Time Stamps: 00:33 - Loosing Friends 01:51 - Unsolicited advice/ questions 03:39 - Cancelling important plans/ events 04:55 - Grieving your former life 06:33 - Re-learning everything you once knew 08:34 - Needing help 09:24 - Guilt 12:21 - Loneliness 13:01 - Overlapping Symptoms/ not knowing if you’re sick enough to see a doctor 15:10 - Emotional & physical pain 19:00 - Outro Thanks for watching! Xxx
@lindadavis5668 Another thing not stressed enough in this video is how one's brain no longer works like it did prior to chronic pain due to the lack of sleep, medication side effects, mood disorders, and often the inability to think past whatever brokenness is going on in one's body. Please do not use exclamation marks to correct one's grammar or spelling. If you feel that your input is necessary, then do it kindly, not in a way as to point out yet another tiny thing one failed to do normally in their battle with chronic pain. This too is something that noone can prepare you for or understand until you are unfortunate enough to have to live it.
I work with chronically I'll people and I'll never forget when a client got severe burns from a hot pad because they didn't know their skin was burning. They just thought it was their chronic pain. Imagine that.
The "you're too young for that" line is so shit! I've had chronic back pain for 5 years. I'm 27. Only late last year did I finally get an MRI. For years I'd told my parents about it and always got told "you're to young for that." And NOW they have switched to "welcome to getting old!!" Fuck you!!! Sends love and strength to all dealing with this bullshit on the daily 💚
Work on your pelvic health!! This is an area of medicine that has been highly neglected, the pelvis is an extremely complicated joint with muscles that attach everything from your fingers and eyes running straight to your toes. Start doing pelvic floor exercises, so the muscles that are trying to stabilize your back to compensate for the other muscles that are too weak to stabilize your back can get some rest. That's where a lot of the aching/cramping feeling comes from. If you don't start doing exercises within 7 years, that shit will become chronic. Please, for the love of God, go to physical therapy with a holistic physical therapist.
@@Hyderagean a friend of mind had said the same, focus on hip flexor mobility. The current physio exercises I do mostly focus on that area. I'm just bad at getting into the habit of doing it. Although I go climbing when I can and this has helped so much with my hips. Thank you for this 😀
I distinctly remember one time that someone said that to me, I immediately countered with "Kids aren't too young to get cancer". She panicked for a second because she legit thought I was saying that I had cancer - I was 25 or 26 (so definitely not a "kid"). When she asked if I had it, I told her, "No, but my point still stands."
I had two friends start a rumor i was a drug addict, because i was sick all the time. i dont believe in doing drugs..i struggled with chronic illness. another thing I hate they say to me is "you look good, you are a pretty girl, so you're not sick, nothing is wrong with you"
Thank you for explaining. Ppl DON'T GET IT ... I've had rheumatoid arthritis ( at 7 years I had to stop working) for 17 years and family can be really cruel and petty when we're not able to go to parties or something important to them. And it's sad they won't bring the grandchildren. And they tell me it's easier if i come visit... and they don't call asking if im ok do i need anything. I don't know how anyone gets there adult children to understand. Thank God I have a good man who is there for me. Sending soft hugs and prayers to you
I agree, grieving your former self is very painful not only is it grieving your former self but also grieving the future. You thought you would have but now never will
The GUILT is IMMENSE. You try so hard to take care of your body but it's like your body fights and punishes you for it. I don't wish it upon anyone else but sometimes, when you hear people give unsolicited advice without even trying to hear you out or comfort you when you're already feeling so guilty about it, having them experience being in your body for one day would be almost liberating. That's why when I meet someone who also has chronic illness and pain, it's an almost instant connection because they understand to an extent
Well, you definitely spoke to all of the things I’ve experienced lost my abilities at 48 with H pie Laurie, Giardia and CDF and have been dealing with chronic fatigue yet. All of my test say I’m fine 🙂 I assure you I’m not fine. Multiple chemical sensitivities make going anywhere difficult Chronic fatigue is a living nightmare. 😢 exhausted yet can’t sleep. I feel so bad for my husband. Who has supported me for 30 years and thankfully he believes me. I know people whose families don’t believe them. No one would choose this.
Never getting out and missing ur past ... going from a sports player to being a angered envious person that is actually sad and missing life. this is me. I love you.
Dealing with chroic pain for over 30 years left me without any social life. I don't really miss that, though. It's expensive & requires a lot of energy I found I'd rather give to more important hobbies and personal interests of my own. Fortunately that's working out well for me. But having supportive friends, if I did, I would feel indebted to them, too. And that would make me feel guilty and just not be a healthy relationship. The few that I had, I let them go because of that. I am happy to be a loner and loving it. I just wish I had the money to buy the help--when I do need it. US healthcare system is miserable that way.
I too am happy being a looner but in my mind i always speak to the almighty god (Jehovah )found in psalms 83:18 he promises no resident will say i am sick in his new world here on earth like in the garden isiah 33:24 speak with one of Jehovah's witness to find out more ❤
I'm also looking forward to experiencing the happy/pain free promises under God's Kingdom. I have chronic issues now,but,it WILL be gone soon and that is what can give us hope to stay positive daily. My prayers are for you all out there to also find this comfort in the scriptures too.😊
Jehovahs witnesses believe Jesus is an created being/angel. Which is a complete lie. Jesus is God in the flesh. They also won't let their children or family members have a blood transfusion if they we're going to be unalive. This is very wrong. Jehovahs witness religion is lies from enemy. The guy that invented it was visited by Satan himself who appeared as a deceiving false angel. Appearing in the colour bright yellow with no glory of God on him. The guy was tricked, unfortunately writing all the lies of the enemy down. Let the eyes of the understanding of your heart be opened in Jesus name Amen.
There is so much people dont see and understand behind the illness itself. The loss of the former self and accepting a new self. You've learnt so much the hard way. I'm sure others will find this helpful on their health journey. Well done hun💖💖💖
I have fibromyalgia and migraine and little bit of arthritis in my back and neck plus IBS-C and GERD . I have major depression . When I was first diagnosed with fibromyalgia I was still able to things like walking a short distance and walking through stores but after I have a fourth and last child I can longer do those things . I have two special needs boys as well so I pretty much the one takes care of their medical issues especially for my younger child . My mom and older child doesn’t understand my conditions at all . My mom had several car accidents and falls and she believes that her pain is exactly like mine and it isn’t. I know that one of the number one things people are told to do when they are diagnosed with fibromyalgia is to exercise but how to that when you are in so much pain . I also have a visual and hearing impaired so combined all of this is extremely hard . I was always a independent person but now I need help with so many things and most of the thing I need help with I will not ask for help . When I am in a flare up there is nothing I can do but no one in my family understands that . I have no one close to me that understands me but I do have a best friend who lives two or three states away from me and we talks almost all the time . She tried her best to understand what I am going through and I can be more grateful. I need some who is going through the same things to talk to and get together with because right now I am on my own trying to navigate all of this
The guilt is a horrible feeling. Feeling like a failure and a burden to our loved ones is very destructive for us. Nothing about chronic illness and pain is easy. Hence the high suicide rate of us sick people
The worst thing is when people who “care” about you invalidate your illness and drive you to offing yourself. It took me a while to listen to my own voice
I pass out cold when I get out of the shower. Just transferring from the wheelchair to the shower chair is exhausting. Worst is not being independent and living in my own place. My illness cost over half of what I can earn.
Thank you so so much for this vlog. I cried all the way through. Relief tears I must add. My husband watched it with me and agreed that it is me too. I was also dismissed from my employment. Unfortunately I couldn't be a carer anymore. I had finally found my dream job after 20 odd years and it was gone within eight. Sending you and Chris love and gentle blessings, Jane in Herne Bay. Xxx
Thank you so much for watching, Jane and for sharing that with me. 💕 It’s so sad how employers don’t even follow the law a lot of the time. We’re having a hard enough time as it is trying to figure things out for ourselves, without employers making it even harder on us. I wish I knew my rights back then, but I had no idea I was chronically ill or disabled, as I was dismissed for so many years. I’m so sorry to read about this happening to you too. It’s their loss-and I truly hope you find all the happiness you deserve. Sending you and your husband all the blessings and love back! Xxx
I'm in chronic bladder pain for 3 years now. Yes , friends and some relatives dissappear when trouble comes. I really hate society today. God bless you
One of the scenarios that bug me are when people offer help but then disappear. An people who will ask me if they could help in any way, ANYTHING an I will honestly say "the only thing that would help me right now is money." But then you can see the look in their eye changes and they pull back an politely say something like. "Oh... well -hey I will pray for you." An then they avoid me like the plague. I have no problem with religion but it be a lie if I said it doesn't hurt and feel like the ultimate ultimate cop out of actually helping someone. So many inless fakers have made it so difficult an left people so untrusting (especially online) I understand why but it still stressful an soul shattering when I have to choose between power or the water bill some months. My life is is hell an has bankrupt me, my mother/family. Some of my step siblings hate me for it like I ruined their lives as well. Im at the end of my rope, I wish I would just pass allready so they can be free of me an my relentless illness.
I was diagnosed with fibro last October and ive never been so ill in my entire life 😩 everything in my life stopped. I can relate to everything that ur talking about as an independent person, the grief process is intense. I have found that the one thing that has been the most difficult (despite how awful the chronic illness is) is the constant battle to prove ur illness to people whether it be professional or personal and its exhausting. I never thought that people with chronic illnesses or who are disabled face so many things, I have so much more respect for what people go through. I battled for a year to get a diagnosis and the treatment i need and its not over, having to constantly go over ur story time and time again omg its ALOT! There are so many things that no one can prepare u for. Also money stresses are a big one! its awful 😔
I miss my former freedom and self, I am a type 1 diabetic with charcot's foot in booth feet, stage 4 chronic kidney disease, diabetic neuropathy and retinopathy. Trying to get my family and friends to understand I can no longer do things I used to, is such a struggle.
3:20 my biggest one is 'what happened to your knee' and i never know how to explain that it's my joints, my nerves, and my balance. Knees are one small thing on the list... Also, I am terrified of passing out or falling in the shower. I never lock the bathroom door because I am so afraid of falling and cracking my head on the wall.
Thank you for sharing this with me. 💕 People can be so judgmental. We don’t owe anyone an explanation. It’s up to us if we feel like talking about it! I have the same fear as you about fainting or falling in the shower. Do you have a shower chair? I got one a few months ago and it’s helped me to calm my anxiety when it comes to showering. Xxx
Shower chairs can be a great solution, absolutely. Another option, if a shower chair isn't feasible for whatever reason: when I started losing my balance in the shower, I realized that a shower chair would be more in the way than helpful (my legs are so short that most shower chairs are still way too tall for me even on their shortest setting, there are certain parts of showering that I really do need to do standing up, and there wouldn't be enough space for a shower chair so I'd end up tripping over it), so I got myself a high velocity handheld showerhead with a 79" hose, and a suction cup adjustable showerhead holder - it allows me to sit on the floor of the tub (I use either the sides of the tub, if both are wide enough, or the outside of the tub and a sturdy suction cup handle on the inside wall level with the outside of the tub, to push myself up from sitting - my shoulders can handle that kind of occasional strain when needed) to shower, and the suction cup holder allows me to still put the showerhead up above me when needed. Passing out isn't a concern for me, but falling in the shower definitely is, and the last place I lived, there were no handles, or even shelves/places to grab, in the shower, so after falling hard 4 times within a month (long story, but I waited so long to get them because of the type of housing situation it was), I got myself a couple of suction cup handles to use for balance when showering standing up (I can usually shower standing, but flares often require me to do it sitting; I still use those handles in the shower at my current place) - I haven't fallen in the shower since then, and that was over a year ago. Just wanted to throw that out there, in case anyone found it helpful or was looking for an alternative to a shower chair.
Stage 4 metastatic ovarian cancer... I literally had a tumor grow through my abdomen. Literally. An uncle who was with me when my oncologist discussed my chances of survival told me I needed to not cry.
Because he would feel burdened by your emotions--that you are fully entitled to feel. Unbelievable selfishness from your uncle. Men much more often than women have many problems dealing with real, true emotions & shutting them down, ignoring them, dismissing them is easier than having to face them & deal with them. This is what is called emotional maturity which your uncle, like a lot of men, lack. I sympathize with you.
I have multiple chronic illnesses that were diagnosed over the last few years and I totally relate to all this. I am now at the point where I need a wheelchair (this is coming from someone who used to walk up and down nine flights of stairs before). I sometimes get so discouraged with it but I am so lucky that the most important people in my life have understood and support me even through the loss of my abilities.
very well done. for me, the hardest things are being undiagnosed, having only rare family and friend support, and not having someone here 24/7. this is a tough way to live. but you find your own ways to get through it. and you throw something at the tv every damn time you see a disabled person climbing mount everest, because, for most disabled people, getting a shower once in a while is the real mount everest.
This is such a full list. Thank you for putting this together. I struggle to even begin telling people these things. I just don't have the energy so I just let friendships go. Sigh. I hate to be a burden.
Thank you for video. Sjögrens Disease, from Sjögrens I has acute asthma now, Osteoarthritis, Food allergies! Grieving is what I'm doing mostly now, everyday is something different. Just Thank you for seeing me. ❤
I have fibromyalgia and I felt this video so much. It’s very difficult to start the day and takes so much inner strength. Thank you for shining a light on all of us who can relate. You aren’t alone💜💜💜
I was told it was all in my head. Years later, with worsening symptoms, they finally gave me an mri. My neck is deteriorating at 33. No wonder i haven't been able to work for 8 years..... dah. So annoying lol
Unsolicited advice: The strangest advice I received while bedridden with ME/CFS was that I should cut my waist length hair. They said that all my energy was going to my hair. Can you believe it???🤪
Told me that too. But the opposite is true. I've had to cut my hair for different reasons over the years - and experience a loss of subtle energy. When my hair grows down past my mid back it returns. 😊
I cried all the way through as all this is so me. I know if I want to meet friend I text that morning and say yes or no and friends understand. I agree with the mental trauma and guilt of previous work and job and how career changed overnight. How people think they know what you feel and how much pain they think you are in is so annoying. I have FND fibromyalgia autism and realy on crutches short distances and wheelchair for longer. Due to lockdown and risk of covid tolerance of walking and pushing my wheelchairs has diminished drastically now. It been 7 years now since first started and still miss my job but job needs mobility and stamina which I have neither.
Thank you so much for sharing this with me and for watching. You totally understand and it’s definitely not easy at all! You’re doing amazing job-and I know you’re such a strong person. Hang in there, we got this! 💪🏼💕
I usually don't watch videos about chronically illness sience Amy passed away but today when I came home from the ER(i am chronicall ill myself), this video came up and just after a couple of minutes I was in tears. You described every single part of my life and how I'm feeling and I just wanted to thank you from the bottom of my heart of how you made what I'm feeling make scence. Thank you. And, also from the bottom of my heart, I hope you atleast feel okay to this day, I really hope that for you. Thank you. 💛💜
Amen sister!! 3 rare pancreatic conditions after over a decade of medical gaslighting. Was told sarcopenia because I no longer have glucagon was just sore muscles. Was asked if I was more tired than usual, but I had an undiagnosed heart condition from birth than needed a pacemaker. I said, “ no more than usual.” Ugh after a car crash caught my misbehaving heart in action on an ambulance ekg post rollover it was found my “usual” to be a bit worse than his usual. Medical gaslighting is real, and I have had to block all but one of my 6 siblings as well as my parents on my phone. I told my mom I was being put on a feeding tube for three months and was lectured about respecting my elders. I had a GI specialist not send my biopsy into a lab then falsify records after another one caught my Exocrine Pancreatic insufficiency, Gastro Paresis, and even rarer diabetes type 3c. How could I have faked this labs and EKG?? But my mom says I’m a hypochondriac and I have my lab results with my name on hospital stationery. Dear god this is hell!
Narcissistic parents invalidate everything you feel and treat their children poorly. It’s easier for them to deny your illness so they don’t have to provide support. Their children are conceived to serve them, so they will abandon us if we get sick! Gaslighting, invalidation, are Narcissistic behaviors.
Thank you SO VERY MUCH for this and sharing your experiences. Your description of the isolation being in a dark room in bed alone… ya that hit me in the gut. We miss out on so much. This whole video touched my heart. I fought for about 10 years to get a diagnosis - lupus. I realized I have some medical ptsd issues thanks to some cruel medical “professionals.” Thank you so much❤
Thank you for sharing this! I have been struggling with an illness for almost 3 years now, and it still is a struggle everyday. Gonna share this video with people to hopefully make them understand chronic illness better ❤ Wishing you the best🤗
I just found this video a year later, better late than never. I have never heard someone explain what’s it like to have chronic illness better than you ! You covered all the bases…. It is so validating. Thank you for that.😊 I’m going to go to your channel and hope to find more videos. Thanks again.
This is so spot on. I don’t mind people asking how something is going for me personally if we are already talking but otherwise indeed, please just look up the illness or condition that the person you love or interact with in any way, if you care enough, please, please look it up. You don’t mean to be a burdon when asking that and the interest you show us is very much appreciated but you can not fathom how much energy it takes most of us with chronic conditions simply because we start that day with way, way less energy than you would think if you see us moving about or just plain, see us out in public. There are A LOT of days when we simply don’t reach high enough to go anywhere, it’s like we have to climb a high mountain without the right equipment (enough health, strength, not too much pain, all that). And indeed, a shower can only happen once every few days for me so on top of feeling weak and a failure, there is a lot of shame because I feel icky and will not go out if I have been sweating too much yet again. There are times I have to rely on baby wipes for far too long. It’s shameful but the, again it’s not because we don’t choose to be icky for instance. So if nothing else, please remember that whenever you do see us, we have already climbed that proverbial mountain and still, mostly, you see us at our best. And of course we often seem way more cheerful and positive than one would assume because for me at least, it’s like I’m getting a present when I can go out and about. And lastly, something that doesn’t seem logical to many but is very real for me: I will overdo it, stay out far longer than I should if I had the discipline to do enough self-care and then I will go in overdrive and seem energetic. That part can last a while! The “but you don’t look ill/tired” or “but you are so energetic”is half of my interactions, the other half is me stuttering when I still have some control left to do anything like make a sound/try to talk and shaking and apparently my body screams for help in those moments -to me it feels like my body is fighting very hard to keep all my atoms and molecules together, I can only describe those moments as though my body will just shatter into tiny pieces if it can’t keep it all together, not just the body parts but far deeper and much more ingrained throughout every fiber of my muscles and skin, even, I can imagine it looks like I’m overreacting but trust me, I literally have no choice but trying to stay upright or trying to stay hanging, leaning, laying down, whatever, I’m working very hard inwardly at that time- my body literally takes all my energy from certain parts of my body that won’t kill me if they temporarily have no oxygen and such, like limbs won’t work, speaking isn’t possible, I almost feel the oxygen leave my muscles and skin, heart racing or me almost passing out-- I totally get that it looks like I’m acting or am overreacting, my husband has literally said to me “nobody would believe this is real if they would see you acting like this”. I’m not saying this to get some sympathy but to educate to whom it will be worth their attention. That is what happens internally and though I don’t need help -sometimes I’ll try salty or sugary things since I can sometimes have very low blood pressure but I’ve gotten my bp measured in those flares more than once and even in such a flare up I can have the perfect blood pressure, weird, I know. But what I do need in those moments is time to let my body go through that entire episode, that flare up, however you wanna call it. It scares people when they see that other part of me because they don’t know what to do. Thanks for anyone sympathizing and being supportive and understanding though, that is very nice of course. But I just wanted to share, to let you have a peak in someone else that has chronic illnesses that contradict one another, even I find it hard to believe and I live it. So that is just me, I’m sure others have this as well (I think, I can’t be the only one) but so many people have an entirely different condition, many, many of us have multiple conditions, so even if we want to tell you what we do experience with such and such illness or disorder or disability, we simply don’t know which one is causing which symptom. In that regard it’s the most literal part of all those invisible illnesses, disorders and disabilities and what not. Of course I hate that my husband even didn’t believe me and told me to stop overreacting but at that point, my energy level is already depleted and my body is trying to overcome that but I will crash and burn any moment, anywhere. Of course I try to not let that show, making my conditions look like they’re inconsistent and far too often people will think that isn’t logical (always tired but periodically seeming energetic enough) “so she must be faking it”. You never know, you never know what goes on in someone’s live, in someone’s house, that goes for everything, not just health
I love that you brought up the shower example cause it takes so much energy for me as well, and I sometimes choose to skip it in favor of doing something else with my limited energy. I’m currently waiting for my first ever doctor’s appointment to hopefully get help/a diagnosis. I might be at the ”start” of my chronic illness journey, but I already relate to a lot of it. Great video ❤
Wonderful video. You were a pleasure to watch. I’m new to all this, don’t even have a diagnosis yet, seeing a rheumatologist in about a week but everything seems to just be giving up on my body, work is getting harder every day and I live alone so I can’t stop working or I’ll be homeless. It just spirals and spirals till something has to end. That’s the scary part, what and when is the end? How long can I lay on my couch for the entire weekend? eat take out cause I can’t stand up long enough to cook? I have all the symptoms of all the autoimmune diseases you mentioned so I don’t even know what the heck is happening 🤣🤦♂️ do I have them all? Probably not maybe yep no lol ugh so much going on
Thank you so much for sharing. I am dealing with a chronic illness and looking at brain surgery in one week. I have been grieving the life I lived, as well as my brain itself. I am struggling so much dealing with these emotions and all the circumstances that surround the loss of ability. It feels really nice to have someone else sharing these feelings and letting me know I am not alone. I am also making videos for my journey to be the person that you were for me today.
@vannevers you are most welcome I really do hope things get better for you You may not be the person you once were, but you can always make new experiences Try journalism, drawing, reading, and mabye set goals for yourself to a more healthy you! I promise, things will get better for you in the end. You just need to give it time Big hugs ❤️❤️❤️
You made such a thorough video detailing every tiny detail when it comes to health issues. This needs to be presented to anyone's that wants to work in the medical field. Thank you so so much!❤❤❤❤
Thank you for sharing… I am in the same boat … and you told it Beautifully and I am going to share your video if you don’t mind with my friends and Family .💕🙏
I get so frustrated and upset with my symptoms which I try to explain to people but it feels too hard to convey. I also think sometimes that I should be dealing with it better but I am doing the best that I can. I am having to learn to be kinder to myself. I was a very active person before becoming unwell and I feel like I've lost so much of my former life 🥺
I’m so glad you shared this and it honestly breaks my heart. I would of course invite you to everything but you’re so far away 🥺 maybe one of these days I’ll make it across the pond again. Sending you so much love babe 💕💕. And i have to say I’m already so excited for your bday(completely random lol but i know I’ll need to send soon since snail 🐌 mail) 😂. Can’t wait for your next video 🙌🥰
Thank you babe and thank you for always being such an amazing friend! I’m so grateful for you and our chats everyday. I have every faith that we’ll meet in real life one day. You are always the sweetest and I can’t believe you’re already thinking about my birthday already. 😂 I’m just trying to make it through the winter haha. Love you lots!! Xxx 💕
Thank you for your video. I also have Ehlers Danlos and am reliant on my husband. I also brought a manual wheelchair and couldn’t push it myself. I was so shocked! In my mind I was going to continue my fitness by pushing myself around 😂 i don’t work anymore and hubby does help me do everyday tasks. It is isolating and a very big change. Thank you so much for your video. I related to everything you said 😊
I don’t have EDS but I have Addison’s Disease and Rheumatoid Arthritis. I was literally on the verge of despair last summer until I just accepted it and quit fighting it and shut out all the people who were giving me unsolicited advice and accept the love those around me were willing to give me. But it’s so hard
thank you so much for your video. it's fantastically helpful! I've been living with chronic illness for 3 years, sympthoms are still developing, everything, what you are talking about is very actual. All the best to you!
Thanks for making this video, so relatable I was even crying watching it! I have a different condition, that creates 24-7 pain and other debilitating symptoms and have had many surgeries as part of my illness. It also has gotten more and more challenging in time. Even making this comment is a lot, like how you said making the video was all you could do that day. Years ago I made support videos and I hope to be feeling up to making more someday. You are amazing and so strong/inspirational!
I sincerely appreciate you making this video. It is so affirming. I’m at possibly the halfway point of my diagnostic journey? I am 99% sure I have EDS. My niece was diagnosed a couple of years ago. I’ve lost a lot of friends, and most of my family members. Every point you made, is what I am living with. I’m so grateful for your video. I hope you’re doing as well as possible 🙏❤️
I hear you... Absolutely appreciate what it takes to do the video and deal with this journey ... Has been decades for me . Mighty warrior! you are. !! ❤️🌺
Thanks so much for sharing so much I have experienced a fair share of your list. It's also tough when Doctors don't seem to understand, I decided to get a new primary and I'm so glad because he has some more experience in the areas I'm dealing with so he understands so much more! I'm having a hard time relying on my parents and living with them as well as no income and not being able to get disability It's a lot some days! I'm grateful to be getting stronger even though it is slow I'm grateful to still be alive and respecting and loving my body where I am is so important. Wishing you peace and healing as well on your journey your video really got to me because I know how painful it can be at times. Thanks❤🙏
I’m Thankful To Stumble Across this Channel, First off I want to say you are strong and keep Fighting, I’ve experienced everything mentioned in this video and I have Ankylosing Spondylitis Life is going to continue to life but I pray that you get to know the Most High , He will Always be close to you even in your most darkest days , He loves you unconditionally and he is merciful he understands us when no one understands us it’s hard going through chronic illness but there is a light that will fade all the darkness and that light is the greatest light you can ever receive , All praise to the Most High and I’m sending prayers, love , healing and strength to you . Stay Strong ❤
Yes, ppl don't get it and i do not bother to explain to them bc they have no ability to understand my pain. True,my adult children coment that one hour ago i was different and could do thing . I do sink into depression with huge flare ups when i can't move hand or leg . Its been 11 years with CRPS debilitating burning pain all over my body . Cognitive mess with speach ,processing info too slow ,very fatigued .Unable to move freely,poor balance falls . Can't cook, hang the washing up . Every small movement is painful .I used to be so independent hard working ,that loss of unable to work was the worst to accept and deal with Feeling useless ,unproductive. Its so hard to lay in bed for weeks ,staring into window and hearing ppl going to places, living. Im quite isolated bc of my pain and extremely limited energy or not at all. Loneliness became my friend . Sometimes I change from bedroom to living room just to have a bit different environment. . Conversation drains me fast,leaving me terribly fatigued for weeks. I have to watch basic engagement with ppl over the phone too. I have carer and in big flare ups painful ,3mnts in row is too hard for me to have anyone here. Yes , I need theirs help but my brain simply can't tolerate movement around. Extreme sensitivities , irritation, pain feels triple and simple basic conversation takes too much from me.All I need is to be left alone. Its not my response,its the brain.Also ,I leave 5 min by car from beautiful beaches . I haven't been able to go there for 2 years. I simply can't bc to get out of the house is exhausting. If i go somewhere half way through i want to go back home to bed bc the pain became unbearable. I know, sounds weird but thats my life. I actually do more than i could but level of pain removes my motivation to absolutely zero. Im fortunate to have physio coming to my place. He always checks on my pain. If im too bad we let it go, if im ok i do very simple exercise. He is very understanding and thought me how to structure my days only with minimum, so i dnt go backwards . What really helps me is my big monthly calendar board on the wall i write appts on it. With looking at the board, Im in picture what is expected from me, if i can do it or not ,where im with my pain atm.. Usually i keep only important appts. Having days off in between to recharge bit. Physio usualy looks at the board t and questions if i can move appts around bc is too much for me. His navigation helping me a lot, as he is only one who truly understands my pain. I sink into depression too. As much i miss my old myself ,my friends i do not dwell on it anymore. I was forced to learn to live hour by hour day by day. No plans,no commitments otherwise i felt guilty and stressed. You doing great job with videos, thank you!. Im glad I found you, I subscribed it too. All the best🤗
I have vEDS. Became disabled just recently (11/2022). I was very athletic and worked in a physically intense career before I had two dissections. Since then, things only got worse and life has become quite difficult. The people you'd expect to be there where often there the least. Ironically, people you would not have expected where there quite a lot. Good points in the video. F*** EDS all types.
Yes I can relate. I've been ill for 20 years now. I have psoriatic arthritis of the spine, and chronic migraine. 7 years ago during my last pregnancy I developed sleep apnea, and it is still not properly treated, after FINALLY being diagnosed 3 years ago. Nothing I have is simple or straightforward. I'm getting massively fobbed off by my local hospital, hence my c h a n n e l. I moved near to a hospital to improve my access to healthcare and all they can do is send me to London all the time. I'm too knackered for that. 😡 I have pretty much no friends. Being sick got rid of most of them, motherhood got rid of the rest. I lost a good career. Drives you mad doesn't it? On my c h a n n e l I also have accounts of things that have caused me medical PTSD. So pretty surprised to hear you mention it too? How is your situation post COVID? Are you having the issues that I am having with healthcare? I can't get a GP appt, a couple of weeks ago I tried to get one for a flare up - asking for steroids. My appt is booked for 19 April, its the 9th today. 😔 Most likely it will be a Pharmacist that works at my surgery, or a locum that doesn't know me. Things were bad enough before COVID, they are intolerable now. My local hospital would put me in a bin if they could, I'm a write off.
I watched half of your video at this time and it's totally informative and supportive ❤ I was procrastinating to watch this video a whole year out of fear of feeling sorry about myself and that didn't happen i felt belonged and heard. Thank you for sharing ❤
i just recently started suspecting hEDS. i knew for a fact i had pots but it seemed like there was more- chronic random joint pain, chronic muscle and bone pain, joint instability, joint hyper mobility, my stomach has been hurting and it’s been hard to go to the bathroom, i’m extremely fatigued all the time and i’ve considered using a rollator/walker because of my pots symptoms and pain. only thing is i’m only 18, and i live with my grandparents still. they believe that my pain is from “the weather change” or something like that. i’ve been feeling pain since middle school- it’s not just the weather. i just don’t know where to begin. how do you just walk into a doctors office and tell them “hey i think i got hEDS” like idek man
Thank you, for being so honest and validating what always think. I would do tons of research if I knew a loved one had an illness! Most won’t even watch a short video on what multiple, overlapping things I have. I wish I had a husband, or ANYONE who would help me! 21 years and counting, plus 20 years of childhood illnesses and infections. I believe I also have EDS, and I do have too many chronic diseases to mention. I love everyone who is going there this. I also have medical PTSD and Lyme+. “Chronic” is a great book about Lyme+.
Thank u so much for this vd, it's really helpful in many ways especially how u talk about these difficult things in our situation with confidence makes me feel more open to search and accept more things in my life ❤ thank u
I think I had EDS symptoms since birth as the first signs were not doing certain things on time e.g. holding my head up, rolling over etc. Unsurprisingly, my memory of this time isn't great 😂
I've done 3 years with doctors now. I've had the stuff since i was 12, it got bad ish around 25-28 somewhere. That's when i realized something more than a stomach thing was wrong. i got myself to a doctor about it at 30, and it was starting to ramping up at 31. (where my ex left me) at 32 i could no longer hold a 20 hour work week. i am 33 now and have just gotten a new doctor, social security is breathing down my neck, i start gulping air if i walk too fast. It's a very stressful situation, and right now i'm currently deteriorating quite fast. (meanwhile people everywhere is telling me to go work out, which is vexing since i loved working out) Somehow other than some anxiety i'm fine emotionally though. It's almost as if i'm already done processing most of the emotions that follow this whole ordeal.
There’s no one that can help me & I’m literally losing my mind, tired & exhausted from being in pain all of the time & it’s even exhausting talking about it again & again & I’m feeling like I’m losing the battle, it’s been too long.
Ive been diagnosed with EDS for a while. The Endometriosis diagnosis process cost me my ex-best friend of 9 years. My Neurocardiogenic syncope came around June of this year. Im now going into my senior year having my Acid reflux return from infancy, Thyroid Issues, and all of my other issues... ontop of a mean gym teacher.... In a heat wave! 😭 (Actually, any tips to help explain why going outside into the heat and DIRECT SUN is a bad idea, and its Not the Physical Therapy workouts being akward.)
Unfortunately the guilt you feel when in chronic pain and the destruction it corses the one's we love and care for can eventually after 22 years of inhumane chronic pain destroyed everything about yourself
Grieving about your former life is the worst thing. I can deal with the pain almost. But seeing pic of myself from like 5 years ago when I was like 21 - a huge, athletic hunk of a man, with huge arms, shoulders e t c. And now - a depressed sad mess that spends an entire week cleaning his house only because i can do only one room/half of the room on a given day... That's a fkin pathetic sight if you ask me
Ty but if you need help fam and those around who cares the burden can. Be lightened. My issues from the war if I am about to disappear from society I bring in my fam .if those like me goes off their meds for 2 long the issue could be catastrophic bc your other personality comes out and you see and hurt people or yourself. I am a combat vet with 12 years of tracking the enemy but you can't translate it w/o meds. Some wounds you can't see
Time Stamps:
00:33 - Loosing Friends
01:51 - Unsolicited advice/ questions
03:39 - Cancelling important plans/ events
04:55 - Grieving your former life
06:33 - Re-learning everything you once knew
08:34 - Needing help
09:24 - Guilt
12:21 - Loneliness
13:01 - Overlapping Symptoms/ not knowing if you’re sick enough to see a doctor
15:10 - Emotional & physical pain
19:00 - Outro
Thanks for watching! Xxx
So true
Losing not loosing!
@lindadavis5668 Another thing not stressed enough in this video is how one's brain no longer works like it did prior to chronic pain due to the lack of sleep, medication side effects, mood disorders, and often the inability to think past whatever brokenness is going on in one's body. Please do not use exclamation marks to correct one's grammar or spelling. If you feel that your input is necessary, then do it kindly, not in a way as to point out yet another tiny thing one failed to do normally in their battle with chronic pain. This too is something that noone can prepare you for or understand until you are unfortunate enough to have to live it.
I work with chronically I'll people and I'll never forget when a client got severe burns from a hot pad because they didn't know their skin was burning. They just thought it was their chronic pain. Imagine that.
The "you're too young for that" line is so shit! I've had chronic back pain for 5 years. I'm 27. Only late last year did I finally get an MRI. For years I'd told my parents about it and always got told "you're to young for that." And NOW they have switched to "welcome to getting old!!" Fuck you!!!
Sends love and strength to all dealing with this bullshit on the daily 💚
Same boat here except I'm 23, I feel for ya. Chronic back pain is very insidious isn't it. I feel 78 most days 😅
Work on your pelvic health!!
This is an area of medicine that has been highly neglected, the pelvis is an extremely complicated joint with muscles that attach everything from your fingers and eyes running straight to your toes. Start doing pelvic floor exercises, so the muscles that are trying to stabilize your back to compensate for the other muscles that are too weak to stabilize your back can get some rest. That's where a lot of the aching/cramping feeling comes from. If you don't start doing exercises within 7 years, that shit will become chronic. Please, for the love of God, go to physical therapy with a holistic physical therapist.
@@Hyderagean a friend of mind had said the same, focus on hip flexor mobility. The current physio exercises I do mostly focus on that area. I'm just bad at getting into the habit of doing it. Although I go climbing when I can and this has helped so much with my hips. Thank you for this 😀
I distinctly remember one time that someone said that to me, I immediately countered with "Kids aren't too young to get cancer". She panicked for a second because she legit thought I was saying that I had cancer - I was 25 or 26 (so definitely not a "kid"). When she asked if I had it, I told her, "No, but my point still stands."
@@SnowySpiritRuby ohhh I love that! Fucking savage!
I had two friends start a rumor i was a drug addict, because i was sick all the time. i dont believe in doing drugs..i struggled with chronic illness. another thing I hate they say to me is "you look good, you are a pretty girl, so you're not sick, nothing is wrong with you"
Thank you for explaining. Ppl DON'T GET IT ... I've had rheumatoid arthritis ( at 7 years I had to stop working) for 17 years and family can be really cruel and petty when we're not able to go to parties or something important to them. And it's sad they won't bring the grandchildren. And they tell me it's easier if i come visit... and they don't call asking if im ok do i need anything. I don't know how anyone gets there adult children to understand. Thank God I have a good man who is there for me.
Sending soft hugs and prayers to you
I've had a similar experience.
Exactly. Can only see my grandaughter if I go there. It’s exhausting. I don’t believe they understand how real my illnesses are. 😢
I agree, grieving your former self is very painful not only is it grieving your former self but also grieving the future. You thought you would have but now never will
This is huge. My life as I know it is over.
The GUILT is IMMENSE. You try so hard to take care of your body but it's like your body fights and punishes you for it. I don't wish it upon anyone else but sometimes, when you hear people give unsolicited advice without even trying to hear you out or comfort you when you're already feeling so guilty about it, having them experience being in your body for one day would be almost liberating. That's why when I meet someone who also has chronic illness and pain, it's an almost instant connection because they understand to an extent
Well, you definitely spoke to all of the things I’ve experienced
lost my abilities at 48 with H pie Laurie, Giardia and CDF and have been dealing with chronic fatigue yet. All of my test say I’m fine
🙂
I assure you I’m not fine. Multiple chemical sensitivities make going anywhere difficult
Chronic fatigue is a living nightmare. 😢 exhausted yet can’t sleep. I feel so bad for my husband. Who has supported me for 30 years and thankfully he believes me. I know people whose families don’t believe them. No one would choose this.
Never getting out and missing ur past ... going from a sports player to being a angered envious person that is actually sad and missing life. this is me. I love you.
Dealing with chroic pain for over 30 years left me without any social life. I don't really miss that, though. It's expensive & requires a lot of energy I found I'd rather give to more important hobbies and personal interests of my own.
Fortunately that's working out well for me.
But having supportive friends, if I did, I would feel indebted to them, too. And that would make me feel guilty and just not be a healthy relationship. The few that I had, I let them go because of that.
I am happy to be a loner and loving it. I just wish I had the money to buy the help--when I do need it. US healthcare system is miserable that way.
I too am happy being a looner but in my mind i always speak to the almighty god (Jehovah )found in psalms 83:18 he promises no resident will say i am sick in his new world here on earth like in the garden isiah 33:24 speak with one of Jehovah's witness to find out more ❤
m@@shawnmcanthony5724
I'm also looking forward to experiencing the happy/pain free promises under God's Kingdom.
I have chronic issues now,but,it WILL be gone soon and that is what can give us hope to stay positive daily. My prayers are for you all out there to also find this comfort in the scriptures too.😊
Jehovahs witnesses believe Jesus is an created being/angel. Which is a complete lie. Jesus is God in the flesh. They also won't let their children or family members have a blood transfusion if they we're going to be unalive. This is very wrong. Jehovahs witness religion is lies from enemy. The guy that invented it was visited by Satan himself who appeared as a deceiving false angel. Appearing in the colour bright yellow with no glory of God on him. The guy was tricked, unfortunately writing all the lies of the enemy down. Let the eyes of the understanding of your heart be opened in Jesus name Amen.
I feel the same, I always feel guilty having to say No and the expectations people have on you!
There is so much people dont see and understand behind the illness itself. The loss of the former self and accepting a new self. You've learnt so much the hard way. I'm sure others will find this helpful on their health journey. Well done hun💖💖💖
Thanks so much and thank you for going through it all with me. I really hope this can help others! Love you lots ❤️
I have fibromyalgia and migraine and little bit of arthritis in my back and neck plus IBS-C and GERD . I have major depression . When I was first diagnosed with fibromyalgia I was still able to things like walking a short distance and walking through stores but after I have a fourth and last child I can longer do those things . I have two special needs boys as well so I pretty much the one takes care of their medical issues especially for my younger child . My mom and older child doesn’t understand my conditions at all . My mom had several car accidents and falls and she believes that her pain is exactly like mine and it isn’t. I know that one of the number one things people are told to do when they are diagnosed with fibromyalgia is to exercise but how to that when you are in so much pain . I also have a visual and hearing impaired so combined all of this is extremely hard . I was always a independent person but now I need help with so many things and most of the thing I need help with I will not ask for help . When I am in a flare up there is nothing I can do but no one in my family understands that . I have no one close to me that understands me but I do have a best friend who lives two or three states away from me and we talks almost all the time . She tried her best to understand what I am going through and I can be more grateful. I need some who is going through the same things to talk to and get together with because right now I am on my own trying to navigate all of this
If you have Undiagnosed M.E you physically exercising will make you feel worse.
The guilt is a horrible feeling. Feeling like a failure and a burden to our loved ones is very destructive for us. Nothing about chronic illness and pain is easy. Hence the high suicide rate of us sick people
The worst thing is when people who “care” about you invalidate your illness and drive you to offing yourself. It took me a while to listen to my own voice
Spot on with all of these! Girl, I'm not gonna say how long I've gone without a shower! 🤔😬😂😂😂❤❤❤
I pass out cold when I get out of the shower. Just transferring from the wheelchair to the shower chair is exhausting.
Worst is not being independent and living in my own place. My illness cost over half of what I can earn.
Feeling pain all the time with a chronic connective tissue disorder reminded me of Nebula being tortured by Thanos.
I tell people I have a broken toe. And off they go with their stories of their pain, their doctor, yadayada. I just smile and let them go on.
Thank you so so much for this vlog. I cried all the way through. Relief tears I must add. My husband watched it with me and agreed that it is me too. I was also dismissed from my employment. Unfortunately I couldn't be a carer anymore. I had finally found my dream job after 20 odd years and it was gone within eight. Sending you and Chris love and gentle blessings, Jane in Herne Bay. Xxx
Thank you so much for watching, Jane and for sharing that with me. 💕 It’s so sad how employers don’t even follow the law a lot of the time. We’re having a hard enough time as it is trying to figure things out for ourselves, without employers making it even harder on us. I wish I knew my rights back then, but I had no idea I was chronically ill or disabled, as I was dismissed for so many years. I’m so sorry to read about this happening to you too. It’s their loss-and I truly hope you find all the happiness you deserve. Sending you and your husband all the blessings and love back! Xxx
Thsnk you. I'm down to drinking just purified water. I don't know how much longer I can last. The grief has been immense lately. And anger. 😮💨
I'm in chronic bladder pain for 3 years now. Yes , friends and some relatives dissappear when trouble comes. I really hate society today. God bless you
One of the scenarios that bug me are when people offer help but then disappear.
An people who will ask me if they could help in any way, ANYTHING an I will honestly say "the only thing that would help me right now is money." But then you can see the look in their eye changes and they pull back an politely say something like. "Oh... well -hey I will pray for you." An then they avoid me like the plague. I have no problem with religion but it be a lie if I said it doesn't hurt and feel like the ultimate ultimate cop out of actually helping someone.
So many inless fakers have made it so difficult an left people so untrusting (especially online) I understand why but it still stressful an soul shattering when I have to choose between power or the water bill some months. My life is is hell an has bankrupt me, my mother/family. Some of my step siblings hate me for it like I ruined their lives as well. Im at the end of my rope, I wish I would just pass allready so they can be free of me an my relentless illness.
I was diagnosed with fibro last October and ive never been so ill in my entire life 😩 everything in my life stopped. I can relate to everything that ur talking about as an independent person, the grief process is intense.
I have found that the one thing that has been the most difficult (despite how awful the chronic illness is) is the constant battle to prove ur illness to people whether it be professional or personal and its exhausting. I never thought that people with chronic illnesses or who are disabled face so many things, I have so much more respect for what people go through. I battled for a year to get a diagnosis and the treatment i need and its not over, having to constantly go over ur story time and time again omg its ALOT! There are so many things that no one can prepare u for. Also money stresses are a big one! its awful 😔
You will be okay
Things will get better
❤❤❤
I miss my former freedom and self, I am a type 1 diabetic with charcot's foot in booth feet, stage 4 chronic kidney disease, diabetic neuropathy and retinopathy. Trying to get my family and friends to understand I can no longer do things I used to, is such a struggle.
I think it comes more from they got tired of people not taking care of themselves
3:20 my biggest one is 'what happened to your knee' and i never know how to explain that it's my joints, my nerves, and my balance. Knees are one small thing on the list...
Also, I am terrified of passing out or falling in the shower. I never lock the bathroom door because I am so afraid of falling and cracking my head on the wall.
Thank you for sharing this with me. 💕 People can be so judgmental. We don’t owe anyone an explanation. It’s up to us if we feel like talking about it! I have the same fear as you about fainting or falling in the shower. Do you have a shower chair? I got one a few months ago and it’s helped me to calm my anxiety when it comes to showering. Xxx
It's been a couple of years, but just in case... Shower chairs are excellent. May not work for you, but it was a game changer for me.
Shower chairs can be a great solution, absolutely.
Another option, if a shower chair isn't feasible for whatever reason: when I started losing my balance in the shower, I realized that a shower chair would be more in the way than helpful (my legs are so short that most shower chairs are still way too tall for me even on their shortest setting, there are certain parts of showering that I really do need to do standing up, and there wouldn't be enough space for a shower chair so I'd end up tripping over it), so I got myself a high velocity handheld showerhead with a 79" hose, and a suction cup adjustable showerhead holder - it allows me to sit on the floor of the tub (I use either the sides of the tub, if both are wide enough, or the outside of the tub and a sturdy suction cup handle on the inside wall level with the outside of the tub, to push myself up from sitting - my shoulders can handle that kind of occasional strain when needed) to shower, and the suction cup holder allows me to still put the showerhead up above me when needed. Passing out isn't a concern for me, but falling in the shower definitely is, and the last place I lived, there were no handles, or even shelves/places to grab, in the shower, so after falling hard 4 times within a month (long story, but I waited so long to get them because of the type of housing situation it was), I got myself a couple of suction cup handles to use for balance when showering standing up (I can usually shower standing, but flares often require me to do it sitting; I still use those handles in the shower at my current place) - I haven't fallen in the shower since then, and that was over a year ago.
Just wanted to throw that out there, in case anyone found it helpful or was looking for an alternative to a shower chair.
Stage 4 metastatic ovarian cancer... I literally had a tumor grow through my abdomen. Literally. An uncle who was with me when my oncologist discussed my chances of survival told me I needed to not cry.
Because he would feel burdened by your emotions--that you are fully entitled to feel. Unbelievable selfishness from your uncle.
Men much more often than women have many problems dealing with real, true emotions & shutting them down, ignoring them, dismissing them is easier than having to face them & deal with them. This is what is called emotional maturity which your uncle, like a lot of men, lack.
I sympathize with you.
I have multiple chronic illnesses that were diagnosed over the last few years and I totally relate to all this. I am now at the point where I need a wheelchair (this is coming from someone who used to walk up and down nine flights of stairs before). I sometimes get so discouraged with it but I am so lucky that the most important people in my life have understood and support me even through the loss of my abilities.
very well done. for me, the hardest things are being undiagnosed, having only rare family and friend support, and not having someone here 24/7. this is a tough way to live. but you find your own ways to get through it. and you throw something at the tv every damn time you see a disabled person climbing mount everest, because, for most disabled people, getting a shower once in a while is the real mount everest.
This is such a full list. Thank you for putting this together. I struggle to even begin telling people these things. I just don't have the energy so I just let friendships go. Sigh. I hate to be a burden.
Thank you for video. Sjögrens Disease, from Sjögrens I has acute asthma now, Osteoarthritis, Food allergies! Grieving is what I'm doing mostly now, everyday is something different.
Just Thank you for seeing me. ❤
I have fibromyalgia and I felt this video so much. It’s very difficult to start the day and takes so much inner strength. Thank you for shining a light on all of us who can relate. You aren’t alone💜💜💜
I was told it was all in my head. Years later, with worsening symptoms, they finally gave me an mri. My neck is deteriorating at 33. No wonder i haven't been able to work for 8 years..... dah. So annoying lol
Unsolicited advice: The strangest advice I received while bedridden with ME/CFS was that I should cut my waist length hair. They said that all my energy was going to my hair.
Can you believe it???🤪
Told me that too. But the opposite is true. I've had to cut my hair for different reasons over the years - and experience a loss of subtle energy. When my hair grows down past my mid back it returns. 😊
I cried all the way through as all this is so me. I know if I want to meet friend I text that morning and say yes or no and friends understand. I agree with the mental trauma and guilt of previous work and job and how career changed overnight. How people think they know what you feel and how much pain they think you are in is so annoying. I have FND fibromyalgia autism and realy on crutches short distances and wheelchair for longer. Due to lockdown and risk of covid tolerance of walking and pushing my wheelchairs has diminished drastically now. It been 7 years now since first started and still miss my job but job needs mobility and stamina which I have neither.
Thank you so much for sharing this with me and for watching. You totally understand and it’s definitely not easy at all! You’re doing amazing job-and I know you’re such a strong person. Hang in there, we got this! 💪🏼💕
I usually don't watch videos about chronically illness sience Amy passed away but today when I came home from the ER(i am chronicall ill myself), this video came up and just after a couple of minutes I was in tears. You described every single part of my life and how I'm feeling and I just wanted to thank you from the bottom of my heart of how you made what I'm feeling make scence. Thank you. And, also from the bottom of my heart, I hope you atleast feel okay to this day, I really hope that for you. Thank you. 💛💜
Amen sister!! 3 rare pancreatic conditions after over a decade of medical gaslighting. Was told sarcopenia because I no longer have glucagon was just sore muscles. Was asked if I was more tired than usual, but I had an undiagnosed heart condition from birth than needed a pacemaker. I said, “ no more than usual.” Ugh after a car crash caught my misbehaving heart in action on an ambulance ekg post rollover it was found my “usual” to be a bit worse than his usual.
Medical gaslighting is real, and I have had to block all but one of my 6 siblings as well as my parents on my phone.
I told my mom I was being put on a feeding tube for three months and was lectured about respecting my elders.
I had a GI specialist not send my biopsy into a lab then falsify records after another one caught my Exocrine Pancreatic insufficiency, Gastro Paresis, and even rarer diabetes type 3c. How could I have faked this labs and EKG?? But my mom says I’m a hypochondriac and I have my lab results with my name on hospital stationery.
Dear god this is hell!
Narcissistic parents invalidate everything you feel and treat their children poorly. It’s easier for them to deny your illness so they don’t have to provide support. Their children are conceived to serve them, so they will abandon us if we get sick! Gaslighting, invalidation, are Narcissistic behaviors.
Thank you SO VERY MUCH for this and sharing your experiences. Your description of the isolation being in a dark room in bed alone… ya that hit me in the gut. We miss out on so much. This whole video touched my heart. I fought for about 10 years to get a diagnosis - lupus. I realized I have some medical ptsd issues thanks to some cruel medical “professionals.” Thank you so much❤
Thank you for sharing this! I have been struggling with an illness for almost 3 years now, and it still is a struggle everyday. Gonna share this video with people to hopefully make them understand chronic illness better ❤ Wishing you the best🤗
I've experienced this over rhe last 3 years and now my boyfriend
I just found this video a year later, better late than never. I have never heard someone explain what’s it like to have chronic illness better than you ! You covered all the bases…. It is so validating. Thank you for that.😊 I’m going to go to your channel and hope to find more videos. Thanks again.
So true I live in pain every day girl god bless you 🙏
This is so spot on. I don’t mind people asking how something is going for me personally if we are already talking but otherwise indeed, please just look up the illness or condition that the person you love or interact with in any way, if you care enough, please, please look it up. You don’t mean to be a burdon when asking that and the interest you show us is very much appreciated but you can not fathom how much energy it takes most of us with chronic conditions simply because we start that day with way, way less energy than you would think if you see us moving about or just plain, see us out in public. There are A LOT of days when we simply don’t reach high enough to go anywhere, it’s like we have to climb a high mountain without the right equipment (enough health, strength, not too much pain, all that). And indeed, a shower can only happen once every few days for me so on top of feeling weak and a failure, there is a lot of shame because I feel icky and will not go out if I have been sweating too much yet again. There are times I have to rely on baby wipes for far too long. It’s shameful but the, again it’s not because we don’t choose to be icky for instance.
So if nothing else, please remember that whenever you do see us, we have already climbed that proverbial mountain and still, mostly, you see us at our best.
And of course we often seem way more cheerful and positive than one would assume because for me at least, it’s like I’m getting a present when I can go out and about.
And lastly, something that doesn’t seem logical to many but is very real for me: I will overdo it, stay out far longer than I should if I had the discipline to do enough self-care and then I will go in overdrive and seem energetic. That part can last a while! The “but you don’t look ill/tired” or “but you are so energetic”is half of my interactions, the other half is me stuttering when I still have some control left to do anything like make a sound/try to talk and shaking and apparently my body screams for help in those moments -to me it feels like my body is fighting very hard to keep all my atoms and molecules together, I can only describe those moments as though my body will just shatter into tiny pieces if it can’t keep it all together, not just the body parts but far deeper and much more ingrained throughout every fiber of my muscles and skin, even, I can imagine it looks like I’m overreacting but trust me, I literally have no choice but trying to stay upright or trying to stay hanging, leaning, laying down, whatever, I’m working very hard inwardly at that time- my body literally takes all my energy from certain parts of my body that won’t kill me if they temporarily have no oxygen and such, like limbs won’t work, speaking isn’t possible, I almost feel the oxygen leave my muscles and skin, heart racing or me almost passing out-- I totally get that it looks like I’m acting or am overreacting, my husband has literally said to me “nobody would believe this is real if they would see you acting like this”. I’m not saying this to get some sympathy but to educate to whom it will be worth their attention. That is what happens internally and though I don’t need help -sometimes I’ll try salty or sugary things since I can sometimes have very low blood pressure but I’ve gotten my bp measured in those flares more than once and even in such a flare up I can have the perfect blood pressure, weird, I know. But what I do need in those moments is time to let my body go through that entire episode, that flare up, however you wanna call it. It scares people when they see that other part of me because they don’t know what to do.
Thanks for anyone sympathizing and being supportive and understanding though, that is very nice of course. But I just wanted to share, to let you have a peak in someone else that has chronic illnesses that contradict one another, even I find it hard to believe and I live it. So that is just me, I’m sure others have this as well (I think, I can’t be the only one) but so many people have an entirely different condition, many, many of us have multiple conditions, so even if we want to tell you what we do experience with such and such illness or disorder or disability, we simply don’t know which one is causing which symptom. In that regard it’s the most literal part of all those invisible illnesses, disorders and disabilities and what not.
Of course I hate that my husband even didn’t believe me and told me to stop overreacting but at that point, my energy level is already depleted and my body is trying to overcome that but I will crash and burn any moment, anywhere. Of course I try to not let that show, making my conditions look like they’re inconsistent and far too often people will think that isn’t logical (always tired but periodically seeming energetic enough) “so she must be faking it”. You never know, you never know what goes on in someone’s live, in someone’s house, that goes for everything, not just health
I just wanted to add that this video resonated so much with me. I am definitely showing it to my husband. Thank you for taking the time to make this.
I love that you brought up the shower example cause it takes so much energy for me as well, and I sometimes choose to skip it in favor of doing something else with my limited energy. I’m currently waiting for my first ever doctor’s appointment to hopefully get help/a diagnosis.
I might be at the ”start” of my chronic illness journey, but I already relate to a lot of it. Great video ❤
Love your video and awareness in it. Not everyone would understand behind illnesses. You are so beautiful as you are. Sending you big hugs 🤗🤗🤗 ❤️🩹💕💕
Thank you so much for watching and for your kind words! X 💕
Wonderful video. You were a pleasure to watch. I’m new to all this, don’t even have a diagnosis yet, seeing a rheumatologist in about a week but everything seems to just be giving up on my body, work is getting harder every day and I live alone so I can’t stop working or I’ll be homeless. It just spirals and spirals till something has to end. That’s the scary part, what and when is the end? How long can I lay on my couch for the entire weekend? eat take out cause I can’t stand up long enough to cook? I have all the symptoms of all the autoimmune diseases you mentioned so I don’t even know what the heck is happening 🤣🤦♂️ do I have them all? Probably not maybe yep no lol ugh so much going on
Thank you so much for sharing. I am dealing with a chronic illness and looking at brain surgery in one week. I have been grieving the life I lived, as well as my brain itself. I am struggling so much dealing with these emotions and all the circumstances that surround the loss of ability. It feels really nice to have someone else sharing these feelings and letting me know I am not alone. I am also making videos for my journey to be the person that you were for me today.
I hope life turns around for you
Things will get better
Keep telling yourself that
The universe will take care of you
❤❤❤❤
@@AspenDoesContent Thank you. 💞
@vannevers you are most welcome
I really do hope things get better for you
You may not be the person you once were, but you can always make new experiences
Try journalism, drawing, reading, and mabye set goals for yourself to a more healthy you!
I promise, things will get better for you in the end. You just need to give it time
Big hugs ❤️❤️❤️
You made such a thorough video detailing every tiny detail when it comes to health issues. This needs to be presented to anyone's that wants to work in the medical field. Thank you so so much!❤❤❤❤
Thank you for sharing… I am in the same boat … and you told it Beautifully and I am going to share your video if you don’t mind with my friends and Family .💕🙏
Thank you. Came to this conclusion as a 70 year old by myself but now the validation is very helpful.❤️
I get so frustrated and upset with my symptoms which I try to explain to people but it feels too hard to convey. I also think sometimes that I should be dealing with it better but I am doing the best that I can. I am having to learn to be kinder to myself. I was a very active person before becoming unwell and I feel like I've lost so much of my former life 🥺
I’m so glad you shared this and it honestly breaks my heart. I would of course invite you to everything but you’re so far away 🥺 maybe one of these days I’ll make it across the pond again. Sending you so much love babe 💕💕. And i have to say I’m already so excited for your bday(completely random lol but i know I’ll need to send soon since snail 🐌 mail) 😂. Can’t wait for your next video 🙌🥰
Thank you babe and thank you for always being such an amazing friend! I’m so grateful for you and our chats everyday. I have every faith that we’ll meet in real life one day. You are always the sweetest and I can’t believe you’re already thinking about my birthday already. 😂 I’m just trying to make it through the winter haha. Love you lots!! Xxx 💕
❤ thanks for the video very honest and straight forward ☺️❤
Thank you for your video. I also have Ehlers Danlos and am reliant on my husband. I also brought a manual wheelchair and couldn’t push it myself. I was so shocked! In my mind I was going to continue my fitness by pushing myself around 😂 i don’t work anymore and hubby does help me do everyday tasks. It is isolating and a very big change. Thank you so much for your video. I related to everything you said 😊
Thankyou, newly diagnosed pulmonary hypertension
This was very helpful.
Only found out last year at 53
Thankyou ❤❤
All of what you said plus the same for three of my boys. It's so hard.
In a not weird way lol I love you it's like we're living the same life ❤️
I think it’s nice that we can relate to each other because it helps us to feel less alone. Sending you so much love! 💕
I don’t have EDS but I have Addison’s Disease and Rheumatoid Arthritis. I was literally on the verge of despair last summer until I just accepted it and quit fighting it and shut out all the people who were giving me unsolicited advice and accept the love those around me were willing to give me. But it’s so hard
thank you so much for your video. it's fantastically helpful! I've been living with chronic illness for 3 years, sympthoms are still developing, everything, what you are talking about is very actual. All the best to you!
Thanks for making this video, so relatable I was even crying watching it! I have a different condition, that creates 24-7 pain and other debilitating symptoms and have had many surgeries as part of my illness. It also has gotten more and more challenging in time. Even making this comment is a lot, like how you said making the video was all you could do that day. Years ago I made support videos and I hope to be feeling up to making more someday. You are amazing and so strong/inspirational!
Thank you so much for this. I feel a bit less alone... ❤
I sincerely appreciate you making this video. It is so affirming. I’m at possibly the halfway point of my diagnostic journey? I am 99% sure I have EDS. My niece was diagnosed a couple of years ago. I’ve lost a lot of friends, and most of my family members. Every point you made, is what I am living with. I’m so grateful for your video. I hope you’re doing as well as possible 🙏❤️
What EDS type do they believe you have?
@@TechnicallyJustin my niece has hEDS; I'm pretty sure I have the same
I hear you... Absolutely appreciate what it takes to do the video and deal with this journey ... Has been decades for me . Mighty warrior! you are. !! ❤️🌺
P. S. your husband sounds like a blessing
Thanks so much for sharing so much I have experienced a fair share of your list. It's also tough when Doctors don't seem to understand, I decided to get a new primary and I'm so glad because he has some more experience in the areas I'm dealing with so he understands so much more! I'm having a hard time relying on my parents and living with them as well as no income and not being able to get disability It's a lot some days! I'm grateful to be getting stronger even though it is slow I'm grateful to still be alive and respecting and loving my body where I am is so important. Wishing you peace and healing as well on your journey your video really got to me because I know how painful it can be at times. Thanks❤🙏
I’m Thankful To Stumble Across this Channel, First off I want to say you are strong and keep Fighting, I’ve experienced everything mentioned in this video and I have Ankylosing Spondylitis Life is going to continue to life but I pray that you get to know the Most High , He will Always be close to you even in your most darkest days , He loves you unconditionally and he is merciful he understands us when no one understands us it’s hard going through chronic illness but there is a light that will fade all the darkness and that light is the greatest light you can ever receive , All praise to the Most High and I’m sending prayers, love , healing and strength to you . Stay Strong ❤
Yes, ppl don't get it and i do not bother to explain to them bc they have no ability to understand my pain. True,my adult children coment that one hour ago i was different and could do thing . I do sink into depression with huge flare ups when i can't move hand or leg . Its been 11 years with CRPS debilitating burning pain all over my body . Cognitive mess with speach ,processing info too slow ,very fatigued .Unable to move freely,poor balance falls . Can't cook, hang the washing up . Every small movement is painful .I used to be so independent hard working ,that loss of unable to work was the worst to accept and deal with Feeling useless ,unproductive. Its so hard to lay in bed for weeks ,staring into window and hearing ppl going to places, living. Im quite isolated bc of my pain and extremely limited energy or not at all. Loneliness became my friend . Sometimes I change from bedroom to living room just to have a bit different environment. . Conversation drains me fast,leaving me terribly fatigued for weeks. I have to watch basic engagement with ppl over the phone too. I have carer and in big flare ups painful ,3mnts in row is too hard for me to have anyone here. Yes , I need theirs help but my brain simply can't tolerate movement around. Extreme sensitivities , irritation, pain feels triple and simple basic conversation takes too much from me.All I need is to be left alone. Its not my response,its the brain.Also ,I leave 5 min by car from beautiful beaches . I haven't been able to go there for 2 years. I simply can't bc to get out of the house is exhausting. If i go somewhere half way through i want to go back home to bed bc the pain became unbearable. I know, sounds weird but thats my life. I actually do more than i could but level of pain removes my motivation to absolutely zero. Im fortunate to have physio coming to my place. He always checks on my pain. If im too bad we let it go, if im ok i do very simple exercise. He is very understanding and thought me how to structure my days only with minimum, so i dnt go backwards . What really helps me is my big monthly calendar board on the wall i write appts on it. With looking at the board, Im in picture what is expected from me, if i can do it or not ,where im with my pain atm.. Usually i keep only important appts. Having days off in between to recharge bit. Physio usualy looks at the board t and questions if i can move appts around bc is too much for me. His navigation helping me a lot, as he is only one who truly understands my pain. I sink into depression too. As much i miss my old myself ,my friends i do not dwell on it anymore. I was forced to learn to live hour by hour day by day. No plans,no commitments otherwise i felt guilty and stressed.
You doing great job with videos, thank you!. Im glad I found you, I subscribed it too.
All the best🤗
I have vEDS. Became disabled just recently (11/2022). I was very athletic and worked in a physically intense career before I had two dissections. Since then, things only got worse and life has become quite difficult. The people you'd expect to be there where often there the least. Ironically, people you would not have expected where there quite a lot. Good points in the video. F*** EDS all types.
A great video Stela, hope you're doing well
Yes I can relate. I've been ill for 20 years now. I have psoriatic arthritis of the spine, and chronic migraine. 7 years ago during my last pregnancy I developed sleep apnea, and it is still not properly treated, after FINALLY being diagnosed 3 years ago. Nothing I have is simple or straightforward. I'm getting massively fobbed off by my local hospital, hence my c h a n n e l. I moved near to a hospital to improve my access to healthcare and all they can do is send me to London all the time. I'm too knackered for that. 😡 I have pretty much no friends. Being sick got rid of most of them, motherhood got rid of the rest. I lost a good career.
Drives you mad doesn't it?
On my c h a n n e l I also have accounts of things that have caused me medical PTSD. So pretty surprised to hear you mention it too? How is your situation post COVID? Are you having the issues that I am having with healthcare? I can't get a GP appt, a couple of weeks ago I tried to get one for a flare up - asking for steroids. My appt is booked for 19 April, its the 9th today. 😔 Most likely it will be a Pharmacist that works at my surgery, or a locum that doesn't know me. Things were bad enough before COVID, they are intolerable now. My local hospital would put me in a bin if they could, I'm a write off.
I watched half of your video at this time and it's totally informative and supportive ❤
I was procrastinating to watch this video a whole year out of fear of feeling sorry about myself and that didn't happen i felt belonged and heard.
Thank you for sharing ❤
i just recently started suspecting hEDS. i knew for a fact i had pots but it seemed like there was more- chronic random joint pain, chronic muscle and bone pain, joint instability, joint hyper mobility, my stomach has been hurting and it’s been hard to go to the bathroom, i’m extremely fatigued all the time and i’ve considered using a rollator/walker because of my pots symptoms and pain. only thing is i’m only 18, and i live with my grandparents still. they believe that my pain is from “the weather change” or something like that. i’ve been feeling pain since middle school- it’s not just the weather. i just don’t know where to begin. how do you just walk into a doctors office and tell them “hey i think i got hEDS” like idek man
Thank you, for being so honest and validating what always think.
I would do tons of research if I knew a loved one had an illness!
Most won’t even watch a short video on what multiple, overlapping things I have.
I wish I had a husband, or ANYONE who would help me!
21 years and counting, plus 20 years of childhood illnesses and infections. I believe I also have EDS, and I do have too many chronic diseases to mention. I love everyone who is going there this.
I also have medical PTSD and Lyme+.
“Chronic” is a great book about Lyme+.
Absolutely amazing! Every single point, word for word!
Thank u so much for this vd, it's really helpful in many ways especially how u talk about these difficult things in our situation with confidence makes me feel more open to search and accept more things in my life ❤ thank u
❤ thank you so much for this video ❤
Thank God, I'm so glad I ran across this video tonight. New subscriber 😊
glad I found this. it's very hard to go back into those little spaces, even if you're just telling the story. Thank You.
I think I had EDS symptoms since birth as the first signs were not doing certain things on time e.g. holding my head up, rolling over etc. Unsurprisingly, my memory of this time isn't great 😂
This is a great video and very needed! This comforted me in sooo many ways! Thank you
Very well done! Thank you ❤
So grateful to have found you today! ❤❤❤
Spot on video. Thank you for sharing.
I've done 3 years with doctors now. I've had the stuff since i was 12, it got bad ish around 25-28 somewhere. That's when i realized something more than a stomach thing was wrong. i got myself to a doctor about it at 30, and it was starting to ramping up at 31. (where my ex left me) at 32 i could no longer hold a 20 hour work week. i am 33 now and have just gotten a new doctor, social security is breathing down my neck, i start gulping air if i walk too fast. It's a very stressful situation, and right now i'm currently deteriorating quite fast. (meanwhile people everywhere is telling me to go work out, which is vexing since i loved working out) Somehow other than some anxiety i'm fine emotionally though. It's almost as if i'm already done processing most of the emotions that follow this whole ordeal.
I'm sorry you are going through so much too 😪
So true for me, thank you for this video
Thank you. I needed to hear every bit
Resonates hard😔🌺❤️
Sending you my hugs
xx
I can totally relate to it...
VEry very good Video!! Thank You!!! Hope you are feeling better
There’s no one that can help me & I’m literally losing my mind, tired & exhausted from being in pain all of the time & it’s even exhausting talking about it again & again & I’m feeling like I’m losing the battle, it’s been too long.
Thank you for the video. Please try to live one day at a time
God Bless You 💛
Thank you 🫶🏻
Ive been diagnosed with EDS for a while. The Endometriosis diagnosis process cost me my ex-best friend of 9 years. My Neurocardiogenic syncope came around June of this year. Im now going into my senior year having my Acid reflux return from infancy, Thyroid Issues, and all of my other issues... ontop of a mean gym teacher.... In a heat wave! 😭
(Actually, any tips to help explain why going outside into the heat and DIRECT SUN is a bad idea, and its Not the Physical Therapy workouts being akward.)
Unfortunately the guilt you feel when in chronic pain and the destruction it corses the one's we love and care for can eventually after 22 years of inhumane chronic pain destroyed everything about yourself
The guilt is crippling
No friends anymore
Beyond true
Grieving about your former life is the worst thing.
I can deal with the pain almost.
But seeing pic of myself from like 5 years ago when I was like 21 - a huge, athletic hunk of a man, with huge arms, shoulders e t c.
And now - a depressed sad mess that spends an entire week cleaning his house only because i can do only one room/half of the room on a given day...
That's a fkin pathetic sight if you ask me
So the doctor says it's all in my head 🙄 just had leg cut off😢
😢 so so sorry!
thanks
Ty but if you need help fam and those around who cares the burden can. Be lightened. My issues from the war if I am about to disappear from society I bring in my fam .if those like me goes off their meds for 2 long the issue could be catastrophic bc your other personality comes out and you see and hurt people or yourself. I am a combat vet with 12 years of tracking the enemy but you can't translate it w/o meds. Some wounds you can't see
Chronic illness doesn't have to be permanent 🙏