DAY 8 - NETFLIX / HBO RECOMMENDATIONS I’m so not up with current tv shows and movies so my recommendations will probably all be old ones so sorry in advance everyone 😂😂. For @netflix I’m loving: Archer (funny AF), Brooklyn Nine Nine (@thelonelyisland need I say more??), Gilmore Girls: A Year In the Life (nostalgia hits hard on this one), You (terrifying), and alllllll the @ilizas specials. For @HBO of course I have to recommend Game of Thrones, Big Little Lies, Euphoria, and Ballers. I definitely need more recommendations so hit me with your best ones 👇👇👇👇 Anything (tv shows, specials, movies), give me all your best suggestions. Binge well my fellow couch bound spoonies!! #Netflix #hbo #bingeworthy #bingeworthytv #couchpotato #spoonie #spooniecommunity #spoonielife #spooniesisterhood #spooniewarrior #invisibleillness #chronicallyill #chronicillness #chronicillnesschallenge #chronicillnessdiaries #ChronicIllnessWarrior #chronicpain #chronicpainwarrior #hydrocephalus #hydrocephalusawareness #hydrocephalusblogger #hydrocephalusdiaries #hydrocephaluswarrior #hydrowarrior #nervedamagewarrior #nervepainwarrior #LifeLessonsLaughSessions
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Blogger with hydrocephalus helping inspire happy healthy fun living. 20 some brain surgeries down. Life sucks way less when you're laughing. She/her
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DAY 9 - PERSONAL MENTAL SURVIVAL TIPS This one is very important to me because I find that when you have a chronic illness people are so focused on your physical symptoms that we forget that we have to take care of our mental health as well. There is so much we can do to take care of ourselves mentally; the problem is remembering to do these things. I have a set routine that I stick to in order to keep myself as mentally strong as possible. I start my day with a gratitude practice to make sure my mind is focused on gratitude rather than negativity. I also make sure I move my body every day, whether it’s a weight workout, a quick yoga flow, or anything in between, what matters is that my body is just moving. I always find movement to be such a useful tool; it gives me energy, helps with pain relief, helps me think through problems, and so much more. Meditation is also a big part of my practice. I’m not good at the long meditations but even a quick little one can be a big help for getting centred, clearing my mind, and just helping me to breathe. Most importantly, I take time with those I love. I get so rejuvenated when I spend time with people I love (and dogs). When you can be with your loved ones you can get so filled with love and raise your vibration (which is always great). What’s in your mental health survival toolkit?? #chronicallyill #chronicillnesschallenge #chronicillness #chronicillnessdiaries #ChronicIllnessWarrior #chronicpain #chronicpainwarrior #hydrocephalus #hydrocephalusawareness #hydrocephalusblogger #hydrocephaluswarrior #hydrocephalusdiaries #hydrowarrior #nervedamagewarrior #nervepainwarrior #invisibleillness #spoonie #spooniecommunity #spoonielife #spooniesisterhood #spooniewarrior #selfcare #mentalhealth #raiseyourvibration #pug #pugs #pugstagram #pugsofinstagram #LifeLessonsLaughSessions
DAY 10 - PERSONAL PHYSICAL SURVIVAL TIPS (SYMPTOM MANAGEMENT) This is a very individual process but I’ve definitely found a few things that help with my physical symptoms, even if it’s just to give relief for a short time. 1. My migraine ice cap hat - I’ve only had this a week and I’m already obsessed with it. I got this magical thing thanks to the recommendation of the lovely @mindfulmigraine and I’m so grateful to her for it. This had has a bunch of ice gel packs in it so you get a great cooling sensation to help dull the pain. 2. Peppermint essential oil - When I’m on the go I love just putting a few drops of peppermint oil on my forehead and the back of my neck for a little relief. 3. Yoga - Doing slow yoga flows is a great way of releasing tension from my body and getting some good stretching in, especially on the days when my pain is really bad and I try to move as little as possible. 4. Good food - Eating healthy, plant based food is always a good idea. I try to do this as much as possible because I can clearly notice differences in how my body feels when I eat healthy versus when I eat more processed foods. Physical health is very individual but learning what your body needs is incredibly important. Taking care of yourself is important whether or not you have a chronic illness. Taking care of your body allows you to do the things you want and live in your purpose. What do you do to take care of your body, on your good days, and your bad days?? #chronicallyill #chronicillness #chronicillnesschallenge #chronicillnessdiaries #ChronicIllnessWarrior #chronicpain #chronicpainwarrior #invisibleillness #hydrocephalus #hydrocephalusawareness #hydrocephalusblogger #hydrocephalusdiaries #hydrocephaluswarrior #hydrowarrior #invisibleillness #spoonie #spoonielife #spooniecommunity #spooniesisterhood #spooniewarrior #nervedamagewarrior #nervepainwarrior #LifeLessonsLaughSessions
DAY 11 - FAVOURITE MEDICAL AIDS I’ve always been a fan of ice packs. I use ice packs all the time, but thanks to the lovely lifesaver @mindfulmigraine I’ve upleveled my ice pack game with this amazing ice pack hat. I now use this so often it’s already paid for itself. I don’t know the exact mechanism for how ice helps treat pain, all I know is that it works so I’m going with it. If you’re in need of an ice pack or suffer migraines, check out @mindfulmigraine and her amazon store to get one. I also absolutely love my essential oils. I don’t use them as treatment per se but I still find them incredibly helpful for my health. I use the peppermint and eucalyptus oils on my head and the back of my neck when my pain is horrendous and use peppermint oil on a diffuser bracelet to smell when I’m nauseous. I also use orange oil to diffuse when I’m feeling particularly exhausted and need a pick me up. I’m also a big fan of salonpas lidocaine cream. I know lidocaine is a numbing agent and I find it helpful when my pain is situated in my forehead area. I just use the roll-on on the affected area to get a little relief. I’m super happy it’s a roll-on because having to rub a cream on with your hands it never seems to wash off (or is that just me??). What works for one person may not work for the next. None of what I said is medical advice or something you need to try. I simply want to offer ideas that if you think may work for you, to look into further. We all go through struggles and hardships and I just want to do my part to help anyone I can. What’s your favourite medical helper?? #chronicillnesschallenge #chronicallyill #chronicillness #chronicillnessdiaries #ChronicIllnessWarrior #chronicpain #chronicpainwarrior #hydrocephalus #hydrocephalusawareness #hydrocephalusblogger #hydrocephalusdiaries #hydrocephaluswarrior #hydrowarrior #nervedamagewarrior #nervepainwarrior #spoonie #spooniecommunity #spoonielife #spooniewarrior #invisibleillness #medicaltoolkit #LifeLessonsLaughSessions
DAY 12 - HOW ARE YOU FEELING TODAY?? This is such a loaded question, for everyone really. We all have so much stuff going on and it’s such a multi-layered question but here goes. Today I am feeling both severe pain and incredible gratitude. I’ve struggled with the duality of this for years (and I still am). I feel physical pain which exhausts me, worries me, causes me sadness, and tests my patience like nothing I’ve ever experienced before. But at that exact same time I feel such immense gratitude it almost brings me to tears. I am so grateful I am here. I am so grateful to be alive; to feel the sun on my face, to breathe in the fresh air, to have the people I love with me. Yes I feel this pain but I GET to feel this pain. I’m alive to feel this pain. I’m fortunate enough to have access to medical care. I have the best support system of the most angel souls I could ever ask for. I have a home where I can rest and heal. I have access to technology that allows me the ability to research my illness and for possible help for it as well as to help distract me during those bad pain episodes. I’ve also made friends with such kind souls that I otherwise wouldn’t have had the occasion to meet. This illness has also taught me more lessons than I can count and each day I’m grateful for those lessons. I’m re-reading ‘The Universe Has Your Back’ by the amazing @gabbybernstein and one thing she said really resonated with me; it is our decision to see with love rather than fear that can create the meaningful shifts in our lives. This is a lesson I”m still trying to learn and I think it’s a lifelong process. That’s why although I have pain 24/7 I’m choosing to see it with love and ask what it’s here to teach me rather than with fear and wonder if it will ever end. Life is a gift and it’s my job to remember that. How are you doing today??
DAY 13 - HOSPITAL EXPERIENCES Let me get this out of the way right away NOBODY LIKES HOSPITALS!!!!!! I get told all the time when I’m in the hospital from supposed ‘friends’ “oh I totally would have come see you but I just really hate hospitals”; or any excuse under the sun to avoid coming to visit me. Nobody wants to be in the hospital. Nobody goes to the hospital thinking it’s a fun adventure. Hospitals suck. They’re lonely, the colours are boring, it smells funny, everyone is sick and grumpy, and everyone hates being there. I’ve been in the hospital more days than I care to count and from that I’ve learned a ton of vital information if you ever have to stay in the hospital but it all boils down to one thing: BE YOUR OWN ADVOCATE and know that you’re allowed to question things. I’ve been lucky enough to have my mom with me for my hospital stays and honestly, I don’t even want to know what would have happened if my mom hadn’t noticed the errors that would have occurred while I was sleeping or if I wouldn’t have been aware of what is incorrect and spoken up. Yes mistakes happen, but the stakes are a lot higher when you’re dealing with someone’s health. Don’t think you’re being annoying if you have questions about something, it’s your body and you’re allowed to feel safe about your care. Thankfully for myself I’ve only had a few hospital scares and more often than not I’ve dealt with incredibly kind, compassionate, and understanding nurses that I am still friends with to this day. I have the greatest respect for medical professionals and the work this profession entails. I also think it’s so important for you to be your own advocate, because it’s YOUR BODY. If you have questions, ask them. If you are concerned about something, speak up. If you are scared, say so. If you need a minute to process something you’ve been told, ask for it. YOU ARE NOT A NUISANCE, YOU ARE A PATIENT and you’re allowed to feel safe about your medical care.
Chronic Illness Challenge Day 14: illness related thing you’d like to own There’s a few things on this list but I’ll stick to my top two. 1. An infrared sauna - I keep hearing about these and seeing more and more people in the wellness space having them so of course I have to do my research. With all these co-infections I have going on I have to do everything I can to flush my body of the toxins I have building up and an infrared sauna is a great way to do that. Of course I’m no expert and have no idea about the intricate explanation but it’s still something I’ve done a lot of looking into and would love to have. 2. ALL things @foursigmatic - I love tea and coffee, so finding out about a brand that sells awesome healthy, and delicious coffee and hot chocolate I was so ready to get some. I learned about @foursigmatic from the fabulous @thebalancedblonde and it’s been on my health grocery list ever since. Honestly though, with my brain fog I keep forgetting to pick some up so maybe this will be my reminder that sticks 😂😂. What’s one thing you want in your wellness toolkit that you haven’t gotten yet?? #chronicillness #ChronicIllnessWarrior #spoonie #spoonielife #spooniecommunity #chronicillnesstoolkit #hydrocephalus #invisibleillness #hydrocephalusawareness #hydrocephaluswarrior #hydrowarrior #nervepainwarrior #nervedamagewarrior #LifeLessonsLaughSessions
DAY 15 - WHAT DO YOU WISH PEOPLE KNEW ABOUT YOUR ILLNESS?? There’s so many things I wish people knew about hydrocephalus, mostly because most of the people I know have never even heard of it (which is great because that means it hasn’t affected them). The one thing I wish people knew about my illness is that, even though I have good days and bad days, I still have the same personality and wants as I did before my illness decided to get worse. With my illness I’ve gone through a bunch of cycles of better to poorer symptoms and despite all that, I’m still me. I’m still the girl that wants to go out dancing until 2am. I’m still the girl that wants to get in the car and go on a spontaneous adventure. I’m still the girl that wants to travel the world. Despite not being able to do some things now, that doesn’t mean who I am has changed. Illness does take over my body but it doesn’t change me. I’ve found that there’s a lot of assumption around people with illnesses. If you’ve had to cancel plans because of your illness once, far too often people take that as a sign to never ask you to do anything again; and that’s just not the case. With my illness, my body may be changing, but my soul is still the same. My mind is still the same. I’ve changed because I’ve had to and because I’ve learned so much; but what I enjoy and love doing hasn’t changed. I wish people knew that even though I may not be able to do things like before, I still love the inclusion of hanging out with my friends. It might have to look different for the time being but it means just as much if not more. Feeling like you still matter, still have value and worth, and still have people who care about you seems obvious but it can get forgotten and truthfully, illness can be incredibly lonely. So thank all of you for being here. Thank you for your support, your kindness, and your love; it means the world. #chronicillness #chronicallyill #hydrocephalus #hydrocephalusawareness #hydrocephalusblogger #hydrowarrior #nervepainwarrior #nervedamagewarrior #invisibleillness #spoonie #spooniesisterhood #spooniecommunity #spoonielife #migraine #migraineawareness #chronicmigraine #LifeLessonsLaughSessions
MY NAME IS ALEX AND I HAVE SEVERE ANXIETY Truthfully I never thought I’d say this. I never thought I had anxiety. Yes I had bad things happen and have lots of stress in my life (who doesn’t?), but I honestly didn’t think I had anxiety. I’d go through a stressful event (like a surgery), and just move on, never thinking I had anxiety I wasn’t even consciously noticing. But the truth is, anxiety has been a sidekick of mine for several years, and now that I know it’s here, I know how to better deal with it. My anxiety doesn’t manifest how I’d been taught about anxiety. Mine manifests in lip biting, nail picking, and other nervous ‘ticks’ I had no idea where actually my anxiety manifesting itself. Before I knew this was anxiety I would just notice it and honestly just continue out of automatic habit. Now however, I notice the behaviour and ask it what it’s trying to tell me. Our anxiety is clear if we actually listen but I never did. I just acted without asking why. I won’t lie, I was completely shocked about this revelation but it now makes so much sense. Anxiety isn’t an anomaly and having it doesn’t make you any less strong. Denying my anxiety is certainly easier in the short term but it’s not the best for anyone in the long term. For my folks with anxiety, I see you, I am with you, and I now understand you more than ever before. You are not in this alone and you are strong. Any go to anxiety reducing tips, leave them below 👇👇👇 #anxiety #anxietyrelief #mentalhealth #selfcare #takecareofyourself #anxietyattack #panicattack #hydrocephalus #hydrocephalusawareness #hydrocephaluswarrior #blogger #hydrowarrior #nervepainwarrior #nervedamagewarrior #invisibleillness #spoonie #spoonielife #spooniecommunity #LifeLessonsLaughSessions
DAY 16 - 5 THINGS YOU’RE GRATEFUL FOR 1. That I woke up this morning - We all lead such busy lives that we often forget to be grateful for the things we take for granted. Each moment I take a breath is a gift. Each morning I wake up is a gift. 2. That I have such an incredible support system of the best family and friends anyone could ask for. Life isn’t meant to be lived in solitude and I can honestly say I would be completely lost without the amazing people in my life. Your support has saved me countless times and I will never be able to adequately say how grateful I am. 3. For social media - I know, I know, but it’s not for a cliché reason I promise. I am grateful for social media for the way it has allowed me to connect with people all over the world, including people I’ve met through this platform. The connection social media has offered me is incredible. I’ve learned so much, and made invaluable connections that have taught me more than I thought I could ever learn. 4. For mentors - You can find people to learn from if you simply search. I’ve found incredible mentors through the podcasts I listen to. Mentors don’t have to be in an official capacity. You can learn from so many people, you just have to consciously look for people you could learn from and take action. 5. For nature - Whenever I’m feeling in a slump, I get out in nature. There’s something about breathing fresh air, looking at the trees and clouds, noticing the true beauty of nature, it always leaves me speechless. Seeing nature reminds me of how connected we all are to not only one another but the whole world around us. And I am so glad to be a part of it. What are you grateful for?? Let me know below 👇👇👇 #chronicillness #chronicallyill #gratitude #grateful #thankful #hydrocephalus #hydrocephalusawareness #hydrocephalusblogger #hydrocephalusdiaries #hydrocephaluswarrior #hydrowarrior #invisibleillness #nervedamagewarrior #nervepainwarrior #spoonie #spooniecommunity #spoonielife #spooniesisterhood #spooniewarrior #LifeLessonsLaughSessions
DAY 17 - SMALL VICTORIES FOR YOU TODAY With my illness being as severe as it has been lately, my barometer for success has been shrunken down to a lot smaller criteria. Whereas before I’d look at a whole day and determine if it was a ‘successful’ one based on what I accomplished, now I look at individual aspects and moments within my day and ensure those as single moments of either success or moments of growth and learning. Today is not only a holiday but it has already been a day of successes and for that I’m grateful. I woke up with my pain pretty bad but after a meditation and session of EFT (@nickortner changed my life with this so if you haven’t heard about it, check it out), I was able to focus on things besides the pain which is always a big hurdle for me in my actual pain management. Where our focus goes our energy flows and when I decide to focus on things besides the pain the pain has less power to affect me. I was able to do some jade rolling for that oh so important skin care (and it’s also super soothing with how cold it is which also helps the pain so double check marks here ✅✅). I’ve also been able to get some writing done and I’m almost done something that’s super duper exciting to me but I don’t want to give anything away until it comes out so stay tuned. Life doesn’t have to be measured in giant mountains of successes or failures. The smallest of steps in the right direction are still helping you get to where you want to go. So learn from your hurdles rather than beating yourself up for them, and celebrate your victories no matter how small. What do your victories look like today?? Share some good energy and let me know what they are 👇👇👇 #chronicillness #chronicillnesschallenge #chronicallyill #hydrocephalus #hydrocephalusawareness #hydrocephaluswarrior #hydrowarrior #hydrocephalusblogger #hydrocephalusyoutuber #invisibleillness #nervepainwarrior #nervedamagewarrior #neuropathy #spoonie #spooniecommunity #spooniesisterhood #SmallVictories #celebrateyourself #LifeLessonsLaughSessions
NEW VIDEO IS LIIIIIVE!!!! Now if you’re like me you have a gratitude practice; but I’ve noticed that something has been missing from it. I’ve been forgetting gratitude for an essential part of my life. I’ve forgotten to thank my body. I’ve forgotten to be thankful for this incredible vessel that allows me to live this life. Just think of how different your life would be if you couldn’t move when you wanted, or say what you wanted? Our bodies allow us to live out our dreams. So why wouldn’t we be grateful for them? Feel free to check out my latest video, the link is in my bio. And subscribe, and share it with someone you think will find it helpful. #youtube #Youtuber #wellnessyoutuber #hydrocephalus #hydrocephalusawareness #hydrowarrior #nervepainwarrior #nervedamagewarrior #invisibleillness #spoonie #spoonielife #spooniecommunity #spooniesisterhood #LifeLessonsLaughSessions
DAY 19 - WHAT DO YOU DO TO PASS THE TIME There’s a few things I do to pass the time but to be honest it varies depending on how bad a flare day it is. As you can see I’m a bit (ok a lot) of a bookworm. I love reading, I always have. And on the days that my pain is bad but not too horrible I try to read to pass the time simply because learning things is always a good idea. I like quite a variety of types of books so I’m never stuck for a book to read. I just love the escape reading offers. I can learn so many new things and travel to different worlds without even moving and that’s of great use when you’re stuck in a pain flare not up for doing anything. I’m also a bit of a podcast junkie. There’s a podcast for pretty much every subject nowadays so the odds of you finding a podcast that you’ll enjoy are pretty high. I have a few favourites and they pretty much run the gamut. I love ‘Earn Your Happy’ with @LoriHarder ‘For the Love of Money’ by @ChrisWHarder ‘Super Soul Conversations’ with @OprahWinfrey ‘The Gary Vee Audio Experience’ with @garyvee ‘With Love, Danielle’ with @DanielleLaporte and ‘The Basement Yard’ with @joesantagato and @dannylopriore if you need a laugh (but don’t listen to that last one at work without headphones ok, take it from me 😂😂😂). Podcasts are great because you can honestly listen to them whenever and wherever you are; whether that be stuck in bed during a flare or at one of a zillion doctor’s appointments. Let’s be real though, the real MVP on flare days is definitely @Netflix On my really bad flare days I can’t do any concentrating so it’s nice to have Netflix on to just have a distraction; and if it’s something funny even better. When you have a flare or bad symptom day you need to do what’s best for you; however that looks. Taking care of yourself is so incredibly important and it’s even more so on the days when you feel like you can hardly do anything at all. Even the smallest things that you find work for you matter.
Totally forgot this day and it’s the best one. DAY 18: FAVOURITE ILLNESS MEMES Some of these are sooooo accurate. And some are so funny I’m mad I didn’t think of them. Illness is annoying AF sometimes so why not get a laugh when I can. Thank you to these amazing people for sharing these hilarious memes, I appreciate you. #chronicillnessmemes #chronicillness #chronicallyill #chronicpain #invisibleillness #awareness #hydrocephalus #hydrocephalusawareness #hydrowarrior #nervepainwarrior #nervedamagewarrior #chronicmigraines #migrainelife #migraine #migraineawareness #symptoms #rareillness #chronicillnesshumour #LaughTilYouCry #funnyaf #LifeLessonsLaughSessions
DAY 20: HAS YOUR ILLNESS AFFECTED YOUR RELATIONSHIPS? Oh don’t mind me that’s just me looking for a guy to be in a relationship who understands the craziness that comes with being in a relationship with someone with a chronic illness. Now let me be 100% clear, this is NOT judgment. I know how difficult it is to care for someone with a chronic illness, I see all my loved ones do to help me and it’s exhausting so I know it’s not for everyone. And thankfully, I have the most unbelievably supportive friends a girl could ask for. No idea what I’d do without these amazing angel humans who keep me sane, help me laugh when I want to cry, and hold my hand when I do cry. No idea what I’d do without them. I will admit that my circle has gotten a lot smaller since becoming sicker but that’s fine. I know that it’s not in everyone’s journey in this lifetime to encounter loved ones who are sick and for that I am so thankful for them. Not knowing how to handle when someone you care about is sick and walking away is something I’ve seen a ton in these past few years and at first I took it personally. Now however I realize it’s because they don’t know how to be there for someone with an illness and that means that the people in their lives who they can’t simply walk away from have been well enough that they haven’t had to be in this position and I am incredibly thankful for them that that is the case. This illness has definitely affected my relationships but I truly believe it’s been for the better. The friends that have stuck around and the ones I’ve made because of this illness are the kindest, most supportive souls I’ve ever met in my life. I’ve become more attentive and aware of others hardships because of this illness and I’d like to think that makes me a better friend. This rollercoaster has not been short of moments of learning and that includes in my relationships. So everyone who has remained a friend with me through this hard time, thank you. From the bottom of my heart I cannot express how grateful I am for you. Tag your spoonie support system to thank them below.
DAY 21: WHAT DID YOU DO TODAY FOR SELF CARE?? For myself, self care looks different day to day; especially depending on the pain. Today it looks like a few different things. It looked like getting out of bed slowly, listing everything I’m grateful for. Recognizing my pain, accepting that I need to rest and not beating myself up for it. It looks like having a healthy breakfast and caring for my body. It looks like a super slow and short yoga flow. And it looks like a killer pump up playlist to listen to while stuck resting on the couch. No self care is ‘wrong’. You do what you need to do in order to care for yourself. Your self care won’t necessarily look like someone else’s and that’s ok. Do what you need to do to take care of yourself. Sometimes, on a lot of times, it’s messy and uncomfortable, sometimes downright awful, but it’s essential. You take care of others so give yourself the same respect with your own self care. What are you doing for self care today?? Let me know 👇👇👇
DAY 22: YOUR WORST EXPERIENCE WITH YOUR ILLNESS?? There’s been a few scary moments but the worst one was definitely in 2014 when I got diagnosed with bacterial meningitis. I had a routine shunt surgery but a few days after I returned home something was wrong. I tried to get up and simply couldn’t move. At this point I’d had several surgeries so I knew this wasn’t normal. I couldn’t even get in the car to ride to the hospital so we took an ambulance. I remember nothing after that for about 3 days. During that time I had 4 surgeries to take out the new shunt and put in a drain to act as a shunt to drain the fluid into a bag outside my body. Your white count for your blood should be rather low, but at that time mine was in thousands. The meningitis was so severe it left me in that comatose state while I had all those surgeries and honestly I’m glad. I don’t want to remember being that sick and scaring my mom that badly. That’s the closest I’ve ever done to dying and to say it didn’t change me would be a lie. It made me realize how fragile life is and that is just so important to appreciate the small things. Yes this period of my life was terrifying but the fact that I got through it reminds me that we are here for a reason and should never doubt whether or not we have a purpose in this life. #chronicillness #chronicallyill #chronicillnessdiaries #invisibleillness #hydrocephalus #hydrocephalusawareness #hydrowarrior #hydrocephaluswarrior #nervepainwarrior #nervedamagewarrior #spoonie #spoonielife #spooniesupport #spooniesisterhood #LifeLessonsLaughSessions
DAY 23: BEST MEMORIES WITH YOUR ILLNESS?? This one really wasn’t hard to choose. It was after one of my earlier surgeries that the magical best friend fo mine @vanessa.forchilli came to visit me in the hospital. It was honestly exactly what I needed. No medical talk, just friends hanging out, talking, and laughing. So much laughing. I laughed so hard it felt like my stapes were going to come out and I really didn’t even feel bad about it. This journey has been a crazy adventure but having the support of incredible humans and the best friends and family a girl could ask for, it’s a little less scary and a lot less lonely. I’ll never forget that visit, or the more recent one when @vanessa.forchilli and @the_brasher brought those red velvet cupcakes that were the most magical treats I’ve ever had in my life (that I still miss 😂😝). Thank the people in your life for what they do for you, no gesture is too small to make the biggest difference. Tag them to thank them below. #chronicillness #chronicallyill #chronicpain #hydrocephalus #hydrocephalusawareness #hydrowarrior #nervepainwarrior #nervedamagewarrior #spoonie #spoonielife #spooniesisterhood #invisibleillness #LifeLessonsLaughSessions
DAY 24: DIETS/FOODS THAT MAKE YOU FEEL BETTER This has been a really fun part of my illness journey. I’m learning all about these absolutely amazing restaurants, companies, and foods that I just have to share them. I’ve become really food sensitive and have had to try countless diet regimens and plans and I’m lucky enough to have found a few that have not only helped but are freaking delicious. First off, gotta shout out the incredible @purekitchenottawa because oh my god. This restaurant has the most amazing vegetarian and vegan food I’ve ever had in my life. Whether you’re vegan or not you need to check this place out; their spicy cauliflower wraps and kale Caesar salad are straight out of my culinary dreams. Gotta talk about the unfreakingbelievably delicious recipes from @rachlmansfield I found out about her amazing recipes from @thebalancedblonde and I’ve love every single one I’ve made. Her chocolate chip cookies are drool worthy but honestly like I said every one of her recipes are amaaaazing. I’m also really careful with what I drink nowadays and I try to not have empty calories or nutrient weak drinks which is why I’m so freaking glad @risekombucha @foursigmatic and @bulletproof exist. I’ve loved Rose Kombucha for a while now and I still can’t get enough. It’s not only delicious but the energy it gives me doesn’t give that awful crash that comes with coffee. Four sigmatic is a newer thing for me but I loooove it. The adaptogens in their coffees and hot chocolates are superfoods which is what I need, but despite it sounding odd (mushroom coffee what is that??), it’s freaking delicious. Now bulletproof coffee is amazing but the @bulletproof brand is so much more than coffee. The collagen bars are to die for, the brain octane oil is a life saver, and the cold brew packaged coffee is seriously brought down from coffee heaven. I not only want my food and drink to be healthy for my body, I want it to taste good because life’s too short to have foods and drinks that taste like crap. What’s your favourite food and drink?? Let me know in the comments to give me more ideas.
DAY 25: WHAT’S THE WORST THING SOMEONE HAS SAID TO YOU ABOUT YOUR ILLNESS?? There’s been plenty of hurtful things, both accidental and on purpose, people have said to me about my illness but there’s one that’s stayed in my mind ever since the first time I heard it. ‘IT CAN’T BE THAT BAD’. The problem with an invisible illness is that people don’t know you’re sick, even if you tell them, because you look fine. The only times I’ve ever really looked sick have been while I was in the hospital, or at home after surgeries because I had a giant bandage on my head. The truth is, I am always sick. It does indeed get that bad. I’ve learned to become an actress when I have to be. Putting on that smile so people don’t feel obligated to ask ‘how are you?’. I make the conscious decision to not talk about my illness with people unless I’m explicitly asked about it because I know how exhausting it is. I know how much it can drag down your vibration and put a damper on your joy. Despite how bad it can get I’m working on not allowing it to control me. The negative and hurtful comments I get about this illness aren’t meant with malice or hurtful intent; they’re said out of a lack of knowledge. Not only do I want people with chronic illnesses to know they’re not on this journey alone, but for those who are healthy to know we exist. Yes my illness is invisible to you; but it is real. Yes my illness can make things difficult, but it’s giving me a way to learn things I’ve never learned before. So to anyone who has doubted my illness; has not believed me when I’ve told them I’m in incredible pain; who has told me ‘you look fine’; I feel joy for you. So much joy that you don’t experience this pain. So much gratitude that no one you love is taking on this battle. And I wish you will never know what this monster looks and feels like, and how it can take over your life. Please don’t focus on the hurtful things people have told you; they aren’t meant to shape you. Instead believe the love. Believe the kindness. Believe the joy. That is the truth, now and always. You are strong, filled with love, and meant for amazing things. <3
I LOVE YOU, AND I HATE YOU Good and evil. Light and dark. Day and night. Duality is all around us and can be a beautiful thing. However, when that duality involves your body, it’s a completely different story. I’m going through a rollercoaster of emotions, more than ever before; and truthfully I’m not sure rollercoaster is the right word. Rollercoaster implies that there are ups and downs at different points, rather than multiple emotions simultaneously. The truth is, I hate my body. I hate how it’s failed me. I hate how it’s weak. I hate how it doesn’t work properly. I hate that it gives me horrible pain that never goes away. I hate that it lets down the people I love. I hate that I let down the people I love. I hate that nothing I do fixes the problem. I hate that it’s delayed my plans. I hate that it’s made me doubt my purpose. I hate that it’s made me question whether or not I should even be here. But at the exact same time, I am overwhelmed with love and gratitude. I am thankful for every surgery my body has survived. Thankful for every infection it has taught off. Every hard step it’s gotten me through. Every goodbye to a loved one it’s allowed me to survive. Every horrible night it’s allowed me to wake from the next morning. Every breathe I’ve been allowed to take. Every heartbeat I’ve felt in my chest. For every hug I’ve been able to give someone I love, even if it was for the last time. Every smile I’ve been allowed to see. Every laugh I’ve been able to share. Every time I’ve been lucky enough to hear ‘I love you’. Every tear I’ve cried and been able to wipe away. I feel so conflicted with these feelings occurring simultaneously. How can I feel such deep pain and anger and at the exact same time such gratitude that it brings me to tears?? But isn’t that the point of being human?? Aren’t we supposed to feel the whole spectrum of our emotions. Don’t judge yourself if you’re angry with yourself, you’re human, and you’re doing your best.
DAY 26: YOUR FAVOURITE HEALTHCARE PROFESSIONAL?? Like anyone, I’ve had amazing doctors, and I’ve had horrible ones. Having a doctor that listens to you, cares about you rather than just your symptoms, and believes you may seem simple enough but they can actually be really hard to find. Luckily for myself, I have the most amazing neurosurgeon I honestly think exists. Dr. Howard Lesiuk is head of neurosurgery at the Civic Hospital and he’s been more than my surgeon, he’s my angel. Dr. Lesiuk is the smartest man I’ve ever met but has never talked down to me. He has always answered every question I’ve had with patience and detail until I was comfortable. He has never rushed through an appointment and never made me feel like an inconvenience. (And yes I know these sound like obvious things that doctors should be but after having so many doctors I’ve learned this is far from the norm). Not only has he always been kind to me, but he has been for my family and friends. My mom has asked him more questions than I ever thought possible and he has always given her the same attention as he has myself. And his kindness goes beyond the office. He has called me at home on numerous occasions after surgeries and appointments to check in to make sure I’m feeling ok. He has stopped by after surgery at 11:00 at night to see how I was doing after a particularly scary pre-surgery event. A good surgeon has the skills. A great surgeon is amazing at what they do but also cares about you as a person, and not just a problem to fix. Dr. Lesiuk is not just someone who’s helped me with dozens of surgeries, he has saved my life; and calling him anything less than my hero is inaccurate. I will forever be grateful to this man and no amount of words will adequately explain how much. To all my spoonie friends, I wish for you a doctor that care about you, all of you. A doctor that wants to treat your illness and treat you with the kindness and respect you need and deserve.
DAY 27: WHAT ARE YOU WORRIED ABOUT MOST ABOUT YOUR ILLNESS AT THE MOMENT?? Truthfully there’s always things I worry about when it comes to my illness but I try to not think about them as much as I can. If I focus on them too much they overwhelm me and if I let them overwhelm me they would be all I’d think about and I wouldn’t have a life. One of the things I worry most about is getting another infection. After almost dying from bacterial meningitis in 2014 I’ve been way more cautious anytime I’ve noticed anything ‘off’ with my body. Any time my scars look different or my shunt feels different or something feels ‘off’, my mind automatically goes to ‘worst case scenario’ mode. I hate it, but that’s how it is. I’m getting better at talking myself down from it but after almost dying, it takes a lot of practice. A huge part of turning off this ‘worst case scenario’ thinking has been focusing on the good and drowning myself in positivity. By focusing on high vibration things and doing as much as I can that brings me joy allows me to not let my mind be controlled by negativity and letting me be in charge of what I bring into my life. Living in fear is no way to live. Yes these things could happen but dwelling on that possibility will do nothing for me except bring fear and pain and that’s not how I want to live my life. How do you quiet the fear gremlins?? Let me know below 👇👇 #chronicillness #chronicallyill #chronicillnessawareness #invisibleillness #invisibleillnessawareness #hydrocephalus #hydrocephalusawareness #hydrocephalusblogger #hydrocephalusdiaries #hydrocephaluswarrior #hydrowarrior #nervepainwarrior #nervedamagewarrior #spoonie #spooniecommunity #spoonielife #migraine #migraineawareness #migrainelife #LifeLessonsLaughSessions
This book does not mess around. I’ve believed in manifestation and being in alignment for a while now but I didn’t know HOW to do it. I’d have instances of fluke manifesting or sporadic moments of alignment but nothing lasting. This book has changed that. And one of the most important lessons is the importance of SURRENDER. Too often we try to force things to happen or make ourselves become in alignment, and that’s not something the Universe responds to. Acknowledging what my ego wanted was a huge piece of this. But knowing that what my ego wants and what’s the best good for all was a game changer. Rather than seeing things as needing to be checked off my life list I look for ways things can be fun or the best for the world and the people around me rather than just me alone. Surrendering my need for things to be a certain way has brought even better things along, things that weren’t even on my radar. Yes crappy things still happen, that’s life, but this book has taught me how to better react to those events. Rather than see these as punishments I see them as opportunities to learn, even if it starts out as just learning how to rebound quicker from a crying session (we all do those and you know it 😝). This book came into my life just when I needed it and I will forever be grateful for that; and to @gabbybernstein for listening to the Universe when this incredible message came to her and for sharing it with all of us. What’s your favourite Gabby book? Leave it below 👇👇
This month is a particularly important one for me. Cancer has affected almost everyone I know, and far too many have been affected by breast cancer. To those who fought and lost their battle, you are warriors who will forever be loved and missed. To those who have fought and won, you are the strongest, most brave people I have ever known. To those still fighting this battle, never doubt your strength, you are heroes, and warriors, and you are not fighting this battle alone. If you are struggling, reach out. Hug the ones you love a little tighter. #breastcancerawareness #BreastCancerAwarenessMonth #breastcancer #cancersucks #fuckcancer #LifeLessonsLaughSessions
BE YOUR OWN ADVOCATE My latest @youtube video is all about this because it’s been on my mind so much lately. Feel free to check it out, the link is in my bio. How many times have you not spoken up out of fear of upsetting someone or seeming pushy?? This has happened to me several times on this medical journey. But there’s a huge problem with that. The person that knows your body best is YOU, not some doctor that only knows a small portion of you. I’ve been on a six month journey of trying to convince doctors that something was wrong and only last week did I receive validation from a doctor that I was indeed correct. The only problem is that when it started six months ago it was a simple fix, now it’s a much more complicated and complex issue. The point is, never give up. Don’t stop advocating for yourself simply because someone tells you everything is ‘fine’. You know yourself and your body best. If you feel that something is wrong, listen. You may have to go through several doctors, but keep going. Eventually you will either wear someone down enough to listen to you or you’ll find a doctor who believes you. Either way, just don’t give up. This journey isn’t easy. It’s discouraging, scary, and it can make you feel like you’re going crazy when doctors won’t believe you. But don’t give up simply because you’re hearing ‘no’. Those people aren’t living in your body and don’t know you as well as you do. Trust your gut, and don’t give up. #hydrocephalus #hydrocephalusawareness #hydrowarrior #invisibleillness #invisibleillnessdiaries #chronicillness #ChronicIllnessWarrior #chronicillnessdiaries #spoonie #spoonielife #spooniesisterhood #spooniecommunity #LifeLessonsLaughSessions
YOU’RE NOT BEING TESTED, YOU’RE BEING TAUGHT This is my affirmation this past few days and it’s been saving me. When life comes at you it usually comes all at once and wow I’m getting beat to a pulp lately. I’m dealing with some scary medical unknowns and some new challenges that came out of nowhere and I won’t deny it, I’ve had a few meltdowns these past two days. Yes bad things happen. Yes the tears flow. Yes I wonder why everything happens all at once. But I’m constantly reminding myself that this is not a punishment. I haven’t done anything to deserve this. These events don’t reflect on who I am as a human being. These ‘adventures’ are moments for growth. These moments are opportunities for learning and realizing how strong and resilient my soul is. Life isn’t meant to be easy. Life isn’t meant to be a straight line. We are meant to learn and grow and better ourselves. This journey is meant to be filled with variety and moments of incredible highs and incredible lows; we just have to remember that the moments that are the hardest aren’t meant to punish us. Those are the moments that help us find our soul’s purpose.
MY OCTOBER WORD OF THE MONTH: REFOCUS This month my main focus came rather quickly and very clearly to me. I needed a shift. A shift in priorities. I need to get laser focused on what really matters to me. I need to decide what really matters and work hard on those things. Priorities are allowed to shift and change. Life can cause us to shift our focus and sometimes priorities we never really thought mattered become incredibly important to us. This month is about making those hard choices. About saying no to anything that detracts from my main priorities. To accept that saying these ‘nos’ doesn’t make me a bad person. That I sometimes need to put priorities first that are uncomfortable but so necessary. So ask yourself, what do you want to focus on this month?? Tell me your main priorities for October below 👇👇👇 And this latest blog is available to read through the link in my bio.
MY OCTOBER INTENTIONS Surprise surprise, I had set these intentions then life decided to happen. I had surgery on Friday so these intentions will have to be tweaked a little bit but nonetheless I feel just as strongly about them. This month I want to focus on three main things: 1. Make meditation a priority - This is even more important with my surgery. Meditation is such a powerful tool for our mental well being but it is just as helpful with our physical well-being. I will be using meditation to help my body heal not only from the surgery but from the complications I’m dealing with because of them. I have never used meditation as a tool for recovering from surgery but I’m excited to see how it helps me this time around. 2. Move my body every day - again this is going to have to change because of my surgery. I had wanted to up my weight training practice but that’s going to have to take a back seat until I recover. For now I will be focusing on my yoga practice and on walking because both of these things are easy on my body but do the trick for getting my body moving to give me that oh so appreciated creative inspiration. 3. Do more of what lights me up - This doesn’t have to be fancy time consuming things. What matters most is that I take the time to do them. Whether it’s watching a funny movie while I’m recovering, or reading a good book, as long as doing what lights me up is a priority rather than something that just gets pushed aside and done if and when I have the time. Feel free to check out my full blog post through the link in my bio. And let me know below what your intentions are for October 🎃👻🍂🍁🎃👻🍂🍁
WHERE DOES THE TIME GO?!?!?!? I’m 27 now and honestly I remember being 16 like it was yesterday. I don’t know how time goes so fast but I do know I’m grateful for having gotten this far. Life has been full of crappy moments but they’ve been far outweighed by wonderful times. With the years I’ve learned a ton of lessons, some incredibly important, some simple, some funny, but all lessons I consider useful nonetheless. Yes I’m a year older, but I’m not sure wiser is the right term. It’s more like I’m just on a rollercoaster holding on for dear life and guessing when I need to hold on tight and when it’s fine to put my arms in the air. Feel free to read my full blog post (the link is in my bio). What’s the most important lesson you’ve ever learned?? #learnsomethingnew #learneveryday #lifejourney #livewithintention #liveyourbestlife #loa #lawofattraction #spiritjunkie #hydrocephalus #hydrocephalusawareness #hydrowarrior #invisibleillness #invisibleillnessawareness #spoonie #spoonielife #spooniecommunity #spooniesisterhood #LifeLessonsLaughSessions
GIVE YOURSELF CREDIT Yes I used a filter for this photo and you know what? That’s ok. I took this picture post-op day 2 when I was feeling like a pile of crap and needed the pick me up. Seeing the picture got me thinking, do we give ourselves credit enough?? I don’t think we do. Life can be difficult. Things can come at us and challenge us in ways we never knew. And we continue to survive them. We carry on. We overcome. We survive. But do we ever thank ourselves for this? If you’re having a hard day and you managed to get out of bed, give yourself credit for that. You are doing your best with what you’re dealt and that’s all you can ask of yourself. Loving ourselves is hard work but it’s some of the most important work we have to do. Don’t love yourself in spite of what you have to go through. Love yourself because you carry on through them. Love yourself because you try. Being human is hard. It can be discouraging and exhausting. Just remember you’re here for a reason and the world is better with you in it.
⚠️TRIGGER WARNING⚠️ It’s #worldsmentalhealthday so we’re going to talk about it. We all go through struggles. We all have bad days. But we aren’t alone in this. If you are going through a hard time, even for a moment, reach out. Talk to someone. Look for help. Your struggle is valid. Your pain is valid. Your well-being matters. You don’t need to suffer in silence, nor should you. If you need to find a reason to stick around, find it. If you need to stay here because the recycling goes out tomorrow, or your pet needs to be fed, or a new episode of a show you like comes out next week; it is valid. Whatever reason you need to hold on to in order to stay here, use it. The world is a better place with you in it and you deserve to live your life. Like I said, if you are struggling, reach out. There are people who will listen. And please, never forget, you are not alone.
Coming out is terrifying. It shows you if people love you for who you truly are. But I’m here to tell you that you deserve to be your true self. Love who you love. Life is too short to hide who you are and live a falsehood. Live your life and be you, you’re the only one who can. If you need a safe place to reach out to come out, I am here. I will listen with absolutely no judgment. I am here for you and you are not alone. ・・・ #Repost @wellaeducation with @get_repost ・・・ #comingoutday #comingout @lgbtq #nationalcomingoutday #trueself #selflove #loveyourself #beyourself #justbeyou #justbeyourself #donthideyourpride #liveyourbestlife #LifeLessonsLaughSessions
HAPPY THANKSGIVING There isn’t enough time for me to explain all I’m grateful for. I’m so thankful for this life, the family I was fortunate enough to be born into, the friends I’ve made all around the world, the places I’ve explored, and so much more. This life has so much to offer us if we simply look out for it. Wishing all my Canadian family and friends a wonderful Thanksgiving. #HappyThanksgiving #happythanksgiving2019 #thankful #canadianthanksgiving #grateful #livewithintention #liveyourbestlife #hydrocephalus #hydrocephalusawareness #hydrowarrior #invisibleillness #invisibleillnessdiaries #invisibleillnessawareness #spoonie #spoonielife #spooniecommunity #spooniesisterhood #LifeLessonsLaughSessions
SHE’S GONE AND I DON’T KNOW IF I’LL EVER GET HER BACK I never imagined I’d wake up one day and my previously healthy body would just be gone. I never imagined I’d wake up in a pain that would never go away. But this is my new normal. Health is so fragile and we forget its importance until it’s gone. I have had worsening health for about five years now and it’s been quite an adventure. I’ve dealt with a rollercoaster of emotions, and truthfully, it’s still a day to day struggle coping with this. I go from moments of deep pride for how strong my body is to moments of incredible doubt and shame over the simple things my body can no longer do. I’ve learned that this rollercoaster of emotions is completely normal through an incredible network of amazing souls I’ve met that I never would have without this illness. I’ve met incredibly wise souls who are going through struggles incredibly similar to mine and without their kindness and advice I would be completely lost. Yes this journey has been difficult but it has been made infinitely better because I haven’t been on it alone. Whatever journey you walk i life, you don’t walk it alone. If you need help, ask for it. You are meant for great things and you deserve them. If you want to read my full blog post feel free to check out the link in my bio. Tag your spoonie support system below. #wordpressblog #hydrocephalusblogger #hydrocephalus #hydrocephalusawareness #hydrowarrior #hydrocephalusdiaries #invisibleillness #invisibleillnessawareness #spoonie #spoonieblog #spooniecommunity #spoonielife #spooniesisterhood #spooniewarrior #LifeLessonsLaughSessions
I’M PROUD OF MYSELF AND I’M ALLOWED TO SAY IT. I had a medical procedure today and I was very scared of it. I had never had this procedure and no matter what I read about it I still had no idea what to expect. Now if you know me you know I’m not the type to ask for help. I’m the type to just suck it up and carry on. But my soul wouldn’t shut up. It kept saying “your fear is here to teach you”. And so I decided to veer from my norm and voiced my fears. I spoke with my doctor and got the help I needed to get through the procedure. Was the procedure still stressful? Yes. Was it still uncomfortable? Yes. Was it less of both these things because I had the help to cope through it? Without a doubt. Asking for help doesn’t make you weak. Asking for help is essential. You aren’t meant to live in fear or worry. If you’re going through something and need help, ask for it. You are human. You are on an incredible journey. One that is sometimes challenging, stressful, and frightening. And it makes you no less brave needing some help every now and then. How has asking for help helped you? Share your memories below 👇👇👇
DAY 28: WHAT ARE YOUR FUTURE HOPES / GOALS?? Oh this is hard to write concisely because I just have so many goals, hopes, and dreams. I want to get healthy. I will never stop working to heal my body and find a cure for the problems my body has. I want to one day work fully for myself and with that be able to support myself and my loved ones. I want to do so much exploring. I want to explore the world; the places we all know about and the little known yet equally magical places. I want to continue on my spiritual journey, however that looks. I want to get to know my soul and what it truly needs, and give myself as much of that as possible. Yes I want nice material things but most of all I want the things money can’t buy. I want health for myself and those I love. I want joy in my soul and around me. I want to feel fulfilled every day. I want safety for myself and my loved ones. I want love that fills my soul. The more my health has declined the more I’ve come to realize that what matters most to me aren’t things I can buy but things I can feel in my heart and soul. So tell me, what’s one of your giant goals??
CHRONIC ILLNESS CHALLENGE DAY 29: What are you most proud of in yourself?? I’m most proud of something that sounds relatively simple but once I got increasingly ill I realized how difficult it can truly be. I’m most proud that I refuse to give up. I refuse to resign myself to a life of always being ill. I refuse to accept I will always be in pain and have lost control of my life. I refuse to give up on my way back to health. This journey is long. It has tested me in more ways than I can count, and more ways than I even knew were possible. But I refuse to see those tests as signs to give up. They aren’t here to make me want to quit, they’re here to teach me. Yes they’re exhausting and stressful more often than they’re simple easy lessons, but that’s just part of life. I was given this body, this life, and all that comes with it because it’s what I need. I’m here to accomplish huge things and leave the world better than when I got here, however that looks. Giving up is a lot easier. Simply resigning myself to the pain I have and not trying to heal or move through it is in theory easier, but it’s not the point. We’re meant to learn, to grow,. To be our most amazing selves. And never forgetting that or giving up is what I’m most proud of. This is an every day, every moment process, and it’s my duty to keep going and never ever give up. Tell me, what are you most proud of yourself for?? Be unapologetic about it, you’re allowed.
I’ve always loved to write. Whether it was essays, blog posts, and more recently poetry, I love all of it. I even had a professor in university try, in vain, to get me to switch my major to English. But the truth is, I couldn’t imagine making that my degree. I didn’t want my writing to become academic. I didn’t want to tie recognition and grading to something that brought me joy. My writing isn’t about grading and making sure it’s perfect. My writing is my stress relief. It is my sanctuary. It is my light. My writing is my soul communicating with the world through me and that’s how I want it to stay. All those years ago I had started my blog with a completely self-centred idea in mind; I just wanted to have somewhere to write down my thoughts and ongoings, I didn’t even consider the possibility of anyone else actually reading it. But more and more I’m finding that when you have gifts, you have the duty to share them. I try to write things that I am not only living and experiencing but things I wish I had been able to find that would have been helpful. There is always someone who can find help with what you have to share because no matter how much we’d like to think so, our journeys aren’t all that unique. We all have struggles and pain to live through but we all experience similar pain. Now with my writing I look at it as more of a tool I can use to help others know they aren’t in their struggles alone and we’re really all in this together. Feel free to check out my blog (link in my bio) and leave a comment for what post made an impact for you.