brooksmeatswift

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Just a little nudge… . If you have taken part or still want to take part in the @decodemestudy you can do so and be sure to follow all the steps at your own pace . Even if you are only eligible for the questionnaire - you won’t know if you’re required to do the spit kit until after - but it’s a big help towards the findings of this study . Link in bio and stories . . . #SpitToDecodeME #ME #CFS #Relapse #spoonie #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #PEM #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/Cn124aAsVnu/?igshid=NGJjMDIxMWI=

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𝕀 𝔸𝕄 ℙ𝕖𝕣𝕤𝕚𝕤𝕥𝕖𝕟𝕥 . Finally, my first meditation of the year . It’s been a tough start to the year and a lot of flares and setbacks after Christmas; but this was a message that I needed . “I progress through whatever challenges lie in my path” . I’d say this is not just true to me with having a chronic illness in M.E. But for most people in life, challenges will always present themself - it’s how we deal with them that matters . . . #ME #CFS #Relapse #PostExertionalMalaise #PEM #spoonies #spoonieandparenting #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME #meditatingspoonie #iampersistent (at Windsor, Berkshire) https://www.instagram.com/p/Cn07f99j1w1/?igshid=NGJjMDIxMWI=

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𝘚𝘰 𝘩𝘦𝘳𝘦’𝘴 𝘵𝘰 𝘺𝘰𝘶 . Nana, I wish we could be there today to see you pass through to the other side and say our goodbyes . Sadly health has got in the way and I light this candle in your honour and in the knowledge that you were a major part of my life growing up . every summer spent with you and Grandad was cherished and I wouldn’t be me without you and all my happy childhood memories . Dementia is a cruel illness and knowing you are now at peace, no matter how hard, it means you aren’t suffering anymore . Note I even poured a Baileys in your honour - sadly not the cheap £2 a bottle from B&M that you used to make me buy you 😂🤣 . #RIPNana (at Windsor, Berkshire) https://www.instagram.com/p/CnpjGF1Musb/?igshid=NGJjMDIxMWI=

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𝓜.𝓔. 𝓪𝓷𝓭 𝓹𝓪𝓻𝓮𝓷𝓽𝓲𝓷𝓰 . do not mix well at times. But I have come to terms with that and doing the best I can . It means trying to pick your battles, which is sometimes hard when you have to get them out of the door and at school/nursery on time and you already have a handicap . I do have my moments where I think ‘why!?’ But if they want breakfast in my bed with their tablets, we’ll why not… . They did this morning and actually, we got out of the door earlier than when they go down to the dining room 🤦‍♂️😂 . In other news, the girls love making dens, still dancing to Encanto and after 9 months or so of back and forth; I was awarded PIP which will be a massive help considering the childcare cost and help we need whilst I’m unable to look after them all day . It gives that bit of help so I can rest and know that Attie is developing too - after all, we want her to be able to have social time considering she was born in lockdown . And for me, rest is the hardest thing as it means full period of no noise, no light, no anything really, to give me a little energy for when the little buggalugses get home . . . #ME #CFS #Relapse #PostExertionalMalaise #PEM #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/Cno89OGMklh/?igshid=NGJjMDIxMWI=

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No real words 😢 I didn’t know you personally but our ME Community lost a real shining light this week . May you rest in peace Kara and no longer suffering 💔 . #lightforkara (at Windsor, Berkshire) https://www.instagram.com/p/CnAVCvIs0-0/?igshid=NGJjMDIxMWI=

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𝕳𝖆𝖕𝖕𝖞 𝕹𝖊𝖜 𝖄𝖊𝖆𝖗 . Hope you all have a fabulous 2023 and May it be a year of chasing rainbows, seeing the good in everything and more costume changes . I’m not kidding - our girls change into about 4 fancy dress costumes a day - not including normal clothes; enough costume changes to rival a Taylor Swift gig 🤣 . I should mention how I hope it’s a year that I improve with health and Linds with stress of worrying about us all - but that’s out of our control . though I do hope it’s a year that DecodeME start seeing some interesting results in our gene study and aid future sufferers of this awful condition . . . #happynewyear #ME #CFS #Relapse #PostExertionalMalaise #PEM #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/Cm3TGonqk1R/?igshid=NGJjMDIxMWI=

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𝓖𝓸𝓸𝓭𝓫𝔂𝓮 𝓝𝓪𝓷 . Waking up this morning, it’s so hard to believe she’s actually gone up to her place in the sky - sad that chances are I won’t be able to make the funeral due to my ME 😢 . Every summer from a young age, was spent at their guesthouse and then their new house and flat in Blackpool; and part of it in their caravan in the Lakes, with them, my cousins, aunt/uncle and sis as she got older . But it was a bygone time where our phones didn’t have cameras, so I don’t have many pictures of us together sadly 😢 . But what I do have, are precious memories of being loved, having fun, free rides on the pleasure beach, playing soldiers in the woods at the caravan, bathing in sinks, every summer was a new adventure- and I will never lose those moments, they will live on until I pass . I love you Nan, and although I pray it’s a long time off, I hope to see you again; I’ll bring the Guinness and Baileys . Rest In Peace Nan . . . #restinpeacenan #ME #CFS #Relapse #PostExertionalMalaise #PEM #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Blackpool) https://www.instagram.com/p/Cmn6bc8sA99/?igshid=NGJjMDIxMWI=

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𝕾𝖔 𝖙𝖍𝖎𝖘 𝖎𝖘 𝕮𝖍𝖗𝖎𝖘𝖙𝖒𝖆𝖘… . Aurora asked for the leg, and the leg she took and finished with a little help from Attie . Started with Grace 🙏🏻 from Aurora - delivered perfectly; after the prezzies (still some to go) and a bit of styling from her cousin Jessica - but the whole family are stuffed . Absolutely a boss meal from Gran, Linds and the hostess SIL . Now it’s time to rest before pudding in about 5 hours time 😂 . . . #ME #CFS #Relapse #PostExertionalMalaise #PEM #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME #sothisischristmas (at Isle of Wight) https://www.instagram.com/p/CmmAz0jMM_O/?igshid=NGJjMDIxMWI=

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Merry Christmas you filthy animals… and a happy new year! (at Isle of Wight) https://www.instagram.com/p/CmlFCMMKZoJ/?igshid=NGJjMDIxMWI=

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𝕬𝖓𝖉 𝖎𝖙’𝖘 𝖌𝖔, 𝖌𝖔, 𝖌𝖔 . As Elvis and Evie were ready to drive us to the first stop on our travels to the Isle of Wight . Thankfully, mama saw sense and she took over the driving to get to Gran’s house . We are now here, and I literally slept all day after the journey - so coming 2 days prior to our ferry was a very good shout . I just hope Elvis and Evie don’t ruin Gran’s house!! . Swipe ➡️➡️➡️ for the video of the girls finding the naughty elves . . . #ElvisandEvie #elf #elfontheshelf #elvesbehavingbadly #drivinghomeforchristmas #ME #CFS #Relapse #spoonieandparenting #papaandrory #andattietoo #dontforgetmama #cosmicprincesses #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodemestudy #butyoudontlooksick #aches #pains #dizzy #sensitivity #brainfog #PEM #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/CmcGcgmsVs8/?igshid=NGJjMDIxMWI=

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𝕵𝖚𝖘𝖙 𝖆 𝖑𝖎𝖙𝖙𝖑𝖊 𝖌𝖆𝖒𝖊 𝖔𝖋 . …spin the bottle . Not only did Elvis and Evie corrupt our Disney friends into drinking mama’s Baileys . They also got them playing that teenage classic of spin the bottle . No one was kissing and telling this morning though! . . . #ElvisandEvie #elf #elfontheshelf #elvesbehavingbadly #spinthebottle #kissandtell #ME #CFS #spoonieandparenting #papaandrory #andattietoo #dontforgetmama #cosmicprincesses #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodemestudy #butyoudontlooksick #aches #pains #dizzy #sensitivity #brainfog #PEM #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/CmYZMHkMuDJ/?igshid=NGJjMDIxMWI=

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𝕮𝖍𝖗𝖎𝖘𝖙𝖒𝖆𝖘 𝖏𝖚𝖒𝖕𝖊𝖗 𝖉𝖆𝖞 . in Lapland . Turns out that the elves took Rory’s old and now Attie’s Christmas jumper to the festivities last night . Took until 5 minutes ago before the girls noticed the cheeky elves . . . Less than a week now, before the big man himself arrives to spread joy to every girl and boy . . . #ElvisandEvie #elf #elfontheshelf #elvesbehavingbadly #christmasjumperday #ME #CFS #Relapse #spoonieandparenting #papaandrory #andattietoo #dontforgetmama #cosmicprincesses #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodemestudy #butyoudontlooksick #aches #pains #dizzy #sensitivity #brainfog #PEM #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/CmWFKz5Mt4K/?igshid=NGJjMDIxMWI=

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𝕾𝖙𝖆𝖗𝖙 𝖙𝖍𝖊 𝖉𝖆𝖞 . …right, just like Elvis and Evie . Nothing warms your soul like that first cup of hot Yorkshire tea in the morning, especially if you’ve come back from Lapland . Only snag, I wish they used their own tea bags and not ours the cheeky elves!!! . Swipe ➡️➡️➡️ to see video of girls reactions this morning 🙏🏻♥️ . . . #ElvisandEvie #elf #elfontheshelf #elvesbehavingbadly #startthedayright #ME #CFS #Relapse #spoonieandparenting #papaandrory #andattietoo #dontforgetmama #cosmicprincesses #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodemestudy #butyoudontlooksick #aches #pains #dizzy #sensitivity #brainfog #PEM #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/CmTfzTdsI6G/?igshid=NGJjMDIxMWI=

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𝕿𝖜𝖔 𝖎𝖓 𝖔𝖓𝖊 . Don’t worry Elvis and Evie were up to mischief yesterday too but I didn’t have the energy to post due to a busy day (PEM starting to hit 😖) - so here is yesterday and todays palooza . Do they almost made it back to bed yesterday morning but we found them climbing Candycane Bannister, poor elves . Then today, well, I caught them in the act watching the girls favourite show - Reel to follow shortly . . . #ElvisandEvie #elf #elfontheshelf #elvesbehavingbadly #twoinone #ME #CFS #Relapse #spoonieandparenting #papaandrory #andattietoo #dontforgetmama #cosmicprincesses #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodemestudy #butyoudontlooksick #aches #pains #dizzy #sensitivity #brainfog #PEM #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/CmQq6FSs6HF/?igshid=NGJjMDIxMWI=

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𝕭𝖗𝖊𝖆𝖐𝖋𝖆𝖘𝖙 𝖋𝖔𝖗 . Five this morning; mama goes to work early and must have caught Elvis and Evie out as they were frozen whilst helping themselves to brekkie . Hard work going to and fro to Lapland each night, obviously . But the sheer delight on Rory and Attie’s face when they realised ♥️ . . . #ElvisandEvie #elf #elfontheshelf #brekkietime #ME #CFS #Relapse #spoonieandparenting #papaandrory #andattietoo #dontforgetmama #cosmicprincesses #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #aches #pains #dizzy #sensitivity #brainfog #PEM #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/CmLuXQOsnFO/?igshid=NGJjMDIxMWI=

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𝕀 𝔸𝕄 ℝ𝕖𝕒𝕕𝕪 . Although the I AM Ready meditation is focused on slightly bigger things than just going to the doctors, I needed this today because for me or any other ME sufferer, going to the docs is a whole lotta spoons used up . Normally I have my checkups with a phone call unless it’s something I need looking at; and todays that day . I’ve been getting some severe pains which do coincide with my ME pains but they have intensified so I just want to be safe, rather than just fob it off as ME - so easy to do . Question. What does everyone think the plant/leaf is in the card? . Reminds me of Aloe-Vera but not sure if it is that 😂 . . . #ME #CFS #Relapse #PostExertionalMalaise #PEM #spoonies #spoonieandparenting #meditatingspoonie #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME #iamready (at Windsor, Berkshire) https://www.instagram.com/p/CmLXQ4CMOXl/?igshid=NGJjMDIxMWI=

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𝕽𝖊𝖆𝖉𝖞 𝖘𝖙𝖊𝖆𝖉𝖞 𝖈𝖔𝖔𝖐 . Well I don’t think think that Elvis and Evie will be gracing the bake off or masterchef just yet . But they sure did have fun in the kitchen whilst we slept - Rory ate every last morsel . Attie, well she just slept in . . . #ElvisandEvie #elf #elfontheshelf #readysteadycook #ME #CFS #Relapse #spoonieandparenting #papaandrory #andattietoo #dontforgetmama #cosmicprincesses #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #aches #pains #dizzy #sensitivity #brainfog #PEM #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/CmJSD2ZMCWY/?igshid=NGJjMDIxMWI=