Venting

Posted by diverdown1 @diverdown1, Mar 10 10:22am

I woke up this morning and felt like I was in a car wreck. My body hurts, stiff, tinnitus, inflammation, swollen. I am tired of this and yet I know that I have to keep going. If I allow my thoughts to go into the future, I find it bleak. I am trying to keep myself in the moment. I do start feeling better, with the help of medications but it is hard knowing that there are no answers. I just needed to vent.

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Profile picture for klf58 @klf58

Today was a dark anniversary for me, since today 6 years ago I went to Urgent Care with what initially was thought to be the flu. 7 weeks later I was still sick and lost my dream job. I've never recovered and have many blood disorders, cardiac and lung issues, daily migraines, constant fatigue...you all know the drill all too well. It's very hard to realize it has been this long and I will never be the same. I feel the world has moved on and left us all behind. I'm glad for those who have recovered and regained at least some prior quality of life. We are survivors, even though I often feel that it would have been better had I died when I first got covid, just because long covid feels like a living death. Thanks for listening. You are the only group who will understand.

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@klf58 Thank you for writing. I understand the grief of what I was and what I could have been. I also know that I could be worse and may be as I have no idea what this sh&t is doing to me internally. I am better than I was 4 years ago, but I want so badly to be in shape, dive, run, and do the things I love so much. I do find companionship here, albeit virtual. I have not found any groups in my area. I used to attend AA daily as I am in recovery, but even there I do not know how to explain why I "can't do (fill in the blank). Hang in there.

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Profile picture for mbryant1380 @mbryant1380

I think all of us can relate. I unfortunately have had Covid almost every year (except 2023 and so far not this year…yet) since 2021, each time when I feel like the symptoms are declining, bam, I get it again! I feel like it has a personal vendetta out for me lol!
I belong to a support group and we meet twice a month via zoom where we vent, cry, share information, give love, encouragement and comfort to each other. And we were discussing that it feels like we can’t trust or feel safe in our bodies anymore. Yes there are many unfortunate things that can happen to us outside of Covid, but this “condition” is such a multi system disruptor you don’t know from day to day what we are going to burden with. Crazy that I have been like this for so long that I forgot what my body used to feel like symptom free.
My Covid recovery doctor says there are still studies going on and there are some doctors that are still trying to help us. He said there is a study going on for a drug called Baricitinib a Jak 2 kinase inhibitor. So some of the medical community has not forgotten us and believe it’s a real concern.
So I know it’s harder said than done but I try to enjoy the not so bad days and push through the bad ones, between this online support and my other support group it really I mean really helps.
Sending you all love and hope!

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@mbryant1380 Can you message me with the information for your Zoom group?

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Profile picture for cpivyca @cpivyca

I was thinking exactly this when I woke up. My rings are so tight I think I should just take them off. Knowing I'm not alone is so helpful

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@cpivyca I had to take off several of my rings and change fingers on a couple as well. Swelling, right?

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Profile picture for klf58 @klf58

Today was a dark anniversary for me, since today 6 years ago I went to Urgent Care with what initially was thought to be the flu. 7 weeks later I was still sick and lost my dream job. I've never recovered and have many blood disorders, cardiac and lung issues, daily migraines, constant fatigue...you all know the drill all too well. It's very hard to realize it has been this long and I will never be the same. I feel the world has moved on and left us all behind. I'm glad for those who have recovered and regained at least some prior quality of life. We are survivors, even though I often feel that it would have been better had I died when I first got covid, just because long covid feels like a living death. Thanks for listening. You are the only group who will understand.

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@klf58 I heard you this morning, my Friend. You said we are all survivors and you are right. You said, “ I feel the world has moved on and left us all behind.” I certainly was feeling that a few years ago. I had gone to the hospital and mentioned I had Long Covid and the nurses looked at me like they had no clue what I was saying. These were RN’s! I had to be hospitalized last autumn for something unrelated to LC. This time when I said I have Long Covid, I received great compassion and understanding from doctors and nurses. As more of us speak up, as more of us choose to get involved in long-term studies, support groups, share with family and friends our life-changing challenges, we are educating a world. Yes, you are a survivor! And in spite of suffering for six years, sharing your heart with others can still give hope to others that are barely hanging on. Wishing you strength and peace on this remembrance day.

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Profile picture for mbryant1380 @mbryant1380

I think all of us can relate. I unfortunately have had Covid almost every year (except 2023 and so far not this year…yet) since 2021, each time when I feel like the symptoms are declining, bam, I get it again! I feel like it has a personal vendetta out for me lol!
I belong to a support group and we meet twice a month via zoom where we vent, cry, share information, give love, encouragement and comfort to each other. And we were discussing that it feels like we can’t trust or feel safe in our bodies anymore. Yes there are many unfortunate things that can happen to us outside of Covid, but this “condition” is such a multi system disruptor you don’t know from day to day what we are going to burden with. Crazy that I have been like this for so long that I forgot what my body used to feel like symptom free.
My Covid recovery doctor says there are still studies going on and there are some doctors that are still trying to help us. He said there is a study going on for a drug called Baricitinib a Jak 2 kinase inhibitor. So some of the medical community has not forgotten us and believe it’s a real concern.
So I know it’s harder said than done but I try to enjoy the not so bad days and push through the bad ones, between this online support and my other support group it really I mean really helps.
Sending you all love and hope!

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@mbryant1380 *easier said than done*

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Profile picture for diverdown1 @diverdown1

@mbryant1380 Can you message me with the information for your Zoom group?

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@diverdown1 Oh absolutely! The host emails a new link every week. I will forward it to you when she sends it.

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Profile picture for caldiana13 @caldiana13

@klf58 I heard you this morning, my Friend. You said we are all survivors and you are right. You said, “ I feel the world has moved on and left us all behind.” I certainly was feeling that a few years ago. I had gone to the hospital and mentioned I had Long Covid and the nurses looked at me like they had no clue what I was saying. These were RN’s! I had to be hospitalized last autumn for something unrelated to LC. This time when I said I have Long Covid, I received great compassion and understanding from doctors and nurses. As more of us speak up, as more of us choose to get involved in long-term studies, support groups, share with family and friends our life-changing challenges, we are educating a world. Yes, you are a survivor! And in spite of suffering for six years, sharing your heart with others can still give hope to others that are barely hanging on. Wishing you strength and peace on this remembrance day.

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@caldiana13 Your reply brought tears to my eyes. Thank you for responding, although I am sorry you understand the struggle.

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Profile picture for klf58 @klf58

Today was a dark anniversary for me, since today 6 years ago I went to Urgent Care with what initially was thought to be the flu. 7 weeks later I was still sick and lost my dream job. I've never recovered and have many blood disorders, cardiac and lung issues, daily migraines, constant fatigue...you all know the drill all too well. It's very hard to realize it has been this long and I will never be the same. I feel the world has moved on and left us all behind. I'm glad for those who have recovered and regained at least some prior quality of life. We are survivors, even though I often feel that it would have been better had I died when I first got covid, just because long covid feels like a living death. Thanks for listening. You are the only group who will understand.

Jump to this post

@klf58
I feel the same way also. Today is my 6 year anniversary. Covid didn’t kill me at the time, but now it feels like a long slow death.

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I can only comment about how I have tried to handle my long COVID symptoms. I eat healthy. Organic as much as possible. No processed food. Fast food once in a great while and no seed oils, until there is more research on their effects on inflammation. Alcohol at a minimum. I am back walking more now. The long COVID really affected my lower limbs with some neuropathy, but this has also been mitigated and improved with physio and diet. I also eat homemade kimchi everyday, considered one of the 5 best foods on the planet. I drink warm water with lemon and a bit of cayenne pepper every morning, upon waking and I make a drink of organic sliced tumeric, ginger and cinnamon sticks with black pepper for better absorption daily. All this has made a real difference in how I feel.

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