Beth Tsangarides 🦋❤️‍🔥♿️

Gonna be singing this song in my head when I have my next mri which probably won’t be too long ib @Kat with wheels 🧷🧶🍃 #chronicillness#mri#pots#scoliosis#njtube#drainagetube#mecfs#skincondition#skinflareup#allergies#mcas#eds#slowtransit

I may always seem positive and like I’m keeping it together but I can promise you now I have my bad days. Over the last couple of days it all caught up with me. I nearly lost my life and I will now carry a scar round with me as a constant reminder of what I went through. What I survived. The battle isn’t over yet but I think people need to remember that you never know what people are going through #chronicillness#tpn#drainagetube#piccline#midline#pots#mcas#scoliosis#slowtransit#feedingtube#mecfs#eds#hypoglycemia#tpnnutrition#illnessjourney#allergies#hospital

Needed to get this off my chest. 6 years suffering. It’s not fair. I’m in pain #skincondition#flareup#eastkenthospitals#kent#thanet#ashford#immunology#kentandcanterburyhospitals#chronicillness

It may seem small but we were not expecting me to be able to sit up this soon. Having the pegj surgery we knew it would set my mobility back to the start but I am determined to prove everyone wrong ! I’ve never experienced this level of fatigue and pain before I wouldn’t wish this on my worst enemy. The swelling and bloating and gas is still there and not going away yet But one step at a time. I’ve got this 💜♿️🦋🦓#chronicillness#pegj#mcas#pots#mecfs#eds#mobilityloss#scoliosis#hypos#gastroslowtransit#nj#drainagetube#rarediseaseawareness#recovery#feedingtube#giveyourselfareason

Gonna have a cool scar though I guess…🥲 I have so many drains in my body right now and I’m now on tpn for nutrition due to them not trusting putting another tube in yet. I hate my body #chronicillness#feedingtube#mcas#pots#pegjtube#tpn#tpnnutrition#mecfs#scoliosis#drainagetube#gastroslowtransit#eds#skincondition#hypoglycemia#allergies#skincondition#illnessjourney#surgery

I couldn’t of asked for a more perfect engagement 💍💜@Sasha 𓆉 you are my rock and I am so lucky to be your fiancé and I can’t wait to be your wife 🦋#chronicillness#engagement#wlw#njtube#drainagetube#allergies#mecfs#scoliosis#skincondition#lgbt

I did it !! I sat up on the side of the bed for the first time in 9 days. I will not let my illness beat me. We were expecting me to be bed bound for weeks post surgery and I know a flare could hit me at any point in my mobility but I will keep fighting until it does. I’ve got this 💙🦋♿️#chronicillness#pegj#mcas#pots#mecfs#mobilityloss#scoliosis#hypos#eds#nj#gastroslowtransit#drainagetube#allergies#skincondition

8 cannula attempts, 2 infiltrated with the sedation. Was wide awake pinned down because it didn’t work. 3 attempts to put the nj in Honestly so much more. I hope this is the last nj and drainage I’ll have to have before my pegj next week #skincondition#chronicillness#njtube#rylestube#drainagetube#mcas#pots#eds#scoliosis#hypoglycemia#mecfs#chronicfatigue#me#airborneallergies#fyp#foryou

My pegj surgery vlog from last week ! Now on day 6 of recovery ❤️‍🩹 so nice to eee my face again without the rubes taking it up and I am slowly adapting to life with a surgical feeding tube #pegj#nj#drainagetube#mcas#pots#skincondition#hypoglycemia#mecfs#eds#gastroslowtransit#allergies#

Filming this gave me the motivation to get my fluids and meds done. My skin is in agony #chronicillness#njtube#drainagetube#pots#mecfs#allergies#skincondition#flareup#scoliosis#hypoglycemia#anaphylaxis#illnessjourney#fyp#foryou

It’s so swollen I can’t even see out my right eye One of the worst flare ups I’ve had in months. When will I get a break #chronicillness#skincondition#allergies#njtube#drainagetube#flareup#mecfs#pots#mcas#scoliosis#hypoglycemia#fyp#boom

unfortunately Beth was rushed into hospital unable to breathe and went straight to emergency surgery on Friday evening last week. She had open abdominal surgery and was kept on a ventilator overnight to help her body try recover. She had suffered a rare complication from her pegj surgery and sadly the feed had actually been leaking through her whole abdomen, even putting pressure on her diaphragm and she also had fluid in her lungs. The doctors had never seen something quite like it and The infection had spread through her whole body so they opened her up and cleaned out as much as they could. Up until Friday Beth just thought she had a small infection on her pegj site and was told all the extra pain she was in was just gas from the procedure. However it was much more serious than that and she could of lost her life if it wasn’t for the surgery. With how severe the infection was the surgeons made the decision to remove the pegj so now Beth is going to have to rely on TPN to keep her going. She is starting this shortly and we are all praying she does not have a reaction to it and it allows Beth to gain some extra weight and strength. There are now a lot of specialists looking after Beth trying to figure out a plan to go forward and as you can imagine this has been a lot for Beth to take in and she is struggling a lot mentally and physically with all the news. They are trying their best to keep her stats stable but she is relying on a lot of glucose fluids, antibiotics, meds and oxygen to keep her “stable”. She has 3 drains in her abdomen to help clear anything else out and a drainage tube back in to prevent her being sick. They finally fitted a catheter to help manage her incontinence and as you can imagine Beth is in excruciating pain and barely able to move much We will know more soon but I know Beth would want you all to be kept up to date and a lot of you were worried about her as she hadn’t posted for a couple weeks. This was because at home she was just in so much pain from the initial infection and she was focusing on recovery but unfortunately things got worse and she never expected to end up needing emergency surgery and that she’d lose the pegj. Thank you for all the lovely messages checking in on her! She is a fighter and I know she will fight through all of this - Sasha 🦋💙

Love getting my hair done 💜even matched my tubie tape #chronicillness#njtube#drainagetube#mcas#allergies#skincondition#pots#eds#mecfs#gastroslowtransit#scoliosis#hypoglycemia#lifewithchronicillness#hairtransition#transition#newhair

I’ll never forget the people who left me alone at times I needed them the most ❤️‍🩹#chronicillness#njtube#drainagetube#skincondition#pots#mcas#mecfs#hypoglycemia#anaphylaxis#ilogeyouimsorry#slowtransit#catmum#foryou#fyp

Tomorrow I get my PEGJ surgical feeding tube and hopefully this will mean a more stable nutrition and med schedule. I hope it gives my skin a small break. Even though it won’t stop the flare ups it will hopefully minimise the amount of times it flares. I’m very nervous but I have an amazing support system and I can’t wait to see my face again without them #chronicillness#njtube#drainagetube#mcas#skincondition#pots#eds#mecfs#hypoglycemia#gastroslowtransit#scoliosis#lifewithchronicillness#pegjsurgery#pegj

1 week post PEG-J So let’s recap….. the pegj surgery took over 2 hours and unfortunately coming out of the procedure I began seizing, this then led to every few minutes I was seizing…. It got to the point where my oxygen was dropping so much so they made the decision to put me on a fentanyl pca(Patient-Controlled Analgesia) to try control them. This worked to a degree but unfortunately by the end of the first night I had over 30 seizures.The pain was extreme. I was pumped with over double the amount of air due to the position of my stomach being dropped. And having scoliosis made it hard to find the position they needed.My pain was out of control and I’m not going to lie I was in so much pain I was begging them to take it back out because I couldn’t see how I would get through the next few days like that. As much as the heavy sedation was used and they gave me the maximum they could I was still stirring during the procedure and kept trying to move which caused me to relive that pain of being awake over and over again every time I tried to close my eyes.I was in hospital over night and they wanted to keep me in longer but my surgeon believed it was safer for me to go home due to the amount of reactions I was having in the hospital because of my allergies.Unfortunately my care was not planned ahead and my consultant who signed of on the pegj hadn’t informed the right people so the nutricia nurses and hen team were not aware I was having it at the time.This meant I wasn’t able to have the drainage bags and I’ve been sick every night because the hen team are refusing to prescribe the drainage bags due to not wanting to care for me because of my complex health. They never offered support when I was nj fed and drainage as they hate drainage tubes in the community.Thankfully my amazing hospital nutritionist has been contacting everyone for me and might of found a loop hole with my gp but I got bad news that my gp practise have made the decision to discharge due to my complex health and not being able to manage it. Anyway I’m now on day 7 of recovery and each day is getting better I’ve got this #chronicillness#pegj#mcas#pots#eds#mecfs#mobilityloss#scoliosis#hypos#nj#gastroslowtransit#allergies#skincondition#drainagetube#rarediseaseawareness

TW: TUBES !!!BGT showing some tubie representation in a weird way I guess 😂😂#bgt#tubie#njtube#rylestube#drainagetube#humour#mcas

My health has taken so much from me, my dreams, so much time, freedom, friendships and more but I won’t let it take my happiness with you #chronicillness#proposal#njtube#drainagetube#mecfs#pots#mcas#allergies#scoliosis

What happened in feb… I got engaged, I had major surgery, I moved house. Now I need my body to be nice to me and recover so I can enjoy my new home and not just be stuck in bed all month #chronicillness#pegj#surgery#mcas#pots#skincondition#eds#scoliosis#newhome#1stofthemonth