#spooniepain

My daughter @emmy97xox and I did a thing. It was exhausting and painful, but yes, we gingerbreaded!! I honestly didn’t know if we’d ever get to the Christmas baking this year, but I had a surge of energy after dinner, so we hobbled into the kitchen. This batch came out beautifully. So very good #Christmas #baking #gingerbreadman #gingerbread #christmastree #shootingstar #cookies #biscuits #sopainful #andexhausting #butworthit #soglad #hopefullydomore #needtobakethecake #spoonie #spoonielife #spooniepain #red #redplate #christmascolours

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I still spent most of today in bed, although I am improving. I did manage to sit up for a while and wrap some presents #Cat #Beeno #Tabby #exhausted #inbed #satup #wrapping #presents #christmas #energy #gettingbetter #improving #lesspain #spoonie #spoonielife #spooniepain

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I’ve been suffering with a bad flare lately. Lots of pain and exhaustion. I’m stuck in bed today, so I’m eating some Christmas chocolate to cheer myself up. Such cute little Santas. Delicious too! #bad #flare #pain #exhaustion #inbed #cantgetup #dizzy #chocolate #santa #coin #goldcoin #spoonie #spooniepain #spoonielife #christmas

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I’m feeling this tonight. It’s been a busy week. I think I’ll sleep well all weekend. Definitely not many things will be done. #exhausted #havetostop #sotired #osteoarthritis #bursitis #chronicpain #havedonetoomanythings #needtorest #relax #recharge #spoonie #spooniepain #spoonielife

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#tbt some random pics from my sicker days. Alhamdulillah for every second of pain that I've gone through that it was me and not my children or anyone I love instead. I have an 'incurable' sometimes life threatening illness called #adrenalinsufficiency also known as #addisonsdisease which means my #adrenalglands aren't able to produce a hormone we need to live called #cortisol. Cortisol performs over 100 different functions in the body so even though I take a replacement artificial hormone it keeps me alive but doesn't really allow me to have a normal quality of life. One of the things Cortisol does is fight inflammation. Eczema is basically inflammation of the skin so that's why I struggle with my skin so badly. By the time I finally got diagnosed I actually had accute skin failure (#organfailure). The official cause of my illness is the over subscription of steroid creams so please be careful with them. This has been some of the most difficult years of my life and that's saying a lot! The things I have gone through haunt me every day it's been such a painful and lonely time full of hospital visits and emails begging the doctors to help me because THIS IS NOT ECZEMA.
That being said I still feel very blessed. I now have two consultants and a support worker as well as great friends and family around me 💖. I could have cancer, be paralysed, blind etc. It could be a lot worse and I am grateful for that everyday 😊👌🏾
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#chronicillness #chronicfatigue #spoonie #spooniepain #autoimmuneillness #inflammation #anxiety #eczema #steroidcream #lifethreatening #illness #inspiration #motivation #keepgoing #blessedandhighlyfavored

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We made it!! After missing the last two events due to flare ups, we got to the @cathavenau Catmus fair. We were only there for just over 20 mins, as we run out of steam quickly, but it was great! We got some cupcakes and cat things and the best honey joy I’ve ever eaten! We bought some raffle tickets too. The stalls there were awesome and everyone was really friendly #cathaven #catmus #fair #christmas #fun #cats #cushioncover #cupcakes #gelpens #wandtoy #honeyjoy #sodelicious #bestever #gotthereearly #food #stalls #raffle #spoonie #spoonielife #spooniepain

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The pain is bad this evening, so I’m in some new pj’s in bed. I’m hoping my pain meds will help, as I do have some washing that needs dealing with. It’s so frustrating when you start a task and then struggle to complete it or just don’t. #pain #bad #pyjamas #inbed #washing #struggling #frustrating #hoping #spoonie #spoonielife #spooniepain #spoonieproblems #painpaingoaway #dontcomebackanotherday #tryingtodistractmyself #ow

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UPDATE💜: Been not having pain these last few days & just tonight my left hand starts hurting :( . My wrist is swollen and I can’t even move or flex my thumb . It hurts so much to even move . So annoying to be in pain at night when you think you can relax then this happens 😒. #LupusBlog #Lupus #SLE #SystemicLupus #SystemicLupusErythematosus #LupusLife #LupusWarrior #LupusPain #LupusSisters #LupusProblems #LupusAwareness #LupusAdvocate #Lupie #Lupies #LupieLife #LupiePain #LupieProblems #LupieWarrior #Spoonie #SpoonieLife #SpooniePain #Spoonies #ChronicPain #ChronicPainWarrior #ChronicPainAwareness

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Had a very stressful, painful morning at a specialist appointment. It wasn’t helped by the fact I woke up just after 4am in pain and couldn’t get back to sleep, so I was aching and exhausted before I even got there. It was so nice to get home to our sweet pets. The lineup here from left to right is Connor, Oliver, Josephine and Piggy with darling Beeno curled up in front @princetabbypossum #teddies #tabby #cat #bunny #piggy #sotired #aching #pain #exhausted #osteoarthritis #bursitis #specialist #stressful #spooniepain #spoonie #spoonielife #inbed #restandrecharge

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Not everyone i know is aware of my 'normal' pain levels.
▶️5-6 is probably average for me, so i would say that about 70% of my days are at this level.
▶️4-5 is when my body is behaving, the drugs are working and the planets have aligned. 4-5 is a good day. These are becoming less frequent.
▶️6-8 tends to be at the weekend when i've finally stopped for the week and laid down for a few hours. And this is every weekend or extended time off like bank holiday weekends.
▶️7-9 are my extremely bad days. They are blessedly not that often, but are becoming noticeably more frequent than before.

So if i cancel plans at the last minute or decline an invitation, its not because i hate you, its because i'm struggling. I also have no idea how i'm going to be from day to day. An 8 day can follow a 4 so i may have to cancel last minute. Planning in advance is something that i've had to unlearn.

#spoonie #spoonielife #spooniepain #pain #fibromyalgia #fibro #arthritis #spinalarthritis #copd #chronicpain #chronicillness

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This is what I have on my bedroom door. Having a bad flare today. I managed to get to an appointment this morning and have been in bed in my pj’s all afternoon. Em had to bandage up my hand as two knuckles and fingers have swollen up and the arthritis gloves weren’t keeping them still enough #flare #feelawful #pyjamas #inbed #mydoor #bedroom #rats #blackandwhite #unwell #pain #swollenfingers #bandage #spooniepain #spoonie #spoonielife

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Now that I can no longer garden outside, I’ve decided to get a few more plants inside. So off we went to pick up some plants. I had a rough day yesterday, so I still don’t feel the best, when on the way home we heard sirens screaming behind us. I was going through a round about, so I started pulling over and slowing down, but the couriers van behind me was nearly ramming me trying to get past, so I kept slowing rolling forward and he squeezed through. It was then we realised the two police cars were after him! I feel I’ve done my bit for justice today as I slowed him down and let the cops catch up, but it shook us all up. My heart was certainly racing! It was a relief to get home #plants #carchase #caughtup #scary #police #shaken #kindaexciting #goodstory #ihopetheycaughthim #stayinghome #restandrecover #spoonie #spooniepain #spoonielife #indoorgarden

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Friday feels from @lizclimo I haven’t made it out of bed this morning, as I predicted I’m very sore and sorry with joints as stiff as the tin man. Rest and recovery today #Friday #fridayfeels #lizclimo #coffee #bear #rabbit #spoonie #osteoarthritis #bursitis #rest #recovery #spooniepain #spoonielife #spoonieproblems

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I’ve bought some new pyjamas as that’s what I mainly wear some days. Sometimes they mix and sometimes they match! I was in these ones this morning, but my daughter helped me dye my hair and the whole process has left me so exhausted and in pain I’ve crawled into a fresh pair. At least dinner is cooking in the slow cooker. #pain #exhausted #toomuch #nomorespoons #pyjamas #mixanddontmatch #spoonie #spooniepain #spoonielife #letshaveapyjamaparty

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We’ve had a full week of appointments and I’ve done a little bit of cleaning today, but on getting home from the post office my facet joint informed me I’d done enough. Waiting for pain meds to kick in and have ordered pizza for dinner. Aren’t Tabby’s toe beans perfection? #resting #inbed #cantmove #facetjoint #pain #thatsthebadone #havetostop #staydown #spoonie #spoonielife #spooniepain #cat @princetabbypossum #beeno #tabby #toebeans #jellybeans #perfection #catsarefamily

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Some lovely flowers and trees outside at the radiology place this morning. He thinks the spasms behind my knee are coming from my back. He’s going to review my scans and see if there’s a treatment option. Possibly it’s something that can’t be fixed, or it may help to inject the nerve. I’m just glad I have an answer, never thought of my back being the culprit! #radiology #flowers #pretty #trees #knee #back #nerve #injections #spoonie #spooniepain #spoonielife #exhausted #doneforthday #nomorespoons

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I’m feeling so awful this evening, I’ve been in terrible pain all day, with some nasty spasms in my back making me miserable. I desperately want to make it to my appointment tomorrow though, this is a picture of my knee all swollen, the circle is over my knee cap. As my son says I have two knees. And this isn’t the knee I was referred about! We don’t know what the issue is with this one as the ultrasound found nothing. Yeah, it’s a pretty big nothing! Anyway please send some extra spoons so I get there! #knees #swelling #appointment #pain #outofspoons #backspasms #ow #spooniepain #cantdeal #needachauffeur #noenergy #spoonie #spoonielife #kneepain #theyfoundnothing #ultrasound

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I didn’t realise that it was World Arthritis Day on Thursday. I’m 44, but I have to use a cane and wheelchair due to arthritis. I’ve stopped gardening and am barely able to cook. It’s difficult to get my kids to their appointments and pick up their medication. I get a lot of things delivered, as going out results in days in bed. By the weekend all I can do is lie in bed and try to recover from the week. It’s Saturday morning and I’m in bed with a heat pack trying to get the pain to settle to a point where I can drive to the chemist to pick up some medication. We need to find a cure! #arthritis #osteoarthritis #findacure #disability #suffering #pain #debilitating #nowaytolive #spoonie #spooniepain #spoonielife

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@emmy97xox and I just watched Fantastic Beasts and Where to Find Them. What a brilliant movie, we both loved it. The Niffler reminded us so much of our ratties, just the way he moved was so rattie like. I hope there’ll be a sequel! #fantasticbeastsandwheretofindthem #brilliant #movie #lovedit #nifflersrule #niffler #rattie #ihopetheresanothermovie #neededabreak #restandrecharge #spoonie #spooniepain #spoonietired #spoonielife

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Right?? 😪 Spoonie pain makes me a crybaby. I've had other pain, grief, loss of so called friends, emotional pain, injury pain, surgery pain, birthing pain, etc., but nothing as chronic & debilitating as Spoonie pain. It's there every day of every second of the whole freakin' year. It doesn't go away. It can get "tuned" down to about a 5-6 on the pain scale for me with meds but it's constant. This is coming from a burn survivor, don't get me wrong burn pain is a whole different trauma & I've lived it & will always live with it but for me, chronic pain is just something that I can't escape. After all I went thru as a burn survivor, I got thru it. I can't get thru the debilitating, constant, deep pain I endure with being a Spoonie. It's just nothing I can explain. I went to therapy for my emotional trauma of being a burn survivor. I can't go to therapy for chronic pain. I had numerous surgeries for my burns from skin grafts to scar tissue release surgery & everything in between but I can't go thru any of that to help me with my chronic pain. I can't escape it. I don't take my burns & my life as a burn survivor lightly. It was sheer freakin' hell so when I say chronic pain is so debilitating for me, I mean it. My drs suspect that's where my Spoonieness originated from 😢 There is no other pain like getting burned, there's no other pain like giving birth. There's no other pain like #spooniepain It's real. It sucks. It's maddening. It's constant. It makes me cry more often than anything ever has. My #ra pain. My #interstitialcystitis pain My #trigeminalneuralgia pain. My #migraine pain. My #tmj pain My #ddd pain. The list is endless. My pain for some crazy reason doesn't show on me. My #Spoonieness is invisible but believe me, it's there 24/7 & it totally bites. So yes, pain makes me cry 😪 #this #sotrue #pain #painsomnia #truth #chronicpain #mytruth #myspoonielife #myspooniejourney #purpleness #chronicfatigue #chronicillness #invisibleillness 💜🌼

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Spoonie pain can do that, over & over again. Who can have a clear mind when the pain rips at you 24/7? Yeah, that. #sotrue #truth #spooniepain #ourtruth #spoonietruth #this #spoonie #chronicpain #spoonieknows #chronicfatigue #chronicillness #purpleness #invisibleillness #myspoonielife #myspooniejourney 💜

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Went to the doctor today for my knee and I need to see a specialist pain radiographer. Hopefully he can help, if not then I’ll need an operation. I’m not very good under anaesthetic, so I really want to avoid that #pain #knee #specialist #radiology #operation #anxious #anaesthetic #spoonie #spooniepain #spoonielife

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My bad knee is giving me a lot of grief lately. At least the pajama pant meerkats are ready to party!! #badknee #ow #pain #cramps #cracksinthebone #tissuedamage #cyst #constantclicking #knee #problems #meerkats #party #pyjamas #smile #spoonie #spoonielife #spooniepain

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UPDATE💜🍃: Today my mother and I adventured out to the Valley Children’s Hospital CARE Event ! I was the lead speaker talking about my long road of my diagnoses story and after took questions from the teens and parents wanting some advice ! I love that I can be apart of something so powerful allowing these families feel like there is hope, there is light at the end of the tunnel , that they aren’t alone in this fight ! Was so humbling to see so many children and teens & parents come up to me thanking me , saying I touch their life and gave them hope things can and will get better ! After I spoke then we had lunch and we stuck around for the cowboy show 👨🏻🌾👢 was lots of fun, great people and most of all AWARENESS! #Lupus #LupusBlog #LupusLife #LupusAwareness #LupusWarrior #LupusPain #LupusProblems #LupusChick #SystemicLupus #SystemicLupusErythematosus #SLE #Spoonie #SpoonieLife #SpoonieChick #SpooniePain #Spoonie #ChronicIllness #ChronicPain #ChronicIllnessLife #Fibromyalgia #AutoimmuneDisease #InvisibleIllness #CareEvent #RheumatoidArthritis #KidsGetArthritisToo #JRA #Arthritis #CareEvent2017 #LupusAdvocate #LupusAdvocacy

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Last day here in Fresno California , my mom and I adventured to see the underground gardens and now heading home 🍃❤️. Thank you Fresno for the lovely time we are so blessed ! #Lupus #LupusBlog #LupusLife #LupusAwareness #LupusWarrior #LupusPain #LupusProblems #LupusChick #SystemicLupus #SystemicLupusErythematosus #SLE #Spoonie #SpoonieLife #SpoonieChick #SpooniePain #Spoonie #ChronicIllness #ChronicPain #ChronicIllnessLife #Fibromyalgia #AutoimmuneDisease #InvisibleIllness

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