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Im at a loss for words

Post-COVID Recovery & COVID-19 | Last Active: May 23, 2023 | Replies (18)

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@awa63

Hi. I've been dealing with Long Covid symptoms since early last July. At first my doctors did not speak of long covid but rather tried manipulating my various medicines to make sure they weren't contributing to my symptoms. For various reasons, I knew it wasn't my medicines, but I suffered and humored my doctors. Eventually, it was apparent that my medicines were not the cause of my growing list of weird symptoms. I felt embarrassed to speak of some of what I was experiencing and had difficulty accepting any of it as "an illness". Eventually, in reading more and more about long covid, it became apparent to me that each of the goofy symptoms I was experiencing could be ascribed to the Long Covid Syndrome. My doctors accepted that this is what was happening, but had no real experience in dealing with it. I was given various meds to help with the SOB/Breathlessnes, Palpitations, and dry mouth. Some of them helped. Eventually I was seen in a Long Covid Clinic at a nearby University. They helped me not feel so crazy and reassured me that all of the things I was experiencing could be related to the Long Covid and had been seen before - that was very validating. So I understand how you have felt and hope that you continue to feel reassured and supported! One piece of advice regarding the fatigue which may help. I am struggling with it too and it is like a battery, I have only so much energy and as I use it up, there is no recharge. Once on empty, that's it, I'm useless. Also, I was told initially to avoid all activity that caused increased heart rate (working out, tennis, pickleball, running etc). The reason being that such exertion can use up our reserves and they're also finding that with long covid, we may not be able to draw on our anaerobic reserves to sustain our energy as we use to (the system has been "damaged"). Therefore, pay attention and try to limit anything exertion. Be attentive to your activities and degree of engagement and try to take breaks before you "overdo"it. Sometimes, you might be doing a bit better and do more only to fade and pay a price for it later that same day or up to 72 hours later so even if you're managing, try to be cognizant of this and structured in how you manage your energy/activities throughout the day/evening/night. I'm sure having children makes it more difficult to follow any structured program, but do the best you can and if you can't, don't get down on yourself. Remember, this is not something you created or have control over so be kind to yourself a find a way to accept it. Do the best that you can, that's all you can do. Ideally, your family will understand and respect what you're going thru and support you as well. Have them read some of the entries on this blog or any of the numerous on-line descriptions of Long Covid or a chronic illness similar to it lie CF/ME so that they may better understand what you're experiencing and see that it's "not in your mind" but something real that many people are going thru and dealing with! I hope that this doesn't sound preachy, not intended to, just trying to share some of what I've learned - I hope it makes sense, if not, I can be more descriptive if desired. The bottom-line, you're not alone, I'm not alone, we're all in this together and these crazy and difficult to live with symptoms are not in our head, but happening to us!

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Replies to "Hi. I've been dealing with Long Covid symptoms since early last July. At first my doctors..."

Thank you for your comments. Really appreciate your advice on dealing with the fatigue. I’ve also found if I try to overdo daily activities, it takes so long to recover. Your battery analogy is very helpful.

All my friends and family are struggling with where I have disappeared to as am I . I sang in a concert on Tuesday and it is now Saturday and I have not recovered ! I am in tears with gratefulness that I’m not crazy !! This is REAL ! Thanks

thank you so much for your kind reassurance.
i have had all normal results even on my brain scan and its so frustrating dealing with the doctors now. i know what you mean by the battery analogy,
i just wish i had a guage to tell how much i had left. i know also what you mean about pushing too far because today im totally drained and spent.
ive been on albuterol and combivent to start and wondered if anyone has, i call it "turrets like" side effects from the albuterol? i have compulsions to talk to strangers at stores and am even more sarcastic than i used to be. i say things out of the ordinary that i wouldnt normally say and its like i cant help it. i even have a strange "uhmm" that i say also since i started on it like im about to say something. thank you all again for your words and support.