Fighting Chronic Illness: An Ongoing Battle

Hi everyone. Since December 2023, my life has been a nightmare. As of April 2025 (15 months later), but I am now diagnosed with 7 different chronic illnesses which will be something I will need to manage ongoing. Even if I ever go into a remission, I could relapse with too much exertion, meaning trying to do activities again. Or even something as simple as taking a walk or making dinner. This will add an ongoing challenge to my future life financially, mentally and physically.

Starting in Dec 2023, after my sixth Covid infection, I had extreme vertigo, palpitations, and then I began to develop many extreme symptoms like shortness of breathe, extreme high blood pressure, extreme weakness, comatose level fatigue, exercise intolerance, memory issues, cognitive decline, orthostatic intolerance, numb and tingling extremities, blue extremities, tremors, heat intolerance, excessive sweating, burning sensations throughout my body, extreme hunger (having to eat every hour feeling as if I was having extreme hypoglycemia), horrible body aches and pains, and extreme head pain. I became housebound early 2024 and bedridden. I worked from my bed so I could pay my bills. I worked through the pain in a horizontal position with my laptop. I would feel immense pain and symptoms after working and would collapse and sleep 15 hours a day.

I have mounting medical bills from the past year with all the extensive testing I did. I have an entire binder filled with testing blood tests, MRI, etc. mostly inconclusive.

My current diagnosis are severe POTS, dysautonomia, hypermobile Ehlers Danlos, Mast Cell Activation Syndrome, ME/CFS and Asthma.

My POTS makes it incredibly difficult for me to stand or be upright for periods of time, causing my heart rate to skyrocket into the 160s. I become faint, experience head pain, nausea, and dizziness. Along with shortness of breath. I spend most of my time horizontal to this day. Physical therapy has been suggested, however, I also have Me/CFS which causes PEM upon exertion and exercise is contra indicative of this disease. Exercise has caused some people with ME to become permanently bedridden, needing caretakers to bathe and toilet. I am trying to be mindful of my limits to not worse my conditions. I currently have tried many things to improve my conditions, but the improvements come in short waves and have been temporarily. Therefore; this is an ongoing battle.

Without a job, I am now struggling to pay bills and cover my medical expenses. I continue to get more bills from past testing. I have to have many follow ups and check ins causing more mounting bills. I have to pay out of pocket for my medical insurance since I am not working, also adding to expenses (plus the plan isn’t as good as one at an employer),

As I work to try to improve my condition and become more stable, I am very distressed about my financial position. This is causing me more stress and making it difficult for me to heal. Any help or support is greatly appreciated. It has taken me along time to consider writing my story as I am private and it is uncomfortable. I ask for your understanding and support during this trying time.

PS: My brother also has similar conditions as there is clearly a genetic component. Therefore, my family is overwhelmed with trying to support and care for us. My mother is also unwell. It has been a huge challenge