This is Where We Are

It is very difficult mentally to watch the world spend our money on an adventure that should never have taken place and is NOT my or your responsibility to rectify . I did not choose long Covid yet who has truly come to my defense and all the sufferers of LC. I hate my ranting but the idea that people making a choice to pay millions to see the titanic are mourned but are we?? We cannot work ,often cannot walk ,cannot breathe , cannot sleep ! Where are our rescuers ??? Let’s give the power to do good for everyone not to selfish wealthy folks !!

saille412, thank you! Indeed, this is where we are. My life dealing with anxiety and depression has taught me the following. Acceptance is the First Step towards Transformation. With this in mind, I declare that your refrain cannot be repeated too much; This is where we are.

“We don’t know too much”

After 15 months of crushing 24/7 fatigue, non-refreshing sleep, debilitating brain fog, and impaired communication abilities (which for me has been diagnosed as “mild cognitive impairment.” Although it doesn’t feel mild at all,) painful pins and needles and body soreness everywhere, I actually don’t know what I'm dealing with except for the common experiences being identified as Long Covid and the fact that my symptoms hit me like a freight train all at once, in the spring of 22. I was never aware of having Covid, I was ridiculously careful, didn’t have any respiratory symptoms, only felt “weird” for a bit and now my I am a different person. This is where I am.

“There is no real set of symptoms that can identify us as having LC”.

Yes, the variety of symptoms is baffling. That said we are now part of a community of people dealing with Chronic Fatigue Syndrome. Myalgic encephalomyelitis, (ME) commonly known as C.F.S., affects 15 to 30 million people worldwide with many of the same symptoms as LC. There is no known cause or cure, it’s been around for a long time, most doctor’s know nothing about it, with little research or acknowledgement by the medical community. The advocate group MEACTION.NET has taken the LC cause as their own. Everyone dealing with LC should become familiar with them.

We feel alone, we are not alone.

“Western medicine helps. But the allopathic method is to treat the body as individual parts….”

I’ve been to specialists for over a year which has basically ruled lots of stuff out but has given me little understanding as to what I am dealing with. Specialists see things through their own particular lens. I’m officially bored with overworked specialists looking at me blankly telling me they don’t know anything about Chronic Fatigue Syndrome or Long Covid, or worse, telling me it’s all in my head.

I have been using a CPAP, sleep machine for Hypoxia, (not enough oxygen on the tissue level) which I attribute to getting my communication skills back. Although the sleep doctors have not been all that helpful to be honest.

I’ve been diagnosed by a Neurologist with “Mild Cognitive Impairment” after a short cognitive test. I have to wait months for more in depth cognitive testing. I’m hoping these tests will lead me to learning strategies to deal with this messed up brain of mine.

With the help of a friend, I’m looking at a year’s worth of labs and tests, including a brain MRI to understand all of the things that these tests have ruled out.

So here are my “This is where I am” statements.

With the help of deep breathing mindfulness. I am accepting that I am a different person now.

I am repurposing the many things I know about managing my mental health to this new reality.

I accept that I probably will never know exactly how or why all of this is happening to me.

I don’t accept that my life is over. It is different. I am different.

Years ago someone said to me about her mental illness, “When I can accept that when my past dreams for my life will not come true, but life can still be great, that’s when I know I will be ok.”

Again, saille412, a very big Thank You! I hope we connect and keep your brilliant mantra alive.

THIS IS WHERE WE ARE.

So well said, Mark.

It's crucial (for all reasons) to be intimately aware of who we are and how we feel on all levels. It's the basis of self-awareness, and self-nurturing. With our cultural's focus on who we are based upon everything outside of ourselves (career, money, power, beauty, etc.), the self is ignored.

AC has turned that on its in every way. We're now left to deal with the aftermath alone.

In the midst of the crisis, health care workers saved our lives. But now? We're stranded on the island of questions without answers, frequent denial of physicians, and the claw-back of support.

What you're doing is self-assessment and finding solutions to an ever-shifting physical landscape.

And you're sharing that journey here.

That is where you are. And it helps the rest of us with where we all are.

I think having a clinical team that is somewhat familiar with long covid really helps. I'm enrolled in the "post covid" clinic at Mt. Sinai in NYC. One of the first things that my PA Coordinator said was that covid tended to find our weaknesses (e.g. in my case, a slight hand tremor that I've had for a couple of decades {I'm 73} became so pronounced that I can no longer put in contacts). The neurologist that I saw (for the tremors and brain fog) said, "If it will make you feel better, I can order a bunch of tests, but I can almost guarantee that they'll all come back "normal". I'm not a clinician, but I think the theory that covid (and some other viruses) cause micro-clots that block blood flow through capillaries (reducing overall blood flow to various organs, including the brain) makes some sense. I guess we'll see.

Marcslifer, please keep us all posted. I'm so glad when I hear someone's participating in studies or has access to Covid clinics.

Good observations.
Yes. Accupuncture helped me the most. We have to look outside the modern medicine box

I agree with covid targeting the areas of the body that we’ve had weaknesses. My first symptom of covid, before the fever was pain in my left ankle that I had broken and had surgery on 14 years ago😳Next issue was overactive bladder symptoms, causing accidents on the way to the bathroom with no real sense of urgency. I’d had a UTI two weeks prior. Being treated now for this AC diagnosis of overactive bladder. I’ve had varicose/spider veins for years. 3 weeks after testing positive for covid my feet and ankles both started swelling. A few weeks later it included my calves. A few more weeks, and it had crept up to both knees affecting mobility. It didn’t respond to elevation or icing. I searched online, self diagnosed it as lymphedema, then got the formal diagnosis. We have a local Lymphedema clinic that I was referred to. Went 2x a week for a few months to get the swelling under control and until insurance approved a compression pump for home. Right now my biggest concerns are shortness of breath and body aches, and a random cough that comes out of nowhere. My biggest breakthrough was in finding a local post covid clinic. First was a Zoom interview, just listening, answering questions. Second was in person. More answering questions, getting inputted into laptop, followed by referrals for sleep study, pulmonary function test, 6 minute walking test, and chest X-ray. Diagnosed with severe sleep apnea, and have to go back in a few weeks to try out different masks, canula etc. All of these conditions are new to me but targeting areas of my body that I’ve had issues with in the past.

The LC cough is the worst for me. Never stops. Vocal chords are now permanently damaged. Solid foods are a nightmare for me.

The good news for those who have the LC cough: My son brought me a tincture for lung health/severe cough.

It is the least I've coughed in THREE AND A HALF YEARS!

It's by Wishgarden Herbs. Called "Serious Cough." This tincture is nothing short of a miracle.

It has great ingredients, but if you're allergic to mullein, be aware of that.

My theory is that if you had the original virus, the lower respiratory virus, it attaches there. Not so much (typically) if you had the later upper respiratory virus. I had Covid in March 2020, and it's as if it has never left my lower respiratory system. This tincture seems to keep it at bay.

It's soooo worth a try.