You hit my feed today. Didn't feel great for a few years but at 58 had levaquin and things got much worse. People at grocery insisted I use mobility carts. The shower thing,had to cut hair short,had trouble eating,seeing,driving so after 39 years couldn't be a nurse, needed help from reluctant son.housework didn't get done esp in 2020 when very sick twice. Every day is a struggle. Bright spot is rescue dog who is protective and aware of how I feel, makes me eat, sleep,gets out of my way or presses on legs to steady me,lifts me from floor... still won't do house work but.. after being gaslit tried myasthenia med and some days ate better. Hard thing is many think my life should be over at 66. Had a whole different life planned out for this time. Definitely grieving

Thank you for this I have said this to my kids and cried so many times. I can't watch my grandkids anymore. I have fainted in front of my grandson and scared him to death. He called his mom, my daughter, right away thank goodness. Then using a walker just tough. I can't drive anymore either. I totalled My car from having an episode . I have a shower chair too... Just all the things! So many things are different now. 😢 It really has helped me since I have found other people like you! I don't feel so alone. Totally grieving my independence. I am 55 and live with my dad now. I thought I could be a help to him and instead he is helping and taking care of me😢 I just saw videos about service dogs and am going to get one.

Thanks for being vulnerable and sharing about your experiences. Even though I don’t have the same chronic illness as you, I can relate to a lot of the emotions that you’re going through. I really appreciate your perspective of being gracious with yourself when your body doesn’t always do what you want it to.❤️

Thank you for sharing!!! Painfully, I understand how you feel!!!! I have "blackouts" & chronic pain" because of "sleep derviation"!!!! I MUST sleep (8) hours everyday and not allow my body to be tired or fatigued. Thank God I have "auroras" to let me know that I will be having a "blackout"!!! I can still drive and live independently!!! But my family don't understand that I'm a "disabled person"!!! They want the "old" person "before" my disability!!! I have to say "NO" to my family concerning traveling, visiting, shopping, driving and coming home during the Hoildays!!!

Thank you for making this. I've been looking for people talking about this kind of thing, and your video has made me feel less alone

Your video really touched me and you are so damn brave. I love the distraction using make up as when I think about my own past life I crumble. You are showing remarkable strength and I am in such awe of you. For what it is worth, you inspired me to react better to my own limitations. And also f*ck anyone that doesn't hire you because of how you are now. That is on THEM. You are the best of us. Xxx

I get exactly what you mean. I was diagnosed with fibromyagia, me/ cfs 12mths ago, i was diagnosed with vestibular migraines due to otosclerosis. Im still finding it hard to grieve my previous life. Im 51yrs old. Ive also had 3 very difficult foot reconstructions in the last 3yrs. Im still struggling to cope with my conditions. I still keep thinking like there has to be a reason i feel so crappy all the time. If i get a virus or infection you can guarentee im going to flare up. I never know when a flare up is coming, as im constantly fatigued. I never go out, im scared to go out alone, i have passed out before. I walk with a stick. I hate myself, i feel like a burden on my husband. I feel you so much, i feel the same but i dont know how to grieve my old life... thank you for making me feel like im not alone xx❤

I hope you're doing well ❤ It's been a while since your last video, I noticed, so yeah! I hope you're okay 💓 I came across this video and mentioned to my therapist about it. I had been speaking with her about the grieving process that one goes through living with chronic illnesses and then BOOM. This video pops up! It's really rough living with multiple chronic, incurable illnesses. I am so hurt by the grief that I can't even cry. I just dissociate because I get SO depressed thinking about all that I've "lost" and all that I've ever wanted but will never have 😅 I think the most difficult thing for me is having to step away from higher education because I love learning. However, I have come to terms with the fact that distance learning is going to have to be my jam once I'm well enough to go to school again. In the meantime, I am self-taught with many things. Linguistics, Foreign Languages, Sociology, Psychology...those are my favourite things to study so I just...study in bed most days and it does make me happy 😁 I think that a lot of us chronically ill spoonies have a lot of internalised ableism as well that we have to get rid of but that internalised ableism is not because we really believe these things, it's because--like you said--people suck and make us think that we are failures and worthless and meaningless to society because we "don't contribute" lol However, we cannot change the fact that we are chronically ill but others CAN change how they perceive, view and think about us. I used to also be in education as a TESOL instructor and I had to leave my job and stop my continued education because of my illness and I don't think I ever really thought about how negatively this impacted me. I will talk about this in therapy today, I think 😄 Thank you so much for this video. I really feel seen with this and can relate so much but I don't want to make this comment any longer than I already have 😂 Anywho, hope you're thriving as much as you can. I have POTS as well and all we can do with this condition is try our best. And, like you said, when we fall, what matters is that we get back up and keep going ❤

I have P.O.T.S has well along with Fibromyalgia and Non Epileptic Attack Disorder. I’m also autistic and suffer with OCD and PTSD so as you can imagine I am living my best life. I’m so glad you made this channel, chronic illnesses (especially invisible ones) need to be talked about more. I constantly think about what my life was like before these disorders affected me. I have obviously always been autistic so I don’t know any different but my other disorders only flared up when I was around 15 and the fibromyalgia has even been as recent as 2020 so I remember a life without them. I grieve being able to get up and not feel pain, I grieve being able to stand up without needing to sit down after 30 seconds. I get so many judgemental looks when I use my walking stick and have even had comments about being “too young” to need it. People just don’t understand what it’s like to live with a body that does not function how you want it to. I want to be a midwife but I have had to completely change my course of life because there is no way I can do the long shifts on my feet all the time with the possibility of a seizure or fainting spell happening. This video has voiced everything I have felt even down to the doctors acting like I’m exaggerating. I now have a job at the library but can only work four hours a week due to my disabilities. I love my job and it suits me perfectly. Another thing I HATE is when people are like “I wish I only had to work four hours a week” or I had a paramedic say “I’d love to sleep twelve hours a day” when all I want is a normal life. Thank you for this channel ❤️

thx so much 4 sharing.

It's OK to cry. You are facing a hard thing. You will find ways to cope, but feelings are hard, and everyone grieves in their own way. I have a suggestion for the leaving the house thing, have one day a week that different people ,or the same one, that is for you. My neighbor can't drive, so I give him Tuesdays. If he has a doctor appointment or grocery run or anywhere he needs to go, he knows Tuesday I am available for that. We live in a rural area, so no ubers or taxis. It works for us both. I too went on the "I can't find anything wrong with you so you must just be a hypochondriac" doctor tour. Turns out I was sick and live with multiple autoimmune conditions. The doctors don't always know what they're talking about. I wish for you answers, and love. With your teacher degree, you could do online tutoring, or private tutoring.

❤

Thank you for sharing your thoughts and experience with a chronic illness. Bless you!

Ohhh I totally get this. My pots started episodically too.

Being gracious with yourself is so hard, but so important. Thank you for continuing to share your journey. 💖

Sending you all the love and strength in the world!

You're a very brave and beautiful person. Hold strong! 🤍

💜💜💜💜💜💜

I was 8 when I became type 1 diabetic so I don’t remember much. But my vision loss which is what happens as a side effect. I also cannot drive and I hate it so much. I hate asking ppl to take me anywhere. I have ptsd and anxiety so bad because I have no peripheral vision at all. I absolutely feel where you are coming from. I also have Graves’ disease so I have heat intolerance as well.

Hi I admire your courage to talk about grieving your life before your disability. You should look into juicing I think it will do wonders for you. Stay blessed 💜

I have chills with how much I can relate to this. My health is a lot better now I started seeing functional medicine doctors. Feel free to reach out with any questions.

I don't know if you heard, but Halsey has recently spoken about just being diagnosed with P.O.T.S. I don't know if that would be a comfort to you, but she suffers from endometriosis as well which helps me in my experience. Sending much love

Anyone who wouldn’t want you as their child’s teacher because of your disability can eff off. What about special education? There’s a huge shortage of providers for special needs kids….

I know you want be a teacher 👩‍🏫 my partner teaches hs sped online partly because of my disability so it can be done ✅ 🫶🏼😁 I feel you… 🥲 Had a stroke as a new RN So I get rethinking your life…