Trying to find beauty in the little things. • #sickofbeingsick #chronicillness #fibromyalgia #myalgicencephalomyelitis #cfs #unrest
5 3
..in the interests of me awareness! . . My ME is very very mild at the moment (hopefully disappearing!) so I feel like I’m a bad representative of how bad it can be for people. BUT I haven’t always felt as well as I do now. . . Thank you for posting it @yoga_mybed_and_m.e . Hope you don’t mind the repost!
3 1
A cannot keep my eyes open kinda day. I even drifted off on the loo when I went for a pee earlier this morning 🙈😂 needless to say my body obviously wants rest today. #tiredgirl #mecfs #myalgicencephalomyelitis #fibromyalgia #spoonie #chronicillness #mylife #bedday
3 0
Made this almond & apple cake for my mum’s birthday yesterday. Absolutely shattered today but seeing how happy she was when I gave it to her was worth it ☺️☺️☺️. No guilt with this PEM.
7 1
I think (and I sincerely hope) that my new approach to how much I do is paying off. Yesterday was another day with almost no pain at all and I feel good this morning. I’m sleeping more than I ever have but hey, if I need it, I’ll take it. Let’s hope this good spell continues! #cfs#cfsa> #cfs #mecfs #myalgicencephalomyelitis #spoonie #spoonielife #bujo #bulletjournal #bulletjournaling #bujospread #healthtracker #sleeptracker #cfswarrior #mewarrior #livethelittlethings
22 0
Foto från morgonens hundpromenad. Sol i uppgång, kallt -7 grader och blå himmel. Det där härliga knastret under fötterna och dag i uppvaknande. Känslan av vintrig berusning får följa mig genom dagen. Önskar er Alla en fin dag efter bästa förmåga 🙋 #vin#vinter/a> #vinter #svmecfs #myalgicencephalomyelitis #myalgiskencefalomyelit #mewarrior #mecfs#hundpromenad#hund#foto #februari2018
12 2
Day 7 and the last day, of my #simplysevendays challenge, created by the lovely @sim@simplyselflove_ , is GRATITUDE. . . I am grateful to be moving past a place where I associate gratitude with “grateful to” and not “grateful for” (never let anyone use the term gratitude to push you down my friends) . I mindfully appreciate being able to get out of bed each morning, to be able to cook and to go outside. I am privileged that I can enjoy “icing on the cake moments” beyond that level but I will never lose the perspective that this experience has afforded me Thank you to @simplyselflove_ for this wonderful set of prompts which has kept me aligned this week xxx . . #gradedactivity #newme #healthjourney #merecovery #chronicfatiguesyndrome #positivity #sel#selfesteem #mecfs #mya#myalgicehalomyelitis #recovery #fabulous #happy #gratitude #myalgice #art #lifegivesyoulemons #lifegoeson #selfesteem #trauma #ptsd #burnout
12 0
Ughhhhhhhhh😢😓😩 I have been up and down changing my Pjs over and over because of night sweats 😠 I have the worst pain all through my head (probably because I’ve sweated out all the water in my body so now I’m dehydrated 🙄) and my body is so weak and I overall feel so rough. Also experiencing a burning sensation through my body, especially hands and feet? My cheeks are bright red and I’m burning up but I’m cold and as previously mentioned, sweating like crazy. Yes, this is gross. But I’ve been through worse and I have no shame🤷🏼‍♀️😂 So yeah, this is me right now. Damp hair and pjs included. . . #myalgicencephalomyelitis #cfs #fibromyalgia #fibrowarrior #raynauds #nightsweats #sooverthis #feelsorough #feelingsorryformyself #headache #dehydrated #chronicpain #chronicillness #autoimmune #invisibleillnessawareness
24 1
These beauties cheering me up on a rough day! 2 hours, and 2 trolleys of grocery shopping, yesterday, for my family that includeds 2 insatiable teenagers!!!! PEM starting today.... 😔 #chronicillness #daylillies #fibromyalgia #invisibleillness #lillies #postexertionalmalaise #mecfs #myalgicencephalomyelitis #spoonie
9 0
WW Skinny Doll Challenge. February 2018. Day 22. Weigh in. I lost the 1/2 lb I put on last week! 😀 @skinnydoll #wwphotoaday #swphotochallenge #dietingforhealth #glu#glutenfreeng #glutenfree #chr#chronicfatiguesyndrome #chronicfatigue #myalgicencephalomyelitis #sli#slimmingworldiration #slimmingworldinsta #slimmingworld #slimmingworlduk #slimmingworlddiet
14 0
#wor#workingdogwednesday my girl and i have been working so hard on down stays 🙇🏻‍♂️ under her legs and i have nearly mastered them 💪🏼 the main problem is i just want to climb up in her lap and cuddle up 💤 #servicedog #servicedogintraining #sd #sdit #servicedogteam #servicedogsofig #psychiatricservicedog #psd #psdit #panicdisorder #chronicillness #orthostatichypertension #ot #medicalalert #medicalertdog #mad #dogtraining #workingdog #dogsofinstagram #respectthevest #dogonduty #muttsofinstagram #anxiety #chronicfatiguesyndrome #mecfs #myalgicencephalomyelitis #syncope
37 0
Made it out of the house somehow for a non medical appointment. Only happened because I have no appts this week. I wasn’t out very long, but when I went to pick up the dog from the groomers I couldn’t stand any longer. My legs were literally shaking and my heart rate was 20 above where I should stop. No chairs, so I sat on the doggy beds while I waited. #potsproblems #madeitoutofbed #stronger #endmecfs #myalgicencephalomyelitis #POTS #dysautonomia #EDS #CFS #PEM #chr#chronicfatiguesyndrome #chronicfatigue #fibromyalgia #bedridden #bedbound #zebra #spoonie #reynauds #chronicpain #unr#unrested #millionsmissing #CCI #cranialcervicalinstability #posturalorthostatictachycardiasyndrome #costochondritis #unrest
45 5
one of the many debilitating illnesses I have to live with. this doesn’t even begin to cover half of the symptoms I experience. I’m currently in a flareup and not doing too well, send me love. #myalgicencephalomyelitis #me #cfs #chronicfatiguesyndrome #invisibleillness #spoonie
53 2
38 0
👐☄💖 we do our best. Sometimes it's hard when you have so much to deal with in a 'normal' day and then life tests you on top of that but they don't call us warriors for nothing 🌈 #wegotthis #amiright #wecandoit #succeed #keepgoing #strength #toughcookie #fighters #chronicillness #chronicpain #endometriosis #adenomyosis #womenshealth #myalgicencephalomyelitis #endosisters
12 0
Churros de mi corazón ❤❤ #CheatMeal
113 3
After starting a Facebook group for local spoonies, I’m now arranging a couple of coffee mornings in about 3 weeks. I’m really hoping this works, not just because I would like a support network but more that I don’t want anyone else to feel as alone as I did & sometimes still do, to go through all of this by themselves, I want to be there for someone & let them know that every emotion they go through is ok. As a spoonie what would you want from a coffee morning? I’m going to try to reach out to some established groups & ask them for guidance as well as some charities related to the illnesses that I know people within the Facebook group have. If anyone has any ideas please feel free to comment I’d appreciate anything you can throw my way.
10 2
This is an ME hairdo...just natural wildness 🙄😅🤣 I’d have to have my hair cut really short again..but I don’t want to go through that loss too!!! 😫😭😑 We will resist!!!😒🤨💪🏼#Idontbrushmyhair #wildhair #knots #embulls #melena #noempentino #malaltiacronica ##meaction #myalgicencephalomyelitis #chronicillness #chronicinvisibleillness #unrest #timeforunrest #relapse #PEM #housebound #bedbound #healing #lovelightsmiles
19 1
Soooo does anyone else get reports from doctors and have absolutely no idea what they're saying?? I've had to google most of the words in that top paragraph 😂 (I saw a neurologist last week due to new symptoms e.g. fast heart rate, frequent dizziness, my vision going black/blurred/flashes, tingling all over my body that wakes me up in the night and extreme sensitivity to light) #help #confused #what #brainfog #me #myalgicencephalomyelitis #millionsmissing #myalgicencephalomyelitisawareness #cfs #cfsme #mecfs #fibromyalgia #chronicfatiguesyndrome #chr#chronicillnessawareness #chronicillness #chronicillnesslife #spoonie #spoonies #spoonielife
20 1
My replacement strap for my Fitbit arrived today so I can go back to tracking my sleep & my heart rate. I’m not sure why it stopped recording my heart rate not long after putting it back on or why it shot up so high for 7 minutes whilst I was sitting in the sofa. After that I had a nap then the rest of the time I was mainly seated with a short walk at about 5pm & again just after 7. Only about 5 minutes each time & at a very gentle pace as I ache too much for anything else. Hopefully between this, the ECG & the blood tests I had on Tuesday I may get some answers.
9 2
Never give up. Be the warrior you are within and always listen to they voice that says..try again tomorrow. Try harder. Do better. Go for it. 🙏🏽💫👊🏽💪🏽 #hea#healthestyle #health #chronicfatigue #myalgicencephalomyelitis #adrenalfatigue #fibromyalgia #recovery #survivor #warrior #strongereveryday #nevergiveup
21 0
—⚠️🚨Intimacy Alert🚨⚠️— (if it’s not for your or you just don’t like hearing about other people’s journeys then no worries🙂🙃 scroll past this one!) • • • • • today’s my husband’s 30th birthday🧜🏼‍♂️🎁🎉 and while birthdays are sacred to me - and especially for the people i cherish most - my partner and I’s humor and relationship... well let’s just say, #RyanReynolds and #BlakeLively are totally relationship goals! we like to mock, tease and gest with wit and sarcasm towards one another - all lovingly of course😋. however, my husband doesn’t have social - so he won’t even see this until about a week or so later😜🙃 • • • • • well... this month, and intensely this week, have been overflowing with self-hate, guilt, shame, anger and everything else that was bubbling up and conflicting inside me... because... my husband turns 30 today. and i didn’t have the trip or bash of a lifetime planned and executed for him. i have resistant depression disorder and last night the shame and guilt was driving me towards the suicide ideation. • • • • • so, naturally, as my depression was spiraling and my tears were soaking into his shirt - he help me closer and said “thank you for fighting so hard these past couple of years. you being here, continuing to fight, is the best gift i’ve ever received.” • • • • • when i woke up this morning i was able to get up and bring my partner a piece of coffee cake with a sparkler in it and take up a birthday sign on our window 🖤 it wasn’t much (in fact in my destructive brain it was under the category of: JACK SHIT, epic failure as a wife and a human being, no less... buuuut...🙄 trying to remember: *selflove, selflove, selflove, selflove*). since illness doesn’t stop for milestone birthdays - we had to keep moving forward - and particularly, get up and ready for my ⚡️TMS treatment this morning. • • • • • so, we both got up and into the shower. it probably should be noted that bathrooms in general are a major #ptsd trigger for me along with touching certain places on my body - like my lower to mid back is a no-go. another sidenote is that before i got sick i was 120-130lbs; after the... CONT. IN COMMENTS ⬇️⬇️⬇️
25 4
Seriously though. I was in the shower at the gym and I just started pondering this very important question. I use my super bendy powers to reach all of my back. How do normal bendy people do It? And what about hypomobile (is that a thing?) people do It? Do they just not? Is there a large population of people with a smelly bit on their upper backs that they just can't wash? . . . . #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
28 6
22/2/2018 Pain is back.. Don't know where it went for couple of days, but it is back now.. If I am sharing the same pain that travels and visits multiple patients and now it is my turn, the only comfort is that maybe some of you are pain free now.. #whatisthelogic #thissucks #endmecfs #pwme #thoughtsfromsickbed #marathonstruggle #darknessismyonlyfriend #lightwasononlywhentakingpicture #myalgicencephalomyelitis #🛌 #mecfs #cfsme #invisibleillness #meawerness
25 15
I’m trying not to get discouraged and to stay positive, but lately it’s been feeling like I’ve been banging my head against a wall. . I keep telling myself that healing isn’t linear, but it’s that same old song and dance for me. My eosinophils are still up, we are no where closer to knowing why, and my LLMD has reiterated that she doesn’t want me restarting my Lyme treatment until they’re down. . It’s been almost 2 months off treatment and I can feel the backslide. My neuro symptoms are flaring and my brain is on fire. The fatigue has set in more deeply and enrobes me like an iron blanket. My feet fluctuate between numb and tingling to shooting nerve pain that makes it hard to walk. And then there’s the brain fog, so thick at times that it feels like it engulfs me and I might lose all sense of myself. It’s a feeling that’s hard to describe until you’ve experienced, but it’s common with Lyme disease. It’s getting lost within blocks of home, it’s wearing two different shoes and not noticing, it’s being unable to remember how to spell the town you grew up in, it’s being unable to recall the memories that made you, it’s losing that feeling of connection with the world around you. It’s deeply humbling. . This time off treatment is hard, but even now, this body is still fighting. I think I sometimes forget that. Taking a break from treatment doesn’t mean I’ve given up. When I look back on the past two months—if I’m able to set aside my concerns about moving backwards—this time may be when I’ve felt the most like a warrior. On antibiotics, I feel strong knowing that I’m killing spirochetes and even when I’m herxing, I’m suffering for a purpose. It’s harder to feel that strength now, but it’s there. . I guess what I saying is that I used to think that the big battles were the most important part of being a warrior. And of course they matter, but the truly difficult times as a warrior are the the times in between treatments or aggressive antibiotics, the quiet moments, the waiting, and the choosing to hope when all seems dark. . #wearewarriors #fightlikeawarrior #hope
142 34
I want to buy this necklace 😍. #ridewithmenl #myalgicencephalomyelitis
14 0
What's better than fresh pyjamas? Pyjamas in the sale, with skiing dogs on 🐶🎿 These are so cute I couldn't resist! I've been in pyjamas a lot lately due to having to stay in more with worsening joint pain. It's amazing how something like this can lift your spirits ✨
27 3
Back in 2016 when I began ‘yoga, my bed & M.E.’ I created short and simple yoga guides, which got so much great feedback and also helped me to build and connect with so many wonderful warriors, but now I’m reaching out to thousands of wonderful warriors on social media and on FRIDAY I am releasing a yoga for M.E. Guide for you to download! In this 22 page guide there is ✨Yoga poses for bad M.E. Days. ✨ Healing meditation. ✨ Breathing techniques for Anxiety. ✨Rest & Relax yoga. ✨Body scan meditation. You will be able to get your copy from my website from FRIDAY! 🦋✨ #myalgicencephalomyelitis #spoonieyoga #cfs #mecfs #cfsme #yogainbed #yogamybedandme #cfswarrior
78 9
Today has been another very rough day. Really struggling at the moment I don’t know how I’m getting through my 3 hours at work it feels like a 12 hour shift😩 sending love and spoons🥄❤️ #myalgicencephalomyelitis #chronicillness #chronicpain #chronicfatigue #cfsme #spoonie #spooniesupport #millionsmissing #spreadingawareness #mentalhealth #deppression #video #vlog #vlogger #videodiary #pos#positivevibes #positive #10lbsdown #wei#weightlossgoals #weightloss
36 1
#SelfieADay haven't been out of bed for more than 20 minutes today. I just about managed to cook dinner, haven't even been able to shower because I felt so weak. I bought a walking stick today because after yesterday's wobble to the doctors I thought it'd be sensible. My mind is ok, so at least there's that. #myalgicencephalomyelitis #Chronicpain #chronicfatigue #fibrofog #fibromyalgia #cfsme
19 2
I didn't have much energy today, but I'm glad I got to make it through my appointment and spend some time with my friend until the crash hit 💀 Oh, and the appointment went well. I should be getting my own walker and manual wheelchair soon. #cfs #cfsme #fibro #fibromyalgia #pots #dysautonomia #gastroparesis #spoonie #spoonies #chronicillness #mentalillness #chronicpain #lyme #lymedisease #myalgicencephalomyelitis #millionsmissing #chronicillnesswarrior #chronicallyfabulous #autoimmunedisease #chronicallyawesome #timeforunrest
36 1
Não basta ter uma doença rara, sem cura, desconhecida e cheia de tabus sociais. Ainda é preciso aguentar pesquisas fraudulentas que reforçam estigmas. É de cair o 👌🏻 da calça... Embora tenha vindo à tona, seguimos invisíveis. #myalgicencephalomyelitis #mecfs #mecfswarrior #mecfsbrazil #pain #badscience #bioethics
59 6
Love to update you guys every day but tonight I'm just too tired. Will update tomorrow. Night spoonie fam 😘💜 #myalgicencephalomyelitis #me #chr#chronicfatiguesyndrome #cfs#cfs #mec#mecfs #cfs#cfsme #inv#invisibleillness #chronicfatiguesyndrome #cfs #mecfs #cfsme #invisibleillness #butyoudontlooksick #spoonie #millionsmissing #selfcare #sleep #sleepy #tired #bed
64 2
I couldn’t agree more! If you’re able to & wish to send a card to show your appreciation to Carol Monaghan for her excellent work in parliament yesterday here is her address ⬆️ #finallybeingheard #endtheneglect #gettingavoice #mecfs #thankful
54 2
Did you know: Human saliva has a boiling point three times that of water 💧 👄 . You’re welcome🤷🏼‍♀️ . Forever posting throwbacks, because I’m always looking like a hot mess 🙃😂 . #eyelure #pout #naturalcurls #onesie #minniemouse #disney #glam #makeup #fibrowarrior #autoimmune #throwback #biglashes #messyhair #funfact #browsonpoint #grossfact #mentalhealthwarrior #cfs #myalgicencephalomyelitis #fibromyalgia #makeupmakesmehappy #meonagoodday
55 2
WW Skinny Doll Challenge. February 2018. Day 21. Dinner. Just a simple dinner tonight after my treatment. Jacket Potato, Gammon, Pineapple 🍍 & Veg @skinnydoll #wwphotoaday #swphotochallenge #dietingforhealth #glu#glutenfreeng #glutenfree #chr#chronicfatiguesyndrome #chronicfatigue #myalgicencephalomyelitis #sli#slimmingworldiration #slimmingworldinsta #slimmingworld #slimmingworlduk #slimmingworlddiet
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