You can never win

I really needed this today 💜 #Repost @thepotsiepanda ・・・ 💫Shout out to those who.. 🌈Have invisible symptoms 🌈Are battling a flare up right now 🌈Suffer from pain without diagnosis 🌈Are struggling with mental health 🌈Haven't found a treatment that works ❤You and your symptoms are valid. ❤You deserve to be heard. ❤I hope you find some relief soon. 📸Thankyou to the incredible @chronicverse for this amazing post. #ChronicShoutOut #ChronicIllness #HiddenIllnesses  #ChronicIllnessWarriors #InvisibleIllnessClub #ChronicIllnessAdvocate #InvisibleIllnessAwareness #DisabilityAdvocate #DisabilityAwareness #ChronicPain #ThisIsChronicIllness #ChronicPainWarrior #ChronicPainFlare #PotsWarrior #FibroFighter #ChronicPainFighter #FlareUpsSuck #Spoonie #SpoonieWarrior #LowOnSpoons (Image description: Set on a cream coloured background. The headline reads, SHOUT OUT TO THOSE WHO.. There are 5 images of different coloured rainbows that say different things. These are as follows, ●Dark pink, purple and light pink rainbow- have invisible symptoms. ●Pale blue, baby blue and grey rainbow- are battling a flare up right now. ●Pale orange, brown and dark orange- suffer from pain without diagnosis. ●Pale blue, lime green, darker green rainbow- a suffering with mental health. ●Purple, pink and light purple rainbow- haven't found a treatment that works yet. End of description.) https://www.instagram.com/p/CpApAYCu1Ut/?igshid=NGJjMDIxMWI=

*Ignore the socks and PJ’s* - But, as someone who uses crutches regularly, I have a few different ones - one being an open cuff design. Unlike the typical NHS crutches, you have to keep hold of these, where as with an NHS design crutch and others similar you can let go of the handle and let the crutch dangle from your arm using the cuff - this is great if you need that extra hand free to get something out of your bag for instance. —————————————— Anyway - back to the other crutch - the one with an open cuff, this design is great if you’ve got a big puffy jacket on but as mentioned, you can’t let go of it without propping it up somewhere first. So I decided to fix my problem in a funky and stylish way and I’ve created these straps. —————————————— They have an elasticated hoop that goes on to your crutch (or walking stick) and attached is a plastic link wristlet you slip over your hand before you grab the handle of your crutch or walking stick - I’ve also added some stylish charms, a bell to help being noticed easier and a spare keyring clip that you could attach keys or and ID to, perhaps a works pass or bus pass, whatever you like really! I’ve only made 5 so far in this style - there’s 5 colours to choose from. I will be making 5 more but in a different style perhaps using macrame for those who would prefer fabric to plastic. —————————————————— These will be up in the shop very soon priced at £9.50 - I also plan on doing a deal with a 2 pack at £18 on a made to order. As always there’s free personalisation on all my handmade keyrings/straps/chains/charms so if you’d like to add your name too for free I can pop that on in beaded letters (various colours to choose from). —————————————— #taintedcraft #disabilityaid #disabilityaidscanbepretty #crutcheslife #walkingstick #walkingstickswag #walkingsticks #disabilitypride #disabilitysupport #spoonie #spooniewarrior #spoonies #spooniecommunity #fibromyalgie #degenerativespinedisease #smallbusiness #ehlersdanlossyndrome #hypermobility #hypermobilitysyndrome #warrior #chronicillnesswarrior https://www.instagram.com/p/CqaKusGrUcB/?igshid=NGJjMDIxMWI=

Life is currently a dumpster fire...

Life is currently a dumpster fire…

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The Accidental New Profile Picture. 🔥 #redhairdontcare #genderqueer #irishpassion #trigeminalneuralgiawarrior #hydradenitissuppurativa #GreenEyes #trigeminalneuralgiaawareness #chronicpain #autoimmunedisease #sickandtiredofbeingsickandtired #spoonielife #butyoudontlooksick #invisibleillness #spooniewarrior #cptsd #mentalhealthwarrior #actuallyautistic #traumasurvivor #raredisease #chronicallyill #transisbeautiful #disabilitysupport #greeneyeliner #disabledandsexy #disabledmodel #fire www.hannahcrazyhawk.com (at Portland, Oregon) https://www.instagram.com/p/CliqyPoLYMv/?igshid=NGJjMDIxMWI=

At the moment, my pain seems to be off the charts most days, but despite this I have been in a quandary about whether or not to pop one of those little white pills. So often than not, the choice between pain or painkillers is.not an entirely easy decision to take. cramps, nausea and constipation, have kept me up on nights when I've taken them to help me sleep when the pain is so severe. Or sometimes, I've found that the painkillers have done nothing to take the edge off the severe disabling pain ravaging my back and legs. So often than not, the choice between pain or painkillers is not an entirely easy decision to take. #spoonie #spoonielife #spooniewarrior #spooniecommunity #spooniesisters #chronicillness #chronicillnesslife #chronicpain #chroniclife #chronicallyill #chronicallyillblogger #chronicillnessblogger #chronicpainblog #chronicpainblog #chronicpainsucks #painkillersdontwork #painkillers #chronicillnesswarrior #chronicpainwarrior #invisibleillness #neurologicaldisorder #neisvoid #wherethetiredgirlsare #FND #functionalneurologicaldisorder https://www.instagram.com/p/ClCNG5FtRMm/?igshid=NGJjMDIxMWI=

The view from my post surgical headquarters… not quite the epic pastoral scene with mountains and a herd of Mustangs… (but, while I’m recovering from foot surgery, that would probably be too tempting) I’ll call this my #spooniewarrior still life point of view as I wait for the bones to fuse #footsurgerysucks #healing https://www.instagram.com/p/CkXgK7-OtOl/?igshid=NGJjMDIxMWI=

Hair day so good that it needed to make the grid • • • #biracial #mixed #curlyhair #girlswithcurls #naturalcurls #curlspopping #curlsgoals #curlsofinstagram #curlyhairkillas #spooniewarrior #spooniestrong #spoonieblogger #cactusgram #disabledblogger #babewithamobilityaid #curlyhairday #foreverandever #mindsetreset #entrepreneurwoman #startyourownbusiness #businessmentor #chronicillnesses #smallbusinessowner #chronicillnesswarrior #chronicillnessblogger #smallbusinessshoutout #roseleecollective #peacesign4eva (at Curls&Confidence) https://www.instagram.com/p/CefHTerL5HM/?igshid=NGJjMDIxMWI=

Some days it's all well and good until you need to leave the house... #spooniewarrior #spoonie #spoonies #spooniehumor #spoonieawareness #spoonielife #spooniememes #spooniememe #spooniecommunity #chronicillnesslife #chronicillnesswarrior #chronicillnessawareness #chroniccondition #chronicdisease #autoimmunedisease #autoimmune #autoimmunewarrior #invisibledisability #invisibleillness #invisibleillnessawareness #invisibledisease #fatigue #chronicfatigue #chronicfatigueawareness #chronicillnesswarrior #handmadebycatkin (at Ngunnawal Country) https://www.instagram.com/p/CdN-U5qBGA3/?igshid=NGJjMDIxMWI=

A very late post for Fibromyalgia Awareness Day, 12th of May.

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.

Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.

____________

While today has been another great day on my holidayto France, the pain has been off the charts with every bone in my right foot and ankle feeling like they were broken. Sometimes it's my lower back, sometimes my shoulders, but often my hips, knees, and ankles.

When things are like this, I use crutches as it's impossible to put weight down with whatever foot or leg is in pain.

When I use crutches, it can be very hard to be independent.

For example, an inability to carry a glass of water to my seat, get in or out of a bathtub safely for a shower, or stand at a hob to make meals.

I can not allow myself to struggle as its exhausting and more painful. I have to ask for help, which, as many who know me will tell you, doesn't come easily or naturally to me.

Today my boyfriend has been getting me drinks and food, driving me less than 2 minutes down the road to the local restaurant we were eating at, helping me in and out of the bath, and reminding me to take my meds when the fibro fog has been at its worst. I hate to say it, but he's my carer. At 34 years old, I need someone to do the job I used to do for the elderly.

It's so difficult for me to depend on someone this way, but he's stepped up to a task he didn't even ask for, and does an amazing job. Even when I was married I didn't receive this level of respect and care.

Not all disabilities and illnesses are visible. I'm so glad I have someone like him to help me with mine when so many people struggle alone.

#spoonie #FibromyalgiaAwareness #fibromyalgia #SpoonieWarrior #UnpaidCarer #FibromyalgiaAwarenessDay

There is no winning

𝔹𝕣𝕖𝕒𝕜𝕚𝕟𝕘 𝕥𝕙𝕖 𝕤𝕥𝕚𝕘𝕞𝕒 𝕠𝕟 ℂ𝕙𝕣𝕠𝕟𝕚𝕔 𝕀𝕝𝕝𝕟𝕖𝕤𝕤 & 𝕄𝕖𝕟𝕥𝕒𝕝 ℍ𝕖𝕒𝕝𝕥𝕙💚

Brand new Blog coming very soon, in the mean time please join my safe space group (link on profile) for those with chronic illnesses and/or mental health. It’s a brand new group so work in progress but I wanted to create a safe space for people to connect with each other and have a place where people can empathise and understand each other. 🙏🏽❤️ #chronicillness #blog #group #spoonielife #chronicpain #disabilityawareness #mentalhealthawareness #healthandwellness #safespace #chronicillnessawareness #spooniesupport #spooniewarrior #breakingthestigma #youarenotalone ❤️

🙏🏼 PLEASE READ THIS: Hi Friends! We need to talk. ➡️ November is #crpsawarenessmonth so it's a chance for me to tell the World about this quite unknown but extremely painful disease. 🎗Most of you know that I am sick but I am not the only one in my family: my daughter suffers from CRPS also called Algodystrophy or #sudecksyndrome The letters CRPS stand for Complex Regional Pain Syndrome. ➡️ It is a rare and very painful disease that creates to a gradual muscle wasting, bone loss and local osteoporosis. It also causes severe burning pain or a very cold sensation due to pressure soreness and circulation disorders. It is SO Painful that it can leads to depression and even su!c!de 😥 ➡️ My daughter has CRPS since 2018 and she hardly can walk or stand for more than 5 minutes. Because it's a very unknown disease there's no treatment and I often heard doctors calling it somatic just like they did for Fibromyalgia or others invisible pains. But it is visible though!!! My daughter's foot is generally bright red & swollen. And just right now, she is hospitalized because it was too much for her. 🙏🏼Please Guys, help me and other people living with Algodystrophy by sharing this or posting an orange ribbon for #crpsmonth ❤And Thanks for Reading! It's easy to talk about myself but telling you about my child was quite difficult for me since she is alone in her hospital room while I'm feeling guilty leaving her...🕊 ❤ #crpsawareness #sdrc #crpswarrior #sickchild #unknownillness #crps #crpssucks #crpsfighter #invisibleillness #invisiblepain #chronicpain #spooniefamily #chronicdisease #raredisease #rareillness #invisibledisability #childwithdisability #disability #disabilityawareness #inclusion #chronicpaincommunity #chronicpainlife #spoonie #spoonielife #spooniewarrior #spooniesupport #childspoonie https://www.instagram.com/p/ClDAoYDKBPz/?igshid=NGJjMDIxMWI=

Life Sentence

sometimes my body feels more like a prisonthen it does an instrument for my mind. i feel trapped within it’s boundariestoo limited by the shattered confines. there are too many things I cannot do,too many places I cannot go.too many times I have to livewhen what I want to do is thrive. sometimes I watch the world through the bars,these everyday eyes in this routine face. i seep desire and…

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"You Got This!" I bring this @abundancewands to all my procedures and medical appointments. Today is procedure day. I spend so much time sitting in waiting rooms, I go crazy. It hurts. 💙 Having this tiny sparkly world in my hand helps me breathe and stim (an autistic self-soothing mechanism). ✨️ Thank you all for being friends to me and to those who have donated to my cause, you're helping me survive. Thank you. ➡️ www.gofundme.com/f/HelpHannahSoar ⬅️ (LINK IN BIO) #chemotherapysucks #chemosucks #sepsis #cellulitis #hydradenitissuppurativa #baldisbeautiful #sepsissurvivor #trigeminalneuralgiaawareness #chronicpain #autoimmunedisease #sickandtiredofbeingsickandtired #spoonielife #butyoudontlooksick #invisibleillness #spooniewarrior #spoonies #surgery #cptsd #stimming #mentalhealthwarrior #actuallyautistic #traumasurvivor #braintumor #gofundme #raredisease #chronicallyill #transisbeautiful #disabilitysupport #autisticpride #autismacceptance (at OHSU Knight Cancer Institute) https://www.instagram.com/p/ChaLA4SJwhX/?igshid=NGJjMDIxMWI=

When you spend so much of your time talking, writing, and posting about #chronicillness, you are accused of that being the only thing you talk about. So why do it? Because talking about is the only way to correct misinformation about our condition, or explain why we suddenly cancel plans or cannot participate in things. Or I may use to explain the strange quirks that help me to survive the onslaught of symptoms when out in the world. But it is incorrect to say that my chronic illness is all I ever talk about - I actually do talk about other things! I love talking about books, as like most people know I always have my head stuck inside a book. I am also passionate about TV and films, and regularly talk about the latest things I have enjoyed watching, or I talk about what is happening in the world as so many of us do. Yes, chronic illness is a huge part of my story and because of that it can be hard to not talk about it, but it is not my whole story and it is not all I talk about #spoonie #spooniewarrior #spoonielife #chronicillnessblogger #chronicillnesswarrier #chronicillnessawareness #chronicpain #chronicpainwarrior #chronicallyill #chronicallyillblogger #wherethetiredgirlsare #chroniclife #neisvoid #invisibleillness #neurologicaldisorder #FND #functionalneurologicaldisorder https://www.instagram.com/p/CfcLvlwsfWc/?igshid=NGJjMDIxMWI=