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Such an isolating sickness
I have posted before and read all of your posts, at least as many as I can. This month is 2 years I have been dealing with this vicious, misunderstood illness. I am 53 yrs old and got sober at 47 after battling alcoholism since the age of 14. Getting sober saved my life. I was in the best shape, physically, obviously working on "growing up" due to years of being an active alcoholic. What I have found in AA has been an understanding of the disease of alcoholism and I felt understood for the first time in my life. This virus, when it hit, no one knew anything about it. In fact, people did not believe it was real, even some of the doctors I sought out for help. I am now in year two. That is part of the reason this support group is so important. We are all in a terrible situation. Although the medical community is starting to try and figure out what is happening to us physically, there are still those that think this is not real. This is an isolating illness. People will tell me, "just get outside" or "talk a walk, start exercising some." There are days when I do feel like being a bit active and so I am, however, as you all know, the PEM is real. This takes a toll emotionally. When there are people that do not understand, I isolate because trying to explain this to anyone, who does not have it, is similar to trying to explain alcoholism to someone who is not an alcoholic. The week before Christmas, I found my partner of 28 years deceased in the house we shared for two decades, and although I had to move out of that house because he would not stop drinking, I tried to help him stop. Took him to the ER 6 times in the three years before I found him dead. He had several health problems due to alcoholism. This horrible loss and grief affects anyone physically and emotionally, and being already hit with this virus, I believe it has set me back. I can go to AA and be heard and have people that truly care, but they do not understand this virus and what it does to people. So, all this to say, feeling alone is a terrible feeling. This support group helps, however, I believe there needs to be other ways to connect with others in this situation. Whether via Zoom or something due to people not being able to physically go places. I don't know if there are support groups online via Zoom or anything like that. If anyone knows of that sort of support, please let me know. If not, maybe it is something I will start. Thank you all for posting on here.
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Covid is gradually robbing me of my sight and hearing. I suffer from tinnitus and hyperacusis. I cannot be around people for any length of time because it becomes sensory overload on my ears. It is very strange because I’m losing the ability to understand, but still hear noise.
I have tried so many therapies and even had surgeries for cataracts, and balloon inflation of Eustachian tubes. Nothing helps me. I continue to get worse. I’m to the point of never leaving my house. I do have good support from my husband, but I have no life.
I have started with a Neurologist-ophthalmologist but fear it is just too late for me. I may simply cancel my appointments. I’ve lost the will to continue therapy that fails.
Even writing this is hard as my sight is so foggy.
I wish everyone good luck. I feel my luck ran out 2 1/2 years ago when I contracted Covid.
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4 ReactionsCelebrate every small achievement! Life always is different day to day. Long covid life is just life lived differently as well, but with more adjustments.
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1 ReactionI’m so sorry you’re going through this! I too have been grieving the loss of physical abilities and my sight gets affected as well. I am basically home bound at 53 which is incredibly isolating.
All of my friends are out living their lives and working while I am stuck on my couch. BUT, honestly I haven’t given up hope for some pharmaceutical to be discovered! I pray 🙏🏻 as that is all one can do once all therapies have been exhausted. I pray that something will be discovered and that more research will be put forth for us all!
Losing both hearing and sight is terrible and I’m sure terrifying for you. I think if anything is needed for all of us suffering from this is validation that what each of us are going through is bad, misunderstood and has a lot of grief from loss of having our lives, minds and physical abilities taken away…
I stand in witness to what you’re going through, the grief, loss, heartache at what had been, the fear of the future and the realities that this disease has taken our lives from us. It isolates, diminishes, invalidates - flinging us into the unknown. This is a reality. It sucks!
Yet, I also believe in hope that treatment is around the corner.
But first and foremost know you are not alone! From my isolating couch to yours, I give you witness and big hugs of support and encouragement during these tough times 🤗❤️
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3 ReactionsI certainly hope you are right about treatments coming, and thank you for your kind words.
I remember the aids epidemic well, and just how long it took for effective treatments to be found. I fear the treatments will not come in time to benefit me.
My only hope is that the damage done by Covid will not completely take my vision and hearing.
My belief in a complete recovery left me some time ago.
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1 ReactionSo many people have responded to this post. We all are dealing with this in one way or another. It breaks my heart to read what others are saying about the symptoms we are all battling. One day at a time, I try to think of something I am grateful for in the midst of waking up sick and scared for the future. I really want to start some kind of Zoom group or something but not sure how to do that. The only format I know is that of 12 step groups. This applies I believe. I do not know if anyone else is interested in something like that. Just know that every time I read something someone posts, either on this thread or another, my heart goes out to each one of you and I must remember to practice kindness with myself, too. Your posts have helped me feel a bit less isolated in this. Thank you. If anyone has any ideas about starting a group, private message me.
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1 ReactionAll of you sound like my fiance ….. 3plus years and a shell of himself ….. “ can barely drive either….. hearing” these familiar comments - especially about non understanding family really hit home to me as his caregiver- I wish all of you could be seen and heard for how it really is . Better days ahead for all —— someday sooner than later !
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