Living with Chronic Fatigue Syndrome: My Struggle and Loneliness

✋ hello everyone I'm still learning how to loot use the app I just figure it out pressing the mail button allows me to see the question that I put out and all of your answers I will be reading them as soon as I get a chance the weekend is the only time I get to spend with my partner of 10 years. And you all know what the f s energy if very sparing I have to use my spoons for him but now that I know how to do this I will read all of your responses and reply very soon it's nice to be able to talk to somebody a few somebody's that actually comprehend what I'm experiencing. Look forward to responding to you soon

I also self diagnosed then brought it to my doctor who said it’s probably what I have. I work part time from home but going back into the office soon and sitting on my bed working feeling sick and wondering how I’m going to make it when I’m back in the office. I had a job where I was walking and moving around a lot and once I stopped I got heaps better. If there’s anyway at all to get a different job that’s not so much walking in my opinion only I think you will feel a lot better. I used to get bad headaches with nausea that virtually went away after I stopped my one job. I also ended up in the ER a couple times but not since. Still not great but a bit better. I know I’m going to get worse when I go back into the office but I need $. 😥

I totally get you! And congratulations on being able to maintain such a physically demanding job with this condition! I've found people and doctors to have a hard time believing it's real. It took me shopping around for a Dr to find one who actually paid attention to me. My husband even still has a hard time with it this many years later but he tries to be supportive. It's impossible to describe so people who haven't experienced it or any other chronic condition literally have no way to comprehend. The things that help me a lot are acupuncture, chiropractor, being dairy free and gluten free and mostly sugar free. As you already know, not all Drs are created equal. If you don't feel better or seen in some way after your first visit, my rule of thumb is that's not the right Dr for me so keep looking into you find the right one! It's exhausting but worth when you find the right one for you. One time a good Dr said me after I was hesitant to go into my whole history bc I tend to not be believed, "The thing about pain is that you can't measure it. So when someone tells you that they're in pain, you believe them."

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Thank you for the app suggestions and thank you for the reply. I have a formal diagnosis and everyone around me finds it hard to believe. My boyfriend of 10 years as supportive as he can be but he often like forgets and he hasn't looked up the condition himself to understand it and I don't know if I'm convinced I want them to keep looking for something underneath something that is causing the symptoms of chronic fatigue rather than me just stand around and get sicker I've tried to eat better I was already eating pretty well my ability to care for myself as a steadily declined over the last two and a half years I used to exercise everyday we're trying a couple times a week yoga everyday and walk a couple miles before work plus I got 10,000 steps at my full-time job now it has down to I can't even do yoga in the morning and I can barely keep my part time job I can barely take care of myself. I take all the supplements I eat as clean as I can listen to affirmations about health xcetera but I'm steady decline and no one wants to listen. Congratulations on getting your health steadily bumping forward. I pray for a day like that I hope it doesn't take me 25 years lol that's agonizing I think about.