#MyalgicEncephalomyelitis

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💕Reposted from @the_migraine_life 💕- love this! I feel so bad about not being able to work and having to explain the reason why every time someone asks me “so what do you do?”. The feeling of being ashamed and judged for it and being made to feel lazy because of these judgments is yet another reason why living with an invisible chronic illness is so hard.🤦🏻‍♀️#yourachingart #unemployed #chronicillness #chronicillnesswarrior #chronicillnessawareness #chronicpain #chronicpainwarrior #chronicfatigue #chronicfatiguesyndrome #cfs #cfsawareness #myalgicencephalomyelitis #meawareness #chronicmigraines #chronicinsomnia #irritablebowelsyndrome #ibs #anxiety #deppression #spoonie #spoonielife #thoughts #feelings #emotions #exhausted #itsokaynottobeokay
Pyjamas and puppy snuggles. . . . . . Over the past month I’ve been able to go out once every weekish (only for an hour or so) and it’s given me so much more confidence in my health and my sense of self. #recovery #myalgicencephalomyelitis #goldenretriever #goodboy #puppysnuggles #chronicfatigue #chronicillness
19/6/2018 I found something funny / not funny at all.. These are illustrations from Danish "Functional disorders - handbook to patients".. Some "reasons" for #pwme to be sick and some "solutions" to get better.. We really need to get Per Fink out of medical world.. link in bio #furious #isthisajoke #wtf #prettypics #myalgicencephalomyelitis #mecfs #perfink #dangerousman
Today has been a busy day with photography, item listing in my new jewellery shop and visitors. All atop the increased pain I have because of the hormone treatment I'm on for oestrogen receptive breast cancer. So I'm flagging somewhat, and the lack of housework done proves it. The photo is a vintage tutorial for a macrame belt and is in my 10% sale until Friday. Find my shop link in my profile. #dorsetteam #etsy #etsysellersofinstagram #sale #etsyturns13 #macrame #vintagetutorial #belt #vintage #breastcancer #cancerwarrior #myalgicencephalomyelitis #chronicfatiguesyndrome #fibromyalgia
I finally got around to taking a picture after cutting my hair yesterday. I've been fairly camera avoidant these past few months and isolating, my apologies. It's just how I'm coping. I can't say I'm back in action just yet, as I'm still working on myself. Oh yeah, I did decide it was time to go #redhairdontcare . Why not? <~.^> #artistsoninstagram #authorsofinstagram #depression #chronicpain #chronicbadass #fibromyalgiaawareness #lupus #rheumatoidarthritis #autoimmunedisease #myalgicencephalomyelitis #dontstop #fightlikeagirl #lgbt #girlswithpiercings #girlswithink
My other half, sometimes my better half. My partner in the most beautiful days of my life and the most terrible. He inspires me, amazes me, pushes me. He makes me feel strong, beautiful & capable. We have built the kind of love that truly is unconditional. I am so grateful to have you by my side Justin, and be by your side for all of the moments, big and small. . But this one was pretty damn big, and pretty damn special. 💪🏻🏃🏻‍♂️#firsthalfmarathon #ithacahalfmarathon2018 #rootedrunning
Finally opened my amazing order from @theskinnysurvivalbox which got here super fast!!!📦🍫🍿🍬😍A whole box full of low syn treats & drinks which are all labelled up which saves you a massive job finding them all out individually! Everything always arrives so beautifully wrapped & I think this is such a fab idea as it lets you sample & try new products which are great for on the go snacking👌🏻📦I posted an unboxing video on my story highlights for you to see what I got!😍👍🏻⭐️💌 • • • #4stonedown #targetmember #club10 #slimmingworlduk #slimmingworld #slimmingblog #swmafiauk #weightlossprogress #swblog #foodoptimising #fooddiary #fitness #sw #swideas #swfriends #weightloss #weightlossjourney #swrecipe #swvegetarian #club10 #motivation #weightlossmotivation #strava #myalgicencephalomyelitis #me
Brunch today was baked oat waffles🍫😍Made using 40g oats (HExB), 1 WW Layered Blackberry Yogurt (1/2 a syn) & 1 egg all mixed together and poured into my silicone waffle mold cooked at 200 degrees for 30 minutes, topped with 1 tbsp of @sweetfreedomuk Choc Pot (2 syns), speedy frozen berries once baked!😍😍😍I also popped it in the microwave for a minute to melt the spread & defrost the fruit but not cook it👌🏻☺️So so good!!!🍫🍓🍽 • • • #4stonedown #targetmember #club10 #slimmingworlduk #slimmingworld #slimmingblog #swmafiauk #weightlossprogress #swblog #foodoptimising #fooddiary #fitness #sw #swideas #swfriends #weightloss #weightlossjourney #swrecipe #swvegetarian #club10 #motivation #weightlossmotivation #strava #myalgicencephalomyelitis #me #sweetfreedomuk #ad
Itku lyhyestä ilosta. Eilinen oli taas kerran liikaa. Eipä auta, kun levätä ja levätä. PEM päällä niin, että korvissa soi. #myalgicencephalomyelitis #postexertionalmalaise #pem #ihatethis #sosick #lepo
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🌿• nature therapy •🌿 . Stepping outside in the garden for 10 minuets and sitting on the grown, bare feet in the grass, focusing on my breath and feeling soothed and peaceful surrounded by nature! . #fern #fernleaf #nature #naturetherapy #green #peacefulmoments #momentsofmine #livethelittlethings #meditation #breathe #flashesofdelight #thahappynow #housebound #chronicillness #chronicpain #fibromyalgia #myalgicencephalomyelitis #mecfs #annasroadtorecovery
Healing isn’t easy Healing isn’t quick Healing isn’t pretty Healing isn’t a straight journey Healing isn’t just one thing Healing doesn’t come with instructions Healing isn’t just wishing Healing isn’t a magic pill Healing isn’t just going to happen Healing isn’t always going to go the way you want or thought ✨ Healing is discovering yourself Healing is a lifetime journey Healing is steps of different wellness Healing is self love Healing is compassion Healing is gratitude Healing is being open minded Healing is letting go Healing is listening to your body Healing is working through the darkness Healing is working mind, body and spirit Healing is finding the joy Healing is finding YOU #mecfs #myalgicencephalomyelitis #wellbeing #cfswarrior #chronicfatigue #chronicfatiguesyndrome #spoonieyoga #spoonielife #healing
Was catching my aunty up about what's been going on in life and a lady at another table, in the St Michael's cafe in Leominster and she wrote this note that a lady who worked at the cafe handed me. It's absolutely made my day. I cried a little. Encouragement from a total stranger by means of writing on a napkin is the sweetest experience I've had. I am grateful for her today as I have needed a boost. A kind stranger has made my day, now I hope to pass it on. Show a little love and empathy, you could truly save a life. #kindacts #kindness #spreadlove #hope #goodpeople #chronicillness #chronicallyill #chronicpain #chronicmigraine #ME #myalgicencephalomyelitis #chiarimalformation #mentalillness #mentallyill #mentalhealth #anxiety #depression #PTSD #CPTSD
I don't want to go to the hospital to talk about how crap the last few months have been, I don't want the delving personal questions about 'how' I feel I could of done better.... That's what your for doctor lady... Tell me how I can be doing this better! 😑😐🤨 . . . #me #selfie #selfiestagram #selflove #purplehair #purplehairdontcare #fibromyalgia #fibro #chronicillness #chronicpain #fatigue #myalgicencephalomyelitis #invisableillness #butyoudontlooksick #hypermobility #hypermobilitysyndrome #anxiety #fibrowarrior #bodyhurts #itsalltomuch #anxietyisacunt
Sorry I’ve not posted properly recently. Not quite in the land of the living atm. But I’ve been reading about Nefopam - just checking drug interactions with my other meds. And I read on the internet, that it’s not a narcotic, but they’re not sure how it works as a painkiller. But it has been seen to be effective for chronic pain, however there have been no long term studies of this drug. So there are no known long term side effects. I was switched onto this one as I was on naproxen which caused me to have a stomach bleed. Has anyone had any experience of nefopam? Or know much about it? - btw I do trust my doctor, I just need to have all the information I can on these things. For peace of mind. #chronicillnesscommunity #invisibleillness #chronicpain #chronicillness #chronicallyill #chronicpainwarrior #ehlerdanlossyndrome #spoonieproblems #hypermobility #spooniecommunity #spoonielife #dysautonomia #zebrastrong #myalgicencephalomyelitis
Today I got a letter saying I need a face-to-face interview for PIP. It was expected. There's nothing quite like having to tell a stranger all of the things you can't do, then having them lie on a form and give you 0 points. If that happens, I have no savings. My carers will be doing it with me. This is the reality. Hoping it'll go in my favour 🤞🏻(also, why do all PIP assessments take place so early? 💤)
*Mindfulness* Does anyone have any tips on practising mindfulness/meditation? I find it really hit and miss, and get quite frustrated. My mind just will not relax, I'll be okay for a minute or so then it just wanders off in it's own little world. Before I got ill I practiced yoga daily and ran when I was stressed and that was my kind of meditation. But obviously I can't do that anymore. I just get so frustrated with it and end up more wound up than when I started! I've always been the same though, I used to drive my Mum mad with questions (I still do sometimes 🙊), and then my science teachers and classmates despaired of my incessant questions. My brain just likes to work, which probably hasn't helped my situation, I need to learn how to relax it. Any help would be much appreciated 🙏🏻 #theremustbelittlepeopleracingaroundinmybrain #severeme #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #chronicillness #fibromyalgia #spoonie
• 250,000 #mecfs Sufferers in UK • • only 5% recover • • 25% housebound • • Lowest quality of life among all diseases tested • • No effective treatment • • UK GOV FUNDING DECREASING • #mecfscrisis #facts @meactnet #meawareness • • • • • #MyalgicE #meadvocacy #cfsme #cfs #chronicfatigue #chronicpain #chronicillness #chronicillnesslife #butyoudontlooksick #Invisibleillness #autoimmunedisease #myalgicencephalomyelitis #actionforME #millionsmissing #missingbutnolongersilent #spoonie #spooniesupport
New plant friend to add to my ever expanding indoor jungle. And I got to use the carboard I bought last week for a plain photo background.  Following on from mentioning the #SomeNonNone approach I shared in yesterday's post. Today I read a novel for 5 minutes a couple of times through the day and looked up a cookie recipe I want to make. I can feel a bit disheartened when there are 100's of things I want to bake and that there isn't enough energy to make baking a priority. / But I decided #SomeNotNone and will aim to bake once a month. I narrowed it down to biscuits as they last well so I can enjoy them on many days rather than a desert or cake that is best eaten that day. And one category (biscuits) is easier to just to choose the type of biscuit to make next not choose from all my baking ideas. / First will be peanut cookies made at Chinese new year by my Malaysian friend. Let me know if you want the link to her recipe. / I am sharing this story in detail so you can think about where #SomeNotNone might brighten your life. I'd love to hear your thoughts. / My baking plan also makes use of #TinyTasks . Today a task was finding the recipe on my friends blog. Then there are other tasks that can be done days ahead of baking. Roasting the raw peanuts. Measuring out dry ingredients. Getting out the utensils that won't be missed for other cooking etc. I even plan to make the dough and put it in the fridge to bake them the next day. / Breaking it up means when I make the dough it will be quicker and have far fewer steps and need less Spoons. The preparation tasks should sneak into the days before without having too bigger impact on my energy. / Lots of love and energy to you all, I hope today your body and mind are kind to you ❤Claire xoxox / Tag a friend who would enjoy my account and this post 💗. / Come visit me at www.chroniclifehacks.com for ideas to make your days with chronic illness more enjoyable. Link in bio
Today we had to say goodbye to our precious fur baby Buffy. The most loving and gentle doggo you could ever meet. I wasn't going to post about this on here but I know many of you understand how important and helpful our fur babies are while we are struggling with our health. They're always there for you through it all. It's definitely going to be hard but I know he is now in a better place. I love you Buffy and I'll never forget you ❤🐾
There is a debate in parliament on ME/CFS this Thursday 21st June. Please urge your MP to attend! I've already sent my email. We desperately need research! #meaction #mecfs #mecfsawareness #medebate #myalgicencephalopathy #myalgicencephalomyelitis #chronicfatiguesyndrome #chronicillness #politicalactivism #catherinewest #catherinewestmp
I wanted to share today's blog post.💻 I talk about body image and struggling with self-esteem when you have a Chronic Illness in my case it's M.E/CFS, it impacts massively on how I feel about my body. Learning to embrace the perfect imperfections that make me, me will take time. Click the link in my bio to read the blog post. Do you struggle with your body image or confidence? #spoonie #chronicillnessbloggers #chronicillness #chronicillnessblog #selfimage #bodyconfidence #perfectimperfections #ontheblogtoday #bloggergirl #disability #wedonttalkaboutthis #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #chronicinsta #honestyiskey #invisibleillness #timeforchanges
I’ve voted & I’m in UK 🇬🇧 so I think voting is open worldwide 🙌🏻Let’s show some support for the amazing Unrest! Read the details from @meactnet below & I’ll pop a direct link in my bio ⬆️⬆️ #Repost @meactnet ・・・ We are thrilled to announce that Unrest is in the running for the 2017-18 Independent Lens Audience Award! It was an honor to have Unrest premiere on PBS | Independent Lens this past January and it would mean the world to us if we could count on your support for this award-- after all, this film was especially made to serve audiences like you. Voting for the Audience Award opens today Monday, June 18th and ends on Friday, June, 29th, 2018 at 1 PM Pacific Standard Time. Cast your vote now! http://www.pbs.org/independentlens/blog/2017-18-independent-lens-audience-award-survey/ [Will DM the direct link upon request!] If you found solace in watching Unrest, if you felt seen, if Unrestmoved you or your friends, family, neighbors to greater understanding and empathy, please vote and encourage others to vote as well. Winning this award would mean renewed interest in Unrest and therefore, further visibility for Myalgic Encephalomyelitis. Let’s keep elevating ME every chance we get until the neglect and stigma are gone for good. Let’s make some noise for ME! #timeforunrest #millionsmissing #ME #meaction #may12 #millonesausentes #endmecfs #solidarity #healthequity #endthestigma @pbs @independentlens • • • • • #chronicillnesscommunity #MyalgicE #mecfs #meadvocacy #cfsme #cfs #chronicfatigue #chronicpain #chronicillness #Invisibleillness #autoimmunedisease #myalgicencephalomyelitis #missingbutnolongersilent #spoonie #spooniesupport
🌟Sailormoon lightbulb! Haha!🌙 #Stariadreamtea Have day surgery first thing tomorrow. Have had about 6-8 of them for different reasons over my life due to an immune disorder. (That's all I want to say about it. I want to let people know some of the realities of being me, but I don't want to dwell on the details.) I've finally stopped panicking and only mildly fretting lately. Going to have some Chamomile tea. ☕ I know and trust this team. 👍 Telling them I have PTSD really helped. I thought people would treat me worse, but turns out people are much more consoling and patient with your anxieties once they know what's up. I have a feeling my recovery will be speedy. With my condition sometimes I can be stuck in bed for 4 days afterwards, but last time I was only stuck in bed for 2! So looks like I'm doing just fine. 🌈 ☁Did you know you don't dream while under anesthetic? ☁Nope. It's just like a jump cut and you're like: "oh did they finish already" #psychictype #psychemyselfup #epstienbarr #handreveal #sailormoon #spoonielife #moonprismpower #lavenderkei #spooniewarrior #chamomiletea #highlysensitiveperson #infpthings #recoveryfromcptsd #cptsdrecovery #vaporwave #star #sailormoontransformation #toycollector #lenseflare #yumekawaii #night #lightbulb #yume #cptsd #ptsd #lightlight #fairykei #moon #myalgicencephalomyelitis
I hate the way my eyebrow curves and my eyes are too small, but I’m trying to get ahold of that thing called body positivity! Newish makeup. Newish hair. Still wearing baggy jumpers and dresses but maybe that will come later 🙈🙈🙈 I’m trying! #silverhair #purplehair #acceptance #myalgicencephalomyelitis #cfs #cfsrecovery #anorexiarecovery #fuckana #bulimiarecovery #edrecovery #bodypositive #positivevibes #bodypositivity #bodyposi #mecfs #makeup #soapandglory @soapandglory
Recently my health hasn’t been the best so I’ve been having to rest more and do a lot less than normal. I always want to do more than I can so when I’m forced to rest I find myself feeling guilty and wanting to do something. So I’ve been doing more self care. Self care is so important. No matter if you are healthy, feeling well, or unwell. It’s good for you!! Taking care of yourself is so important for your mental health and that can help your physical health. I’ve been doing a lot more face masks than normal. Painting my nails, it tricks my mind into thinking I’m doing something active and I don’t feel guilty for sitting. When I take a bath I treat myself to more bath bombs or extra bubbles. Putting on a little lipstick or mascara also counts as self care. Brushing your hair out or washing it will leave you feeling better. Self care isn’t just about what you do on the outside, it’s what you do on the inside. It’s eating healthy, but letting yourself have treats. It’s taking vitamins to help your body. Drinking water. Having tea. Its getting enough sleep! Making sure you get fresh air! Opening the curtains in your bedroom and in the living room. If your struggling with your health or not, make sure you are taking care of yourself. Your body and soul deserves care, you can only give it.
Sharing a page from one of the mini conversations in my book 👆🏻 #iseeinwords . • I’m pretty sure you’ll relate (and I’m talking more on this topic over on stories today) to feeling invisible, stuck and unfulfilled when living with long term illness. // How it truly aches to have such used and wasted potential within you - bursting to come out. // I hear you. I felt it too. But I did find a way - a new way - through writing and expression. 👆🏻And it’s helped 🙏 // I’m not ashamed to say how proud I am of my book. 💫 • #health #chronicillness #invisibleillness #mindfulness #writerofinstagram #authorsofinstagram #instapoetry #instablog #spoonie #lyme #myalgicencephalomyelitis #thyroid #autoimmunedisease #adrenalfatigue #creativity #purpose #passion #anewway #grateful #millionsmissing
Back on the green stuff today 🌿. Not feeling great today, which I find really hard to say because I don't want to feel crap and I don't want people to judge me. I have a chronic illness that I'm working on healing, but I've spent a long time, especially the last year, pushing myself too far and I knew I'd have to pay for it now. The next few months will be about me healing my own health before I can help other people. #vegan #vegetarian #freefrom #coeliac #celeryjuice #medicalmedium #chronicfatiguesyndrome #myalgicencephalomyelitis #chronicillness #healingwithfood #nutritious #hydration #organicsodium #celeryjuice #electrolytes #freshjuice #plantsarepowerful #healingwithfood
And my body says, no. 😴 So my new plodding pacing regime hasn't got off to the best start. I've woken this morning feeling more fatigued than usual and my heart rate is laboured. So I guess plodding two days in a row will have to wait for now. I'm resting up, treating myself to a lovely bubble bath and being kind to my body. It's pointless getting angry and frustrated. My body will do what it needs to do regardless of how angry I get! 😉 Besides, the day is still young. I might perk up later and will be able to manage my plod then. Or maybe I'll start it later in the week? I'll get there when I'm meant to.✨💗 #MEcfs #myalgicencephalomyelitis #Spoonie #SpoonieLife #ChronicIllness #MillionsMissing #Mindfulness #Pacing #RestUp #Bubblebathjoy
If you go onto the @meactnet page you can read the poem attached to this that my mum wrote for everyone suffering from chronic illness 💛⛵ #Repost @meactnet ・・・ From the MeActionNetwork Australia photo album (see previous post). @millionsmissingaus @dantehan @the_racgp #CanYouSeeMeNow #myalgicencephalomyelitis #pwme #solidarity #healthequity #timeforunrest #sciencebasedmedicine #medicalresearch #may12 #Australia
Indulgence? Absolutely not!!! Well, even if it is, you do deserve it and you are worth it!! Today I’m doing just this. I’m getting my eyelashes done while a very kind relative looks after the baby then I’m sure we’ll spend hours chatting about nonsense 😀 If this is the kind of thing you enjoy then do it!!! Work out your budget and go for it. Even if it’s just a mini manicure once a year - do it! Treat yourself and enjoy it. This is great for your confidence and general #wellbeing in addition to providing a bit of relaxing time out. All of these are big ticks on the #wellness front. #healthylifestyle #healthy #balance #mindfulness #mindful #mindfuleating #healthymindset #mentalhealth #mentalhealthrecovery #mentalhealthawareness #anxiety #depression #recovery #relaxation #selfcare #fitmum #healthymum #chronicfatigue #cfs #chronicfatiguesyndrome #myalgicencephalomyelitis #spoonie #journeytowellness
@bruce.carole takes the most wonderful photographs from her bedside; often appearing abstract, until you take a closer glance 💐 I think they are so beautiful and it takes such imagination 🌈 Carole also uses her images to capture her feelings/the realities of her chronic illness, ME, and in the process raises awareness of the condition. Go Carole!
Once upon a time someone loved me more than I ever expected..... There's something tragically beautiful in moments of crisis that brings on a new level of love in a relationship. The Doctor said she could see it, my therapist said she could feel it. It's falling in love again; on a level only a crisis can bring. What I've learnt is this: a mans love isn't what we were lead to believe. Period. It wasn't Disney movie grand gestures and totally over the top declarations of love, with a happily ever after....*if you're at your best only* - no; the reality of a mans love - especially when one becomes ill - a man's love for his lady; is far different and much, much deeper. It is washing his ladies body, wiping her arse and still telling her she's the sexiest women around. It's picking her up off the floor - literally - holding her up while she cries and wobbles along the hallway at 3am - watching her fall apart because all she wanted to do was wash her filthy hair - and then, still making love to her and making her feel insanely attractive (filthy hair and all). It's worryingly watching her roll around in pain all night; and silently holding her while she cries in his arms - and still sees her as his beautiful strong women, and not the fragile child that she thinks she has become. It's seeing her in the most unflattering and embarrassing situations and still climbing into bed with her just to hold and kiss her. And a man who loves his women would do anything to see that smile, even if it's just a glimpse. Loving is hard work at times, loving someone sick? Absolutely intense. But if you asked this man; completely worth it. . . . #declarationoflove #male #king #appreciationpost #love #insicknessandinhealth #chronicfatigue #potsie #EDS #disabilityawarness #disabled #autoimmunewarrior #connectivetissue #ankylosingspondylitis #fighter #fibromyalgia #lupus #myalgicencephalomyelitis #pwme #carer #carersweek2018 #ilovemyfamily #ilovemyman
Did you know that I along with 3 other girls once raised over $2.5 million dollars for charity using just these spicy things We started the Chilli ME Challenge which took off like the ice bucket challenge to raise money for research into and awareness for Myalgic Encephalomyelitis or ME or as some of you may know it stupidly called Chronic fatigue syndrome It is something I'll be proud of until the day I die and goes to show with just sheer determination what you can achieve just from your bedroom.  So if you are feeling I could never do that just think of these little chillies and give it a go. You will never know if you don't at least try. What achievement are you most proud of? #allaboutRosaLilla
My breakfast this morning wasn’t particularly nice... I put too much coffee and salted caramel flavouring in it. I was going to do it again but I didn’t want to waste all that almond milk 😂 Then I remembered that food is fuel and calories are not wasted because they allow you to function. I feel like my whole day is thrown off, but it’s not 😊 it doesn’t change it in any way. It’s okay, food isn’t going anywhere! I can eat something I really fancy for lunch, which I have a feeling you guys will appreciate 😍 I’m off for a neurology appointment and we’re going to BOTTELINOS for lunch! For those who don’t know, it is an Italian restaurant which serve the most AMAZING pizzas the size of flying saucers for like.. a fiver! There used to be one near where I lived but it closed down, but the hospital has one 20 mins away so we’re popping there first 🤓 So grateful that my body is feeling a bit better recently #myalgicencephalomyelitis #vegansofig #vegans #vegan #cfs #chronicfatiguesyndrome #chronicillness #recovery #fibromyalgia #anorexiarecovery #edrecovery #bulimiarecovery #anawho #fuckana #porridge
Lovin my new red hair and yes, I look okay but in reality my smile masks the huge pain that I am in. My tinted glasses are helping my head that feels like my brain is trying to force its way out of my head because of the inflammation that I get all over my body. And it took me a hour for my body to be able to move this morning. This is because I have both fibromyalgia and M.E. This is my life, I do this everyday and it’s time to stop hiding and start being awareness. #livingwithfibromyalgia #mecfs #missingmillions #myalgicencephalomyelitis #invisableillness #awarenessmatters
Literally the lowest my heart rate has been in the last few days. So much stress and anxiety has been lifted, and I’m finally able to rest. Now to get all the physical symptoms under control! . . #posturalorthostatictachycardiasyndrome #pots #dysautonomia #dysautonomialife #chronicillness #chronicillnesslife #chronicillnesswarrior #spoonielife #spooniewarrior #chronicfatiguesyndrome #myalgicencephalomyelitis #fitbit #fitbitcharge2 #heartrate #heartratemonitor #tachycardia
Mega pupil! Home from the Eye & Ear Hospital, and utterly wrecked. I have a relatively clean bill of health, and am home tucked up in bed. Rest, rest, and more rest.... until I have to see my GP on Friday! . . #dilatedpupils #dilatedpupil #pseudopapilledema #papilledema #chronicillness #chronicillnesslife #chronicillnesswarrior #spoonie #spoonielife #spooniewarrior #spoonieproblems #chronicfatiguesyndrome #myalgicencephalomyelitis #mecfs #dysautonomia #dysautonomialife #posturalorthostatictachycardiasyndrome #pots #rest #nevergettingup
One of my biggest supporters turns 30 today! My younger sister Sophie. 💗 Always beautiful, always organised & always has it together! Thank you for holding me up when I feel like I’m going to fall. Thank you for always being there for me & making my journey through recovery that little bit easier. Couldn’t ask for a better sister or friend, You are one in a million & deserve the world! Happiest birthday wishes! Hope your day is as special as you are 😘💗💛 . . . . #sisters #sisterlove #myalgicencephalomyelitis #chronicfatiguesyndrome #recovery #support #family #friends
Today's reminder
Spoonie tip! Put on a towelling gown after bathing or showering and you can lie down straight away without waiting to dry yourself. Does anyone else do this? I always need a lie down after washing and skipping drying myself helps me recover some energy more quickly - it can also stop me fainting! The bright pink also makes me smile 😀 #spoonietip #chronicillness #chronicillnesswarrior #spoonie #myalgicencephalomyelitis #m .e. #pots #dysautonomia #Endometriosis #spoonielife #chronicillnesslife #cfs
The unknown can be terrifying. I think that's why in many ways, Chronic Illness can be harder than many others. The constant changes, the unpredictability and the mystery if it's progression or regression. . Not knowing what will come on any day or at any moment can be enough to paralyze me or keep me awake all night. Wondering what the next day will bring or whether the next step I take will be the better, or for the worst. . Everything is a guess. And in everything I do, I have to trust in things I cannot see to help me get to a place that I'm not sure even where or what it is. . It's all an exercise in complete faith. And following faith can be downright terrifying sometimes. Because it is human nature to want to be in control, to want to make the choices, to analyse, to collate and form a plan of action. . But in these Chronic Illnesses, patients are forced to put our lives in other peoples hands, to let go of our own demand and need to control and to at some point, trust that something can work and that something can change. . Because I think control is nothing but an illusion. Something our brain makes up to make us feel like things are under control. But to me, the need to control, the need to analyse, and the need to micro-manage our body with our thoughts, can often just lead to more stress, more confusion and more pain. . I sometimes wonder if instead of hunting and analysing and obsessing over what's wrong and trying to go from this and that, and only causing stress and disappointment... If maybe it's not our job to analyse and obsess. . Maybe our job is to let go of the illusion of control, of the obsession with micro-managing our body... Maybe our job is to simply shut up our brain and get it out of the way, to allow the body what it does naturally: HEAL. Without the constant interruption and obsession with the need to control. . I truly believe this. Winding back the brain and it's need to be in control, which it never is, is the key to getting it out of our bodies way and being far better off. I can't heal by trying to control, by getting in the way constantly. I can only heal by letting go my imaginary control, and trusting in my path.
Depressed ✔️ Doesn't receive texts from "friends" unless someone is bored ✔️ Permanently shackled with a debilitating illness(es) the medical community and laymen know little about ✔️ Forever alone and permanently the side hoe since my ugly, crippled ass is unlovable ✔️🎶 Tired of feelin' like I'm trapped in my damn mind, tired of feelin' like I'm wrapped in a damn lie, tired of feelin' like my life is a damn game 🎶 . . . #cfs #cfsme #fibro #fibromyalgia #pots #dysautonomia #gastroparesis #spoonie #spoonies #chronicillness #mentalillness #chronicpain #lyme #lymedisease #myalgicencephalomyelitis #millionsmissing #chronicillnesswarrior #chronicallyfabulous #autoimmunedisease #chronicallyawesome #timeforunrest #disability
Softest. Blanket. Ever. 🤗🛌
I'm taking some time off to reset, focus on my health and channel my energy into writing. I had always been driven, fuelled by success and onto my next project - never looking back before I became ill. Having an illness has slowed me. But I have this simmering energy within wanting to create, inspire and bring hope. Sometimes I get bogged down by the daily, what seems like chores, just to keep afloat and I lose sight of what I want (asides from recovering.) Challenging, questioning and being curious is healthy and also unnerving. It can be unpleasant but also grounding and comforting - even eye opening. I have an illness, but from this I started to write, not essays, but prose from the heart. I made a promise to someone very close to me that I would pursue my love of good food and words. Words that come clearly from my usual muddied thoughts. It's time. It's time because we are not promised each day and the next. ME/CFS does not protect me from the next disease or crippled cell. To live each day with passion and soul. Gratitude, grace and love. These should be played like an empowering song, lilting and humming all day long. A reminder. A gentle push. To live well. Each day is unique. Beautiful. Bold. Joyful. Painful. And Hopeful. Don't lose sight of what you want. If you healed tomorrow, what would you do? Take steps. Small steps. And keep taking them until you get there. 🙏💙 . . . . . . . . . . . . . . #writer #writersofinstagram #writingcommunity #words #chronicfatigue #chronicillness #invisibleillness #chronicpain #mecfs #spoonie #myalgicencephalomyelitis #autoimmunedisease #healing #hope #mindfulness #mindbodysoul #breathe #wellness #intentions #goals #selflove #smallsteps #gratitude #naturephotography #blackandwhitephotography #raindrops
New post on the blog about Fairness, Self-Care and finding safe compromises - The idea of regulating my symptoms and trying to manage my disease with the input of others makes me extremely uncomfortable. It isn’t something that we talk about much, particularly in the vernacular of activism. Self-advocacy is key, self-care is the pinnacle. However, in the world sometimes those standards are shifted slightly. In an ideal world, compromise and fairness wouldn’t be a concern. I would be ill and because of that not-so-simple fact, I would be able to make the choices that preserve my health and say screw it to everything else. In my experience, however, I also factor in that I am lucky enough to have the option of finding balance. Because of that, and in order to maintain this aspect of my life that is just as critical as my physical health, compromise is key. But where is the tipping point? - Read more at the link in my bio. (Image by Ryan Kapp, “Outside In,” oil on canvas, 2004.) #chronicillness #spoonie #spoonielife #cfs #myalgicencephalomyelitis #disability #disabilityawareness #invisibleillness #chronicfatiguesyndrome
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