Long Covid stole my life. Help me get it back.

In December, I'll have been living with long covid for two years.

I survived acute Covid, but it destroyed the life we had before it. It's recently progressed and I need to take time off to recover so I don’t become fully disabled. But battling this illness in an expensive city has drained us. There’s no public assistance for this, so I’m raising money to help cover bills during recovery.

I'm not good at asking for help, especially when there's so much need in the world. I feel selfish. But my will to live and get better is stronger than my pride.

The two pictures I posted are before and after covid - only taken a couple of years apart. The picture of me with our pups was the last time I was well enough to spend much time with them downstairs. My husband took it because he was so happy that I was able to be "normal" for a minute, but it's hard for me to look at. Long covid is associated with rapid aging because it destroys collagen. Seeing myself looking so radically different so quickly is hard.

It started with extreme physical pain in my legs, neuropathy, and muscle twitching. Then the weakness hit, along with pulmonary and neurological issues. High blood pressure that can’t be treated because sometimes my blood pressure is way too low. Tachycardia can’t be treated because of spells of extremely low heart rate. Hair loss. Localized and full body tremors, internally and externally. Vertigo and dizziness. Mild seizure activity. Full-body pain level is always at least a 4. Nerve pain that feels like being stabbed with a hot knitting needle. I used to hike for hours, now I literally can’t walk a quarter mile without breaks.

The pain was easy compared to what happened when the inflammation attacked my brain. It took away my humanity. I only remember small bits of that time. I was full of rage and frequently begged and screamed to the universe to please let me die. Miraculously, this is the one symptom that we’ve been able to contain, with anti-inflammatories, supplements, and prescription anti-histamines that help with inflammation. Everything else feels like an illness - this felt like an invasion. I’m so grateful that my husband loved me even through this and that I have a great doctor who knows me well enough to know that it was serious and that it wasn’t depression or anxiety.

For five horrible months this year, we thought I had ALS. My neurologist ruled it out but told me that my muscles and nervous system are permanently damaged. It can get better, but not completely. And it can also get worse. My appointment with him was a huge wake-up call. Part of my initial exam was similar to a sobriety check. Just walk in a straight line - easy, right? I couldn’t take two steps with my feet in a row. I fell into the wall. All I could say was “I used to climb mountains.” He understood. He said there’s a mini epidemic of miserable, suddenly disabled Seattlites. We all miss the woods.

The only thing that has been found to ease a serious crash is radical rest. Laying down and moving as little as possible for as long as possible. Meaning, weeks in bed for as many hours a day as possible. It goes against everything I've ever known about the importance of moving your body to get healthy. But with long covid, muscle cells can't use oxygen effectively to heal, so any type of physical activity only makes patients worse. A grocery store run causes us muscle damage normally associated with a harsh workout. But our torn muscles don’t heal and grow stronger.

My husband has been forced to put aside his business to become my caretaker because I can’t even cook a meal anymore. My meds, supplements, and treatments we've tried have drained our savings and retirement over the past two years, even with insurance.

I've always been an introvert, but I've always been super active. Before Covid, it was so rare for me to spend a whole day at home. I'd hike beyond my limits regularly, I loved CrossFit and weightlifting - being strong was such an important part of who I was. I'm deeply mourning that person. She was fun. I'm also trying to stop beating myself up for not being able to be her anymore. Most days I don't really succeed.

At times, it's so incredibly boring. At times, it's terrifying. It's often undignified. There are symptoms that I won’t talk about because they’re humiliating. I often go to sleep truly thinking I might not wake up.

Long Covid itself isn’t fatal (as far as we know.) Deaths attributed to it are usually due to organ and system damage that leads to heart attacks, cardiac arrest, kidney failure, or strokes. Deeply sadly, some just give up and find their own way out.

I’m incredibly lucky that my husband supports me unconditionally. Divorces are common in my support groups because spouses can’t handle how quickly their lives changed or the burden of caregiving. My husband feeds me, helps me move around, takes care of me in ways that would be normal in about 30 years. He shouldn’t have to do this stuff now. But even though I can’t look in the mirror without crying, he still looks at me exactly the same way he always has. He can make me feel beautiful when I feel destroyed by ugliness. Some days, that’s the one thing I can hold onto. Right now, the greatest gift I could give him would be to take a walk in the woods with him. I’m going to fight like hell until I can take that walk.

I was going to move back to my home state where we could get more day to day support and escape the high cost of living in Seattle, but I’m not well enough to move and I have more access to care here. The only treatment options for me now are experimental protocols - chemotherapy or antiretrovirals - and it’s hard to find those treatments for this illness in many places.

Over the past few weeks, my health has taken a dive. Walking has become very difficult, and my muscle atrophy has gotten worse. I crawled upstairs tonight because my legs were shaking too violently to navigate steps. I've developed symptoms that could be myocarditis or pericarditis. I'm at a critical point where I need to take the time to rest and do more cardiovascular testing. I plan to use FMLA, but it will only cover a portion of my salary. I've used up my sick time with an emergency surgery earlier this year.

I'm hoping to get a bit of help to cover rent for a few months so I can take a few weeks off work entirely, followed by a few weeks of working half time. My doctor believes this will get me back to a safe baseline and my employer is understanding and supportive.

I have to get well because if I become unable to work at all, long covid doesn’t qualify you for disability. For this, there is no social safety net, but I don't make enough to be my own safety net. So even though it's almost as hard as this illness has been, I'm asking y'all to help me knit a safety net so I can take the time I need to recover over the next couple of months.