Help Michele Reclaim Her Health and Life

If you knew me before fall of 2020, you know that I was dynamic human. I was creative, quick, capable, and fiercely independent. For now, I am not that person anymore.

Some of my friends have strongly encouraged me to create this Go Fund Me so that my community can support me more easily. So, here we are.

How did we get here?

Since Fall 2020, I have been disabled by Long Covid. In addition, my disabling diagnoses also now include:

This condition has wreaked havoc on my life, resulting in significant and ongoing medical bills, reduced ability to work/earn money, cognitive impairment, challenging in connecting and communicating, increased costs of living, and my inability to manage many activities of daily living. I struggle to find words. I can't sit up for long some days. I am unable to/struggle to do any of the things I once enjoyed.

This year has been a perfect storm of sorts. My parents both died. My disability has been denied (currently under appeal). Daily pain is enhanced by the latest medical weirdness: shingles on my tongue/trigeminal neuralgia.

Living with an invisible illness

I realize this is an invisible illness. Maybe you've seen me and I look okay. I'm doing my best, but I'm not okay most days. I feel vulnerable sharing these details so publicly, but 1) I see this as a PSA: a window into the life of a person with an invisible disability; 2) I am one of millions of people struggling with this awful disease; and 3) I need help. I have canceled most of the services that made my life work because of lack of funds. Those gaps are no longer sustainable for me.

A day in the life

I sleep (or try to!) somewhere between 11-16 hours every day. Since I have insomnia due to nerve pain, most real sleep happens during the day. It takes my nervous system a long time to settle down at the end of the day. When I awaken, I am often extremely foggy mentally. I often have a migraine. I usually can't even make a list. I take my handful of drugs and supplements and drink some water. Since my gut is such a mess with this disease, I have no desire to eat until much later, if at all. Nothing tastes like much anyway. I have the pallet of a five year old now (haha), but I can't tolerate gluten, dairy, or sugar well, so... :(. I struggle with basic activities of daily living, such as cooking, so much so that I don't use the oven or stove for fear of forgetting what I'm doing.

Once I get up and going, I work for a while and then lie down to take my midday nap. This might be anywhere from 30 minutes to 3 hours. I limit my self-cares early in the day because taking a shower and getting dressed will sometimes use up much of my energy for the day. I use most of my daily energy to work and handle essential tasks. Some of this takes place late in the day due to my unpredictable sleep schedule.

The fatigue I experience feels like I'm wearing weights all over my body, or like someone turned gravity way up, but just for me. It is always present; it's a matter of degree: sometimes it's 5, and sometimes it's 11. I would like to go for a walk, but I find I can't go far. I can go around the block some days; this is a far cry from pre-LC, when I routinely walked around the lakes a few times a week. I think it goes without saying, but I can't walk my dogs.

I experience pain all the time: joints, nerves, muscles, skin...all the things. I'm super good at dissociating from it, but even so, it makes it very hard to rest well or at all, think clearly, and make decisions. I have found it best to take nerve pain medication three times every day to stay ahead of it. This is my only shot at getting any quality sleep at all.

When I am up and moving around, I am careful in my movements. Doing a little too much, changing position too quickly, or bending over to pick something up can result in sudden dizziness, headache, and nausea. If this happens, I must stop what I'm doing and rest immediately.

I've had migraines for most of my life. The kind of headaches I have had since the end of 2020 are horrific. They make me cry sometimes. They are worsened by weather, stress, not enough sleep, too much sleep, dehydration, bright lights, too much stimuli in general, hormonal shifts, certain foods, blood sugar fluctuation, and more. I long for the migraines of yesteryear.

Everyone knows how much I love my dogs and cats! Thankfully, I have a fenced yard for the dogs, but they need walks. Mini is in her twilight year (most likely). She has a help 'em up harness on all the time now so we can help her make it up the outside steps. She needs regular walks now in order to maintain her muscle mass in her old age. I don't regret it, but I have contemplated rehoming them due to the financial strain of making sure they are cared for well. That would be utterly heartbreaking for me, as I depend on them more now than ever for emotional support and snuggles. It is so important to me that they receive the cares they need. (EDIT: I found a group that provides assistance for dog owners like me in a pickle. They are providing vet funds and food. WOW! What a relief that is.)

And let's not forget my kitties. They are incredible healers for me. Birdie sits on my chest when my heart races. Willow has lengthy conversations with me, especially when she wakes up and as she falls asleep. Apple expresses his love through his very thorough grooming of my hands. The cats are much lower maintenance than their dog friends ;)

I have a LOT of healthcare appointments now. It's a lot to manage. They're exhausting to schedule, remember, and attend. Holistic care has been invaluable, but I sometimes have to cancel because I am just too tired or running a fever (a symptom of some of my illnesses).

The grief of a long-term illness

The hardest thing about this? My loss of identity. I miss myself. I miss being able to hustle and make things happen. I miss my ability to do things myself. I miss my memory. I miss being around people I love. (Not that they don't show up for me now, but making plans and keeping them is really hard for me now.) I miss creating things. Writing. Managing projects. Collaborating with people.

I miss my endless energy. I miss my ability to rise above. I miss being able to help other people.

I miss being a fully functioning mom. Fortunately, my child is doing great and is so successful in life, but everyone needs their mom sometimes, and momming is the best job I ever had. It's hard to be a great mom and focus on my child's life needs when I can't get up.

I miss being a good friend to my friends and family. Y'all are very understanding when I repeat myself 5 times because I can't remember I already told you, or when I can't remember what you told me 5 times. And when I don't call/text you back. It's not because I don't care. I'm not blowing you off. I just honestly can't remember long enough to complete the task.

I miss being able to treat patients like I used to. I have built an enormous toolkit of skills over the years, but I am too weak and tired to use some of them. Thankfully, I have a wonderful business partner who CAN do all those things, so everyone is taken care of, but I miss being the doctor I once was.

Life is a roller coaster. I have some okay days, followed by some terrible days, and occasionally I glimpse my old self. It kinda makes me sad but it's good to see her. When I have a good day it's easy to overdo it and then have a relapse.

Vulnerability and gratitude

Sharing all of this leaves me feeling like a great big whiner, but I figure there is value in telling the truth. I would be remiss if didn't add that I am SO GRATEFUL for all the help and support I have received over the past four years. I am blessed and loved. I have wonderful friends and family who have shown up time and time again in really important ways for me. I know I am not alone.

And the truth is we lack sufficient safety nets in this country. Disability services are minimal and challenging to navigate. I wish we could do better in this way. If/when I get well, I will advocate for people with disabilities. Long Covid is a thief. It robs us of happiness, joy, financial stability, ease, hope, and relationships. It leaves us wondering if taking a shower will ever be easy again.

I'd love some help so I can rest more, and better.

I know that LOTS of people are struggling right now. I don't deserve help any more than anyone else does. But if you'd like to help, even a little bit, here are the things I need help with:

Thank you!

Thank you for taking the time to listen. With this support from community, I believe I will be more able to rest, repair, and heal. I think we all know how damaging stress is to the body in the best of times! I definitely feel its effects as I navigate this chapter of my life, especially in this really really difficult year. Will I ever be my old self? No, because this illness has changed me. But I can heal.

With much love and gratitude,

Michele

PS - If you would rather give directly to me, you can use my Venmo at @michele-renee-4, or CashApp at $DrStockheart. Sending hugs and gratitude your way. <3