#invisableillness

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So I have a #vision in my heart. It's much to big for me to accomplish, so that will mean God will have to make it possible if it is a vision He has put within me. To many #Lymies not only #suffer from #medicalabuse , #isolation , friends, spouses, & family abandoning them, & not enough money to do the proper treatment. They also have to become their own doctors & sift & wade through pounds of information, treating themselves. I want to design something called The Green Battle Box. I want one for men, one for women, & one for children. Maybe even a family box, since my entire family except my daughter, has Lyme. I would fill the with everything from supplements, enema kits, books that help with the battle, encouraging scriptures, & fun things that have nothing to do with sickness because we all need things to keep us happy in the midst of trials! Things that make us feel loved & normal, instead of sick. I could put natural body care, funny cards, a handmade gifts, etc. I would also like to make a box (or add to The Green Battle Box) stuff to encourage the person who went from family-spouse-friend, to the role of #caretaker . That's hard & they deserve encouragement! I want to give these boxes to Lymies & those helping them, for free! Like a non profit organization, sending out a box of battle strategy in the war on Lyme. #Encouraging & helping those at the end of their funds & end of their ropes. I want to include recipes that have helped me, and a children's book I have written for kids who have Lyme. Maybe it could be in honor of my late son, Daniel, & become part of my lifes work. Something I leave behind as a legacy to my children. Is there a site where you can do something, like raise money for a non profit, like Kickstarter? How could I do this, all you smart people out there? Doctors aren't helping, people are discouraged, I am angry about this suffering & I want to birth something out of this that makes a difference! What do you guys think? Does anyone know how I could pursue this drean. I will make it my ambition! #lyme #spoonie #chronicillness #invisableillness #fibromyalgia #lymediseaseawareness #nonprofit #pain #suffering #sick #snailmail
Sat using the recumbent bike at the gym because I'm really struggling on the treadmill today and decided to re-watch the brilliant documentary made about my disability Ehlers Danlos Syndrome. If anyone fancies finding out more about EDS then this documentary 'Issues With My Tissues' is available on YouTube for free! This still shows my own brilliant specialist Professor Grahame talking about the multi systemic nature of my disability which affects my entire body - internally, and externally. I am now waiting for a heart CT scan and Echo-cardiogram to monitor my ongoing heart issues. Along with another Endoscopy to check my bowel, an operation on my jaw and major surgery internally. And yet I look 'fine.' . . @geneticallianceuk @lara.bloom #EDS #ehlersdanlossyndrome #pots #posturaltachycardiasyndrome #hypermobility #invisableillness #raredisease #lymphoedema #heart #surgery #chronicillness #disability #fitness #health
I get poked fun often for being a bit of a germaphobe but I am so for a number of reasons. Lyme disease awareness month is a few days away as is the anniversary of when I was admitted to the hospital for Ryan no longer moving much in my belly. (Which could very well be Lyme related). *lyme CAN be congenital. I didn't get diagnosed until years after Ryan was born meaning I had it full bore pregnant with him. Symptoms in "congenital children" tend to pop up in school age or later so I have to keep the kid healthy and have a close eye on his symptoms. *when I get normal people sick I tend to flare. Like now I start to feel better from my cold and my bones just ache. My muscles feel like they could snap in two. I had to literally lay down in between bites of my dinner. My daughter did this to the house and there's zero chance of me cleaning it today. Not looking for pity, just understand, so I'll continue to educate and share for the upcoming month. #lymedisease #chonicillness #invisableillness #lymediseaseawareness #preemie #spoonie #sendspoons
Battling a migraine, allergies, fatigue and sore throat. It still made it to the gym. I did pull ups, leg presses and walked in the treadmill for 20 mins. Going to bed early in hope I will be all better tomorrow. • • • • • #fitmom #fitness #results #fitnessblogger #dailyinspiration #workoutdaily #workoutmotivation #migraine #allergies #brainfog #fibromyalgia #stillhavegoals #invisableillness #goodnight
Another of me and my boy Last night was a rough one. I don’t know why but during the whole night time I couldn’t fall asleep. I laid there for hours just staring at the ceiling. Today at PT I started balance board again. And I had another one of my hot flashes 🔥 and this time I checked my pulse and it was at 43. I thought it was wrong the past couple of times I have checked during a hot flash, but consistently during a hot flash it is really low. Also had an appointment with my pediatrician today. Good news is that I do not have strep throat. Bad news is that I have a sore throat and a fever (my eyeballs are hurting so much and we didn’t even know that i had a fever until during the appointment) for no apparent reason. My mom and the nurse asked me if I felt like I had a fever and I said that I feel like that all the time so no. My mom and I told her about how I have discovered that if I push the bone in my neck ever so slightly forward the pain gets better and the movement returns. She said that it is likely the pressure on the back of the neck and not the bone being pushed. And that if there was movement in the neck that it would be a big problem and there would be other problems. So I guess it is fine, but I still wonder about if maybe the pillow/BP (mentioned in November) is connected and maybe even the low HR and hot flashes (still not mentioned/really don’t want to tell a doctor about that). We also talked about how yesterday my face was in so much pain that it concerned my mom (reason for the appointment) but I explained that I was probably just the fact that I almost ripped out one of my teeth (permanent adult tooth). All my teeth are kind of loose so sometimes things happen. Pretty much it has been decided that things just happen and are a major 🤦‍♀️. Or as my doctor says “it’s okay we are used to weird things happening to you” LOL
This coulda been my victory lap, if I wasn’t on the verge of relapse.🎵 #497days #mdd #mentalhealth #whatyoudontsee #invisableillness
I am claiming this pillow as my own. I am King Flex. 🐾 #DogOfTheDay #dogkingdom #PuppyWithAPurpose #ServiceDogs #DogDays #LazyDay #doggy 🐶 #lapdogs #DogLife #LifeOfADog #Accessible #InvisableIllness #MentalHealthDay #NapTime #DogNaps #FurryFriend #SleepyPup #OhioServiceDog #occupationaltherapy #OT #animalassistedtherapy #AnimalKingdom Visual Discription: Flex rests his head and right front paw on a large pinkish purple pillow.
I am one of the #millionsmissing as I Rest’ at home, patiently waiting to feel just the smallest amount better. For those of you that live with a Chronic illness it’s never easy excepting waking up day after day feeling not like your old self. I am on my own Journey, It’s such a mind game. I’m sitting outside trying to enjoy the quiet sounds of nature and the warmth of the autumn sun allowing myself to rest as that’s what I need right now. Some days I don’t have the energy to hide behind this illness, it’s a constant struggle #cfsme #chronicfatiguesyndrome #tiredallthetime #sunshine #goodvibes #rest #onedayatatime #strongwomen #butyoudontlooksick #invisableillness #chronicpain #spoonie #spoonielife #life #lifeblogger
When mom life meets Crohn’s life. Just took my pills with an old hot juice box I found in my car. #Crohns #IBD #Momlife #Crohnslife #invisableillness
To read the rest...please go to zorilivinlife.com ⬆️ link in bio! Or visit Facebook Zori Livinlife Thank you for your support! 💫 💫 #zorilivinlife #blog #invisableillness #strongertogether #love #todayisagoodday #todayistheday #friends #love #family #momto3 #wifeyforlifey 💍 #builtonfaith #forgiven
“Just because you can’t see it, doesn’t mean it isn’t real.” I think this applies to a lot of thing. Mental health, invisible illnesses, supernatural and even ideas of faith. Even if it can’t be seen it can still be real. #migraine #mentalhealth #invisableillness #art #zentangle Here’s more of what I was going for. Next time I won’t use my awful cursive.
Friends!!! April is Sjogrens Syndrome Awareness Month and the Philly Walk for Sjogrens is on May 5th at the Philadelphia Zoo! I would love everyone to come out and support! If you donate $20 per person, you also get free admission to the zoo that day! Come out and join my team or donate to help me reach my goal!! Check the link in bio!
“Well you don’t look sick” Are you accusing me of faking my own chronic illness or tying to ask me what concealer I use? 🤦🏻‍♀️ #youdontlooksick #invisableillness #chronicpain #chronicillness #dontjudgeabookbyitscover #keeptherudeasscommentstoyourself #nooneaskedyou
Oh man did I need this...my leg would not hold out these next 2 overnights without this... . . . . #chronicpain #disabled #disability #patellofemoralpainsyndrome #patellofemoralsyndrome #invisableillness #invisabledisability #pfps
Mermaid tail giveaway💜💚🎉 Why do we need to win this? My little girl is 5 and loves being a mermaid, she actually believes she is part mermaid. She has a terminal condition called Cystic Fibrosis and it is a relentless shitty disease. But I decided a few years ago to start a small photography business @lizkphotography951 and specialize in Mermaids. I started it because I had bought my beauty some tails and thought maybe other kids would like this too and adults. Having CF living by the sea and being in the sea helps tremendously with the disease. People with cf require a ton of salt and benefit greatly when spending time in the ocean. You may not make children tails but I’ve always wanted a silicon tail but just not able to buy one because of the cost. I saw your new fabric ones and they are amazing. We hope you consider our story and flip through the rest of the photos of my little #cffighter and her mermaid journey 🧜‍♀️ #maddythemermaid #temeculamermaids #oceansidemermaids @finfolkproductions @lizkphotography951 . . . . #giveaway #mermaidsarereal #mermaid #mermaidlife #needtowin #mermaidsofinstagram #instamermaid #saltlife #cfawareness #cfwarrior #mermaidhair #cysticfibrosis #fucf #fuckcf #invisableillness #merlife #merkids #mermaidkids #mermaidlive #mermaidmonday
Resting my back a bit before getting back to video editing. I could really use a vacation from my body, it’s been a total dick recently:/ #selfie #blueeyes #chronicpain #spoonie #invisableillness #spinalfusion
🌟I didn’t get to post yesterday because I have been busy getting my life back! 🌟Yesterday’s ☀️ will pull me through today’s ☔️ day. When I was plagued with #lymesdisease I was so frustrated. Underneath my illness was an ambitious, focused person with big dreams and I had a plan to get there✨ . As time went on the plan started to unravel as my joint pain was so debilitating I couldn’t do the commute anymore. My knees were so stiff, I had to pull over .Then it got worse- I would forget where I was going even though I knew the only place at 8 a.m. was work. I was so disoriented I felt like an elderly person, I knew I could no longer drive anymore. I was humiliated because people didn’t understand why I was late in the mornings or why I was sitting at my desk with a blanket around me with my knees to my chest. When it was time for me to leave my company, I felt like I had lost a child. I had invested so much time and energy into work, my husband and I moved closer to grow this business. My contacts were calling me to make deals for weeks after I left and I couldn’t help them. Everything we moved for was lost, all of the success I yearned was abandoned. I also felt abandoned , I placed my trust and all of my energy into this company. In trying times like these it can seem like life is over. I never thought there would be anything worth working for again. There is always light when you escape the tunnel of darkness. The purpose of this story is to cheer you on to keep fighting through your time. There will be a solution. I found my cure to health when I asked God for solution, none of my medical treatment was working. The worse part was , my Doctors didn’t care that I wasn’t getting better. Your fight to get better does not go unnoticed. I just turned 30 and half of my life has been spent searching for an answer . It took 15 years but I will make sure the next 15 years are the best ever!!💋 🎉 @globallymealliance @global_lyme_alliance we can’t wait to join you in #greenwichct ! . #lymedisease #GLACTGala18 ##Lymediseaseawareness #spooniesupport #spooniewarrior #lymediseasewarrior #becomingthebestme #becomingtherealme #secondchanceatlife #grateful ❤️ @chronicloveclub
A surprisingly photogenic photo from when I had to have a nap on the beach. When I was at my worst I very much struggled to walk. Even now you can see me clinging onto friend's arms to support me as I go to the shops or even just down the street. During my worst time my goal every day was to walk down my street and back, and it was difficult some days I couldn't get dressed let alone walk. My mum decided to motivate me differently and as often as she could would take me to different places for our walks. Here pictured is a beach in Wales where I walked a bit further than usual, had a nap on a log and then got back to the car. Yes, these walks were very short and perhaps not 'worth the petrol' for many of you but, the improvement on my mental health and motivation a new destination gave me really improved my energy levels. #ChronicFatigueSyndrome . . . . . . #cfsfighting #muaythai #girl #chronicillness #chronicfatique #cfs #me #unrestricted #lifeunlimited #fitness #fitnesslifestyle #girl #women #Model #beach #pretty #spoon #spoonie #invisableillness #brunette #hunterboots #hunterwellies
I am counting down until I can drive my baby again. I think it's been over 5 months since I have and now we are coming into winter soon it will be even longer... gosh darn it. She makes me so happy. #ostomate #ibdwarrior #barbiebum #nocolonstillrollin #ileostomy #stoma #ulcerativecolitis #proctocolectomy #coloplast #ibd #spoonie #invisableillness #inflammatoryboweldisease #thisgirlloveshercar
How I love a productive morning. 😊 Shopping with the niña, a visit with my faves, bedding changed, three loads of laundry done, reinforced the shed floor, dinner prepped and........oh my life I can't keep my eyes open for a second longer , the wall of chronic fatigue has just hit like a tsunami. Maybe I'll clean the car tomorrow 😩😩 ● ● #humpdayishumiraday #humira #humirahangover #madebythedevil #ibd #ibdwarrior #inflammatoryboweldisease #autoimmunedisease #uniqueibd #liverfailure #thyroiddisease #osteoarthritis #spondyloarthritis #ibdawareness #ostomyawareness #ostomyreversal #chronicfatigue #chronicillness #invisableillness #invisibledisabilty #spoonie #thespoonielifechoseme #dontjudgeabookbyitscover #girlswithoutguts #tattooedchick #girlswithink #rockoutwithyourtatsout #inkedandawesome
Today gertie came to a hospital appointment with me. She was really good proud of her. Health update: I'm being referred to the Royal free hospital in London to talk about a possible stem cell transplant and other things we maybe able to do to help me. Otherwise for the moment we carry on as normal. #puppy #puppies #dogsofinstagram #puppiesofinstagram #shepador #assistancedog #intraining #sickhuman #invisableillness #adit #sdit #servicedog #chronicallyill #chronicillness #spoonie #spoonielife #hospital #assistancedogintraining
Having taken part in the trial for the #pleaseoffermeaseat badges, it’s great to see more changes happening to help make London more accessible. It is #priorityseatingweek so you may notice signs and posters around the #tfl system. Please take a moment to look up and notice others around you, not all disabilities and conditions are visible and people are often too shy to ask you to give up your seat. You may see someone with crutches, using a walking stick or with their arm in a sling etc. It’s shocking how even with things like these, which are visible indicators that someone might need help, how often I see other commuters turn a blind eye. I remember a few years ago when I heavily relied on a walking stick I would hear people say how disgusting they thought it was of me to pretend to need it just to get a seat. Their judgment made an already difficult journey that little bit harder to deal with. They couldn’t see the bolts and cage holding my spine together, they just saw the outside which to them looked fit and healthy. Since I’ve had my blue badge I’ve been less nervous about making long journeys on public transport and don’t worry so much about whether or not I will be able to get from A to B. Please don’t assume you know what is going on. You will see people who look fit and healthy in your eyes but in fact are secretly struggling. The person in front of you might be epileptic, have anxiety, be visually impaired, be weak from cancer treatment, the list of hidden disabilities and invisible illness is endless. If you see someone who is wearing a tfl badge, whether it’s the new blue ones or the white ones for pregnant women, please be kind enough to offer them your seat if you are able to! It doesn’t matter how someone looks to you or what their age may be. Even if you don’t see a badge but think someone might need assistance there’s no harm in offering. A small act can have a big impact on someone’s day. #travelkind #transportforlondon #londonunderground #tubetravel #disability #disabilityawareness #notalldisabilitiesarevisible #hiddendisability #invisableillness #bekindtooneanother #travelkindly #takeamoment #raiseawareness #actofkindness
Lately I've been getting mad Ideas and I'm choosing to just go with them and flow with them. We spend so much time anxious about what may and may not happen. Why not let go of the control and just flow and see what unfolds?♡ #crohnswarrior #crobnslife #mentor #publicspeaker #publicfigure #positiveinfluence #inspirationalpeople #morninginspiration ##ibd #crohnsawareness #ibs #newvegan #holisticpath #coach #takerisks #autoimmunedisorder ##spoonie #colitis #crohnsandcolitis #ibdlife #ibdinspireme #crohnsdisease #entyvio #remicade #humira #invisableillness #vlog #blog #newyoutube #inflamotaryboweldisease
Having a bit of a crush on powder pink, perhaps it’s all those spring feels! How about a wheat pack in this lovely colour? 🌸⠀ 📷@bymolle ⠀ ⠀
When I was tagging the location of this picture I remembered a few years ago my brother asked where is “onion” square. We all looked at him like 🤨 He said you know onion square Again 🤨 Onion square you know U-n-i-o-n square Umm... no “union” emphasis on the “U” Haha, well onion square was beautiful and we finally took a picture in front of the heart ❤️
Today I had my custom AFO (Ankle-Foot Orthotic) fitting • Did you know EDS can cause sever joint instability? Unfortunately, we have discovered that my entire right leg is pretty severely unstable. I have torn multiple tendons, multiple times in my ankle and dislocate my hip on a regular basis. Not only does this cause pain, but I am damaging the soft tissues every time I dislocate or sublux Hopefully, an AFO will help stabilize my joints, however my orthotics doctor believes I will need to brace some other parts of my leg (i.e. knee or hip). I’m hopeful this will increase my stability, decrease pain and decrease the amount of energy I am using while walking. I go back next week to see the AFO and we will work my walking to determine what comes next • • • • • #spoonie #spooniestrong #invisableillness #butyoudontlikesick #disabled #disabledandcute #chronicillness #chronicillnesswarrior #mcad #mcas #mastcellactivationdisorder #cfs #fibromyalgia #eds #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome #orthotics #afo
Aww the house of IEP meetings.. lovely paperwork and more information than my brain can hold lol #adhdkids #adhdmom #specialneedsparenting #mentalillness #boymom #momof3boys #iepmeeting #iep #momlife #invisableillness #oddawareness #sencoryprocessingdisorder
Haha This is so dumb but who here feels like they have spent half their lives staring at ceilings like this in the Doctors’? 😂 I specifically remember when I was 10 I would go to physical therapy after school every day and I would just lay in the traction machine staring at the ceiling thinking this will be the rest of my life… And here I am 10 years later staring at the same types of ceilings😂. I have counted those dots so many times while pretending whatever they’re doing to me isn’t painful....😂🤷🏻‍♀️ #chronicallyalive #chronicillness #fibro #fibromyalgia #EDS #CSF #POTS #awareness #pain #rheumatoidarthritis #RA #autoimmunedisease #auotimmune #spoons #potsie #spinalfusion #spinalfusionsurgery #rods #invisableillness #cfs #backpain #siatica #chronicpain #neckpain #backproblems #dysautonomia #healing
None of the jobs I needed to do got some today but I did managed to do a load of washing and cook tea...with difficulty but I managed it. The rest if the day has been spent on the sofa, in bed or in a bath of heat lotion and red hot water. I've just not found comfort anywhere today. Been on Tramadol and paracetamol every 4 hours today and still had my ovaries thumping and having me doubled over, along with the joint pain and the fatigue. Today has been fun.... 😣😣 on the positive side I have had a friends binge session today and that always makes me feel good. I'm bed now hoping to get some sleep before work tomorrow. #endosucks #pain #painblog #paindiary #endo #Endometriosis #endosisters #spoonies #chronicpain #invisableillness #inflammatory #inflammatorydisease #support #research #findacure #jointproblems #bodyaches #fatigue #pelvicpain #notjustbadperiods
Just finished this wonderful #poetrypamphlet by #HannahHodgson called #TheBody Hannah’s poetry draws on her own illness and disability and raises questions about identity, how we see ourselves and how we see others. Well worth a read! . #disability #invisableillness #disabilitywriters #poetry #amreading #recommendation
When they don't believe you... Try having more than one #invisableillness
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