult to accept that on the outside we look okay to others, but when we come home our reality looks more so like this. If that’s you, I understand and can relate. Be kind to yourself, rest up, and keep going. I have two more final exams left this week, and I’m going to try my best to finish strong. #pcs #postconcussionlife #braininjury #headinjury #braininjuryawareness #school #studentlife #keepgoing #heachache #chronicpain #postconcussionsyndrome #reality by @pcscommunity

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4 years ago

Andddddd I’m back. I’m not surprised in the slightest. I’m very disappointed, and I’m learning that that’s okay. Honestly, it feels good to be honest and not have to force a smile. I feel like I’ve been holding it all in for far too long. But now I can breathe again. !!!SWIPE!!! for an update if you’d like. My apologies, I wrote a lot and it is not very easy to read… let me know if I should change that! #pcs #postconcussionlife #braininjury #recovery #concussionssuck #concussion #injury #community #chronicpain #postconcussionsyndrome by @pcscommunity

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4 years ago

Happy Friday everyone! How is your day so far?! • 🎉Today I want to encourage you to celebrate your SMALL WINS!!! Don’t over look them because they all add up🎉 • COMMENT BELOW some of the small wins you have had this week AND how you plan to celebrate them!!! • Here are some examples of wins: • Reduced number of spikes in symptoms • Having a restful sleep • Going for a light walk • Going to therapy / doing therapy homework • Implementing energy conservation techniques so that you have enough energy for cooking, showering, work... • Holding on and continuing to fight!!! • * This is not meant to be a competition or a comparison list, I just want to encourage you to look for the good and celebrate all your wins even when they are small!! * 🎉👏🏻 #smallwins #celebrate #postconcussionsyndrome #smallstepseveryday #braininjuryawareness #recovery #pcs by @pcscommunity

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5 years ago

• For most people, this meme is funny && relatable, heck I used to laugh at it too! • But for most of us living with PCS, some days this is our reality, and it starts to feel a lot less funny. • Others are able to laugh at the meme and continue on with their day; where as after one email I’m actually done for the day. • This is me today! Struggling just to send one email. Raging high symptoms, irritability, loss of concentration.... you name it, I have it. And I’m always so hard on myself about it. Makes me feel like a failure. • I guess what I’m trying to say is, if this is you today, tomorrow, or the next day... I understand and all I encourage you to do is give yourself grace and continue being patient with yourself. Your not alone in this. #concussionlife #postconcussionsyndrome #chronicpain #chronicfatigue #chronicsymptoms #braininjury by @pcscommunity

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5 years ago

• Recovery can be SLOW. • Recovery can be FRUSTRATING. • Recovery can feel NEVER ENDING. • Recovery can be one heck of a ROLLER COASTER RIDE. 🎢This is why it is important to take a step back from time to time and view our PROGRESS from a different perspective🎢 Recovery may feel like a never ending roller coaster ride, BUT over time all of our small strides add up :) keep going. I see your strength and courage and it’s amazing!!! 📸 @heyamberrae #postconcussionlife #postconcussionsyndrome #slowrecovery #rollercoaster #progress #everystepcounts #braininjury by @pcscommunity

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5 years ago

➡️REST⬅️ 📸 @stacieswift #rest #postconcussionsyndrome by @pcscommunity

14

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5 years ago