Long COVID: Accepting my new normal

@da69 ,
I can relate to being tired of the PCS symptoms. Mine are different from yours. Fortunately, I haven’t had fatigue or breathing problems. I would imagine that is a very distressing thing. I’ve been struggling wiyj the prospect that I’m in this for the long run. I won’t give up hope though.

I know EXACTLY how you feel! I have only been vaccinated, no booster (my side effects from the vaccine were horrible, didn’t want to go through that ever again). My symptoms are all over the place, horrid sinus, head and ear pressure, heart palpitations/arrhythmia issues, gastrointestinal problems, all over body pain and aches. Episodes of lightheadedness, balance is off (which I believe is from the ear pressure), internal tremors, was recently diagnosed with a some level of Dysautonomia, said part of my nervous system is malfunctioning. Other than my Cardiologist saying that from numerous heart monitors they see some disruptions but nothing life threatening.
But I’m with you tried of sooo many doctor appointments and tests for them to say they really can’t really do anything to help my symptoms or see anything “life threatening” but when those symptoms are at an all time high I feel like my life is in danger. So I have given up and trying to accept that this is my life now and grieving a life I once had. Almost three years for me, so sad and frustrated.
I wish you better health and happier days ahead.

Me too...no one can help you or they do not know how too...tired of the appointments when you go you feel more frustrated after you leave , hoping someone can tell us why we are the way we are. I went to a foot specialist , because I had Covid toes from my Covid in 2021, he could not help me at all , when he looked at my foot he plainly said " I do not know what this is and he asked me what I had been doing on my own to treat it. Covid forever changed our lives and how we live our lifes. Those who have never had Covid themself or some one close to the who has do not get this. We never know how our day is going to go when we first get up in the morning and when we will experience some of our covid syndrome symptoms. Friendships have been comprised and what we do and when we do , that is when we are not napping from the awful fatigue we experience, but I guess that is our new normal..we are a part of of our own " ME TOO " movement. Wishing all of our connect friends better health and happiness also. Sincerely, Kitty2

The upside is, we are all in the same boat, which is unfortunately the downside as well. Next month will be three years with what started out as a slight ringing in my ears to gastrointestinal issues for months, inertia, sleeplessness, heightened anxiety…… And those are the good things in my life now! Doctors telling me there’s nothing wrong, that I need hearing aids, and gradually feeling chronically exhausted, everything always hurting, and no desire to interact with others. Every muscle in my body hurting, and a male with persistent, urinary track infection, and a host of other physical elements that are just debilitating. Waiting months for appointments with specialists, who are just ignoring major symptoms like brain lesions, blood irregularities, issues with balance, memory issues and psychological disorientation. Frustrating and lonely, no choice, but to accept that if this is the best I can do at any given day or moment, then so be it. It’s not that I truly accept this as my new norm however, I just don’t see any other options . I must not allow doubt to creep in, that this is somehow my fault; or have the ability to do anything. Ultimately, it’s the loneliness and hopeless feeling that I’m left with. Three years is a really long time, especially with no endgame on the horizon. I only hope that a community of understanding can be help to us all. My life of production and momentum, stripped away my quality of life for the remainder of my 40s, and now at 52 years old, I am left to wonder where things will go. I am not a negative person , in fact my natural tendency is to want to help others and make them feel part of. I truly hope that can be given and received here. My heart and understanding goes out to all who may be going through similar experiences.

I am right there with all of you. My symptoms are the same and not improving in nearly 3 1/2 years. I have been to several specialists and continue to see more in hopes that SOMEONE SOMEWHERE can help me (us). My happy, productive life has vanished. No one has a precise answer, much less solutions, although some doctors have offered meds or therapies that "might" help. I am just taking life day by day and hoping for the best. Healing wisshes to you all.

This is so hard most days. It’s amazing that something so little the human eye can’t see it unless through a microscope can do so much damage, physically, emotionally and mentally. I’m so envious of people that have had it and seem to just bounced right back and out there living life. You wonder why did it affect some of us the way it did, how do you live with suffering in pain and other symptoms that leave you depleted. You take medication to relieve the symptoms but turn around long term use of the medication can cause adverse effects.
Goodness are we to suffer like this for the rest of our lives? Over two years and coping and accepting is still hard.

I am angry. I am dizzy and disoriented. I have tinnitus, hyperacusis and ear pressure. My vision is so blurry and my digestion has basically shut down. I am so dizzy that I have fallen, and so rarely go out anymore. I struggle through each day, just going to doctor appointments that never help.

I am fortunate to have support from my family, but they cannot really understand. Most of my friends have given up on me because I’m no fun anymore. I can only text or email now. I can’t participate in any activities for over two years now. People move on.

My life was stolen from me and I feel such anger.

It’s the best we can do for right now. Our affliction addresses us one moment at a time, and that is all we can do in response or preparation. One thing I know for certain is that the Myalgic encephalomyelitis most of us suffer from is cyclical. Meaning, we are not actually exhausted from the acts or physical exertion. We just did. It’s actually a depletion of serotonin, which works on a 24 to 72 hour replenishment cycle. So we all must be mindful of pacing ourselves. Mental stimulation a part as well. So, even though we may feel fine after walking 4 miles, but then crash two days later, after walking to the refrigerator and back, we don’t really know what, and how much of something was too much, and for that matter what it was in the first place. I am not a doctor, but I am a human and suffering as well. I must believe that we are not just sitting around and waiting to die, therefore, the only thing that gives me remote relief is knowing what my triggers are, regulating, and pacing myself, and refusing to give up. I must admit, it’s unbelievable the number of people going through this, yet the cheeks of the masses have been turned to the other side for this. Sadly, it does not bode in our favor when we go to doctors, and no more than they do about what’s going on. That typically leads to a medical gaslight. I believe the start of this thread was “accepting my new normal”, in short; no! We must never allow this to be normalized, and keeping the conversation going is a great way to support and document everything we go through on a minute to minute basis. I wish everyone a blessed and calming weekend.

You are not alone, I too have become angry, frustrated, alienated, and lonely in the virtual world I live in. No drugs work for me, my only drug is sleep. I wake up to the loudest ringing in my ears, leaving me with such a debilitating feeling from the moment I wake up, that it takes me nearly 4 hours, just to feel like I can open my door And get my dog out for a quick walk. In all fairness, I wasn’t much fun before Covid! (Levity joke) but yes, my friends are all gone, and sadly my family does not want to deal with this at all. We can own our anger, I just don’t allow it to consume me; as it is too draining, and it only triggers a higher frequency of more intense relapses. We are all in a place where we are completely understood. That aspect of loneliness doesn’t have to be there anymore. we all understand, and we WILL get through it!!!

So sorry to hear of your shortness of breath issues. I’ve had covid 19 twice, once in 12/19, and again in 6/22. Three weeks after testing positive in 6/22, I started with the Post Covid 19 symptoms of shortness of breath. It would affect my walking across a parking lot, putting on my compression stockings. I was also diagnosed with Lymphedema of the lower extremities in 9/22. My pulsometer readings ran low 89-90. I found a local Post Covid 19 Recovery Clinic locally. Thankfully I was referred to a pulmonary doctor who sent me for a pulmonary function test and 6 minute walking test, along with a chest xray. During the pulmonary function test I was given an albuterol inhaler since I struggled to blow out, feeling like a wall went up. After using the inhaler, the test was repeated with much better results. Based on the testing I was diagnosed with bronchial asthma and now use an albuterol rescue inhaler every 4 hours as needed. If I know I’ll be walking an extended distance, I use it proactively, rather than waiting to get out of breath. Because of daytime sleepiness post covid I was referred for a sleep study. During the study I was put on oxygen at 2 AM, after waking up to use the bathroom . The technician told me my O2 had dropped to 85%. I’d been having disrupted sleep waking up every 2-3 hours, often 5 times a night. Fortunately I was able to go back to sleep. But, I never woke up breathless so I had no idea what was waking me up. I was diagnosed with severe sleep apnea. My CPap machine using a nasal pillow has become my new best friend. I now sleep 6-7 hours on the CPap waking once a night to use the bathroom. My O2 level is usually 92 in the morning.
Hope this helps someone who is struggling. I actually found out about my local Post Covid 19 Recovery Clinic by my nephew’s wife at a graduation party in 5/23. My PC didn’t tell me about it. I researched online, and called the following morning. No doctor referral was needed. The first interaction was an online appointment with many questions asked and I answered. The next appointment was a face to face with no clinical testing. The nurse practicioner asked more questions based on previous answers and gave me an opportunity to expand upon them. From that initial appointment in 6/23 I was referred for a sleep study, which led to the pulmonary function test, 6 minute walking test and chest xray. My first round of covid 19 in December 2019, I was diagnosed with pneumonia. The xray showed scarring of the lower left lobe of my lungs. The albuterol inhaler has helped me to become more active keeping my O2 level at 90-91.