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#sickbutinvisible medias

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Love this girl! Beautiful. It's been a horrible weekend for me and truth be told it's been a struggle but I dragged my arse out and enjoyed my night with this one by my side. 
#girlsnight #burgandy #girlswithtattoos #SickButInvisible #chronicallymotovated #loveher #bestfriend #sidekick #shedidntgettheburgandymemo
Toddler vest finished for my niece for next winter! Took me about 9 hours all up (not count in the 6 hours I wasted, frogging it twice, because the original pattern was too difficult). So happy with the result, despite the back and fronts being 2 different sizes... I didn't want to frog it a 3rd time πŸ˜‚πŸ˜‚
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 #knittersofinstagram #knitting #vest #instaknit #iloveknitting #knittedvest #eds #ehlersdanlossyndrome #connectivetissuedisorder #celiacdisease #chronicpain #chronicillness #spoonie #zebra #zebrawarrior #sickbutinvisible #chronie #anxietydisorder #invisibleillness #PoTS #mcad #posturalorthostatictachycardiasyndrome #mastcellactivationdisorder #dysautonomia
Toddler vest finished for my niece for next winter! Took me about 9 hours all up (not count in the 6 hours I wasted, frogging it twice, because the original pattern was too difficult). So happy with the result, despite the back and fronts being 2 different sizes... I didn't want to frog it a 3rd time πŸ˜‚πŸ˜‚ . . #knittersofinstagram  #knitting  #vest  #instaknit  #iloveknitting  #knittedvest  #eds  #ehlersdanlossyndrome  #connectivetissuedisorder  #celiacdisease  #chronicpain  #chronicillness  #spoonie  #zebra  #zebrawarrior  #sickbutinvisible  #chronie  #anxietydisorder  #invisibleillness  #PoTS  #mcad  #posturalorthostatictachycardiasyndrome  #mastcellactivationdisorder  #dysautonomia 
Got to the beach this afternoon after cleaning Nana's house. It so lovely to have a dip & a cool & enjoy the salt air. Summer is back!!
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#summer #beach #sunsurfsand #water #waterbaby #eds #ehlersdanlossyndrome #connectivetissuedisorder #celiacdisease #chronicpain #chronicillness #spoonie #zebra #zebrawarrior #sickbutinvisible #chronie #anxietydisorder #invisibleillness #PoTS #mcad #posturalorthostatictachycardiasyndrome #mastcellactivationdisorder #dysautonomia
Got to the beach this afternoon after cleaning Nana's house. It so lovely to have a dip & a cool & enjoy the salt air. Summer is back!! . . #summer  #beach  #sunsurfsand  #water  #waterbaby  #eds  #ehlersdanlossyndrome  #connectivetissuedisorder  #celiacdisease  #chronicpain  #chronicillness  #spoonie  #zebra  #zebrawarrior  #sickbutinvisible  #chronie  #anxietydisorder  #invisibleillness  #PoTS  #mcad  #posturalorthostatictachycardiasyndrome  #mastcellactivationdisorder  #dysautonomia 
Baby Ivan now, 5 weeks old and breastfeeding like a champ! My body fails me daily on so many levels, but I’m forever thankful it gave me some kick-ass mama warrior strength to still be able to nurture my babies both inside and out.
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#babywhoops #babyclements #stomawise #ostobears #ostomyawareness #ileostomy #colostomy #urostomy #coloplast #sensuramio #crohnsdisease #crohns #ostomyawarenesscalendar2017 #pregnantwithanileostomy #pregnantwithanostomy #pregnantwithastoma #ostomy #crohnspregnancy #missstomawise #34weeks #sickbutinvisible #crohnswarrior #ibd #pregnantwithcrohns #crohnsandcolitis #babybump #bumppic #birthannouncement
Baby Ivan now, 5 weeks old and breastfeeding like a champ! My body fails me daily on so many levels, but I’m forever thankful it gave me some kick-ass mama warrior strength to still be able to nurture my babies both inside and out. . . #babywhoops  #babyclements  #stomawise  #ostobears  #ostomyawareness  #ileostomy  #colostomy  #urostomy  #coloplast  #sensuramio  #crohnsdisease  #crohns  #ostomyawarenesscalendar2017  #pregnantwithanileostomy  #pregnantwithanostomy  #pregnantwithastoma  #ostomy  #crohnspregnancy  #missstomawise  #34weeks  #sickbutinvisible  #crohnswarrior  #ibd  #pregnantwithcrohns  #crohnsandcolitis  #babybump  #bumppic  #birthannouncement 
Gym fuckery lol. When you can’t do a single pull down rep and turned it into a pull up bar ( I swear there is an issue w the weight calibration of this machine). Anyway, I was hit by presumably viral infection & spiked up to 40 degrees on Tuesday. Of course the stubborn child in me still insisted on training today (lightly). I was actually very feverish & tired but the energy in gym always perks me up even though I felt like total crap. #gymfuckery #gymfun #training #sick #stillworkingout #norestday #gymlife #gymaddict #gym #sickbutinvisible #lats #backworkout #backday #backtogym #sickstillmustlookgood #instafit #fitness #physique #trainevertdamnday #girlswholift #justforlaughs #wtfisthis #smallgirlproblems
Gym fuckery lol. When you can’t do a single pull down rep and turned it into a pull up bar ( I swear there is an issue w the weight calibration of this machine). Anyway, I was hit by presumably viral infection & spiked up to 40 degrees on Tuesday. Of course the stubborn child in me still insisted on training today (lightly). I was actually very feverish & tired but the energy in gym always perks me up even though I felt like total crap. #gymfuckery  #gymfun  #training  #sick  #stillworkingout  #norestday  #gymlife  #gymaddict  #gym  #sickbutinvisible  #lats  #backworkout  #backday  #backtogym  #sickstillmustlookgood  #instafit  #fitness  #physique  #trainevertdamnday  #girlswholift  #justforlaughs  #wtfisthis  #smallgirlproblems 
Celebrating our 2nd Birthday at #IBDSuperheroes HQ πŸ’œ
Text CCSH90 Β£3 to 70070
100% of YOUR donation will go directly to researching a cure for IBD πŸ˜™πŸ’‹ #IBDBatman 
#FundRaising #IBD #Cure #Crohns #Colitis #Stoma #Ileostomy #jpouch #CureCrohnsColitis #Fatigue #Pain #InvisibleIllness #sickbutinvisible #TogetherWeAreStronger #JustaPartofMe #IBDLife #IBDProblems #CuckFrohns #piccollage #Team #lifefriends #suporters #toomanyhashtags
Celebrating our 2nd Birthday at #IBDSuperheroes  HQ πŸ’œ Text CCSH90 Β£3 to 70070 100% of YOUR donation will go directly to researching a cure for IBD πŸ˜™πŸ’‹ #IBDBatman  #FundRaising  #IBD  #Cure  #Crohns  #Colitis  #Stoma  #Ileostomy  #jpouch  #CureCrohnsColitis  #Fatigue  #Pain  #InvisibleIllness  #sickbutinvisible  #TogetherWeAreStronger  #JustaPartofMe  #IBDLife  #IBDProblems  #CuckFrohns  #piccollage  #Team  #lifefriends  #suporters  #toomanyhashtags 
So, life has been slightly hectic - understatement of the century - and it suddenly dawned on me that I’d failed to announce my baby’s birth to you all! Ivan Ted Clements was born at 34 weeks on the 7th December 2017 at 15:56pm weighing a respectable 4lb 14oz. Despite his prematurity, he has done amazingly well only requiring 4 days in NICU with minimal intervention. He’s an absolute dream and has completed our family πŸ’•
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#babywhoops #babyclements #stomawise #ostobears #ostomyawareness #ileostomy #colostomy #urostomy #coloplast #sensuramio #crohnsdisease #crohns #ostomyawarenesscalendar2017 #pregnantwithanileostomy #pregnantwithanostomy #pregnantwithastoma #ostomy #crohnspregnancy #missstomawise #34weeks #sickbutinvisible #crohnswarrior #ibd #pregnantwithcrohns #crohnsandcolitis #babybump #bumppic #birthannouncement
So, life has been slightly hectic - understatement of the century - and it suddenly dawned on me that I’d failed to announce my baby’s birth to you all! Ivan Ted Clements was born at 34 weeks on the 7th December 2017 at 15:56pm weighing a respectable 4lb 14oz. Despite his prematurity, he has done amazingly well only requiring 4 days in NICU with minimal intervention. He’s an absolute dream and has completed our family πŸ’• . . . . #babywhoops  #babyclements  #stomawise  #ostobears  #ostomyawareness  #ileostomy  #colostomy  #urostomy  #coloplast  #sensuramio  #crohnsdisease  #crohns  #ostomyawarenesscalendar2017  #pregnantwithanileostomy  #pregnantwithanostomy  #pregnantwithastoma  #ostomy  #crohnspregnancy  #missstomawise  #34weeks  #sickbutinvisible  #crohnswarrior  #ibd  #pregnantwithcrohns  #crohnsandcolitis  #babybump  #bumppic  #birthannouncement 
Had an appointment with my GI and now I'm getting my Entyvio infusion (round 9). Doctor was concerned with my liver enzymes levels from my blood work last week. One number was twice as high as it is supposed to be and one number is four times as high as it's supposed to be. Yeesh! Likely form the Entyvio as we have seen a steady increase over the last few months, especially after increasing the dose. Before making any medication adjustments we have decided to go in for another colonoscopy and an upper GI scope. We had previously discussed the possibility of me not only having Crohn's, but maybe IBSD or possibly Celiac Disease. This will help us determine whether or not my Crohn's is active and if we could be dealing with one of these other things. He did happen to say that I've had a harder time than most getting my disease under control. In my head I was thinking, dude have you met me?! #special Haha! Along with the colonoscopy and scope, he is ordering a full liver work up. We discussed the possibility of me having something called Autoimmune Hepatitis. Hmm... πŸ€” gonna have to do some research on that one. I go in next Monday for both procedures. #shebelievedshecouldsoshedid #remission #crohnsdisease #ibdcantstopme #arthritis #spoonie #spooniesunite #spoonieforlife #invisibleillness #sickbutinvisible #chronicillness #ibd #arthritissucks #autoimmunedisease #ibdawareness #IBDvisible #entyvio
Had an appointment with my GI and now I'm getting my Entyvio infusion (round 9). Doctor was concerned with my liver enzymes levels from my blood work last week. One number was twice as high as it is supposed to be and one number is four times as high as it's supposed to be. Yeesh! Likely form the Entyvio as we have seen a steady increase over the last few months, especially after increasing the dose. Before making any medication adjustments we have decided to go in for another colonoscopy and an upper GI scope. We had previously discussed the possibility of me not only having Crohn's, but maybe IBSD or possibly Celiac Disease. This will help us determine whether or not my Crohn's is active and if we could be dealing with one of these other things. He did happen to say that I've had a harder time than most getting my disease under control. In my head I was thinking, dude have you met me?! #special  Haha! Along with the colonoscopy and scope, he is ordering a full liver work up. We discussed the possibility of me having something called Autoimmune Hepatitis. Hmm... πŸ€” gonna have to do some research on that one. I go in next Monday for both procedures. #shebelievedshecouldsoshedid  #remission  #crohnsdisease  #ibdcantstopme  #arthritis  #spoonie  #spooniesunite  #spoonieforlife  #invisibleillness  #sickbutinvisible  #chronicillness  #ibd  #arthritissucks  #autoimmunedisease  #ibdawareness  #IBDvisible  #entyvio 
Off to warm myself up with a bit of exercise .. I have 2 do my workouts in the water due to my crappy arthritic joints... But life goes on and so must I... after this it's back home 4 some techno and to get high 
Have a gr8 day people of planet earth 
#imatechnofreak#baggedboy#techno#technodj#edmlife#technoforlife#undergroundmusic#dancemusic#edm#tattooed#inkaddict#tattooaddict#baggeddude#ileostomy#stoma#invisibleillness#sickbutinvisible#crohns#ibd#crohnslife#instacrohns#breakingthestigma#crohnsdisease#crohnswarrior#essexboy#colchester#ukdj#ohyesohyes
Off to warm myself up with a bit of exercise .. I have 2 do my workouts in the water due to my crappy arthritic joints... But life goes on and so must I... after this it's back home 4 some techno and to get high Have a gr8 day people of planet earth #imatechnofreak #baggedboy #techno #technodj #edmlife #technoforlife #undergroundmusic #dancemusic #edm #tattooed #inkaddict #tattooaddict #baggeddude #ileostomy #stoma #invisibleillness #sickbutinvisible #crohns #ibd #crohnslife #instacrohns #breakingthestigma #crohnsdisease #crohnswarrior #essexboy #colchester #ukdj #ohyesohyes 
Been such a lovely day with my little princess today, shes been so talkative and loud and funny and is always giving daddy loves and magic kisses to make feel better haha. #daddy #daughter #daddydaughter #daddysgirl #myworld  #smiles #funny #laugh #chronicillness #ibd #crohnswarrior #crohns #chronsdisease #tubie #pegj #tpn #ivport #portacath  #sickbutinvisible
Still trying... I may not be getting far .. but I'm slowly figuring out bits n bobs like 4 example how a phaser or frequency shifter can change the the sound so much just by twisting a knob ... #imatechnofreak#baggedboy#techno#technodj#edmlife#technoforlife#undergroundmusic#dancemusic#edm#tattooed#inkaddict#tattooaddict#baggeddude#ileostomy#stoma#invisibleillness#sickbutinvisible#crohns#ibd#crohnslife#instacrohns#breakingthestigma#crohnsdisease#crohnswarrior#essexboy#colchester#ukdj#ohyesohyes
Still trying... I may not be getting far .. but I'm slowly figuring out bits n bobs like 4 example how a phaser or frequency shifter can change the the sound so much just by twisting a knob ... #imatechnofreak #baggedboy #techno #technodj #edmlife #technoforlife #undergroundmusic #dancemusic #edm #tattooed #inkaddict #tattooaddict #baggeddude #ileostomy #stoma #invisibleillness #sickbutinvisible #crohns #ibd #crohnslife #instacrohns #breakingthestigma #crohnsdisease #crohnswarrior #essexboy #colchester #ukdj #ohyesohyes 
Trialling a new smoothie today, peanut butter chocolate with fruit... not too bad, might have to play around with it a little, i was going to add some vanilla but I've run out πŸ˜•

Recipe: 2 bananas, a spoonful of avocado, Tbs of peanut butter, half a tbs of cacao powder, milk blueberries & strawberries for topping. Blend all ingredients together, except strawberries & blueberries, until smooth, pour in to a glass, top with fruit & enjoy!! .
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#smoothie #protein #peanutbutter #fruit #nutriblast #breakfast #healthyeating #masonjar  #health2018 #eds #ehlersdanlossyndrome #connectivetissuedisorder #celiacdisease #chronicpain #chronicillness #spoonie #zebra #zebrawarrior #sickbutinvisible #chronie #anxietydisorder #invisibleillness #PoTS #mcad #posturalorthostatictachycardiasyndrome #mastcellactivationdisorder #dysautonomia
Trialling a new smoothie today, peanut butter chocolate with fruit... not too bad, might have to play around with it a little, i was going to add some vanilla but I've run out πŸ˜• Recipe: 2 bananas, a spoonful of avocado, Tbs of peanut butter, half a tbs of cacao powder, milk blueberries & strawberries for topping. Blend all ingredients together, except strawberries & blueberries, until smooth, pour in to a glass, top with fruit & enjoy!! . . . #smoothie  #protein  #peanutbutter  #fruit  #nutriblast  #breakfast  #healthyeating  #masonjar  #health2018  #eds  #ehlersdanlossyndrome  #connectivetissuedisorder  #celiacdisease  #chronicpain  #chronicillness  #spoonie  #zebra  #zebrawarrior  #sickbutinvisible  #chronie  #anxietydisorder  #invisibleillness  #PoTS  #mcad  #posturalorthostatictachycardiasyndrome  #mastcellactivationdisorder  #dysautonomia 
Thats it the last little preview mix of my latest recording ....😁 quite happy with the outcome and that's from Mr over critical me .. Link in my profile ... #imatechnofreak#baggedboy#techno#technodj#edmlife#technoforlife#undergroundmusic#dancemusic#edm#tattooed#inkaddict#tattooaddict#baggeddude#ileostomy#stoma#invisibleillness#sickbutinvisible#crohns#ibd#crohnslife#instacrohns#breakingthestigma#crohnsdisease#crohnswarrior#essexboy#colchester#ukdj#ohyesohyes
Thats it the last little preview mix of my latest recording ....😁 quite happy with the outcome and that's from Mr over critical me .. Link in my profile ... #imatechnofreak #baggedboy #techno #technodj #edmlife #technoforlife #undergroundmusic #dancemusic #edm #tattooed #inkaddict #tattooaddict #baggeddude #ileostomy #stoma #invisibleillness #sickbutinvisible #crohns #ibd #crohnslife #instacrohns #breakingthestigma #crohnsdisease #crohnswarrior #essexboy #colchester #ukdj #ohyesohyes 
so I'm about 2 do a live stream using twitch... for some reason it says fifa 18 on it ..well I can tell you know I'm playing techno and not fifa ... so if u like techno and me mixing it without holding my phone in my hand .. come check me out live streaming my new tunes and maybe some more if I have time.. #imatechnofreak#baggedboy#techno#technodj#edmlife#technoforlife#undergroundmusic#dancemusic#edm#tattooed#inkaddict#tattooaddict#baggeddude#ileostomy#stoma#invisibleillness#sickbutinvisible#crohns#ibd#crohnslife#instacrohns#breakingthestigma#crohnsdisease#crohnswarrior#colchester#essexboy#ukdj

also that 1 viewer is me testing it out whilst sitting on 1s throne (bog life) 😁
so I'm about 2 do a live stream using twitch... for some reason it says fifa 18 on it ..well I can tell you know I'm playing techno and not fifa ... so if u like techno and me mixing it without holding my phone in my hand .. come check me out live streaming my new tunes and maybe some more if I have time.. #imatechnofreak #baggedboy #techno #technodj #edmlife #technoforlife #undergroundmusic #dancemusic #edm #tattooed #inkaddict #tattooaddict #baggeddude #ileostomy #stoma #invisibleillness #sickbutinvisible #crohns #ibd #crohnslife #instacrohns #breakingthestigma #crohnsdisease #crohnswarrior #colchester #essexboy #ukdj  also that 1 viewer is me testing it out whilst sitting on 1s throne (bog life) 😁
πŸ’œπŸ’ͺπŸΌπŸ’œ #crohns #crohnsdisease #crohnswarrior #warrior #ibd #sickbutinvisible #staystrong #bepositive #believe πŸ’œ
JERFing it! Another chicken salad, but I added kumara pan fried in pink Himalayan rock salt & pepper, avocado, red onion, balsamic vinegar, 3 types of lettuce, basil & parsley picked straight from the garden, & cherry tomatoes.... best of all, there's leftovers for lunch!
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#jerf #chickensalad #salad #homegrown #eds #ehlersdanlossyndrome #connectivetissuedisorder #celiacdisease #chronicpain #chronicillness #spoonie #zebra #zebrawarrior #sickbutinvisible #chronie #anxietydisorder #invisibleillness #PoTS #mcad #posturalorthostatictachycardiasyndrome #mastcellactivationdisorder #dysautonomia
JERFing it! Another chicken salad, but I added kumara pan fried in pink Himalayan rock salt & pepper, avocado, red onion, balsamic vinegar, 3 types of lettuce, basil & parsley picked straight from the garden, & cherry tomatoes.... best of all, there's leftovers for lunch! . . #jerf  #chickensalad  #salad  #homegrown  #eds  #ehlersdanlossyndrome  #connectivetissuedisorder  #celiacdisease  #chronicpain  #chronicillness  #spoonie  #zebra  #zebrawarrior  #sickbutinvisible  #chronie  #anxietydisorder  #invisibleillness  #PoTS  #mcad  #posturalorthostatictachycardiasyndrome  #mastcellactivationdisorder  #dysautonomia 
Having an ACTH stimulation test this morning. All going well so far πŸ˜€This will show if my body produces enough of its own cortisol, so I can get completely off steroids for good! Would love to be free of these long term! 
Traveling to the hospital early this morning I got a glimpse of normal life from the car window. I watched people hurrying to work, getting on buses and going to get their morning coffee. β˜•οΈ It made me reflect about how much I miss being part of society in that way, as I am mainly at home most of the time. So I was actually glad I was up and about and able to people watch today πŸ˜€ 
I miss being able to work so much, being part of something and feeling a sense of purpose. 
Society seems to define us by our jobs, I find it difficult at times when asked what I do! But for so many of us with Chronic illnesses, trying to get well is a full time job! In between hospital appointments, pacing, trying to make sure we take our medication throughout the day, eating well, taking supplements, resting, blood test, injections and other scans etc! There is no time or energy left! 
So for now I'm focussing on recovery and healing as my job πŸ’« Hopefully the rest will come later. πŸ˜€ x

#hospital #cortisol #tests #crohns #chronicillness #chronicfatigue #myalgicencephalomyelitis #spoonie #spoonielife #butyoudontlooksick #sickbutinvisible #society #life #grateful #appreciatewhatyouhave #prednisone #hydrocortisone
Having an ACTH stimulation test this morning. All going well so far πŸ˜€This will show if my body produces enough of its own cortisol, so I can get completely off steroids for good! Would love to be free of these long term! Traveling to the hospital early this morning I got a glimpse of normal life from the car window. I watched people hurrying to work, getting on buses and going to get their morning coffee. β˜•οΈ It made me reflect about how much I miss being part of society in that way, as I am mainly at home most of the time. So I was actually glad I was up and about and able to people watch today πŸ˜€ I miss being able to work so much, being part of something and feeling a sense of purpose. Society seems to define us by our jobs, I find it difficult at times when asked what I do! But for so many of us with Chronic illnesses, trying to get well is a full time job! In between hospital appointments, pacing, trying to make sure we take our medication throughout the day, eating well, taking supplements, resting, blood test, injections and other scans etc! There is no time or energy left! So for now I'm focussing on recovery and healing as my job πŸ’« Hopefully the rest will come later. πŸ˜€ x #hospital  #cortisol  #tests  #crohns  #chronicillness  #chronicfatigue  #myalgicencephalomyelitis  #spoonie  #spoonielife  #butyoudontlooksick  #sickbutinvisible  #society  #life  #grateful  #appreciatewhatyouhave  #prednisone  #hydrocortisone 
Chicken salad for dinner tonight... so nice to be able to eat meat again, and the lettuce and parsley are from my garden so I'm pretty proud of that!
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#chicken #salad #lettuce #homegrown #eds #ehlersdanlossyndrome #connectivetissuedisorder #celiacdisease #chronicpain #chronicillness #spoonie #zebra #zebrawarrior #sickbutinvisible #chronie #anxietydisorder #invisibleillness #PoTS #mcad #posturalorthostatictachycardiasyndrome #mastcellactivationdisorder #dysautonomia
Chicken salad for dinner tonight... so nice to be able to eat meat again, and the lettuce and parsley are from my garden so I'm pretty proud of that! . . #chicken  #salad  #lettuce  #homegrown  #eds  #ehlersdanlossyndrome  #connectivetissuedisorder  #celiacdisease  #chronicpain  #chronicillness  #spoonie  #zebra  #zebrawarrior  #sickbutinvisible  #chronie  #anxietydisorder  #invisibleillness  #PoTS  #mcad  #posturalorthostatictachycardiasyndrome  #mastcellactivationdisorder  #dysautonomia 
Managed to go out for a belated birthday lunch yesterday with family and friends! It was really lovely and I was very spoilt, but this is me today! I was exhausted even getting ready to go out, but it was really worth it! β€οΈπŸŽ‰πŸ˜ #birthday #familyandfriends #payback #postexertionalmalaise #needaweekinbed #chronicillness #chronicpain #chronicfatigue #myalgicencephalomyelitis #crohns #worthit #butyoudontlooksick #sickbutinvisible #pyjamasallday #spoonielife #spoonie
Managed to go out for a belated birthday lunch yesterday with family and friends! It was really lovely and I was very spoilt, but this is me today! I was exhausted even getting ready to go out, but it was really worth it! β€οΈπŸŽ‰πŸ˜ #birthday  #familyandfriends  #payback  #postexertionalmalaise  #needaweekinbed  #chronicillness  #chronicpain  #chronicfatigue  #myalgicencephalomyelitis  #crohns  #worthit  #butyoudontlooksick  #sickbutinvisible  #pyjamasallday  #spoonielife  #spoonie 
Throw back to 2 years ago, when my body was beginning to hint that things were about to go sideways again, when I was still capable of clambering over rocks and up hills (to a certain degree). This would've been taken only 2 months before I found out what EDS was & just how drastically my health and life were about to change. I haven't been back to this beach since, have actually only been to a beach once, earlier this month, since these photos were taken. What a ride the last 2 years have been.
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#beach #castlepoint #eds #ehlersdanlossyndrome #connectivetissuedisorder #celiacdisease #chronicpain #chronicillness #spoonie #zebra #zebrawarrior #sickbutinvisible #chronie #anxietydisorder #invisibleillness #PoTS #mcad #posturalorthostatictachycardiasyndrome #mastcellactivationdisorder #dysautonomia #lighthouse
Throw back to 2 years ago, when my body was beginning to hint that things were about to go sideways again, when I was still capable of clambering over rocks and up hills (to a certain degree). This would've been taken only 2 months before I found out what EDS was & just how drastically my health and life were about to change. I haven't been back to this beach since, have actually only been to a beach once, earlier this month, since these photos were taken. What a ride the last 2 years have been. . . #beach  #castlepoint  #eds  #ehlersdanlossyndrome  #connectivetissuedisorder  #celiacdisease  #chronicpain  #chronicillness  #spoonie  #zebra  #zebrawarrior  #sickbutinvisible  #chronie  #anxietydisorder  #invisibleillness  #PoTS  #mcad  #posturalorthostatictachycardiasyndrome  #mastcellactivationdisorder  #dysautonomia  #lighthouse 
Went to go see an ENT last week because I have been feeling like it was hard for me to get air in. As a child I had a tumor removed from the same location, so naturally he wanted to take a look. Not something I recommend, especially because apparently my septum is extra curvy and abnormal. πŸ™„ Why not? Have you met me?! Haha! I didn't think he was ever going to get the camera through there! A camera up your nose and down your throat is not a fun sensation! The extra curviness causes the airflow to bounce all around and has caused these things called LingualΒ tonsils (who knew we had those?!) to become inflamed. Which in turn is restricting air. No wonder I feel like I can't breathe! Apparently the Lingual tonsils assist the immune system in the production of antibodies in response to invading pathogenic bacteria or viruses. Gee, wonder why I'm having a problem with that? #crohnsdisease Explains why I've been so sick lately. So for the next two weeks I'm on a concoction of saline solution, Afrin nose spray plus Mucinex then recheck to see if the inflammation is under control. If not, I might need surgery. πŸ€¦πŸΌβ€β™€οΈ I guess the silver lining is, at least my tumor didn't grow back! πŸ™ŒπŸΌ Oh, and GP nurse called today, so along with being vitamin B-12 deficit, once again my vitamin D levels have dropped. Back on prescription strength vitamin D for three months. #crohnsdiseaseisstupid *** ***
#shebelievedshecouldsoshedid #remission #crohnsdisease #ibdcantstopme #arthritis #spoonie #spooniesunite #spoonieforlife #invisibleillness #sickbutinvisible #chronicillness #ibd #arthritissucks #autoimmunedisease #ibdawareness #IBDvisible #entyvio
Went to go see an ENT last week because I have been feeling like it was hard for me to get air in. As a child I had a tumor removed from the same location, so naturally he wanted to take a look. Not something I recommend, especially because apparently my septum is extra curvy and abnormal. πŸ™„ Why not? Have you met me?! Haha! I didn't think he was ever going to get the camera through there! A camera up your nose and down your throat is not a fun sensation! The extra curviness causes the airflow to bounce all around and has caused these things called LingualΒ tonsils (who knew we had those?!) to become inflamed. Which in turn is restricting air. No wonder I feel like I can't breathe! Apparently the Lingual tonsils assist the immune system in the production of antibodies in response to invading pathogenic bacteria or viruses. Gee, wonder why I'm having a problem with that? #crohnsdisease  Explains why I've been so sick lately. So for the next two weeks I'm on a concoction of saline solution, Afrin nose spray plus Mucinex then recheck to see if the inflammation is under control. If not, I might need surgery. πŸ€¦πŸΌβ€β™€οΈ I guess the silver lining is, at least my tumor didn't grow back! πŸ™ŒπŸΌ Oh, and GP nurse called today, so along with being vitamin B-12 deficit, once again my vitamin D levels have dropped. Back on prescription strength vitamin D for three months. #crohnsdiseaseisstupid  *** *** #shebelievedshecouldsoshedid  #remission  #crohnsdisease  #ibdcantstopme  #arthritis  #spoonie  #spooniesunite  #spoonieforlife  #invisibleillness  #sickbutinvisible  #chronicillness  #ibd  #arthritissucks  #autoimmunedisease  #ibdawareness  #IBDvisible  #entyvio 
40 years old  2day... and what a lovely present .. a cuddle from my son who needs cards n presents ... not me this is all I need .. love don't cost a thing..
#imatechnofreak#baggedboy#techno#technodj#edmlife#technoforlife#undergroundmusic#dancemusic#edm#tattooed#inkaddict#tattooaddict#baggeddude#ileostomy#stoma#invisibleillness#sickbutinvisible#crohns#ibd#crohnslife#instacrohns#breakingthestigma#crohnsdisease#crohnswarrior#essexboy#colchester#ukdj#ohyesohyes
40 years old 2day... and what a lovely present .. a cuddle from my son who needs cards n presents ... not me this is all I need .. love don't cost a thing.. #imatechnofreak #baggedboy #techno #technodj #edmlife #technoforlife #undergroundmusic #dancemusic #edm #tattooed #inkaddict #tattooaddict #baggeddude #ileostomy #stoma #invisibleillness #sickbutinvisible #crohns #ibd #crohnslife #instacrohns #breakingthestigma #crohnsdisease #crohnswarrior #essexboy #colchester #ukdj #ohyesohyes 
Happy ChristmasπŸŽ„to everyone! This was me and my beautiful Godmother, last Christmas Day. I made it out for a few hours with my family. We had a delicious meal @laturka_monton. Was so nice to be out and look normal! Although appearances aren't always as they seem with chronic illness! I had to go to bed straight after and felt awful, but it was worth the payback! 
Really hoping to be able to enjoy Christmas Day again this year, even if it's for a few hours, I will be really grateful! Hoping you all can do the same! Remember to pace and take extra care of yourself. X

#christmas #spoonie #pacing #family #chronicillness #chronicpain #sickbutinvisible #sickbutsmiling #chronicfatiguesyndrome #crohnsdisease #takeiteasy #fun #food  #grateful
Happy ChristmasπŸŽ„to everyone! This was me and my beautiful Godmother, last Christmas Day. I made it out for a few hours with my family. We had a delicious meal @laturka_monton. Was so nice to be out and look normal! Although appearances aren't always as they seem with chronic illness! I had to go to bed straight after and felt awful, but it was worth the payback! Really hoping to be able to enjoy Christmas Day again this year, even if it's for a few hours, I will be really grateful! Hoping you all can do the same! Remember to pace and take extra care of yourself. X #christmas  #spoonie  #pacing  #family  #chronicillness  #chronicpain  #sickbutinvisible  #sickbutsmiling  #chronicfatiguesyndrome  #crohnsdisease  #takeiteasy  #fun  #food  #grateful 
Watching Love Actually while wrapping presents! Got my first gift too, Jasmine couldn't wait any longer to give it to me. It's a book that the daughter of one of my favourite customers put together of her mum's writing. 
Jan passed away last year, and this is the 2nd Christmas without her & I've been missing her terribly at this time of the year. It was so lovely to recieve her book, I almost cried, I nearly cried when Kate showed it to me when she was sending it away tbh.
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#loveactually #wrapping #presents #gift #book #christmas #eds #ehlersdanlossyndrome #connectivetissuedisorder #celiacdisease #chronicpain #chronicillness #spoonie #zebra #zebrawarrior #sickbutinvisible #chronie #anxietydisorder #invisibleillness #PoTS #mcad #posturalorthostatictachycardiasyndrome #mastcellactivationdisorder #dysautonomia
Watching Love Actually while wrapping presents! Got my first gift too, Jasmine couldn't wait any longer to give it to me. It's a book that the daughter of one of my favourite customers put together of her mum's writing. Jan passed away last year, and this is the 2nd Christmas without her & I've been missing her terribly at this time of the year. It was so lovely to recieve her book, I almost cried, I nearly cried when Kate showed it to me when she was sending it away tbh. . . #loveactually  #wrapping  #presents  #gift  #book  #christmas  #eds  #ehlersdanlossyndrome  #connectivetissuedisorder  #celiacdisease  #chronicpain  #chronicillness  #spoonie  #zebra  #zebrawarrior  #sickbutinvisible  #chronie  #anxietydisorder  #invisibleillness  #PoTS  #mcad  #posturalorthostatictachycardiasyndrome  #mastcellactivationdisorder  #dysautonomia 
Sorry I post photos like these.. but it's how I try and spread the awareness of the illness I and so many more are suffering with... some of us have had more fights than hot dinners cos of this illness.. if you have any questions u may wanna ask then please do ... Fucking crohns .... I feel awful and very bloated . I've hardly had any sleep thanks 2 the bag keep filling up and I must of been backwards n forwards 2 the bog about 5 times between 1am and 10 am .

And then trying2 get back 2 sleep ain't easy especially when your boxer dog is snoring 4 England .. My last 2 days as a 39 year old aswell 2 add to the stress ... I don't wanna get old..nor do I wanna go bald  if i was up 4 sale I'd not get sold that's you all told ...😁 #imatechnofreak#baggedboy#techno#technodj#edmlife#technoforlife#undergroundmusic#dancemusic#edm#tattooed#inkaddict#tattooaddict#baggeddude#ileostomy#stoma#invisibleillness#sickbutinvisible#crohns#ibd#crohnslife#instacrohns#breakingthestigma#crohnsdisease#crohnswarrior#essexboy#ukdj#ohyesohyes

Same old hashtags sorry .. I'm a lazy fecker

This illness is so underestimated and still not enough known about it... how 1 day I can be fine the next I'm fucked up in pain . Serious stomach cramps that make you feel like you've been kicked in the gut numerous times the sickly feeling... the sheer tiredness and mood swings aplenty .. and so much more ... πŸ˜‘ merry flipping  Christmas
Sorry I post photos like these.. but it's how I try and spread the awareness of the illness I and so many more are suffering with... some of us have had more fights than hot dinners cos of this illness.. if you have any questions u may wanna ask then please do ... Fucking crohns .... I feel awful and very bloated . I've hardly had any sleep thanks 2 the bag keep filling up and I must of been backwards n forwards 2 the bog about 5 times between 1am and 10 am . And then trying2 get back 2 sleep ain't easy especially when your boxer dog is snoring 4 England .. My last 2 days as a 39 year old aswell 2 add to the stress ... I don't wanna get old..nor do I wanna go bald if i was up 4 sale I'd not get sold that's you all told ...😁 #imatechnofreak #baggedboy #techno #technodj #edmlife #technoforlife #undergroundmusic #dancemusic #edm #tattooed #inkaddict #tattooaddict #baggeddude #ileostomy #stoma #invisibleillness #sickbutinvisible #crohns #ibd #crohnslife #instacrohns #breakingthestigma #crohnsdisease #crohnswarrior #essexboy #ukdj #ohyesohyes  Same old hashtags sorry .. I'm a lazy fecker This illness is so underestimated and still not enough known about it... how 1 day I can be fine the next I'm fucked up in pain . Serious stomach cramps that make you feel like you've been kicked in the gut numerous times the sickly feeling... the sheer tiredness and mood swings aplenty .. and so much more ... πŸ˜‘ merry flipping Christmas
These two pictures are so true and despite a lot of the time not wanting to look too sick, I wish I would be able to outwardly show just how awful we feel with Chronic invisible illnesses! The pain is so easily disguised as we proceed through life, at many times unacknowledged by others that we are unwell and suffering. I am often in extreme pain, have terrible shattering fatigue and exhaustion and am too dizzy to stand, yet can look perfectly well to others! This can lead us to continue to tell the Wellness story and portray to those around us that we can manage to do more than we should, only leading to further symptoms and longer post exertional malaise (PEM or payback)

The second photo is of me on holiday having a meal, lots of people have said I look so well on this picture,as I was on steroids for Crohn's disease the previous years and had piled on the pounds and gained a large moon face πŸŒ™ As this had however disappeared at this time they automatically came to the conclusion I looked well, therefore I was better! It couldn't have been further from the truth! I felt like crying during this meal, was in so much pain and just wanted to sleep for a week, I don't know how I made it there, but was in bed for days afterwards. 
I learnt therefore we have to be honest with how we feel and that there is no point to push ourselves beyond our limits to please others! We must put ourselves  first in order to recover! Easier said than done I know! Love to all who are struggling with invisible illness 😌Stay strong πŸ’ͺ🏽 #invisibleillness #sickbutinvisible #chronicillness #chronicpain #crohnsdisease #chronicfatigue #dontpushtoohard #pacing #putyourselffirst #mentalandphysicalenergy #selfcare #dontjudge #thingswillgetbetter #staypositive #sharinghelps #lookscanbedeceiving
These two pictures are so true and despite a lot of the time not wanting to look too sick, I wish I would be able to outwardly show just how awful we feel with Chronic invisible illnesses! The pain is so easily disguised as we proceed through life, at many times unacknowledged by others that we are unwell and suffering. I am often in extreme pain, have terrible shattering fatigue and exhaustion and am too dizzy to stand, yet can look perfectly well to others! This can lead us to continue to tell the Wellness story and portray to those around us that we can manage to do more than we should, only leading to further symptoms and longer post exertional malaise (PEM or payback) The second photo is of me on holiday having a meal, lots of people have said I look so well on this picture,as I was on steroids for Crohn's disease the previous years and had piled on the pounds and gained a large moon face πŸŒ™ As this had however disappeared at this time they automatically came to the conclusion I looked well, therefore I was better! It couldn't have been further from the truth! I felt like crying during this meal, was in so much pain and just wanted to sleep for a week, I don't know how I made it there, but was in bed for days afterwards. I learnt therefore we have to be honest with how we feel and that there is no point to push ourselves beyond our limits to please others! We must put ourselves first in order to recover! Easier said than done I know! Love to all who are struggling with invisible illness 😌Stay strong πŸ’ͺ🏽 #invisibleillness  #sickbutinvisible  #chronicillness  #chronicpain  #crohnsdisease  #chronicfatigue  #dontpushtoohard  #pacing  #putyourselffirst  #mentalandphysicalenergy  #selfcare  #dontjudge  #thingswillgetbetter  #staypositive  #sharinghelps  #lookscanbedeceiving