covidlonghaul

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    Every year the day before Thanksgiving is a very important day for me …it’s the anniversary of the day I was diagnosed HIV+. 37 years ago.

    This year is very different because this month I was diagnosed that I have Parkinsonism. One of the symptoms is having balance issues but I’m stubborn and Monday I was out hiking (with my trekker poles) and I fell …hard. I had another fall a month ago. The first one I injured my shoulder but I didn’t go to PT yesterday because I felt light headed and kind of fuzzy and I have had a weird headache continually after the recent fall. It’s different than the headaches I get with the debilitating migraines I have been dealing with from Covid Long Haul. So I fear I may have a concussion. One more health problem, but it will fade. I can handle it…because I share this writing at a time when despite today’s challenges I feel very blessed because I survived so much from dealing with AIDS. PLEASE READ BELOW.

    The day before Thanksgiving this year will mark the 35 year anniversary of when I was diagnosed HIV+. Every year when this time arrives I question why I am still here. Although a part of me can celebrate my life and be so thankful every year for having another year, another month, another day still being here, I am also sometimes consumed with guilt … Survivor’s Guilt. “Why me?” Why me in an opposite sense. Not why me… why did I become HV+? But why me … why am I still here and so many others are not? I am part of a small minority who made it through the 80’s when AIDS was considered a death sentence and are still around to talk about it.

    Today many people call me a “Long Term Survivor.” They tell me that it is a miracle that I am still alive, and they honor my life and fighting spirit...but in the mid to late eighties I didn’t think of any other title than that of being HIV+. In most people’s eyes or interpretations I “had AIDS.” I had choices to make but none of them projected to the foreseeable future or even held out hope. I just developed a close knit support group of friends and family and then joined a very special group. We were a support group of HIV+ people who came together to listen, share, understand, support and love each other in a way no one outside the group could ever imagine, could ever believe… could even fathom. No one other than us could feel our pain and worry that was so thick you could feel it in the air in the rooms whenever we met.

    We talked of our fears: of death, of pain, of hurt and how some of us were dealing with loved ones who did or did not know our plight, did or did not support us. We talked of our community that so many folks in the public could never understand. Those who misunderstood us, misunderstood HIV & AIDS, and harbored fear themselves often ran from us, judged us, judged our current and past actions, judged who we lived with, who we loved with, and later who we were dying with. The MIS-understanding in the public eye was so vast, so strong and so wrong that it made living and fighting off dying with HIV even harder. To say that there was prejudice is an understatement, to say that there was hatred was a sad reality, to say that there was fear was dead on accurate… lots of fear… and most of it fear of the unknown. People partly told themselves what they wanted to hear because there were very little facts. People displayed their fear outwardly or let it fester internally, but we were the human beings living in the bubble, inside the fishbowl.
    People assumed we were all gay or drug addicts. These were obviously misconceptions sometimes, but it was so much easier for some people to pigeon hole us so that they didn’t have to include themselves, including the possibility that they too may become HIV+. There were many who even felt that we “deserved” our (possible) death sentence and were callous and cruel beyond explanation, and their feelings often spread. It was easier to fear than to accept, to hate than to love, to judge than to try to understand.

    At our meetings we shared horror stories: of families, partners and friends who turned their backs on some of us and completely walked away (in fear, anger, judgment and often just to protect themselves in their minds). We talked of some doctors in the medical field from the military to the public who saw HIV+ patients wearing yellow hazmat suits and operated inside of plastic confines to take care of their patients… out of obvious overblown fear. We talked of hospital rooms with bright neon signs at the doors of our rooms announcing our reality to all who entered – sometimes even family and/or friends who didn’t know of our diagnosis beforehand. We talked about side effects and weakness, and living while we were dying and dying to get over the pain of living. We often were outcasts and misfits if for no other reason than that it was easier to see us that way than to have to absorb the truth… and there was no one accurate truth… there still isn’t to this day.

    I am blessed to still be here today. It is easy to question why, and it can be very hard to have to process these reflections. So, the day before Thanksgiving is my anniversary. It is impossible for this holiday to come and go without my being reminded that I was diagnosed that day in 1987… 35 years ago. I later figured out that I contracted the virus in 1985...37 years ago. I am strong and vibrant today and my “numbers” are very solid. My T-cells have risen back up from the very low numbers I had in 1997 and my Viral Load dropped from the highest number the tests could determine down to undetectable 23 years ago and have stayed the same.

    Yes, I made some calculated changes as to how I was living my life and yes I have a fighting spirit, but some of it also has to just come down to luck or divine intervention, depending how you see things, which way you believe things. I think I am blessed and the God of my understanding has looked over me. Why? I am not sure. Maybe I will be able to accomplish some things, to give back, to take my experiences and by sharing them make a difference in people’s lives. Or maybe I am just still around because I have been hanging on. Today I am not sure. Today I honestly don’t know if I have to be sure. Today I am alive and in the simplest of terms, every breath is a bonus. Today I continue keeping my commitment to tell my story, to help paint a real picture that may change some viewpoints, to answer any and all questions no matter how personal they are in an attempt to be transparent, honest and true… and today I appreciate the opportunity to do so!
    So, in retrospective sadness and current pride, I look forward to this anniversary every year and want to honor the spirits of those friends who I lost from those support groups, to honor those who I never met who shared our path, to honor all those hundreds of thousands of people who died along this path right here in the United States and millions around the world. So many of them became such good friends and I mourn their loss…

    Moshe Mark Adler
    November 27, 1999
    May 24, 2021 edit

    UPDATE: In this time of Covid, sadly I recognize death tolls like those from another pandemic: AIDS (with no vaccine even after almost 40 years). I looked them up...the numbers, including current ones, are staggering:

    690,000 [500,000–970,000] people died from AIDS-related illnesses in 2019. 75.7 million [55.9 million–100 million] people have become infected with HIV since the start of the epidemic (that we know of). 32.7 million [24.8 million–42.2 million] people have died from AIDS-related illnesses since the start of the epidemic.

    #ChronicPain #PeripheralNeuropathy #BackPain #Headache #Migraine #COVID19 #covidlonghaul #Disability #MentalHealth #Depression #BipolarDisorder #Bipolar1Disorder #Bipolar2Disorder #TheMighty #MightyTogether #MightyMinute

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    I'm new here!

    Hi, my name is Cookiebun. I'm here because I'm in my 9th month of Long Covid and I'm exhausted by it... nobody else I know is dealing with the same thing and looking for others like myself.

    #covidlonghaul

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    I won a successful battle w/ Covid, but I had to fight for my life & it wasn't easy, ThankfullyI had help staying alive & getting stronger again.

    It’s ok, I do love the attention every four hours, but I can save you a lot of time & effort...I can tell you...I’m vital! I can save you the need to cuff me with velcro around my arm, save you wasting the disposable plastic cover for the thermometer, save you the need to close the device around my finger, and no need to watch the fun numbers go up and down on the rolling machine! Yup, vital...up and still kicking! My blood pressure and temperature are really close to what they were just hours ago! Coming in to do my vitals is actually an invasion into my time and what I’m doing, and it seems really redundant.

    Now don't get me wrong, I do love having visitors... except at 4 am in the morning! It’s hard enough to sleep in the confines of a hospital bed when I’m coughing incessantly, and trying to do breathwork just makes the coughing worse! Someone else also comes three times a day and they give me a tiny clear cup full of multicolored candy pills. Candy that is trying to keep me healthy. I appreciate when they take the time to go over them with me, instead of just putting them in front of me and walking out of the room without even saying anything. I wonder if I ate them like candy and chewed them up if they would help more or less?!? I do think they’d taste awful.

    In the big picture I’m very thankful to have all of you currently in my life. I’m hurting physically and emotionally and I know you are trying to help me feel better and get better. Your intention is to be there to support me. You come to check on me with a push of the red button on the remote! Then there are the ones of you that are Physical Therapists and Occupational Therapists that come everyday. You come to challenge me to slowly get back to the more vibrant, active, stronger man I used to be. You push me to do exercises that can be brutal. I often fail miserably, but you encouraged me to take breaks, be gentle with myself and over time I am SLOWLY getting stronger and my balance is returning. You had me start walking back and forth dependent on a walker, needing to take a break in less than 30 seconds, but I just walked around for 5 minutes...without the walker! A week ago I couldn't even stand. Now I can get out of this bed and go to the bathroom by myself. I can’t describe how good this makes me feel...proud, accomplished and thankful...my body is responding and returning to form!

    #COVID19 #PTSD #Survivor #Disability #ChronicIllness #ChronicPain #covidlonghaul #Migraine #Headache #Depression #Anxiety #MentalHealth #DistractMe #MightyTogether #thankful #grateful #relief #Happiness #Selflove #Selfcare #MightyMinute #Acceptance #Grief #MentalHealthHero #warrior #Stillalive #Hope

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    Comparing our journeys to others can weigh on us & lead to self judgement & shame. My journey is unique & I need to remind myself I’m doing just fine!

    It is so easy for me to beat myself up because I feel I’m not accomplishing enough…and thinking other people with the same diagnosis seem to be much more productive and successful. But many friends and family members regularly remind me that just staying alive, dealing with my pain and taking care of myself is a victory. I have learned that it never helps for me to compare myself with people who seem to be capable of doing more…because this just brings on very strong, almost debilitating shame & self judgement and leaves me feeling emotional pain that just adds to the physical pain I already have!

    So I try to always remind myself that I am doing just fine dealing with the hardships I face and I am practicing great self care to love myself exactly as I am… and accept that I am unique & different and I’m doing the best I can. It leaves more room to accomplish things that are within the limitations I have due to physical pain!

    I send you all blessings for moments of peace, serenity & less pain, and good health & healing!

    #ChronicPain #ChronicIllness #physicalpain #PeripheralNeuropathy #BackPain #neckpain #Migraine #ChronicVestibularMigraine #ChronicDailyHeadache #Headache #COVID19 #covidlonghaul #Disability #SocialAnxiety #Anxiety #Depression #Addiction #AddictionRecovery #PTSD #PainAcceptance #Acceptance #Happiness #Selflove #Selfcare #relief #EmotionalHealth #physicalhealth

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    Long haulers and Fibro

    Everyone is rightly accepting that #COVID #longhaulers have a legitimate claim of illness. Clinics are being opened up just for them. Their symptoms sound just like #Fibromyalgia .
    I consider myself a true long hauler. 25 years to get diagnosed. Why doesn't anyone care about us?
    #MightyTogether #covidlonghaul

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