[Es gibt eine Deutsche Version dieser Kampagne. Für eine bessere Übersicht habe ich diese getrennt. Deutsche Version hier: https://gofund.me/8a58bd4e1 Die Spenden werden zusammengerechnet.]

Hello ♡

To everyone stopping by,

It's not easy for me to ask for help. But after many years of unsuccessfully trying bureaucratic ways, I'd like to at least give it a try.

My illnesses

I've been living with severe ME/CFS (myalgic encephalomyelitis) for many years (pre-pandemic), at times even very severe, with severe MCAS (mast cell activation syndrome), severe POTS (postural orthostatic tachycardia syndrome), MCS (multiple chemical sensitivity), countless allergies, asthma, fibromyalgia, myofascial pain syndrome, a multiply unstable spine (including possibly CCI (craniocervical instability)), atypical severe migraines with daily pain and daily severe nausea (though this is probably triggered by something yet to be discovered), and many other illnesses.

There are so many illnesses that, with gallows humor, I call it "illness bingo," even though the situation is no laughing matter. According to studies, even severe ME/CFS on its own seems to have roughly the same quality of life as AIDS and some terminal cancers a few months before death.

I have so many other illnesses triggered by ME/CFS that I sometimes lose track, and it's as if my body wants to take on almost every illness it can.

However, not even all of them have been definitively diagnosed. It seems almost certain that I have other illnesses, such as SFN (small fiber neuropathy), hEDS (hypermobile Ehlers-Danlos syndrome), and more. However, since there are hardly any specialists for these illnesses, and many tests aren't covered by health insurance, I would have to pay for them myself to obtain confirmation. This isn't possible. The same applies to further tests for illnesses confirmed above, which could reveal the full extent of the damage in my body (beyond what's visible on the outside).

As for my daily symptoms, it's even harder to keep track of them; I have them in almost every part of my body. Some of these include severe cognitive problems, including severe brain fog and inflammation, memory lapses, persistent dizziness, rapid heartbeat, flu-like symptoms, blurred vision, fight and flight, severe pain throughout my whole body, severe nausea, intolerance to light and noise, difficulty digesting food, loss of muscle strength, coordination problems, daily migraines, chronic tinnitus, and much more.

️ My everyday life

I've been housebound for a long time and partially bedridden. Because my serious illnesses mean I fall through all the gaps in care, and I haven't received the medication and treatment I need for so many years, while the constant, unsuccessful struggle with bureaucratic hell has been extremely damaging to me, my health has continued to deteriorate.

I'm now completely bedbound, although after very severe ME/CFS, I've at least gotten back to the point where I can sit and walk briefly between rooms for less than an hour a day (lots of breaks). This takes all my energy, is overwhelming, and immediately exacerbates my cognitive problems. But it does improve my quality of life, for example, being able to at least get something from the fridge or briefly pet the dog out of bed.

During the most difficult phase, I could only go to the toilet with my last bit of strength, could barely speak or listen, could not tolerate any light or noise, could barely comprehend my thoughts, could not bring anything to the bed myself, etc. This phase can return at any time, and due to the lack of care, in addition to the never-ending pressure of being denied help by authorities, I have to accept this as a permanent condition sooner or later.

I am grateful that I have been given another chance to regain some of my life. It is still hell on earth for me, but in comparison, it is a small chance to still have a few social contacts online in small steps (I haven't been able to receive any visitors for over two years; before that, it was at least once a year).

I also hope that I can regain two hobbies. That would be streaming and digital drawing, and of course, some contact with nice people. In my condition, that won't be possible often; it only works under adrenaline, and it's a huge risk, but I would very much like to be able to participate in this. This wish is one of my last remaining anchors, along with my dog and my small family.

Without adrenaline, I can still only speak and listen to a few sentences, but after so long and after suffering a big crash, with adrenaline, I can sometimes do a little more. So, that would occasionally open up the possibility for my hobby again. (To avoid any misunderstandings: I wouldn't make any money from it.)

The big problem is that I can't sit any longer, and I'm still bedbound. I only have an old PC, and my bedroom isn't barrier free. I can't get to the PC or anything else I need on nad days, and even everyday tasks like opening windows, etc., depending on the phase, drain my limited energy or are impossible to do on my own.

Even if bureaucratic procedures are beyond my capabilities anyway, I would still have to force myself to do it and try. But there's the problem, too, that I haven't been able to get to the PC for a long time.

Renovating my apartment has been urgently needed for years, but I can't work to finance it and never will be able to again. I've run up significant debts to survive on food, rent, and the few medications I could pay with it. At the same time, almost all of my rights to financial assistance (health benefits) were arbitrarily withdrawn because I could no longer defend myself. This means I'm in debt every day just to keep a roof over my head and have something to eat. On top of that, I would have to pay for almost all of my medications and treatments myself, which isn't possible.

It's simply impossible for me to make my apartment, or even just my bedroom, barrier-free. With each passing year, I have less, while it becomes more and more urgent.

Before this is misunderstood, the renovation wouldn't just be a "luxury," aka being able to participate in a hobby again; it would make everyday life easier and give me some security if my condition worsens again.

Medical situation

Since illnesses like ME/CFS and POTS fall through the coverage gap, I would have to pay for almost everything myself. I can't afford all the medications and supplements I need, except for a minimal selection – especially not the expensive ones that could actually make a difference. I can only afford a few cheaper supplements, one medication for ME that only slightly alleviates muscle weakness, and a few non-prescription medications for comorbidities (such as allergies and dry eyes) through debt. It's unclear how I'll ever pay this back. Anything else for ME/CFS is unthinkable, anything for POTS is unthinkable, the necessary tests are unthinkable, the necessary private doctor's appointments are unthinkable, etc.

To alleviate the worst symptoms, it would take an estimated €700 per month for medications and supplements for the various illnesses (excluding those that the health insurance would have to cover, and which I still don't receive).

For a chance of noticeable improvement, especially given my long and severe course of illness, special additional therapies would be necessary. But they are prohibitively expensive:

Autoimmune absorption: approx. €100,000 (one-time)

IVIG therapy (plasma-derived immunoglobulins): approx. €60,000 per year

Private diagnostics (e.g., for CCI, other instabilities, intracranial pressure, SFN): approx. €6,000 (one-time)

Possible CCI surgery abroad: approx. €150,000

These sums are completely beyond my means and, without connections, are also unattainable for me via a GoFundMe.

But a little bit of quality of life in everyday life might be achievable with the help of this campaign. And that's exactly what I'm asking for help with.

I would like to have my bedroom converted to be barrier-free. So I can help myself a little better, even if my condition worsens again, and if my health allows, I can participate a little. Less pain and saving some energy would be a valuable plus.

Fundraising Goals

Goal 1: New Bed

My old mattress has been completely worn out for years and only makes my pain worse. Even the old rigid slatted frame doesn't allow me to prop myself up at least a little higher (as a substitute for sitting and also better for my legs due to POTS).

I urgently need:

• a stable, well-fitting mattress,

• an adjustable, electric slatted frame,

• a new bed frame (my current one wouldn't work with a different slatted frame)

Goal 2: Make the PC accessible & a workstation by the bed

This would require, among other things:

• a stable overbed table with wheels (a proper one for over the bed, not a small plate for the edge),

• a customizable keyboard tray,

• a mount to attach the monitor to the wall with a swivel,

• wall cushions along the bed,

• edge protectors,

• an accessible mouse,

• input devices that facilitate clicks and movements (e.g., a Steam Deck or a TourBox could work – I'll take a closer look at what helps with everyday PC use),

• two shelves,

• a PC mount,

• wood,

• small items,

• a small allowance for the working people,

• (possibly anything that comes up spontaneously during the renovation).

Goal 3: General accessibility in the room

This includes:

• an electric window opener,

• an electric curtain opener,

• an electric shutter opener,

• a dimmable lamp with remote control,

• a very low-indirect light,

• a rolling shelf,

• boxes for the shelves.

Goal 4: Symptom relief

I'm allergic to almost everything – my MCAS & MCS are severe. My eyes also cause a lot of problems, my body is becoming increasingly unable to regulate its temperature, etc.

Therefore, the following would be helpful:

• an air purifier,

• a humidifier,

• sound-proof curtains,

• sunglasses (for indoors),

• glasses,

• a good pillow,

• a good duvet,

• warm socks.

Goal 5: Medications & Supplements

I would like to stock up on some helpful medications & supplements to achieve some stability. This refers to the "cheap" items financed so far through debt, not the high amounts theoretically required per month.

Optional Wishes

Since it seems impossible for me to ever make it to this goal, and I'm worried that wishes without accessibility would be too much, I'm not saying anything about the two hoped-for hobbies. Whether I'd ever be able to use them by then is also questionable.

If you'd rather donate for something else, I'd ask that you please give something for my old dog. Generally, my dog is more important to me than my life. Please donate for him if both purposes are acceptable to you. ♡

Costs

Unfortunately, all of the above is very expensive. Compared to the required therapies, it's a one-time "bargain," but of course, it's a lot of money.

I have little hope that any goal can be achieved, but I'd like to try. At least that way I don't have to ask myself "what if."

Unfortunately, researching all the costs would be very time-consuming and beyond my capabilities. Especially since I have such doubts about getting the campaign out there. I'm therefore setting only a partial amount as a goal for now, the minimum necessary amount.

The goal here is adjustable at any time, and I can have partial amounts paid out. If I do raise enough money, I would gradually finance some of it and then increase it by the amount of the next researched amount. This way, the money raised would benefit the goal, but it would save me from a huge immediate crash.

If you'd like, you can indicate in a comment when donating which category the money is intended for. I'll try to take this into account. However, if the campaign is split too far and barely making any progress, it can delay the purchase of anything. If the campaign stalls and it's only possible to buy something this way, I would reserve the right to use it for the most urgent needs at the moment.

Final

Thank you for every donation! ♡

I would also greatly appreciate help sharing the campaign! ♡

I don't have profiles on sites like Instagram, Facebook, etc., I can't share it on accounts linked to previous streams (so it doesn't appear commercial or make anyone feel pressured), I have no connections to the press, my circle of friends is mostly poor people, etc., and I don't have the energy to register everywhere to distribute it. I won't be able to get attention for it myself. Therefore, sharing it diligently would help a lot ♡

Thank you

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Note:

For health reasons, the campaign is being managed by someone else for me. The donations go into her account, and she uses them to buy exactly the things I've chosen.

100% of the donations are used for the purposes above, minus the GoFundMe fees (2.9% of the amount and €0.25 per donation).