This has been my last few days 😴 up all night and asleep most of the day. The rollercoaster of emotions and energy of the past few weeks has really taken its toll and I could do very little to change it than to simply lie down and wait it out. I’ve been very lucky to have my gorgeous man by my side taking naps with me at some points so I’m not alone and overthinking. It can be really hard to recharge and feel so useless but I am learning that it has to be done sometimes, that I’m only human and there’s only so much one little body can take. With a super crazy week ahead I am taking comfort in this moment of stillness with my loved one and hoping it will gear me up to face the tasks ahead.
[infusion] days are always hard. i never know how my body will respond. i started with a migraine & felt rather fatigued. was woken up at 3am with severe adominal + pelvic pain//burning. i finally fell back asleep at 4:30am with slight relief, only to wake up at 6:30am in pain...again. i’ve been up all morning managing it. i won’t lie— i’m struggling. this pain is terrible. this flare is terrible. i just want it to stop. #mylupiejourney
Came back from vacay & this gem was waiting for me in the mail!! @lovesabrinaashley is helping to let Pretties everywhere know that selfish ain’t always a bad thing! Lovingly packaged with roses & and handwritten note! Can’t wait to rock this in the streets and let it be known! Holla at this beautiful sista friend for yours!
I for one am very thankful for #TheNHS From day 1, it has been there for me, helped me through all of my life, continuing to help me even when the EDS throws a curve ball and to enable me to be the best me that I can be me by providing me with services/treatments/tests etc that I need. In the last few months, there’s not been a week where I haven’t had a visit to my local hospital #FGH whether it’s tests (which I’ve had to check my heart issues) or Hydrotherapy, and I still need to make a visit about my pelvic/hip area when I haven’t got my other appointments. So if it wasn’t for #TheNHS , I wouldn’t be able to be as well as I can be. Happy 70th Birthday NHS!! 🎉🎈❤️ Ps this is taken from my fb profile. #EhlersDanlosSyndrome#ChronicFighter#EDSAwareness
Today turned out to be a migraine day. I've just been resting and sleeping until now. Watched the last episode of The handmaidens tale and is sad it's so long until next season 😔 now it's time to make some easy food and try to eat something 😴😷 #migrainesucks
People in Gnesta might think I'm out of my mind walking down the street with my two dogs... and a cat 😂 for my defence we just came out of the woods and I felt like letting Meeko walk as long as he actually walked. He stoped more frequently further down the road so I did put him in his bag after a while 😅🐱 #walkingthecat
Sat on the yard a while today, first with Meeko who was happy to come outside. He wandered around and kept close to Stina who also was outside. I'm so happy at least the cats around here isn't aggressive 😍 #outdoorcat
》》Hi, My name is Kharlybia Roane I am 22 and I was born with Sickle Cell Anemia. Sickle Cell is a blood disorder the changes the shape of red blood cells into the size of a sickle. The sickled cells trap normal red blood cells causing lack of oxygen to the brain. This than causes severe pain in certain areas of the body. Although I’ve lived with this illness all my life I’ve learned to turn my disadvantage into my advantages in life. I could let this illness get the best of me but I’m stronger than that. At the age of 16 I decided to start modeling and because of that I’ve had the opportunity to walk in New York and Paris Fashion week. I believe it’s important for those living with chronic illnesses to be more than just their disease. Finding hobbies or things to break the negative stereotype about your chronic illness is important. To see more of my journey please follow my Instagram @kharlybia.naomi
Meeko and I planned alone time this morning but ended up in a cat meeting. There were Meeko, Anna's cat Stina and two other cats just staring at each other, completely calm. So thankful that at least the cats is not aggressive towards each other 😂😍 #cats
Went to bed around 02 yesterday, I was all caught up in my project. But I finished and I'm happy with it! It's a church made in to a home for my vampire family with Skyrim names 😇 today I woke up super dizzy, don't know why, so I guess we'll just take it easy hoping for it to pass. 😌 #thesims4
》》Hello everyone! My name is Emily, and I’m just your average 14-year-old girl with Complex Regional Pain Syndrome. •
My story began in September 2013, when I was doing a solo in an Irish dancing display. I fell and fractured my 5th metatarsal, but the fracture was missed for over a year. I developed symptoms of CRPS a few months after my accident, and I was finally diagnosed in June 2015. •
In November 2015, I was hospitalised for a month to learn to walk again, and to get my pain under control. •
Since then, I have been diagnosed with Full Body Crps, Restless Leg Syndrome, Osteoporosis, HSD, POTS, GERD, anxiety and depression. •
I fight everyday to try and be a normal 14 year old. Please please please remember that your illnesses and medical devices do not define you, but your strength and courage does 💓
A walk in the woods is a part of Neas rehab and that's nice as it's one of the things we love the most! 20 minutes work up, such a patience test for all of us as Nea have to walk in slow walk all that time but we made it 😂 I brought the camera but didn't take any pictures as I forgot the mosquito spray so had a hard time as it was. It feels like I won't be able to play in peace tonight due to all the bites 😅 now Nea is stretched and I'm back to ts4 😎 #walking
Today I've finally got to play ts4 seasons! I stayed up way to late yesterday, playing Skyrim and at 02 I decided to chat with EA support. We fixed the problem and I'm so happy 😍 now I'm building and creating as I have been planning for weeks, waiting for the update and seasons to be released. The animals are sleeping and I'm hoping for a walk later 😊 I've made potato salad with to much garlic, it's standing in the fridge waiting for dinner to be made 😃 #finally
The day started with plans; grocery shopping and play ts4 as the new update and seasons is realised today. But somehow seasons won't install on my computer right now (😭💔). Anna asked if I wanted to eat with them so I went up to her family and ate midsummer dinner and cake, we headed out a while and then I went home to cuddle Nea and Meeko who had stayed home. After a while I made my brownies with strawberries, got a glass of wine and have been playing Skyrim since 😎 #happymidsummer
I love snapchat filters... why? Because they hide chronic illness. They hide the tired eyes, the bags, the wrinkles, the breakouts, they even mask the pain. Looking at this pic you wouldn't know that there was shooting pains in my forearms, stabbing aches in my neck and back, numbness in my feet and toes and tingling in my legs. You wouldn't notice that I was extremely nauseous, you wouldn't notice that I was just a moment away from giving it all up. Snapchat filters are great. I don't have to worry about people saying I look like death because the filter gives me colour, 10 hours restful sleep and zero pain etc.