Living with an Undiagnosed Illness │My 13 years of Undiagnosed Tuberculosis
ฝัง
- เผยแพร่เมื่อ 19 ก.ค. 2021
- I’m using this channel to show more of #LifeBehindTheLens ➡️📸 The ‘not-so-perfect’ life often not posted on social media…Life with a chronic illness.
This video is all about my struggle to get a medical diagnosis 😩It took 13 years of emergency admissions, tests, hospital appointments, gruelling trial treatments and eventually being told this unknown illness was going to kill me…until on one admission a doctor did a blood test for Tuberculosis. It came back positive.
It was a battle to be believed, a battle to be diagnosed and a battle to be treated. And because of this struggle I have learnt a lot about navigating an undiagnosed illness!
FAQ:
Who are you?
My name is Tilly and I'm the original founder of @thatoxfordgirl (www.thatoxfordgirl.com). I got into and graduated from Oxford Uni whilst living with active Tuberculosis.
What's your health situation now?
I started TB treatment and finally got my life back! But in 2018 I was rushed into hospital in a life-threatening adrenal crisis. Since then the medics have struggled to get my condition under control. They now believe the TB has returned and is putting my adrenals under huge pressure.
What's daily life like now?
Daily life is a balancing act. I am on huge doses of steroid, taking tablets all through the night, as well as a hydrocortisone pump injecting cortisol through a cannula into my tummy 24/7. I have also recently recommenced Tuberculosis treatment, a combination of chemotherapy and antibiotic treatment.
What's the aim of this channel?
To raise awareness for all those superstars out there living with long term health conditions. To give you an insight into life with Addison's disease, Tuberculosis and to show you that my story is proof you mustn't give up. This is a channel focused on positivity, patient stories and coping strategies I've learnt along the way!
Instagram: @thattillyrose / thattillyrose
*I don't understand why you added such loud background music . It ruined the clinical significance of the narrative and challenged concentration acuity. Very disappointing.*
Great vid but do you think you could take down the musical score volume as I am having trouble hearing you
I appreciate you being so open. I am struggling to find help. I actually have a diagnosis, but the doctor said she doesn’t use that test and has been blowing me off since.
I have a similar story, I've had breathing problems since I was about 15. I've been hospitalized (and almost died) multiple times but they couldn't figure out what was wrong with me so they just diagnosed me with asthma. The inhalers didn't really help and it just kept getting worse. I just was extremely exhausted all the time and would also get headaches. I kept having this happen until finally just a couple years ago. I don't have trouble breathing anymore but I still suffer from extreme exhaustion. I wish I could figure out what was/is wrong with me. I've been researching what I think it could be but haven't really done much with it lately because a lot of doctors just don't take it seriously and I know it's going to be a long ride. I also am terrified of needles. I know I need to figure out and get to the bottom of it so I can either get feeling better or be able to get on disability because I just can't function day to day like a normal person. My husband has to completely take care of me financially and I feel bad. I feel bad that I don't want to go out and do stuff together. I feel bad that I have a hard time just doing daily tasks.
its good to know im not the only one feeling the burning feet
Me too! It’s called Erythromelalgia. Mine affects my hands, feet and even ears and nose sometimes. It’s awful
I think we underestimate how many gaps there are in the medical profession's understanding of how the human body works and is affected by outside factors such as viruses or drugs. Add to that a national health service that is perennially stretched, under-funded and poorly managed and it's no surprise these slightly more complex cases get pushed off as medical mysteries. Unfortunately, I have experienced that as someone with AI but there are some highly-knowledgeable consultants in the private sector who have contemporary academic-grade knowledge who will take the time to work through the testing process logically.
It can be extremely tough when you don’t fit the medical textbook! Pleased to hear you have found some consultants who understand your AI ☺️
Good work Tilly, I thought I was the only one, 12 years, but a different type, I think we have to connect, and help raise awareness, delayed diagnosis is probably the culprit bend not being able to eradicate TB, how many people did we infect during these these years unknowingly.
I would like to have contact, with as many very delayed TB diagnosis survivors to advocate
Ummm did you not hear how loud the music was lol
I’m glad I’m not the only one that couldn’t hear her for the music 🤷🏼♀️
This is really interesting, and I'm sorry the medical profession let you down for so long. Please could you turn the music down or off, it's hard to hear you at times. Look forward to hearing more from you!
Thank you so much for watching! Yes it was quite the journey, with a few medical heroes along the way but sadly a lot of let down too! Very good advice on the music thank you! Will be sure to do that in the next video ☺️
Bless you I can’t believe it took 13 years
I also had a bowel blockage lost 7 stone in weight, hit and cold sweats felt so ill , only found out I had tb because I was going on immune suppressants for my ra
Which part of the body is the TB?
@@Spiritbox12
Mine is latent TB so I don’t know where it is in my body it came up on a blood test , they said I’m not contagious but it can be if my immune system is compromised, I was due to go on immune suppression drugs that’s why I was tested for it
Thank you so much for sharing babe. I was labeled delusional mentally ill because i was treating myself with antibiotics
It’s to much trying to listen with the
Music…..🎵
You have a lovely voice
Hey i have secondary adrenal insuffienty i was dignosed four years ago the dr spotted there was something wrong and sent me to immune dr and she did blood test and discoverd my cortisol was low
Do you also have tuberculosis?
How do you recover from this? Hope you're feeling better
The music is so loud I had to turn on cc.
music very disturbing
What happened to this channel? Where is Tilly?
She has been in hospital very unwell.
this video is horrible because of the music. I MEAN...
red dead reference
Please tell me you sued all those doctors and hospitals that misdiagnosed you
Yeah can be!
Where is she ?now days.
I hate that background music!
It's so LOUD! I can hardley here you over it. TURN it DOWN! Or turn it OFF!🤨
Was interested in what you had to say, but can't stand straing to hear you anymore. 👋
turn off the music