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#buddybeads

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TPN, dream catcher from Cassie 💖 and buddy beads that are so long they go out the picture. -I have been sent so much more stuff by different people and I'm so so grateful and happy they have done! I just don't get why I deserve it! - with the buddy beads these were only since the last 2/3 months and the bits I remember so there's probely more. However since it calculated to so many I asked not to be sent all the number of beads and for them to be cut down a lot! I hate taking people's money and time and asking for stuff. I love seeing others being over joyed with something and I felt and feel greedy for the amount I got and the amount of beads that calculated to the numbers it did. I'm so thankful for what daisy gave me and that she listened and gave me still way to many! But we found a way to get the number down!! I'm beyond grateful for everyone and for something to mean so much for everything. It's strange looking at it as it shows how hard the last few months have been which most of you will know is mainly in hospital. But in a way it's comforting to know I managed to get through it all. Please check out daisy and the amazing thing she's doing called #buddybeads @daisymayrobson 💖💕 - the beautiful dream catcher (which is acc in my fav colour) was sent to me by one of my good friends Cassie! I'm not sure why she just said she was sending me something it cane with a beautiful card and I'm really am so grateful and so fortunate to have such good friends - Chloe

~The good things in life are better with you!~
Looking a bit windswept and utterly exhausted but this day was so lovely!!!☺️✨
I am finally home from the hospital🏩 so will try and do an update tomorrow as it might take a while to try and explain everything🤔
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #epam #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

My Buddy Beads
To most people this is a pile of beads that signifies nothing but to me, it's my journey with chronic illness. These beads show just what I've been through the past few months alone. They show weeks spent hospitalised, numerous trips to A&E with different issues, countless seizures, numerous weeks spent with an NG feeding tube, countless IV lines, countless IV fluids and medications given, many rides in an ambulance, anxiety issues alongside many others. Not only that but it shows the accomplishments I've had in the past few months. Entering a beauty pageant, raising awareness of issues, donating to charity, fundraising and so much more. My buddy beads show just how strong I've been the past few months and truly tell a story #buddybeads #chronicillness #chronicsymptoms #spoonie #spoonielife #braverybeads #beadsofcourage #mystory

Yesterdays winner was @dylan_vaquer who will be todays lucky winner?! Todays giveaway is all about friendship and sharing. Enter to win these two BUDDY BEADS. All you need to do is like this post and tag your friend. It can be your best friend, your glass friend, or just someone you met today. Its all about spreading the love and showing you cared enough to think of them and enter yourselves into winning some FREE BEADS to share. One entry per page please. #Tagafriend #likethispost #Freebeads #freestuff #sharingiscaring #bestfriends #buddybeads #friendshipbeads #dreadhead #dreadbeads #ommp #541 #supportlocalart #BorOregon #giveaways #givebacks

~ She would not show that she was afraid. But being and feeling alone was to much to face. Though everyone said that she was so strong. What they didn't know was that she could barely carry on. ~
Today has been rough, stomach pain that was just excruciating😖 I had no bowel sounds but he weekend on-call SHO doesn't even normally work here and he just wasn't bothered🙄😡😤, a massive seizure which involved me meeting with the floor once again. Luckily mum saved my head🙌🏼 So the doctor👨🏽‍⚕️ had to give rescue medication💉.
Lots of tears😭 today about missing home, missing all my family and just missing all the stupid little things that we all take for granted.😏😕
Tomorrow is a new day and I will have pulled my self back together, put my smile back on and will be back to fighting this illness🌸👊🏼✨ I will not be defeated, I haven't come this far to give in now💜💜💜
It doesn't help when you've been pumped full of Morphine, Midazolam and all sorts of other medications💊
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #epam #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

Dave keeping me company whilst mum has gone to the shop🐻 (He smells just like my Joshy) Just moved wards, waiting for neuro to come give me a quick MOT and trying to sleep off all these seizures😴 I feel like I have been kicked up and down a football pitch a thousand times😰⚽️🤕 The Morphine isn't even beginning to touch the agony that I am in right now 😭😭😭 #daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #life #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #diazepam #supraventriculartachycardia #svt #verapamil #painkillers #hospital #migraines #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

MOST RECENT

~The good things in life are better with you!~
Looking a bit windswept and utterly exhausted but this day was so lovely!!!☺️✨
I am finally home from the hospital🏩 so will try and do an update tomorrow as it might take a while to try and explain everything🤔
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #epam #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

~Feelings never do make sense. They get you all confused. They drive you around for hours before they drop you right back where you started.~
How can I even explain to anyone how I am feeling when it doesn't even make sense inside my own head😣 I am constantly torn between a thousand different directions and I am struggling so hard tonight to figure what the best thing to do is😓
I know what I am fighting for, but that doesn't make it any easier💜 #daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #epam #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

Day 21:
Just been into see the Consultant, was the first person of the day which was good so there wasn't lots of waiting around😀 Going back into VT next week which I really am not looking forward too, I feel like I have been so confined enough the past few weeks anyway and now to be shoved in room for five days straight is going to be hard mentally!🙄😓 High levels of Ammonia have been found in my blood so that is an important thing to sort out and figure out what's causing it exactly😕 Still need to be seen by the Autonomic Specialist and have all that testing done😬 So just more and more testing, messing with medications and waiting for results of tests🙄 It is a long boring process but my body literally cannot take another intubation😓
Heart Conditions, Chiari Malformation, Memory issues, EDS, Gastroparesis (not officially diagnosed), Asthma and a whole bunch of other conditions to juggle as well as trying to get my seizures under control.... is defiantly easier than said!! Sorry for being so negative at the moment but it's all just such a struggle!!! #daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #epam #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

~Old picture~
Got a very busy three weeks coming up🙃
I have 7 District Nurse appointments (to carry on treating my foot until the Plastics get in touch), my Pre-Op at BMI Nottingham, Dietitian (Hopefully get my calorie drinks changed to something else that might be easier to stomach🤢 & discuss a lot of other issues), the next day I have my surgery, seeing my Autonomic Consultant the NHNN (which might be a phone call instead of going all the way down there as we know my seizures are going to go crazy after having my operation), seeing my local Neurologist and then last but not least meeting back up with my Cardiac Surgeon to try make some head way😶😶😶
Going to be totally and utterly exhausted BUT at least a lot of the 'little' issues are beginning to get sorted!☺️☺️☺️ #daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #lphenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #diazepam #supraventriculartachycardia #svt #verapamil #painkillers #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

Just today's Chemist run💊😂💊😂💊
Been to see my GP today as we needed to have a medication review👨🏽‍⚕️ A 10 minute appointment soon turned it 35 minutes🙈 Within the first few minutes of being in the room he was on the phone making an Emergency referral to the Plastic Surgeons as he was disgusted about everything that has happened with my foot😧 He then started talking about my Knee and wanted to know what happened last time I saw my Orthopaedic Surgeon. The problem with having the MPFL surgery is that if I have a seizure within the first few weeks of having it done it will mess my knee up permanently. So I need to get to Chalfont, before having the surgery, to have another batch of tests done to try control the seizures better, but before I can do that I have to have my foot sorted😳🙄 So this burn on my foot is literally holding my entire 'treatment plans' on hold😡 We went through all my medications checking the doses are all up to date on the system. Then chatted about everything that has happened the past couple of months!

#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #lphenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #diazepam #supraventriculartachycardia #svt #verapamil #painkillers #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

Yesterdays winner was @dylan_vaquer who will be todays lucky winner?! Todays giveaway is all about friendship and sharing. Enter to win these two BUDDY BEADS. All you need to do is like this post and tag your friend. It can be your best friend, your glass friend, or just someone you met today. Its all about spreading the love and showing you cared enough to think of them and enter yourselves into winning some FREE BEADS to share. One entry per page please. #Tagafriend #likethispost #Freebeads #freestuff #sharingiscaring #bestfriends #buddybeads #friendshipbeads #dreadhead #dreadbeads #ommp #541 #supportlocalart #BorOregon #giveaways #givebacks

Mine and Joshys new baby has arrived🐱😍 Welcome to the family Itsy!!!! ~Update~
Been feeling just pure awful, deflated and so so so much pain since being home🏡🏩 Normally by now my body is back to its semi working state😂 but this time it is taking so much longer🙄😏 It makes me frustrated at myself and at my body! But everyday is a new one and every day I will get stronger and stronger. I know that for a fact😜👌🏼😉 #daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #lphenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #diazepam #supraventriculartachycardia #svt #verapamil #painkillers #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

~💫💙You are my best friend, my human diary and my other half. You mean the world to me and I love you.💙💫~
Looking absolutely awful!!😷 Swollen puffy face from some sort of reaction, migraine coming on, pain all over and nausea BUT this boy is the most amazing person I have ever known☺️😁 Wouldn't have been able to get through a lot of things the past 10 months without him by my side👫 Love you forever and always bubbs💖💑✨
~❣️I choose you and I'll choose you, over and over and over. Without pause, without doubt, in a heartbeat. I'll keep choosing you.❣️~ #daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #lphenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #diazepam #supraventriculartachycardia #svt #verapamil #painkillers #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

Loving the chronically ill life!! 🙃
Finally got a canular in after an hour trying, so they might be placing a Picc or Hickman. IV antibiotics AGAIN! X-ray to see how badly in the bone it is and then seeing the orthopaedic doctors🙄 Well done body for failing again 😫
EDIT: so this only just updated as I has no signal in A&E. Lincoln didn't really know what to do next, as it's a bit past them! So been referred to a different Plastic Surgeon and awaiting a call from them to go in. So back home for now luckily!!!! #daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #lphenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #diazepam #supraventriculartachycardia #svt #verapamil #painkillers #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

Why would anybody want this life?
Of being chronically ill!!🤒🤕
Of being unable to work and study📚, not being able to do all off the things that make you happy🤣, having to see Hospital🏥 after Hospital🏥, injections💉, Doctors👩🏽‍⚕️👨🏼‍⚕️, feeding tubes, catheters, pills, pills and more pills💊, oxygen masks, fevers🌡, sleepless nights😫💤, so much pain it makes you cry😭, needles💉, ICU visits🏨, losing friends, more diagnosis then you can even remember and fighting day after day to be happy with what you have!!!
Anybody who wants this can very easily take mine or any of my spoonie sisters illnesses👌🏼 #daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #lphenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #diazepam #supraventriculartachycardia #svt #verapamil #painkillers #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

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