Chronic Illness Anniversary. ME/CFS diagnosis in 2015. What helped and what made it worse! 

I was diagnosed last year and watching your videos has helped me a lot mentally. Being able to watch someone of a similar age experience a lot of the same problems definitely helps the feeling of isolation that a lot of us feel.

Interesting that even in your dreams you know that you can’t walk far 😢. Well done for consistently achieving things that have been overwhelming difficult 🙂💜

I was also diagnosed with chronic fatigue at around 16 and I find this video really relatable and really reassuring. I had the same treatment (no naps, daily walks) plan that you describe in this video too. It makes me feel less alone, and hopeful that I can continue my life with this condition. Thank you for making this.

I hope you can get to a place I got to diagnosed at 15 , I was fortunate to work through the depression & anxiety in two years. Then it came back after a long flair. I was able to finish Uni then hold some lovely jobs & have 3 children. I had great low pain after child birth for a two years while I was breast feeding . So no one has been able to explain why to me, After age 42 ,I had to retire from a normal job. I work from home 3;days a week. It’s a crazy way to live but ,like you said there are always good days coming. This morning I woke up in so much horrible bone pain from over doing myself yesterday. I took the wheel chair and walked a bit pushing it because my hand were hurting , so today my shins hurt from walking too much. Yeah , it could be worse I could be stuck in the wheel chair so I won’t complain. Good luck to you on your journey. Just know I am much older & have been able to have a great life , have a husband ,children & home ,now a bit of work from home. We worked hard in our early years because we didn’t know how long I would have a good income,so I can afford to work for myself from home. My husband works 1/2 at home 1/2 outside the home so if I have a problem I know he will be back in 4 hours. I also have a medic alert necklace so if I fall & can’t get up it call the medical service that sends help . Oh never take a nap with one on if you lay flat is alerts them , I work up with a voice say mam are you ok coming out of my necklace. Lol

YOUR COMMENTS about what doctors told you are very much my experience with post polio. As you say, doctors didn’t know and did their best. And it is the same with post polio. You inspire me! And I’m 80 years old.

Agree wholeheartedly. And it's so important for everyone to hear that doing less actually can make you feel happier. I have been ill since I was 2/3 yo so it took me almost 3 bloody decades years to get diagnosed. But once I got treatment and learned to pace... I can now actually spend the very little energy I have on things I actually want to do without getting punished after. People look at my life and they just DO NOT understand how much of a difference that makes. I don't go anywhere and I do nothing, how can that possibly be true? Because I'm not constantly actively ill. That's literally all.

i was so pleased you did a post about the wheelchair , i bought the same one at same time as you and felt better as i had and still have anxiety about being judged as i can walk but need help a lot of the time. people are very quick to look at you and judge .

I hit my 2 year anniversary last month. My doctor has asked me if I believe I could get better, and I’ve always side stepped the question. Really deep down I felt that I would get better, but I’m afraid to get better because I don’t know how to be a normal healthy adult.Now I’ve been going to my holistic doctor for over 6 months and she has helped gut wise, but all my CFS symptoms are just as bad if not worse. So know I’ve been in the hard mental state of fearing not just that I’m possibly not going to heal, but also how much worse will I get. My social life is nonexistent and winters are hard on my body so I’ve really struggled with depression. Because I got sick at 16 I also feel that the transitional period of child to adult has been affected so I feel like CFS is a huge part of me. I really appreciate your kind encouraging words at the end.💗

I have in my dreams disability, too.

It's been a bad week. I needed this. Thank you ❤️

Ooh the dreams, since people have been discussing theirs - in my case it's likely a mix of ME and autism, but I can't fully feel my legs, it's all kinda weird. But in my dreams if I am walking I never have legs. They just stop where my real legs get weird. It fascinates me.

I had a dream last night where i was in a wheelchair, ive been wanting one for years and i think thats my signal that its a core desire at this point. I also have the experience of being able to walk in dreams but knowing something is off.

This was so helpful especially you talking about how we can do the things we want to do it'll just be a different route and maybe much longer than we'd hoped for initially. Thank you so much for sharing

hii:-) imagine , i just got my cfs diagnosis now at 33 - my illness started when i was around 14years old (they found nothing then, got the psychosomatic label ehh) and I heard about cfs only 3years ago first... i feel you , what you share in your reflections!! the hard thing for me currently is that, though i feel i could have acceptance and learn to work with where i am now, slow and steady and let go , but... especially from my parents( i have to live with them as im around 80% disfunctional now) there are still strong expectations for me to get better soon! ( tó try everything out no ,stopping with this etc) and honestly it's kinda feels like this would not help with my hopes but rather be like a heavy package:/ in my current states.. ah,apologies for the random monologue😶 anyways.. I'm grateful for you to make this chanel! and talk in honest it makes me feel a bit less alone, a bit less like an alien (in my country me/cfs is even less known and there are not really specialists) bests!!💙💚🌼

Thank you for this honest conversation, it was great to listen to.

I'm three years ill this month. It touched me as you mentioned, even on your dreams you know you cannot walk. I had exactly this kind of dream 3 days before: I started running because I had to go fast to another place. Inside my dream I thought "wait, you cannot run, it will make you worse, you have to pace". I had a fitting for my first wheelchair today, that's how I found your channel. Seems my sleeping soul and body are wiser than myself awake. Remarkable coincidence with the dream and the wheelchair fitting. It's really hard for me to make this step. Thank you so much! For your kindness, validation and encouragement.

“happy” anniversary! Finding that comfortable baseline activity level without the crashes or severe PEM is a good place to be. How are you now the weight of the dissertation has lifted?

Omg I have that in my dreams too!?? It's very annoying actually because I'm usually doing something epic in my dreams then I'm like "no guys wait, I'm going to need a wheelchair for this." 😅 On a serious note, thank you for these videos. I feel more inspired to make more of my own now. It's really important to keep the conversation going. Just looking at your comment section, you're helping so many people feel less alone ❤️

Can I ask how you went about getting a diagnosis? I've had symptoms for years and feel like I've seen every doctor in my area in the past few months about worsening symptoms, but no one seems able or willing to diagnosis me with anything, which would be helpful to me as a student.

I won my fight over schizophrenia. I dont know what to say exept that I know how it feels when you feel so hopeless. Not being able to leave room for months due to severe depression. Not being able to have regular conversation with other human being cuz your cognition is fried because of psychosis. Being scared and lonely and isolated. If there is hell on earth is chronic illness. What i want to say to you is never lose hope. Trust me, there is cure for everything. Human body is capable to repair on his own. I know i sound like some guy that want to sell you something now or to make you convert to some religion. I dont. All I want to say is dont lose hope. Few tips that might help you: probiotics: our guts get destroyed with sugars and other crapy food that we put in ourselfs during depression yust to feel better for one moment Water filters: our body is water and we drink shitty water, specially in big city's. Body is 80% water, put right fuel in engine if you want it to run propertly. Air purefires: Again, air is as important as water. Clean ear means better blood flow overal witch means more toxins are gonna be flushed from our system. Food: you are what you eat. Protein sources today are trash. They destroy meat with hormones. Safest protein source will be sea fish, than fish from rivers, than organic meat. Fat sources you alredy know, nuts, lots of nuts. Carbs are problems. We, people with chronic illness get to so much pain that we get hooked up on fast apsorbing ( bad carbs). We forget about honey, fruits... Than it comes to complex carbs. White bead can do more harm than good, specially to people with weakened immune system. It is better to eat whole seed high carb plants. And ofc vegetables as sources of minerals and vits. Cleaning liver from meds: in my country best product that worked for me is called zeolit. I think same name is in english. If you need real name ill translate you. This worked for me, I have alot of tricks to heal myself, from using heat as energy to repair my body to strenghtening my nervous system with meditation than repairing it with right minerals and vitamines. Our body works best when every organ, tissue, cell works together thats why we need to strenghten everything. I dont know will it work for you but it can do you just more good than harm. Nothing bad can happen from trying again and again, whatever it takes. We have only one life. We have to do whatever it takes to perserve it. To fight tll the end. Its in human nature. Even when mind wants to give up body is still breathing and heart still pumping blood. I gave you few tips how I escaped claws of hell, I dont know will it help you nor will you try them. All I wish you is all the happyness, joy, love of this world. Big hug from other side of the globe. If you decide to try some of my ways to heal put comment here. I am repeating I am not selling anything nor charging I just know how hell and hopelesnes looks like and how great it feels to be alive and healthy again... ❤️

I think with exercise we also need to quit that term and just start with movement. Exercise can easily make us worse and be too much!

i am from india i am physically handicapped what country are you from You are very beautiful

You’re so beautiful honey ❤❤❤❤❤