#lifeofaspoonie

[chronicallyold-blog]

Thank God for filters that hide the massive bags under my eyes. Oh the life of a #spoonie #spoonielife #cfs #fibro #fibromyalgia #chronicillness #chronicfatiguesyndrome #chronicfatigue #mental #mentalhealth #mentalillnesses #selfcarenotselfharm #ibs #me #disabilityawareneas #disability #disabled #exhausted #lifejourney #lifeofaspoonie #physicalhealth #sick #myalgicencephalomyelitis #degenerativedisc #jointproblems #pots #chronicpain #chronicheadache

[pheita]

Writing as a Spoonie

So writing as a Spoonie has it’s own unique issues. I just realized it after my f**king fibromyalgia flared up for weeks an left me not only unable to do the usual amount of work adn housework but also left me unable to write down a single sentence for my stories that make sense. I have no idea how often I stopped mid sentence an just went “What did I want to say?” or even worse with “Where am I even heading? What was the idea?”  Ok I admit being some weird hybrid of a pantser and a planer who does only little outlining these moments hit me even worse. But this flare up also made me realize all these writing advice are meant for healthy average people. Non of the ones I found considered how much pain, brain fog and other symptoms of a chronic illness can make things difficult. With my hands, shoulders and lower back being the major areas for pain, stiffness and cramps I can’t write 5000 words a day to get through the story. Especially not on days when my hands are so weak I nee both of them to lift a glas of water.

So what did I learn and can this help other Spoonies who feel called to write?  It is simple. Take a break. Focus on what is now and don’t try to force yourself to write for heaven’s sake. I ended up deleting 6 pages of a story because nothing fitted together thanks to me not being able to hold a thought for longer than 10 minutes. When you have trouble remembering why you went into the kitchen don’t even think about writing.  I switched to go through my characters, add some notes where I want them to go during their character arc, or took notes what should research once I don’t have the attention span of a squirrel anymore. Basically I revised my characters. 

Now I am smarter. When I don’t have the concentration to do a simple daily task I don’t open my writing program at all. It only ends in frustration when I can’t make me write a simple sentence. I remind myself a lot of authors didn’t get published before they were middle aged which means I still have plenty of time. No one hurries me to write. Like with everything else in life as a Spoonie I need to pace when it comes to writing. Strangely this epiphany took a lot of pressure from me.

[1213shea-blog]

#chronicallyill #chronicillness #chronicpain #spoonielife #spoonie #lifeofaspoonie #somuchpain #nospoonstoday #nosleep #spoonielifeishard (at Mona, Utah)

[swimmiey]

So yesterday I said I've got some good news. My mom texted me saying there was a letter from the hospital (the one I want to go for a second opinion). She asked if she should open it and she did. It was an appointment with the neurosurgeon. He is, in the Netherlands, one of the best neurosurgeons and know the most about IIH, shunt problems and complex CSF ( cerebrospinal fluid) disorders (like problems with the CSF not being reabsorbed like it should). He has done a lot of research about this problems and I wanted to meet him since a long time, but had problems getting the referral I needed. So I’m extremely happy I finally have an appointment with him. He really is last hope of feeling slightly better, less spinal taps/lumbar punctures and to make these headaches from hell more manageable. AND THE BEST PART ABOUT IT ALL: THE APPOINTMENT IS IN LESS THAN 3 WEEKS!!!! I’m so relieved about that, especially because I’ve received the appointment for the neurologist a week earlier, but that one isn’t until March 28. Came back from Rome today. It was so nice and I’m in love with the city, but it has really worn me out. I’ve been crying from exhaustion, pain/pressure in my and nausea. Also caught a really bad cold when I was in Rome, I think from the AC and it’s make me coughing my lungs out and give me very bad pressure headaches. But I’ve enjoyed myself very well the last 4 days. ---------------------------------- #lifeofaspoonie #embracetheunknown #srprsme #lowpotassium #secondopinion #invisibleillness #chronicillness #chronicpain #lumbarpuncture #chronicfatigue #shuntlife #hospitallife #spoonielife #spoonieproblems #intracranialhypertension #pseudotumorcerebri #miracleshappen #myheadhurts #ineedanap #butyoudontlooksick #sickandtiredofbeingsickandtired #sickbutstrong #sinusthrombosis #childhoodcancersurvivor #travelawesome #traveljunkie #bravedutchies #electrolyteimbalance #traveleurope #travelrome

[spoonielivingapp]

💜✨🥄🥄🥄✨💜#Repost @fitfibrochronicals ・・・ damn Nicole, back at it again with the PT 😂🙃• #fitfibrochronicals #fitsisters #fibrosisters #spooniesisters #damndaniel #spoonieliving #spoonielivingapp #chroniclife #physicaltherapy #ice #stim #kneeinjury #chronicpain #chronicillness #chronicfatigue #invisibleillness #lifeofaspoonie #clumsy #smh #fml #icanteven #whyisthismylife #spoonielivingapp

[dramalokni]

Okay, so I moved in to my new flat exactly 6 months ago today so this afternoon, I finally decided it was time to unpack & I've just unpacked all my boxes and suitcases for real!!!

[talesofanaturalspoonie]

**Feeling Smiley** Considering the day had a pretty crappity start it hasn't turned out to badly and has been pretty productive. 👊 Successful trek into cellar to find kids camping stuff 👊 Photos printed, framed and put up in one of the kids rooms 👊 Tax return done for 17/18 along with other financial ickiness 🙌🙌🙌 WHOOP!!! 👊 Book review done and posted 👊 Emails sent 👊 Kids tea cooked, stories read, lunch sorted for tomorrow 👊 My tea cooked Hell yeah I smashed today!!! Feeling a lot more positive and will try again for the gym in the morning, feeling grateful for listening to my body and all I was able to achieve today! #chronicillness #chronicillnesswarrior #smugaboutthetaxreturn #winning #mumlife #chronicpain #chronicillnessblogger #bookblogger #invisibleillness #autoimmunedisease #coeliacdisease #dysthymia #raynaudsphenomenon #spoonieblogger #spoonielife #lifeofaspoonie #ukblogger #blogginginbed #bloggercommunity #bloggerlife #fightingfatigue

[aly0363]

#spoonie #spoonielife #lifeofaspoonie #chronicpain #chronicillness #invisibleillness #chronickidneystones #kidneystones #migraines #depression #severdepression #anxiety #generalizedanxietydisorder #hypermobilitysyndrome #hypermobility #hms #butyoudontlooksick #spooniewarriors #spooniewarrior #spooniestruggles

[thelupusdiariesofficial]

Mood #thisischronicillness #chronicpain #butyoudontlooksick #chronicillness #spoonie #nottodaybitch #lifeofaspoonie #chronicillnessmemes #lookitsmonday

[pickett007]

Smoked out doublewing.& Metallic lippy 💖 now time for a nap😂 #lifeofaspoonie #zebrastrong #makeupartist #makeupfun #muaofinstagram #mueofinstagram #metalliclips #fallmakeup #chronicillnesswarrior #commonvariableimmunodeficiency

[1213shea-blog]

Did my makeup in the cat in the Ikea parking lot. lol - Sadia had to be to work early and I was sooooo tired! I legit took a nap with my hair in a bun, then woke up and worked my magic! Boom! You'd never know I'm weak, shaking, and off to see the neurologist about brain lesions, the fact that my right eye has lost most of its vision, and is mostly cloudy. That I have lost so much muscle strength, my energy levels are nearly depleted daily, and I have lost significant word recall. It's been a rough few months, and my numbness is up not only in the amount I get it, but in the amount of body parts it effects. My migraines have gotten worse, and the pressure inside my head is gnarly! But don't I look so pretty??? lol #spoonielife #feelshittygetpretty #lifeofaspoonie #chronicillness #chronicpain #chronicallyill #rawarrior #fibromyalgia #possiblems #msdx #onedayatatime #makeup #onestepforward #redhead #fierce #curls #selflove #confidence (at IKEA)

[mscomorbidity]

#mondaymotivation #quoteoftheday #instaquote #inspiration #ermabombeck #strongwomen #blessed #badbish #bossbabe #currentmood #ohm #namastebitches #namaste #readforlife #greatwomen #emotionalhealth #emotionalintelligence #fibromyalgia #fibrowarrior #effortlesschic #truebeauty #confidenceissexy #lifeofaspoonie #literature #spoontheory #spoonielife #lifequotes #lifestyleblogger #bloggerlife #bloggerstyle #bloggingfrombed

[spoonielivingapp]

💜🥄✨🥄💜 #Repost @fitfibrochronicals ・・・ I love getting to play the game “is it my mascara or am I just really fucking tired?” spoiler alert, I’m always just really fucking tired 😴 #fitfibrochronicals #fitsisters #fibrosisters #spooniesisters #spoonieliving #spoonielivingapp #noenergy #comebacklater #chronicpain #chronicfatigue #chronicillness #invisibleillness #exhausted #exhaustion #teamnosleep #eyebags #onfleek #fleekdafuq #fuckfibro #fibromyalgia #fibromyalgiasucks #spoonie #spoonies #spoonieproblems #lifeofaspoonie #thestruggleisreal

[swimmiey]

So I've got a call from the hospital that I will be having surgery next Monday to place my port back again. Last week when I've had my first appointment with my vascular surgeon they said it would probably be 14 weeks until they could do the surgery, but yesterday I've got a call it will be within the next week so I'm really happy about that. I'm not happy because it's another surgery but I'm happy because I don't have to worry anymore about getting blood work done or placing an IV when I really need it because it's getting harder and harder and last time they just couldn't get an IV in and they couldn't get the blood work done. Which can be dangerous when my potassium or phosphate levels suddenly drop, because if they do I really do need quickly IV access, because I can get paralyzes or muscle weakness but also my heart can stop beating if those levels are too low. So yeah, the things you can get excited about as a spoonie. Also my neurosurgeons office emailed me back, they've had a chance to talk to my neurosurgeon and the emailed me that my shunt revision will probably be in the second or third week of April. I just hope I will be able to go to a concert of Matt Simons I already have tickets for. Also im going to call my neurologist tomorrow to see if it's possible to schedule a lumbar puncture the Monday I will be having surgery, so it will be a bit easier to make it until shunt revision surgery. ************************************************* #surgery #spoonielife #shuntlife #chronicpain #chronicfatigue #bravedutchies #electrolyteimbalance #lumbarpuncture #shuntlife #shuntproblems #portacath #portacathsurgery #venousaccessport #invisibleillness #chronicillness #incurabledisease #intracranialhypertension #lowphosphate #lowpotassium #vascularsurgeon #thingsigetexcitedabout #chronichope #headachefromhell #hospitallife #spoonieproblems #spooniestrong #lifeofaspoonie #hypokalemia #lowpotassium #childhoodcancersurvivor

[jenicorn88]

Post coffee and little walk in town, ended up horizontal on the sofa struggling to keep my eyes open. 2 hour nap seems to have helped and I'm semi awake now 🙈 #lifeofaspoonie #spoonie #selfie

[anabeatseds-blog]

#ehlersdanlossyndrome #disabledbutnotdisqualified #invisibleillness #chronicpain #spoonie #lifeofaspoonie