3 yrs 8 months still unable to work

I got Covid for the very first time in January 2024, and immediately after the acute phase I started to develop symptoms consistent with Long Covid (PEM and dysautonomia/chest pain). I attempted to go back to work, but I couldn’t tolerate more than a handful of hours a week even after deciding to work exclusively work from home. I stopped working completely by mid-April. I tried to go back to work in mid-July after my short term disability ran out, but I immediately crashed really bad, got diagnosed with early systemic Lyme disease, and basically went from a moderate ME/CFS level of impairment to much more severe levels of impairment. I have been mostly housebound since then, though I do feel like I have had about a 15-20% increase in function over the past two months which I think is related to addressing some longstanding GI issues that I have had for 8 years.

So overall I have been either totally out of work or unable to work full time for 17 months.

Hi @bellableu125. First thank you for your caring of others and so thankful for your healthcare professional views on this new journey for so many of us. I am on year 4 and have utilized all that @dlydailyhopes helpful ai post suggests. I had to retire 10yrs early due to this and feel I understand your feeling of loss on so many levels? I try to help others here to continue my previous healthcare life and if I may suggest everyday there are opportunities to help others whether calls, in person, here, …..regarding anything but especially long covid realities thru your kind informative education as others lack of understanding or exposure to this can benefit all tremendously with firsthand word of mouth facts. Even my helper has challenges relating to and dealing with my ever changing symptoms effects🙃 Hope this came across in kind hopeful light intended as you continue to heal and find your suited helpful motivations each day!🌈

This is in response to Bellableu/dailyhope / etc ( above discussion on LC):
To just hear/read that others are also lost and hurting physically / emotionally/spiritually in this insidious disease is a reminder that we ( fiance with LC 4 years and myself his fiance-caregiver) are not alone . In reality - I know this . However when nobody talks about it or IF I mention his LC and how he is not any better - they just seem to say “ well, can he do anything ? Is all he do sleep ? Or you know , you just have to tough through it ….” Etc etc …then I just “shut off “ and do t say much to anyway … people on this sight realize the degree of suffering- in its many forms . To see someone you love and care for declining and changing and not sure if he/ she will improve is disheartening. Especially while trying to stay upbeat and dealing with mothers dementia .It is also hard because a chronic illness is not the same as a “seen” illness ….. and obviously many people are much worse off … I see I am rambling again about this ! I apologize …… I truly send encouragement and prayers to all of the people who are hurting . Wishing a good day to all. Karen

I hit the 5-year mark in April. I think I've tried every possible supplement, drug, or therapy out there. Metropolol has helped my tachycardia. Moving to sea level and doing daily breathing exercises for 2 long years have helped my lungs. Lyrica has helped my muscle and joint pain. Still trying to find some way past the incredible fatigue and persistent brain fog. I'm sorry you are still struggling, too. I'm one of the lucky ones who can still work full-time but only because I am FT remote, can lie down during the day as needed, and have a flexible schedule and caring boss.

Have you been to Mayo for treatment? I've been sick since 2021. Was much better last year, now declining again. I'm throwing in the towel and willing to travel to Mayo for care. I'm sorry you're so sick. I wish you all the best. Don't listen to a doctor encourages you to give up. That's just terrible.

Hi @karen8. You are not rambling and we are here for you and can hear you! As I am tearing up remembering “trying” to care for my dying mother before and after I got covid 4 yrs ago and then watching my adult son I help get covid June of last year and knew what he was going thru as he stood there crying. One moment at a time and your care and love for him is irreplaceable. Please continue to take care of yourself first as well and any help happy to provide!🌈

Hello law59 - I’m very sorry to hear you have LC four years as well and now your son ! May I ask if it has changed things drastically for you also?I realize everyone’s experience is different . So sorry about your mother —- seeing our parents age / ill / pass — may be the “ circle of life” but this does not take away the heartache !
My fiancé always lets me know how much he appreciates my care …. In my eyes it is what a person does with someone he/she loves. I appreciate your kind words - wish good things your way too !🦋

Good morning @karen8. Everything has changed drastically and my sons actual conditions are unknown due to lifetime health issues and dont believe covid is even being evaluated with complexities of now at care home and now my inability to advocate for him. Thus why I shared your fiancé is so lucky to have you. Cant recall if I already suggested if you have trauma level mental health provider? That has been the greatest gift in addition to this sites support. Trauma level providers have much deeper knowledge, understanding, and suggestion/referral capabilities to resource levels for this new very complex journey. For me it has also helped with the grief of loosing my old life and son with me while learning techniques to find the joys and love in the simplest things we all can still do🌈

Bellableu… I cannot believe a doctor told you that this would be it as not getting any better! I really do have to wonder sometimes about people! we have to keep hope. Yes people with LC as well as others who are struggling with chronic illness will get better if even just the little things, these are big steps. Even when those big steps seem to fall away you just hold onto hope…. Much easier said than done I realize this . I bet you ARE a wonderful RN with a very kind heart and even if you not able to practice as you would like right now ,being there for others on a site like this means more than you would know wishing you a better day! Anytime you would like to discuss your symptoms I would be glad to discuss with you regarding my fiancé’s many symptoms of which are severe.

( the highlighted small box above in my comment is a poem I find very perfect and heartwarming !” ) - for anyone