Hello! My name is Matthew, and I am a gay male living in the Deep South in Alabama. I tried this one before and chickened out, so here is the permanent version that’s going to be here to stay, regardless of how I feel about it, since it’s what I need to do.

I. ME/CFS/Mental Health

A Note: Definition: ME, or Myalgic Encephalomyelitis, is a serious, long-term illness that affects multiple body systems, including the nervous and immune systems, commonly displayed as extreme, crushing fatigue that does not improve with rest. Additionally, patients experience post-exertional malaise (PEM), meaning minor physical or mental activity makes their symptoms drastically worse. To a detriment, in my opinion, ME has been historically recalled, combined, and morphed into Chronic Fatigue Syndrome. I don’t believe, and never will, that this adequately describes how I feel on an hour-to-hour basis.

- I have unknowingly had ME since 2020, after contracting COVID-19. PEM was mistaken for hypersomnia, which then led to a misdiagnosis of Kleine-Levin syndrome in 2021. My mental health physicians thought it was mental health-related (cue the “ME is in your head” crowd), so I underwent five medication changes in a calendar year from 2023 to 2024, which slowed to two in 2025. Post-COVID diagnostics have been underway since 2024, leading to my official ME diagnosis in mid-2026. My fibromyalgia diagnosis followed a couple of weeks later.

II. Fibromyalgia

A Note: Definition: Fibromyalgia is a long-term condition that involves widespread body pain. The pain happens along with fatigue. It also can involve issues with sleep, memory, and mood.

- My body is something I’ve quietly navigated my entire life. I’ve had various surgeries — most unknown to most — that were necessary, some not, to “improve my quality of life.” However, due to events out of my control, I do have severe nerve damage in my sacral complex from past traumatic events. That is something I am navigating with yet another doctor in Birmingham. I have had a therapist since 2018.

III. Transitory Issues & Solutions

As stated previously, various surgeries were performed on me at an early age. These surgeries required intense follow-up treatments, additional surgeries, and are now requiring genetic testing to confirm if certain conditions exist in my body that will dictate how my care is to be developed — inside and outside of my status with ME and fibromyalgia.

To attempt to reduce chronic pain issues and try to avoid PEM flares, I have been told to use an acupressure mat and take NAD+ supplements to aid my body in the ATP process.

IV. Current Needs

At the present moment, things are simply rough. I am currently on a rotating regimen of 12 capsules a day — these range from prescriptions for my anxiety and depression to vitamin replacements and hormone modulators. Medication alone for me is around, if not above, $100 a month. I would be lying if I said I hadn’t put off standard bills to attempt to keep myself healthy and alive, and although the choice is tough, it’s one I’m faced with on an all-too-regular basis. Additionally, I am trying to navigate moving out of a rather unsafe environment (mold, structural issues, aging home) and am needing to relocate to somewhere safer and more inhabitable for me and my two animals — my 15-year-old calico, Omni, and my fluffy 10-year-old calico, Minerva. I do have the ability to do this alone, but I would be lying if assistance wouldn’t speed up the process, and doing it alone would be putting my teeth to the pavement in a financial sense — more despondent than it already is. As of this year, not counting student loans, since 2020, I’ve accumulated nearly $3,000 in medical and related debt.

Additionally, I’ve had to take unpaid time off to deal with various appointments, medical issues, medication transitions, and flare-ups from my various issues. It would be nice to catch up on things that have mounted so far. I hate that my pride didn’t allow me to speak out sooner, but again, we are where we are. I’m trying the best I can to navigate all of this at once — it’s just difficult when you’re on your own.

V. Future Needs

I do have more appointments coming up in December and January that have estimated totals of ~$500+ between all of the visits. In December, I will undergo genetic testing for the aforementioned long-term issues. Genetic testing isn’t something cheap, and it’s less something I ever wanted to undergo, but this is simply where we are. I’ve had a rheumatologist local to me dismiss my concerns, so I’ve now had to reach out to a secondary one — and that appointment isn’t until 2027. Visits to my GP for monitoring are included in the request.

V. Goal

I’ve set the goal currently at around $5,000. This will cover past and future medical expenses, therapy, travel, and incurred costs along the way. I’m hoping to manage to enter remission from ME in 2027 and be able to return to the lively, happy, and bright person most of you were familiar with before COVID.

If anyone has gotten this far, I truly thank you. If you don’t wish to donate, sharing is a blessing in itself. Additionally, I have clothing available on Depop @halcyonbasilica + have music available at softceremony.bandcamp.com

xx

MA