Hi everyone! I know 200 followers isn't exactly an achievement, but when I started sharing sarcastic memes at the beginning of the year, it was really an outlet to stop me going crazy and doing a school shooting or punching my physio in the tit (violence isn't cool kids!). But it's very nice to see that there are some other people out there who appreciate a good swear about chronic illness. Thanks for humouring me! Xxxx . . . . #eds #ehlersdanlos  #jointhypermobilitysyndrome #hypermobility #hypermobilitysyndrome #hypermobile  #zebrastrong #spoonie #medicalzebra #dysautonomia #ehlersdanlosawareness #chronicillness #chronicpain #myalgicencephalomyelitis #chronicfatigue #chronicfatiguesyndrome #posturalorthostatictachycardiasyndrome #spooniewarrior #disabled #disability #disabilityawareness #invisibleillness #butyoudontlooksick  #reynauds #disabodyposi #wheelchair #wheelchairaware
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Yessssss!!! I’m so thankful that it’s been approved. For those wondering (my fellow chronic friends) the approval was for the POTS & CFS/ME. I don’t know if that’s because right now with me being bedridden I’m not up and about getting hurt or if that’s normal. #longtermdisability #approved #weightoffmyshoulders #myalgicencephalomyelitis #POTS #dysautonomia #EDS #CFS #PEM #chr#chronicfatiguerome #chronicfatigue #fibromyalgia #bedridden #bedbound #zebra #spoonie #reynauds #chronicpain #millionsmissing
27 0
A simple moment of clarity hit us with a question one night... Why on earth is there nothing that you can rub onto your skin to stay warm? We use creams and lotions every single day for other human-related issues, so why was there nothing for the cold? The answer... Coldscreen, a natural lotion you apply before going into any cold environment to help keep you warm for up to 4 hours. Visit uthermic.com for more info 👌🙌 #uthermic #coldscreen #inspiredbywarmth
60 1
The snow looks so beautiful today ❄️😍 definitely don't need a filter on this! Yesterday was an absolute disaster. Birmingham clearly wasn't prepared for the amount of snow it got 😂 flights cancelled, trains cancelled and no buses at all. I couldn't get to placement so my house mates and I had a snow day with food and TV 😁 here's to hoping my bus starts running by tomorrow.. #snowday #birmingham #harborne #sunandsnow #sobrightoutside #butsocold #beautifulview #somanysnowmen #studentnurse #placement #fibromyalgia #uctd #reynauds #pituitaryproblems #chronicillnessawareness
53 4
🎄 Snow days are less fun when you have Reynaud's... #keepingwarm . #reynauds #coldhands #sno#snow/a> #gloves #brr #snow #christmas #writerslife #aspiringauthor #writersofig #nickij
8 0
2 events in 3 days completely overwhelming and wasn’t planned this way, but I made the drive and stayed for 3 hrs. I didn’t brush my hair (or teeth) because I knew I’d be pushing it. I am truly blessed with the most amazing family and I know I’d be lost without them. They let me be when I need it, but are there to offer support, to take my plate, and to be the shoulder to cry on. A special quote in our family is “Ohana means family. And family means nobody gets forgotten or left behind”. Not the Christmas I was wanting, but I got to spend tonight with 4 generations. My 3 living grandparents, both my parents, all 5 of us siblings with our significant other, and 9 grandkids. For that, I am thankful and lucky. Did you notice the saying on my shirt? #christmas #family #ohana #christmaspjs #myalgicencephalomyelitis #POTS #dysautonomia #EDS #CFS #PEM #chr#chronicfatiguesyndrome #chronicfatigue #fibromyalgia #bedridden #bedbound #zebra #spoonie #reynauds #chronicpain #millionsmissing
50 1
Feet. They need love too. • • • (Not pictured: my current purple Reynauds feet. Because “Corpse snausages” isn’t a good look) ••••••••• Throwback to digging my feet deeply in the sand, soaking in the sounds, smells, energy, and beauty of the ocean ••••••••• I miss high heels. Pedicures. Unswollen. These puppies need to be elevated, raised up above my head for awhile, wrapped in warmth. Hardened parts softened so that my roots can feel the earth • • • #reynauds #snausages #purple #feet #spoonie #fibromyalgia #littlebitoflupus #barkingdogs #loveyourfeet #selfcaresunday
12 2
Dressed like a Christmas tree on today's run. An 80 minute run doesn't normally feel so hard but the icy pavements meant slowing it down and the icy temperatures played havoc with my hands. I will not be defeated by the cold! #defyexpectationstogether #instarun #runup2christmas #ironmantraining #ironmantri #triathlontraining #thetrilife #runnersofinstagram #runhappy #reynauds #sundayrunday #ironmanbolton2018 #inov8 #enduranceathletes #3athlonlife #ukrunchat #uktrichat #ukrunners #running #run2inspire #fromwhereirun #snowing
75 3
While we can choose any direction we wish in moments of life uncertainty ... Sometimes the best way is to suck it up, walk straight into it with complete trust and faith in what you believe, and to not back down until you have your answer either way... #onewaytogrow  #uthermic #coldscreen #inspiredbywarmth
435 4
Very much so. Only been awake maybe 1 hr today. It’s been a long time since I crashed this hard....but totally worth it. When the decision was made I wouldn’t return to work it was so I could be more present in family life. Right now it’s not much family time, but I made it yesterday and that’s all that matters. Thanks @potsiespoons for the perfect drawings #myalgicencephalomyelitis #POTS #dysautonomia #EDS #CFS #PEM #chr#chronicfatiguesyndrome #chronicfatigue #fibromyalgia #bedridden #bedbound #zebra #spoonie #reynauds #chronicpain #millionsmissing #family
34 0
🎶It’s the moooooost wonderful time of the yeeeeear🎶 #reynauds
9 3
Hey. You’re not alone. #Repost @endostrong ・・・ my favorite reminder 💛#chronicillness #adenomyosis #endometriosis #invisibleillness #chronicheadaches #reynauds #autoimmunedisease #yourenotalone
52 6
One of the most memorable and inspirational sunsets that we have ever seen. Taken of the founders here during a UThermic Team hustle retreat in Nicaragua.. A time of a little bit of patience, a lot of persistence and an extreme amount of just downright hard work! (with some laughs, swims and drinks to hold everything together)😉🙌 #uthermic #coldscreen #inspiredbywarmth
263 2
Just looked at my FitBit heart rate info for while I was up and about. I have mine set to show when my HR hits 100+ as that’s when I start to feel more intense symptoms. It hit almost 120 while I was getting ready and stayed above 100 the whole time I was out. First, it was completely worth it. I purposely didn’t schedule anything (except a long term disability visit) this week so I could go. It’s crazy how something so simple as going to enjoy a fun play can do this. Knowing my HR will ultimately help me be able to pace myself better. Some people have found that as they pace themselves better they are able to slowly, very slowly, increase their activity. While a FitBit isn’t exact, it gives me an idea. Baby steps. #myalgicencephalomyelitis #POTS #dysautonomia #EDS #CFS #chr#chronicfatiguerome #chronicfatigue #fibromyalgia #bedridden #bedbound #zebra #spoonie #reynauds #chronicpain #millionsmissing #pacing #heartrate #fitbit
36 1
I MADE IT! After not being able to come see Jenna in her play I was devastated. I was able to sleep almost all of today so that I could make it. Had friends & family drive. My newly adult nephew, grandparents, and friend Shelli & her family were all there. By the end I was shaking and my cognitive skills were not all there...but I made it!!! #christmasmiracle Oh and I’m wearing my new @sonnetjames dress. It’s so comfy and cute. Forgot to turn the flash on, but this one is a magenta color. #myalgicencephalomyelitis #POTS #dysautonomia #EDS #CFS #chr#chronicfatiguesyndrome #chronicfatigue #fibromyalgia #bedridden #bedbound #zebra #spoonie #reynauds #chronicpain #millionsmissing
49 6
Double trouble workout kind of day: Breakfast was a 6am class at @crossfit_dawn where I did my first ever headstand (against a wall)🙌🏽. . I'm hoping to join this box in January - The skills involved will really compliment @ironmantri training (flexibility, mental strength, power, agility etc). . Dinner served up 8x3 mins road run at RPE 8-9 with 1 mins rests. Really struggled to get out the door in the cold with the Reynauds flaring up but layering up helped a lot- by the time I started my reps, I was snug as a bug in a rug: woolly hat, neck warmer thingy, 3 tops, hoody, gloves, leggings and 2 pairs of socks. Classy.... . #defyexpectationstogether #ironmantraining #ironmantri #womentriathletes #womenwhotri #endurance #crossfit #inspiringwomenrunners #marathoners #triathlon #triathlontraining #thetrilife #3athlonlife #6amclub #triathlongram #runlondon #reynauds #ironmanbolton2018 #tri365 #runhappy #winterrunning #wintertraining
86 5
My recovery goal. I’ve been telling Jason that I’m not worried about any vacations in the short distance, but my 40th and our 20th anniversary are both in the 1st half of 2019. That gives me approx 18 months to make my health goal. I won’t be cured, but I want to be healthy enough to travel to either Bora Bora or somewhere in French Polynesia. I’d like to stay in one of the bungalows on top of the water for a night or 2. I’m realistic that we probably couldn’t afford every night in one of these bungalows. I want to go snorkeling in the clear turquoise water with rays, reef sharks, sea turtles, and all the life in the coral reefs. I want to soak up the sun and sit on the warm beach with my non-alcoholic daiquiris. Most importantly I want to look back on 2017-2018 and give it the “I won! Screw you!” It deserves. All while celebrating the marriage that has definitely become more in sickness than in health. (Our 1st yr of marriage is the same time I started having major pains and knew something was not right). I want to be able to be optimistic for what the next 40 and 20 years bring. (Sorry Jenna, you won’t be invited) #recovery #goals #forty #twentiethanniversary #familiesareforever #borabora #polynesia #ocean #reeflife #frenchpolynesia #snorkel #relax #sun #sand #myalgicencephalomyelitis #POTS #dysautonomia #EDS #CFS #chr#chronicfatiguesyndrome #chronicfatigue #fibromyalgia #bedridden #bedbound #zebra #spoonie #reynauds #chronicpain #millionsmissing
55 5
A black and white, yes or no question for you: When you take a good look back at yourself right now, do you see someone that is living a full, inspired, love filled life that has a purpose? If not what can you do today that can move you forwards towards that... A quick phone call, message or doing something you have been putting off for a while is one of the best ways to start... 👊  A big thank you to @alexanderneimert for capturing this amazing moment #uthermic #coldscreen #inspiredbywarmth
377 6
I’ve been wanting to do something completely honest for my 1000th post. All of these photos have been taken in the last 6 months. The first few is the face I hide from the world. I hide it from friends & family. Sometimes Jason & Jenna get bits of it. The others...what the world sees. The good days. Today an independent assessor came in to interview me for the long term disability claim. I did get dressed for her, but couldn’t leave bed. There were lots of tears shed as I talked about my past life, life now, where I think and hope I’ll be in a year...I wanted to crawl up into a ball and ugly cry instead of answer those questions. There are days that making it 50 steps is impossible. I can’t get enough energy to answer a call from my mom or dad. Even holding my phone for very long puts my whole body in pain...the type that makes you nauseous. On a good day I’m able to enjoy & learn from a documentary, talk with friends & family on the phone, and one day I even emptied half the dishwasher! I’m full of “invisible” illnesses and disabilities. Most have so little funding that drs don’t even learn about them in school or they’re a chapter that the professor doesn’t go over. They’re not glamorous and they’re still unbelieved by some. (That is much better than when I was diagnosed 10 yrs ago, that’s good!) I hid the hard days over and over because that’s not what others want to see...it’s not what I wanted to portray. I still struggle to not say I’m doing well when someone asks. I think we all put on masks and do our “ugly crying” in the corner. I wonder how the world would be different if we wore our worries, pains, and so much more where others could see them. I didn’t share my problems until I had to because I wanted to look strong and healthy...normal. My good and bad days may look different now than they did even a year ago. That doesn’t mean those days were better or worse. We all have good and bad days. Life isn’t a competition of who can have the best/worst days. Guess what I’m trying to say is, we all have bad days. I would love to see a more equal example of what real life is. Good and bad.
42 8
Life is handing us some pretty crappy cards at the moment, almost being pushed to breaking point. But when I'm almost at rock bottom I have photos like this to look back at and it just fills me with so much love. I have the most adorable nephew who doesn't realise how shit this world and the unconditional love he has for all of us just melts my heart. He loves his Uncle Ben so much already 💖 #Nephew #joshuajames #love #beautiful #gorgeousboy #fiance #lookingforpositives #starsdontshinewithoutdarkness #chroniccouple #ckdstage5 #lupus #fibro #diabetes #reynauds #searchingforsilverlinings
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Feel and use the amazing suns energy to cover yourself with your own powerful glow. Use this every morning before you go out into your day and remember that you even you reading this is a complete miracle... Now go and have an amazing rest of your day!! 🙌👍 #uthermic #coldscreen #inspiredbywarmth
431 3
In a stunning turn of events, guess who does NOT, in fact, have a sprained finger? This gal!🐱🐱🐱So about a day and a half after the initial diagnosis, I noticed that my middle finger was starting to swell like my pinky. Sprains don’t, you know, migrate generally, so I was confused. But hey, maybe I slammed that one and didn’t notice it? Who knows. So I kept icing it and immobilizing it throughout the day. It was honestly not getting any better, but sprains take a while to heal (my ankle STILL hurts). 🐱🐱🐱 today I saw my doctor who has known and treated me for about seven years. He knows my history and is just generally a good dude. I went in, explained I had a negative X-ray, new swelling, and painful fingers. Literally diagnosed me in SECONDS with something called #reynauds disease. So what the hell is that?🐱🐱🐱 Basically the small blood vessels in my fingers will constrict and block blood flow, causing the fingers to go really pale. I probably didn’t notice that much because I am seriously SO pale. As blood stays out, your fingers can turn purple red and go numb. Then as blood returns they go red and can swell up and hurt. It explains everything. Turns out, of course, that everything one would do for a sprain (ICING IT) makes Reynaud’s worse. So now that I know what’s wrong and have proper medication to help, as well as gloves to wear at work since I work in a damn co-op and am holding cold bottles constantly, I should heal quickly. I’m relieved it’s not something worse like arthritis. I also like that now when Lewis complains about my icy hands and feet I can just yell “I HAVE A MEDICAL CONDITION SO SHUT IT.” This has been an episode of Maggie’s Garbage Body, we hope you’ve enjoyed. #also #imbasicallyusingthecats #asmyownpersonalfingerwarmers #stickemrightunderthebellyfat #noregrets #zombiefingers
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CUSTOMER SUCCESS STORIES: "Let me start by saying I have Raynaud's which has always made the cold unbearable for me. Coldscreen works extremely well, I couldn't believe how little product warmed me up so quickly. Overall would recommend to a friend!" Kristina B. Thanks very much for the review Kristina ☺️ #uthermic #coldscreen #inspiredbywarmth
257 7
1st day on the Hill. Hoping these heated socks from @thermickeepwarm keep Raynauds at bay. #cormeyeur #reynauds #ski#ski #ski #mountainlifestyle
27 2
It’s time for hot tea again!! Today was the first day I really just wanted a hot beverage this season...good ol’ San Diego is cooling off...a little 😄 . My #lemonginger quote for today is LEGIT!!! Whether you’re happy or angry, enthusiastic or anxiety ridden, you’re expending energy! Wouldn’t you rather use that energy to build, not destroy? Build yourself, build your career, build your family, build your bank account 😎, build your friend circle? Build up others?!?! Doesn’t that feel better than leaving a trail of 💩 behind you as you go through your day? Just something to think about...😊 . . . #yogitea #yogiteaquotes #winterinsandiego #lemongingertea #energyboost #happyenergy #buildyourdreams #buildyourempire #winterweather #reynauds #gingertea #hotdrinks #goodquotes #positivethinking #controlyourthoughts #healthydrink #nocaffeine #caffeinefree #nightcap #coffeemugoftheday
79 19
Got a @fitbit Alta HR to help me pace myself better. My HR raised about 15 bpm just walking to get 2 Cuties from the kitchen. Gotta love POTS. 15 isn’t too bad, but I’m not wanting it to go much higher. Once this neverending headache goes away I’m going to try some pacing stuff I found. #myalgicencephalomyelitis #POTS #dysautonomia #EDS #CFS #fitbit #heartrate #chr#chronicfatiguerome #chronicfatigue #fibromyalgia #bedridden #bedbound #zebra #spoonie #reynauds #chronicpain #millionsmissing
41 5
If you've ever seen Spaceballs, you know the scene in talking about. Came back from Maryland, and the first night back at home I'm sick on top of #eds and my other #chr#chronicillnesses. Been running fevers as high as almost 102, and feel like crap. #butyoudontlooksick #chastity #chronicpain #chronicfatigue #chronicillness #dysphagia #dysautonomia #ehlersdanlos #ehlersdanlossyndrome #gerd #invisibleillness #inflammation #mcas #mcad #mastcell #neckpain #nervepain #occipitalneuralgia #reynauds #spoonie #tmj #zebrastrong #tetheredcord
39 1
Hi friends!👋🏻 So I learned something new in the past few days. How many of my fellow MSers know about/have experience with the #MShug? I'd heard the term before in conjunction with rightness in the rib/rib pain but I did not know it can occur in your head too!🤔 I had experienced this tightness him my head a few times, the way I tried to describe it to my mom was almost Ike my brain felt like it was pushing on the interior of my skull as if it was "too big to fit." Obviously knowing my brain pains weren't due to too much intelligence flooding into my brain 😂😂 I just could fathom why this would happen. So I started reading and I saw all these articles about the MS hug and the head/brain. It's always kind of nice when you can finally make sense of something with all this craziness!😉 Also, I'm off to the eye doctors again today, but this time it's to get my trial contacts! 🙌🏻 I can't wait to test this out! Though I should have probably work waterproof mascara to avoid raccoon face from all the poking and prodding in my eye haha. I'll let you know how I fare with them. 😘 Lastly, if you swipe, I've added some pictures from wreath making and all my baking adventures from this weekend! 😊 It was SO much fun! I even added little craft paper hidden Mickey's in there because I just needed a little Disney in there. 😜♥️🎄 Until next time!! . . . . . . . . #msawareness #mswarrior #multplesclerosis #multiplesclerosisawareness #uctd #undifferentiatedconnectivetissuedisease #autoimmunedisease #autoimmunewarrior #reynauds #anemia #fatigue #warriorwoman #spoonielife #spooniegirl #bakingfanatic #amateurbaker #holidaybaking #christmascookies #appletart #roseappletart #fromscratch #instagood #holidayfun #familyfun #subnayfunday
40 3
Great life hack. We’ve slowly been making our house a bit smarter. First we added the @nest thermostat followed by outdoor camera. This week Jason added smart outlets & switches by @tplink in our bedroom. Every day I wish I could turn on/off the ceiling fan or bedroom light & most of the time I’m unable to make it those few steps to do it. It’s frustrating so I either have to bug Jason/Jenna or just deal with it until I have the energy. Now I can do it from my bed which has really been helpful. We put the bedside lamp on a plus so I don’t have to do party tricks to turn it on or off. They’re easy enough to do, but I’ve sprained my arm a few too many times doing it. Last, we added my SAD light on one. Since I don’t get outside a lot I can now use it to get the light I need. The thermostat has been so helpful to turn heat & air on/off and now with the camera I can see who is at the door or who has been at the door. Really, its showing how often cats walk in our yard. Being bedridden has so many pitfalls but I’m glad I’m living in an age where science can help. Of course I’m thankful for the man who does so much to help me out. #lifehacks #besthusbandever #bed#bedridden #nest #tplink #smarthouse #myalgicencephalomyelitis #POTS #dysautonomia #EDS #CFS #chr#chronicfatiguesyndrome #chronicfatigue #fibromyalgia #bedridden #bedbound #zebra #spoonie #reynauds #chronicpain #millionsmissing
38 1
Well here they are. Day 1 of the spoonie Christmas challenge. Still on my journey to finding answers. ICC, POP, Chiari, CCI, And MCAD are big suspects. #spo#spooniechristmaschallenge #awareness #zebra #Ehlersdanlossyndrome #EDS #hEDS #invisibleillness #hiddenillness #sjogrens #dysautonomia #osteoporosis #fibromyalgia #scoliosis #spoonie #butyoudontlooksick #chronicpain #pain #chronicpainwarrior #chronicillness
28 1
I've only survived the last two years without one cos David's a human hairy hot water bottle. 🔥 #nesh #reynauds #terriblecirculation
9 1
From scratch hot chocolate in a mug I painted myself. Please ignore my blue reynauds fingers. #introvertgoals #hotchocolate #stayingin #reynauds
5 0
Hi friends!👋🏻 So sorry for the absence of posts the past week, things have been so busy! As promised, you can swipe for a mixture of the apple pie and pecan pie cheesecake I made for Thanksgiving last week. Unfortunately I was not quick enough to get a nice slice photo. 😂 I have been noticing my tingles coming on a bit more in recent weeks. Right now movement quickly sends them away. I'm just hoping its holiday stress and not a flare, the last time I got the tingles in my feet, they went up to my knees and it would come and go every day for 3 months. 🤞🏻 In other news, I'm seeing a #Dermatologist now! She's WONDERFUL. She is so incredibly sweet and she is going to help my get to the bottom of these skin troubles I've been having due to my #UCTD I'll be back to see her in January for a biopsy. January is going to be busy! Dermatologist and Rheumatologist appointments as well as my first MRI post starting Copaxone and then a meeting with my Neurologist. 🤦🏻‍♀️ Hopefully all will be in fine working order 😉 One another non-medical note, this weekend is the first advent, so my mom and I will be making our annual advent wreaths this weekend! I can't wait! I always bake (yes, again... I know) we listen to German Christmas songs. Oh yes! I'm actually a dual citizen, I live in the US but I'm also German! 😊🇩🇪 I love German Christmas traditions and it's definitely helping me focus on fun with all this dumb skin stuff happening. 😉 I have to say though, once this holiday is over... I'll need to start exercising twice a day from baking overload 😂😳 What are some of your guys favorite holiday traditions and/or what keeps you cheerful when you hit an autoimmune bump in the road (flares of new symptoms)? Until next time!♥️ . . . . . . . . . . . . . . . . . . . . #ms #mswarrior #multiplesclerosis #autoimmunedisease #autoimmunewarrior #invisibleillness #chronicillness #chronicillnesswarrior #msadvocate #undifferentiatedconnectivetissuedisease #positivityfirst #keepmovingfoward #keepsmiling #reynauds #anemia #dermatology #rheumatology #neurology #instagood #chronicillnesscommunity
41 9
Coldscreen works in 3 specific stages: 1. Firstly by gently warming your skin layers as it moves through them.. 2. Slightly increasing your blood flow, bringing warm blood into the applied areas.. 3. As it dries on the top of your skin it is able to create an ultra-thin invisible layer to help maintain your naturally generated body heat that your muscles produce.  Oh yeah, it is also a high-quality moisturizer that is designed for cold, dry air as well...👍 Learn more at uthermic.com #uthermic #coldscreen #inspiredbywarmth
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If you can find the courage and drive to continuously put yourself out on the edge, there is one thing that you can be sure of -- no matter how uncomfortable you may feel at the time, you will most certainly grow each and every time... The more you show the more you grow!! Keep living this amazing life @blagrana! #uthermic #coldscreen #inspiredbywarmth
591 8
#spoonie life; spending your morning trying to get speech recognition to work on Microsoft but it doesn’t understand your Scottish accent 😓 - - - it’s currently colder in Scotland than Iceland and I’m struggling type. I thought I’d outwit #illness with voice recognition but ended up just angrily shouting “Manning not nailing! I’m sorry I don’t have RP!” #accentwoes #scottish #scottishaccent #recievedpronunciation #RP #reynauds #spoonielife #lupus #invisibleillness #butyoudontlooksick #arthritis #chronicpain #winterflares #flareday #ouch #disabilityawareness
28 1