Double tubie for a little while got me looking like a Chinese dragon or something🙄🐲➿
The last 10 weeks impatient have consisted of … Basically daily living hell..near death experience, Multiple daily injections, vitamin, iron and sodium infusions, 7 tubes, feeds, allergic reactions, fits, 21 cannulas, burst veins, procedures, scans, daily bloods, fentanyl, ketamine and heavy duty pain relief/ medication, infections, funny turns, the smell of sanitation, vomit, a ton of pain and lots lots more… I have lost the ability to swallow, therefore to drink or eat anything- even if I felt like food and was prepared for the consequences eating would do to my body (due to developing a severe form of gastropariesis-paralysis of the gastrointestinal tract which is common in those who have severe ME; destroying the autoimmune system leading to autonomic dysfunction or complete failure-therefore causing the sufferer to develop more incurable complex horrid diseases.) I now can’t even taste food or drink; or even hold a mint or sweet in my mouth without having severe sensitivities or an allergic reactions and saliva pooling out of my mouth because I’m unable to swallow it. I’m struggling with tube feeds- my stomach and bowel are now both giving up on me. Unfortunately I manage to still puke with my NJ tube (bypassing my stomach into my small bowel) and vomiting it up which apparently should not happen… But this girls body finds a way!! I’m yet to know the next stage of my nutritional intervention. Doctors are reluctant to resort to a PICC or Hickman/central line and begin TPN due to risk of infection because of my poor immune system and my body also rejecting my last resort. My bowel MRI showed some abnormalities in the right colon which was completely unexpected because it doesn’t add up with my symptoms and previously diagnosed conditions. Possibly more investigations and procedures if my body is strong enough next week. Hoping this new discovery could lead to some more answers.
Life is a constant bumpy road and recently full of tons of knock backs and hardship. But life would be boring without an adventure right?
As we know, there’s no magic wand, but despite the many negatives, there’s many positives. Ironically more positives than negatives in this horrid situation that I happen to be caught up in!
I forever remind myself that “Everyday may not be good, but there’s always something good
In every day.” Sometimes,the good maybe hiding but it will always be there every second of the day-you’ve just got to search through the thick fog, look beyond that heavy storm and think of the beaming sun behind the darkest of clouds- it’s always there, it’s just not visible until the day gets brighter. Then everyday will begin to stay bright despite the darkest and heaviest storms because you’ve already seen beyond the ugly; seeing the beauty in your surroundings; in everything and everyone. ✨
I live by that motto, it’s personally helped me so much.🤗
Embrace the bad and make it great guys.💫 whatever situation you may be in 🤗❤️❤️
Stay strong. Fight on.
#severeME #myalgicencephalomyelitis #gastropaerisis #fibromyalgia #POTS #potsie #chronicillness #chronicpain #hospitallife #njtube #njtube #tubie