#buddybeads

MOST RECENT

I really feel that this might be it, like I just couldn't deal with any more shit. I want to disappear and I think that if I did, it would be at least a week before it went noticed. I wanna go back, back to when we were kids, when we didn't know pain could feel like this. When we didn't know hurt and we didn't know risk but we all grew up and I guess that is it.
S****y night, felling fed up, stressed and restless.
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medic ation #epilim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

I know sometimes you might fall on your way up. Throw your hands up, you get down when things don't fall into place.
Mad at the world, yeah I've been there before. Lost and confused and thinking that you can't take anymore.... but you can beautiful💜💜💜
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medic ation #epilim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

~When you believe you have exhausted all options, remember you haven’t~
I could have very easily given up after I first got ill or after a month of being ill or after my first or 8th intubation BUT I haven’t! I’ve kept going, because there simply is no other choice.
These are just my Hospital Bands from less then the past year!!! #daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medic ation #epilim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

Had my first delivery of four 18KG cylinders of oxygen today! A big relief to finally have it delivered. It is going to help so so much when I have seizures now!
I will do an update at some point real soon!!! I promise💜💜💜
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medic ation #epilim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

~🙂Smiling has always been easier then explaining what’s wrong!!🙃~
Really fed up🤯, it’s only been two week but with Intubations🛌, lines and new lines💉, Doctor after doctor👩🏼‍⚕️👨🏽‍⚕️, lots of EEGs🧠 and different tests📝... I am just drained😪💤😴. So grateful though to have the family👨‍👩‍👧‍👦 that allows me to have my grumpy😤 moments and then helps get me back in line😃. Couldn’t have done these past two weeks without my Mummy, Daddy & Siblings💜💜💜. Oh and of course my blankets, pillows & teddies!🐻
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medic ation #epilim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

So I am being transferred to another Hospital🏩 after the Bank Holiday weekend once a bed becomes available🛌. Not sure how long I will be there for🤔 but it’s a big step forward. I’m nervous😰, scared😭, fed up😞 and don’t want to be even further away from home🏡! Will be having my Central Line taken out on Tuesday💉, as it has been in for two weeks as there is the concern of such things as Sepsis🤮. It is being changed to a permanent PICC Line💉 which will be staying in for the foreseeable future! Glad about that to be honest as it is a lot more comfortable!!🙂 I cannot be anymore grateful to the staff here🏥, they have been incredible... from the moment I collapsed in the Cafè, to being Intubated in A&E, transferred to ICU and then finally placed on the ward.☺️😊 We have only met one not so very nice nurse and doctor so far, but there is always one🙄. ALL of the other staff have made up for it though😃. I want to thank my Mummy so much for travelling a 70 mile round trip every day🚙, most days just sitting next to me whilst I sleep off all the seizures💤. I couldn’t love her anymore💜💜💜
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medic ation #epilim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

Toughest week of my life and I’ve had some pretty s****y times over the past three years! So many seizures, Intubations, AGAIN, especially midway through physio, the Physiotherapists were amazing!!!!!! Central line is getting on my nerves now, so that might get changed to a PICC Line. So many benzo’s keep being pumped into me, on 6 hourly Phenytoin Infusion. Couldn’t thank the staff anymore though💜💜💜
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medic ation #epilim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

This is the bare face of chronic Illness!! I was Intubated twice in the space of a day and I am now finally awake enough to update you all- so I was at Grimsby Hospital for a 5 day Ambulatory EEG. But before we could even get to the clinic where they put it on I went into Status. The staff where amazing, got me straight to Resus and we’re giving me all the rescue medication they could. Finally they decided nothing was working so intubation was the last resort. They did it in A&E then moved me up to ICU. I’m now slowly recovering from what was a hellish few days. Not sure when I will be leaving the hospital as they have a tonne of tests they want to do from Physio to MRIs and EEGs.
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #epilim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

A bunch of Seizures and Dislocations last night.... I am so lucky to have the family that I do have. They are up and down all night long with me, can understand me when I’m confused and settle me down when I’m panicking, they can sort out my Braces and Dislocations, and never once do you hear a huff, a puff or them getting annoyed. ~Just because there is is always someone worse off than you; doesn’t make your problems any less real, painful or scary!~
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #epilim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

There is no way on earth I would have been able to get through the past two days without this beautiful women!💖✨ From doing medication, tucking me in, holding joints in place, doing bandages and patches, going backwards and forwards during the entire night to my every shout, seizure, cry and need! I love you to the moon and back 💜💜💜
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

Had such a refreshing tea of Watermelon🍉and Strawberries🍓, accompanied by the new Tropicana essentials Vitamin Power Juice🥤(Orange🍊,Apple🍏,Pineapple🍍,Mango, Carrot & Guava). It was absolutely delicious!! I didn’t have the Root Vegetable crisps, as I was so full from all the fruit, so going to save them for relaxing in the garden tomorrow😎. Got up fairly early, well for me🤣😅, nipped to the Doctors👨🏽‍⚕️with mum and then fell asleep💤on a blanket in the sunshine☀️. I then came in as it was WAAAAAAY to hot for my POTS & Epilepsy so sorted all of my clothes👚out with the big fan on to keep me cool. Mummy🙇🏽‍♀️then put all my fresh Unicorn🦄 bedding on for me and just did some general tidying as I was beyond exhausted after two days of being up and outside.😴😴 That is the trouble with having so many Chronic Illnesses💜💚 the exhaustion and things never end and simple task of even just sitting outside can be awful, even painful at times🤕😴 Going to do a separate update about my Chiari Malformation next as I am having a lot of issues also about my Neuro appointment last week!!!💜💚💜💚💜
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

I will fight, get knocked down, stand back up again no matter how many times Epilepsy is looking for a fight. I know I will win; because I have all of the best people behind me!!!!! I don’t dream of being seizure free.... I dream of a CURE so that nobody else has to endure this awful illness and all that it takes from you!!!💜💜💜
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

~Look- I get it. When things like this happen in our lives we feel like everything around us is crumbling. Whether someone has just left us, whether we separated from some time, or whether someone has just left you at the alter. The pain, that challenge, that puts everything into question, what we’ve been striving for. What we’ve been trying to build together. But imagine this for a moment - In those situations, you’re actually letting go and being saved from a lifetime of pain. Let me explain. Imagine being with someone your whole life, externally, but internally they’re not sure they’re with the right person. Imagine spending your whole life with someone but in the back of their minds they don’t think about moving forward with you. Imagine spending your whole life with someone who would’ve left you, who feels like they should have. And remember at your best you’ll never be right for the wrong person, but even at your worst the best person will remind you of you worth. ~
#daisysepilepsyjourney #epilepsy #epilepsylife #epilepsyfighter #phenytoin #heartproblems #seizuressuck #epilepsywarrior #domperidone #epilepsyproblems #seizuredisorder #medication #eplim #sodiumvalproate #keppra #heartcondition #supraventriculartachycardia #svt #verapamil #gastroparesis #hospital #cerebellarectopia #looprecorder #chronicallyill #buddybeads #amitriptyline #kinesiologytape #tensmachine #epilepsysociety

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