When in Vegas...
is the place to be. Always hooking it up with the best deals and this weekend get 20% for any EDC attendees! Yup, just hooked myself up with a 100mg THC/CBD chocolate bar for that energetic and euphoric high that keeps the party going all night long! Plus this nice tasting joint from BaM #sauce
It totally is but why does it have to be damn hard?! 🍵 Just existing right now is physically painful and the past month has been total hell... almost feels like when I first got sick, which is terrifying me😿I think that my chelated vitamin C flush 🍊🍊🍊(it’s actually powder form) could be to blame... either disrupting my mineral balance or stirring up metals or something else entirely. Another day playing the guessing game and acting as my own doc👩🏼⚕️🤦🏼♀️Has anyone else tried this flush? It’s supposed to stimulate the adrenals and thyroid and remove latent viruses, according to my holistic doc and acupuncturist. I’m stopping tomorrow 🚫🚫🚫 to evaluate how I feel without it. (PS being sick has made me obsessed with teas hehe) #mecfs #myalgicencephalomyelitis #chronicfatigue #chronicillness #butyoudontlooksick #spoonie #invisibleillness #goheels
Morning of a crash.
Waking is harder than usual. You keep rubbing your eyes to break away the sleep but they are open, barely, as the puffy lids limit full visibility. And while my head feels thick and heavier than its allocated 5 kilos; my limbs are numb. Like they're stuck in cement that's set overnight. There is no appetite only thirst to quench the heat regulatuion malfunctions that went haywire overnight - freezing to fiery. Restlessness to no movement. I'm frozen in time but outside I hear children rushing off to school. Neighbours heading off to work. The postman buzzing, someone yelling and women catching up for lunch. My cat is scratching to be let in and I'm dreading how I will get myself up and walk the short distance to feed her and get a drink.
Some crashes I manage to move from my bed to the couch. But severe crashes confine me to my bedroom. I'm going to use this time to reflect and set intentions, and most importantly put things into perspective. This past week I've used energy I did not have. I have no reserves. This rest is crucial for recovering. And I'm so grateful for being able to see my family and friends. I'll be going 'back to basics' the best I can. Eating more fresh fruit and veg. Prioritising daily meditation, soaking up the sunshine when it breaks free from the clouds, getting to bed before 10pm and drinking turmeric milk everyday as my pain increases in the cooler months (a connection I've just made.) In these times, it really is a series of small things that are the most beneficial + compassionate patience, because there is no instant cure/remedy.
~ 'Do just one thing today that will lighten your day tomorrow.' 🌸
Yesterday was #WorldBeeDay
🐝 These tiny creatures are pollinators, along with bats, butterflies, birds, etc., and have a positive impact on keeping the environment healthy 🌸 It is vital that we maintain their habitat and support beekeepers to ensure pollinators thrive 💞 Check out my favourite beekeeping account, belonging to incredible Beth (@akeela.and.the.bees
) - cats and bees, what an epic combination 😍 Beth's account is informative and fascinating, and full of sweet macro photography 🌹
I often wish I was an artistic introvert instead of an athletic extrovert. I feel the deepest loss with my physical restrictions. //
I took a Qi Gong class (traditional Chinese movement class focused on energy) that was described as “non-athletic” and “gentle” and “good for those with physical limitations.” //
As a former athlete, I am drawn to the hot yoga, power yoga, etc. but .... I’m trying to be gentle with my body.... so, Qi Gong it was.
It was a disaster. 15 min I was exhausted (and all you really do is move your arms around). I had to take a break and was sitting down by 45min. I was in full savansa (laying down) at the 1 hr mark with tears rolling down my face for the final 30min. //
For me, this is where acceptance and hope rub the hardest. I’ve tried SO many times to find movement that works for me (backpacking became masters waterpolo became bike commuting became gentle hiking became... nothing). And every time I downshift, I feel a loss. Every time I try something even more gentle, I feel failure and grief. //
Ive always held out hope that I would improve - I don’t want to accept where I am, I feel like I can claw my way back to my former physical prowess (especially now that I’m out of bed a lot more)... but when I’m in classes that are supposedly the “easiest we offer” and I can’t make 15mins, I am reminded that my body is still fighting for health and physical strength is not its priority. //
I know I should be grateful for how far I’ve come and how able I am... especially compared to some of my nearest and dearest here. 💚But when you give a mouse a cookie....
So, here I am in Bali, crying at a yoga studio, feeling deep grief, and reminding myself that I can’t escape myself ... physical limitations are physical limitations in Bali or the US. #gettingtoacceptance #spooniegrief #disabilitytravel #physicallimitations #lyme #babesia #mold #cfs #pwme #mecfs #lymecankillmyworkoutvibe #healingslowly #butyoudontlooksick #invisibleillness
My husband nicknamed me Scrappy when he first met me. ⚠️ And right now, I’m bringing Scrappy out. 👇🏼
In my time on social media I’ve been followed, unfollowed & followed again by some of the same people.
Normally I laugh off this kind of nonsense because it’s usually businesses or bloggers doing this stuff but lately it’s #spoonie
accounts which makes me sad because we should genuinely be supporting each other in our battle w/ #chronicillness
not using each other to gain a “following”. So I’m just gonna say this... 1️⃣If we’re not paying attention to the lives we’re choosing to follow we’re not following for the right reasons (I’m not talking about entertainment accounts here)
2️⃣Interaction goes a long way. You want followers? Take a genuine interest in the lives of the accounts you follow. Following, never interacting & then unfollowing because you didn’t gain a follower screams “narcissist”. 3️⃣My posts haven’t gotten any “better” since the last time these people unfollowed my account. You can expect the same old stuff. Sarcasm, honesty, talk about illness & Oh My! even talk about Jesus😱
4️⃣But I’m gonna assume from their past actions with me that they’re only fishing for followers & forgot they’d already fished here & I didn’t bite so I’ll close with this...
🚫I’m not a notch in a virtual belt.
In fact, no one is.
If we can’t see the person behind that follow button anymore, might I suggest we get off of this thing until our vision corrects.
In fact, if we want to be seen, see others first.
Interact with them.
Build them up.
You may not end up with thousands of “followers” but people won’t remember you as “that account” & you’ll persevere your humanity in the process which is far more important for the survival of civilization.
Just some tough love advice “to whom it may concern”. Don’t worry, I tell myself these things too.
And I’ll definitely get off this thing before I start viewing people as a means to any selfish end of mine. ✌🏼❤️ & #Honesty
“Everything is so throwbackish... I kinda like it like it” (if you don’t know what song that is, you’re missing out on life) 💃🏽 #classic
High pain day=Relaxing Sunday night🕯💜. Here’s to a wonderful week!
Have you checked out the link in my bio yet as lupus awareness month continues? @Omeliacandlestudio
created an amazing ‘In the Loop’ candle with proceeds going to the Lupus Foundation of America! Handmade Lavender & Peony scented soy candles with cotton wicks 😍. Help raise awareness & make your house smell awesome! 💜
Traveling, of any kind. is something I really haven’t been able to do at all over the years due to chronic illness. (My story is on my blog if you’re interested). For me, being able to go and experience new places and feel GOOD while doing so is a huge deal and something I will never take for granted. Years ago I would have laughed if someone told me the things I’d be capable of now. That also goes to say, don’t ever get caught up in the highlight reel of social media because you just never know what’s going on behind the scenes. I never thought I’d be able to do what I’ve done this past week and my heart is just so full of gratitude. As crazy as it may sound, my gratitude includes being grateful for my illness, because it gave me photography which has brought me to where I am today. God works in mysterious ways y’all. It may not make sense a lot of the time but He’s weaving together a beautiful story for you. Trust that He’s putting all the pieces together in perfect timing, never lose hope. P.S. I LOVED the mountains, but I don’t think I could ever live somewhere without a beach I could get to in a matter of minutes🌊
Having Endo Excision wasn’t the rush of relief or excitement I had expected it to be. I had been ready to move on with my life and had looked forward to doing all the things I couldn’t do with Endo.
Instead I met fear head on. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
What if it came back?
What if not all of it was taken?
What if the hysterectomy for Adeno was the wrong choice?
What if I can’t have great orgasms again without a uterus?
What if I’m still in pain?
This fear led me to over indulge in food, becoming an emotional eater and racking up credit card debt in an attempt to live the life I had lost for fear I didn’t have much time until Endo came back.
My mental health took a hit. So much so I ended up with depression & using talk therapy to get out of it. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
My therapist said to me, “Are you scared of going back to your normal life? Do you feel like you have become your disease?”
Yes was the answer.
I didn’t know how to be a woman without pain. I didn’t know what normal was. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
I’ve been 17 months pain free now & still I’m learning how to live a normal life. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
& I want to hear about your fears. How do you cope with them & do your family & friends support you when you need it?
CLC MEMBER FEATURE:Hey everyone! My name is Goretti. I am 26 years old, and this is my story.
In February of 2017, I began noticing that I was really fatigued. Being in nursing school, I would just blame it on the lack of sleep. But then I started getting pain in my joints. It started off in my hands and went to my legs, arms, and jaw. There were days where I literally couldn't walk or get out of bed. I went to the Dr. & was diagnosed with Rheumatoid Arthritis at 25 years old. I was devastated & went into immediate denial. I refused medication, which made my symptoms/progression of my disease worse. It was to the point where the disease began to attack other organs, including my lungs. One day while I was in clinical, I began coughing up blood, & from there I found out that I had clots in my lungs that nearly killed me. All this caused me to fail out of nursing school and caused me to fall into a deep depression that I am still fighting to get out of.
Since then, it’s been a crazy rollercoaster ride of different medications/injections, hospitalizations & ER visits. It’s been very hard, but I have finally accepted this as part of my life. Working on restructuring my life around this disease has been very challenging. As someone who also has developed Fibromyalgia, dealing with the pain is a day to day process; simple things like getting out of bed & brushing my teeth are sometimes hard to do. But with the support of my doctors, family, and close friends, I’m going to live my life to the fullest!
I advise anyone who is dealing with an autoimmune disease to not let it rule your life! We are strong! I am more sympathetic, patient, and more appreciative of life now. I don’t sweat the small stuff as much anymore. I am learning to listen to my body, and rest when I need to. I still continue to do the things that I love (dancing, cooking, etc.) and I will re continue my journey to become a nurse! I may have a disease, but it WILL NOT HAVE ME!! #chronicloveclub
Self-destruction is painful to watch.
It’s mental health awareness week. A look inside those of us struggling so outsiders can better understand us.
What do they see though? Well, actually they see us as being self-destructive & to a degree they are correct. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
Often we get stuck in unhealthy habitual mental patterns which spiral us down a path nobody wants to be on. We don’t choose to have depression, PTSD, Anxiety & so forth but we can choose to stay there.
Why? Because change is scary & it can cause us more distress. It’s too easy to choose to avoid change & stagnate with our conditions. It’s familiar even if it’s not comfortable.
When we take the step to choose change, to push ourselves out of our depths & into a path of resistance which can lead to the unknown, it should be met with praise, support & love. No matter how many times we relapse. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
That’s what #mentalhealthawarenessweek
should be promoting - how to care for someone who is suffering, not just acknowledge us.
Would you agree?
Trip is over...back home and back into bed with my furry sons and a heating pad. I’m really glad I went but dreading what it’s going to do to my body. This week is a “full on energy” week at work. There’s no time for down time. So I’m storing up energy for the rest of the day. #travelrequiresenergy #spoonietravels
I haven’t really had time to even think lately. When I do get a moment to myself, it’s usually full of fleeting thoughts about what I might have forgotten to do or which apartment isn’t clean yet or whose mother still needs me to call them back.
Those moments, though, have also included a few like this—this is an unfiltered photo of me when the pain of my condition catches up with. My makeup wears off, my face gets puffy, and I’m laying on the floor under my desk hoping to relieve some swelling near my spine so I can feel my feet again.
It’s probably fate that EDS Awareness Month coincides with my busiest month of the year, the month even a healthy person starts to feel a little too tired to get up when the alarm goes off. For me, it’s a daily war that includes a few balancing acts: pushing myself hard enough to still oversee a major student rental operation while making my student staff recognize that I am their leader while also recognizing my limits and being careful enough that when the moments come that I can’t walk or move, they don’t say “but you were fine an hour ago.” Every May, I get 40-50 new college age tenants—and the year I got diagnosed, they spent half their day asking me what happened or gossiping among themselves. Now, on the first day, when I introduce myself and my title and my experience, I also introduce my condition—it is a blessing and a curse to share with them the reality of invisible disease while also being marked in their eyes as the sad, sick, and incurable girl. I will come out of these days stronger and smarter and with lessons learned—and when I got out from under my desk, I fixed my lipstick, got more caffeine, and got back to being the boss. Just remember that there are so many things you don’t and can’t see—or you could if you wanted to. ♥️🦓♥️ #ehlersdanlossyndrome #edsawarenessmonth #edsawareness #chronicpain #chronicillness #zebrastrong #butyoudontlooksick
Hello lovelies!💜 It’s been so long since I’ve posted but that’s because I went to the zoo! It was so wonderful and I had a great time but I’ve been recovering since then. Anyway these are some flamingos I saw! Exciting news though! I get to go to the Lupus Walk at the OKC Zoo on June 2nd! I’ll have to rent a wheelchair and buy my special sunscreen (which I didn’t have when I went to the zoo this last time- let me tell you, the off brand is definitely not the same!) and pack all my meds but I can definitely do it! I’m so excited! I can’t wait to connect with lots of other people with lupus! Anyway, I’m not feeling great today and I’m watching 13 Reasons Why season 2. What are y’all doing? Anything you’re looking forward to?
Those people doing battle quietly each day deserve respect 😘
Just Strong. Not strong for a girl, or strong for someone who is always sick. Just Strong. I really love this company and what it stands for and I’m excited to announce my partnership with them. I think it’s pretty clear why I choose to support them. You can see more pictures and information about it on my blog (the link is in my bio), but this is from the website; (note: I received this at a discounted price to post, all opinions are my own :)
“Our symbol – the squat.
The squat is the perfect analogy for life - it's about standing back up after something heavy gets you down and what better way to present this analogy by using it in our branding. We are here to empower and motivate strong women from every walk of life.
We want you to never give up and to stay strong physically and mentally. Just like the squat, our clothing is a symbol of standing back up, fighting against any resistance life throws at you and becoming stronger. This is the idea of where our company was born. Motivate strong women to overcome their adversaries and embrace their strength, no matter the source.
use discount code SARABERA10 and you will get 10% off! ————————————————————————
I have my first appointment Friday at the Shirley Ryan Ability Lab and I am really excited. I have heard some really great things, and have a lot of hope that they will help me get better, and STRONGER 💪🏻 ————————————————————————
*also the 7 Chakra Healing bracelet on my wrist is available at www.amazon.com/gp/product/B075V1MCPB
My parents always taught me that life is hard and that nothing comes easy BUT life is also what you make it!
My 28 years have not been the smoothest of sailing and I have been through things that I wouldn’t wish upon anybody but ALL of these experiences have taught me HUGE life lessons. These lessons have led me to the ambassador work I am now involved in and have led me to making a small difference in a world that is full of so much hardship.
Don’t ever be discouraged when things go wrong in life, it may not feel great at that moment but it is all part of the process, the bigger plan, the bigger picture and one day it will all make sense.
After 8 years of living with this disease it is all starting to make sense now and I feel so much more content with my diagnosis and how my life is panning out. It may be a shitful disease and may cause pain and worry like no other but it has blessed me with a passion for life, living and helping others.
It may not have been part of my grand life plans but as the saying goes, when life gives you lemons, make lemonade ❤️
From time to time I feel like I need an #emotionalreset
, a reminder of just how small and insignifact we are, so I turn to #music
🎶 and the #stars
I can stand under the clear night sky and feel so small, so inconsequential and pointless, yet feel the whole #universe
swell inside of me, #heartbodyandsoul
. It is a feeling that brings me to tears, yet I relish it, because I know not everyone has the ability to experience it.
But I highly recommend finding a remote location, away from #citylights
, and simply sit and watch the sky, no distractions, no #noise
. Let your mind open to the possibilities of what is out there, of the sheer expanse of space, the beauty in the birth of a star...#instanttherapy
#justfeel #musicismytherapy #musicmakesmefeel #Spotify #SpotifyID1254360236 #lookup #fibromyalgia #fibromyalgiasuckshardcore #fibrofog #fibroflair #chronicpainandfatigue #fibrodepression #butyoudontlooksick #invisibleillness #spontaneousspinalfusing #arthritis #spinalfusing #lchp #spoonie #spooniewarrior #spoonies
Also further health update... my NJ came out on Friday. Smiling because I can see my whole face again but I’ve had a really rough weekend, not tolerating water, my medicines or any foods at the moment but determined to stay out of hospital, had an X-ray on Friday before it totally came out but the Drs weren’t going to look at it until Monday. So I’m hoping they can fit me in tomorrow to fit a new one! I need it badly because my blood sugar is dropping and dehydration is setting in to the extent that passed out on a little walk with my boyfriend earlier! Didn’t injure anything and I’m okay though! Tw: weight! I’ve also lost 3.5kg since Fri am which makes me feel like I’m taking steps backwards instead of forwards! #gastroparesis #gastroparesiswarrior #chronicallyill #spoonie #tubie #nj #njtubie #butyoudontlooksick
Yesterday I had to vacate my room so that furniture could be dismantled, ready for move day. It meant that I had no place to go, where I could control the environment. No room where I could control the sensory input. No control over movement within my eye sight or noises within hearing. I found the experience extremely painful. Every second was de-spooning, I could feel my body crashing and I had nowhere to hide and get relief. I endured this all day, until finally my room was free to use again, in the evening. Closing my door, closing my curtains, Climbing into my bed, felt like bitter sweet relief. I don't want to be there, I have to be there. Isolation is the only way for me to stabilise and begin to recover.
I woke up this morning desperately sad and in a lot of pain. Not only had yesterday taken a toll on me physically, but emotionally I felt devestated that this happened, when I've been working so hard to manage my spoons and find my baseline. It felt like a kick in the stomach. So today has been a tough one for me, but I'm getting through it.
We got this warriors.
#cfs #mecfs #cfsme #butyoudontlooksick #spooniewarrior #myalgicencephalomyelitis #autoimmune #cfshealth #cfsrecovery #chronicillnessawareness #autoimmunedisease
#chronicillness #cfslife #meawareness #millionsmissing #chronicfatiguesyndrome #invisibleillnessawareness #spoonielife #spoonie #thechronicpainlife #fibromyalgia #fibro #fibrowarrior #chroniclife #chronicpain #chronicfatigue #chronicallymedisease
Sorry I’ve been awol for a while, have been focussing on my mental health and finals - had a mental health crisis a couple of weeks ago which lead to me having to go to a and e where I got to see a psychiatrist but now I have some extra support from the uni to help me through this tough time and my duloxetine dose has been increased (we think I’m not absorbing it properly which isn’t helping things) but things are definitely better now than they were last week so fingers crossed for a continued improvement! #gastroparesis #gastroparesiswarrior #chronicallyill #spoonie #tubie #nj #njtubie #butyoudontlooksick #depression