MoldWarrior

@moldwarrior
I need to tell my story, in case it can help anyone in a similar situation
Community Voices

How does this #check works?

Hello, I am new and trying to work out how this Mighty communities work :) What is this my life is quite lonely because of a number of health problems, so weird that i can't even mention them to most people, so even when I feel up to going out (which is not often) I can't share anything personal. My #MentalHealth 'hasn't been that great lately, and I am afraid I am getting an actual #Depression ou have a ton of health problems that might take away your life you can't get #depressed , you just can't. So I am here :) can you please recommend me any nice groups here for a chat or sharing experiences? thanks

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I am not saying that chronic illness - ALL kinds of chronic illness - isn't hard to bear and isolating in any case. Very few people want to deal with someone else's pain and discomfort, and for some "friends" canceling one meeting at the last minute, or mentioning in passing that one is not 100%, is already enough of a dealbreaker.

Thing is, once in a blue moon you can find someone who is open to deal with a friend with an imperfect health. Maybe growing up they had a parent or relative with some kind of health issue, or they experienced difficulties in that department themselves, or they are doted with unusual compassion and open-mindedness.

These friends will be willing to educate themselves on your condition, read articles, overcome the societal prejudice towards not perfectly able people and even invisible illnesses, and they will invite you in their lives.

When I "just" had IBS, or gastric issues, or anxiety or even fibromyalgia and ME (which both used to be undoubtedly weird, even if now are getting normalised a bit) I was lucky enough to meet a couple of these "normo-abled" friends, who understood (sort of) my limitations and accommodated some of them.

I was careful to keep them out of the darkest moments in my life, as it would have been an unnecessary grief to them and they wouldn't have understood anyway, and our relationship was with 3/4th of myself, there was always this dark corner that would never come to light.

No need to mention that I rarely felt "heard" or "understood", but for me it was enough to feel accepted and still somehow play an active part in their life.

All this changed abruptly after I met with mold. As I mentioned in other posts, after miraculously (a miracle prepared by years of hard work) recovering from ME and fibromyalgia (or rather than recovering, giving them their true name and treating them, name which in my case was Lyme and reactivated Epstein Barr), I enjoyed a few years of decent health before my body was wrecked havoc once again by a casual parasite and a close encounter with some mold species living in my house.

The symptoms were even more violent and horrifying than ME, and remember that with ME for the most part of three years years I had to rest all day to be able to wash my hair, and couldn't walk more than some hundred yards without collapsing, so it wasn't exactly a cakewalk. Just like during the first year of ME, I had a hard time explaining to anyone what was happening because I didn't know it myself.

Then, when the truth started unfolding, it turned out it's not so easy to tell people that you are basically dying because of a tapeworm plus assorted parasites, and mold growing inside of your bowels.

First of all there is the "yuck" factor (make it capital letters). I don't know about you, but personally I didn't feel like telling a lot of people that I was basically a walking parasite depository, and I did kind of worry how that would project on my social image (the reaction of a couple of "friends" confirmed that I was correct in worrying). In a way it was more difficult to explain than back when I couldn't walk or move because of a mysterious retrovirus that no one could see (ME).

Also, me being contagious wasn't completely out of the question, so they were right in feeling "yuck" towards me.

For this reason during that period I mainly kept it to myself, never shared bottles or food with anyone, I accepted that I wasn't going to get any compassion for such a foul disease (two of them nonetheless, and concentrated on treating it.

The coming of CIRS (the insane reactivity to many species of mold) and Multiple Chemical Sensitivity brought up a new set of problems. The people I knew who were ready to accommodate some of my needs did not understand why I had this new set of issues, couldn't stay inside a building, had to leave if someone with a very strong perfume entered the room, that was WEIRD. Too much weird. And remember that ME and fibro were already quite weird. Other "friends"left.

In fact, if I had just kept being ill and courageously accepting my challenges, I might have met with the sympathy of some other compassionate people sympathetic to those who suffer. The problem is, the way I went about trying to save my life was also too much weird too handle for most people.

If you ever have been told by conventional medicine that there is nothing to do and you need to live in unbearable conditions, you may also know that before giving up and accepting your fate it's better to try everything else that is possible, or even impossible.

Although many complementary and holistic ways of treatment are completely sensible and have long lasting traditions and proof of use, for a lot of people anything that is not mentioned in the Mayo clinic website is too "woo-woo" to exist. In recent times sadly several complementary treatments have attracted the attention of various misleading media sources (you know which ones I am talking about, the ones with the crazy conspiracy theories) and this phenomenon doesn't help the treatment's reputation.

Anyway, to get myself out of trouble I had to delve deep into the foreign territories of herbalism, orthomolecular medicine, osteopathy, energy healing, just to mention a few, and the couple of (holistic) doctors I found who helped me and saved my life were pretty much despised by the system.

I always liked to be friends with reasonable people of culture devoid of particularly extreme views, but I discovered that most of those people held an irrationally violent prejudice against integrative or functional medicine. And a good portion of people with chronic illness (I painfully discovered that in my ME days) also shared that prejudice and despise and will not stand by me during my adventures in healing.

So, while in the beginning being ill was 1/4th of my life that I couldn't share with anyone, then later my treatments were another 1/4th.

That s where it gets even weirder. Since I have CIRS I get violent reactions to prolonged exposure to various types of mold, which is basically omnipresent in buildings, and because of that I can only live in hotels (W E I R D), while waiting to have the money and strength to go live in a van (these days more fashionable, but still weird). My lifestyle is so crazy that I don't have the heart to mention it to the few normal people I meet in my sporadic "normal life" situations, like classes or workshops or meetups. Needless to say that relationships with those people never get very far.

It makes me sad that I literally never met anyone with my issues in real life, and I don't know how to deal with all this giant iceberg of weirdness that I carry around in the tangible daily life, feeling like a penguin at a wedding party.

If by grace of a Higher Power I will get better (the parasites wars have been won, one mold colonisation has been defeated, the other mold is on its way out) I don't know how I can ever share my life with anyone. Should I just not mention any of the Hell I went through, and do like Holocaust survivors did, enjoy their new lease of life and go on, trying to forget?

But once one's health has been ruined, there will always be some other issue, sooner or later, so I shouldn't forget, I can't forget. Also, I'd like to honour these years of hard work and ingenuity and fighting teeth and nails.

Do I have to resign myself to never be seen and understood? Hide my past and my present, and basically lie most of the time? ("oh I forgot an engagement I have to leave, no, it's not because there is mold in this cafe, also because if I say it you won't believe me") Or do I accept that I will always be rejected because all this weirdness is just too much for anyone to bear?

You will understand me now when I say that occasionally I miss the days when I "just" had a serious chronic illness.

5 people are talking about this
Community Voices

I am not saying that chronic illness - ALL kinds of chronic illness - isn't hard to bear and isolating in any case. Very few people want to deal with someone else's pain and discomfort, and for some "friends" canceling one meeting at the last minute, or mentioning in passing that one is not 100%, is already enough of a dealbreaker.

Thing is, once in a blue moon you can find someone who is open to deal with a friend with an imperfect health. Maybe growing up they had a parent or relative with some kind of health issue, or they experienced difficulties in that department themselves, or they are doted with unusual compassion and open-mindedness.

These friends will be willing to educate themselves on your condition, read articles, overcome the societal prejudice towards not perfectly able people and even invisible illnesses, and they will invite you in their lives.

When I "just" had IBS, or gastric issues, or anxiety or even fibromyalgia and ME (which both used to be undoubtedly weird, even if now are getting normalised a bit) I was lucky enough to meet a couple of these "normo-abled" friends, who understood (sort of) my limitations and accommodated some of them.

I was careful to keep them out of the darkest moments in my life, as it would have been an unnecessary grief to them and they wouldn't have understood anyway, and our relationship was with 3/4th of myself, there was always this dark corner that would never come to light.

No need to mention that I rarely felt "heard" or "understood", but for me it was enough to feel accepted and still somehow play an active part in their life.

All this changed abruptly after I met with mold. As I mentioned in other posts, after miraculously (a miracle prepared by years of hard work) recovering from ME and fibromyalgia (or rather than recovering, giving them their true name and treating them, name which in my case was Lyme and reactivated Epstein Barr), I enjoyed a few years of decent health before my body was wrecked havoc once again by a casual parasite and a close encounter with some mold species living in my house.

The symptoms were even more violent and horrifying than ME, and remember that with ME for the most part of three years years I had to rest all day to be able to wash my hair, and couldn't walk more than some hundred yards without collapsing, so it wasn't exactly a cakewalk. Just like during the first year of ME, I had a hard time explaining to anyone what was happening because I didn't know it myself.

Then, when the truth started unfolding, it turned out it's not so easy to tell people that you are basically dying because of a tapeworm plus assorted parasites, and mold growing inside of your bowels.

First of all there is the "yuck" factor (make it capital letters). I don't know about you, but personally I didn't feel like telling a lot of people that I was basically a walking parasite depository, and I did kind of worry how that would project on my social image (the reaction of a couple of "friends" confirmed that I was correct in worrying). In a way it was more difficult to explain than back when I couldn't walk or move because of a mysterious retrovirus that no one could see (ME).

Also, me being contagious wasn't completely out of the question, so they were right in feeling "yuck" towards me.

For this reason during that period I mainly kept it to myself, never shared bottles or food with anyone, I accepted that I wasn't going to get any compassion for such a foul disease (two of them nonetheless, and concentrated on treating it.

The coming of CIRS (the insane reactivity to many species of mold) and Multiple Chemical Sensitivity brought up a new set of problems. The people I knew who were ready to accommodate some of my needs did not understand why I had this new set of issues, couldn't stay inside a building, had to leave if someone with a very strong perfume entered the room, that was WEIRD. Too much weird. And remember that ME and fibro were already quite weird. Other "friends"left.

In fact, if I had just kept being ill and courageously accepting my challenges, I might have met with the sympathy of some other compassionate people sympathetic to those who suffer. The problem is, the way I went about trying to save my life was also too much weird too handle for most people.

If you ever have been told by conventional medicine that there is nothing to do and you need to live in unbearable conditions, you may also know that before giving up and accepting your fate it's better to try everything else that is possible, or even impossible.

Although many complementary and holistic ways of treatment are completely sensible and have long lasting traditions and proof of use, for a lot of people anything that is not mentioned in the Mayo clinic website is too "woo-woo" to exist. In recent times sadly several complementary treatments have attracted the attention of various misleading media sources (you know which ones I am talking about, the ones with the crazy conspiracy theories) and this phenomenon doesn't help the treatment's reputation.

Anyway, to get myself out of trouble I had to delve deep into the foreign territories of herbalism, orthomolecular medicine, osteopathy, energy healing, just to mention a few, and the couple of (holistic) doctors I found who helped me and saved my life were pretty much despised by the system.

I always liked to be friends with reasonable people of culture devoid of particularly extreme views, but I discovered that most of those people held an irrationally violent prejudice against integrative or functional medicine. And a good portion of people with chronic illness (I painfully discovered that in my ME days) also shared that prejudice and despise and will not stand by me during my adventures in healing.

So, while in the beginning being ill was 1/4th of my life that I couldn't share with anyone, then later my treatments were another 1/4th.

That s where it gets even weirder. Since I have CIRS I get violent reactions to prolonged exposure to various types of mold, which is basically omnipresent in buildings, and because of that I can only live in hotels (W E I R D), while waiting to have the money and strength to go live in a van (these days more fashionable, but still weird). My lifestyle is so crazy that I don't have the heart to mention it to the few normal people I meet in my sporadic "normal life" situations, like classes or workshops or meetups. Needless to say that relationships with those people never get very far.

It makes me sad that I literally never met anyone with my issues in real life, and I don't know how to deal with all this giant iceberg of weirdness that I carry around in the tangible daily life, feeling like a penguin at a wedding party.

If by grace of a Higher Power I will get better (the parasites wars have been won, one mold colonisation has been defeated, the other mold is on its way out) I don't know how I can ever share my life with anyone. Should I just not mention any of the Hell I went through, and do like Holocaust survivors did, enjoy their new lease of life and go on, trying to forget?

But once one's health has been ruined, there will always be some other issue, sooner or later, so I shouldn't forget, I can't forget. Also, I'd like to honour these years of hard work and ingenuity and fighting teeth and nails.

Do I have to resign myself to never be seen and understood? Hide my past and my present, and basically lie most of the time? ("oh I forgot an engagement I have to leave, no, it's not because there is mold in this cafe, also because if I say it you won't believe me") Or do I accept that I will always be rejected because all this weirdness is just too much for anyone to bear?

You will understand me now when I say that occasionally I miss the days when I "just" had a serious chronic illness.

5 people are talking about this
Community Voices

I am not saying that chronic illness - ALL kinds of chronic illness - isn't hard to bear and isolating in any case. Very few people want to deal with someone else's pain and discomfort, and for some "friends" canceling one meeting at the last minute, or mentioning in passing that one is not 100%, is already enough of a dealbreaker.

Thing is, once in a blue moon you can find someone who is open to deal with a friend with an imperfect health. Maybe growing up they had a parent or relative with some kind of health issue, or they experienced difficulties in that department themselves, or they are doted with unusual compassion and open-mindedness.

These friends will be willing to educate themselves on your condition, read articles, overcome the societal prejudice towards not perfectly able people and even invisible illnesses, and they will invite you in their lives.

When I "just" had IBS, or gastric issues, or anxiety or even fibromyalgia and ME (which both used to be undoubtedly weird, even if now are getting normalised a bit) I was lucky enough to meet a couple of these "normo-abled" friends, who understood (sort of) my limitations and accommodated some of them.

I was careful to keep them out of the darkest moments in my life, as it would have been an unnecessary grief to them and they wouldn't have understood anyway, and our relationship was with 3/4th of myself, there was always this dark corner that would never come to light.

No need to mention that I rarely felt "heard" or "understood", but for me it was enough to feel accepted and still somehow play an active part in their life.

All this changed abruptly after I met with mold. As I mentioned in other posts, after miraculously (a miracle prepared by years of hard work) recovering from ME and fibromyalgia (or rather than recovering, giving them their true name and treating them, name which in my case was Lyme and reactivated Epstein Barr), I enjoyed a few years of decent health before my body was wrecked havoc once again by a casual parasite and a close encounter with some mold species living in my house.

The symptoms were even more violent and horrifying than ME, and remember that with ME for the most part of three years years I had to rest all day to be able to wash my hair, and couldn't walk more than some hundred yards without collapsing, so it wasn't exactly a cakewalk. Just like during the first year of ME, I had a hard time explaining to anyone what was happening because I didn't know it myself.

Then, when the truth started unfolding, it turned out it's not so easy to tell people that you are basically dying because of a tapeworm plus assorted parasites, and mold growing inside of your bowels.

First of all there is the "yuck" factor (make it capital letters). I don't know about you, but personally I didn't feel like telling a lot of people that I was basically a walking parasite depository, and I did kind of worry how that would project on my social image (the reaction of a couple of "friends" confirmed that I was correct in worrying). In a way it was more difficult to explain than back when I couldn't walk or move because of a mysterious retrovirus that no one could see (ME).

Also, me being contagious wasn't completely out of the question, so they were right in feeling "yuck" towards me.

For this reason during that period I mainly kept it to myself, never shared bottles or food with anyone, I accepted that I wasn't going to get any compassion for such a foul disease (two of them nonetheless, and concentrated on treating it.

The coming of CIRS (the insane reactivity to many species of mold) and Multiple Chemical Sensitivity brought up a new set of problems. The people I knew who were ready to accommodate some of my needs did not understand why I had this new set of issues, couldn't stay inside a building, had to leave if someone with a very strong perfume entered the room, that was WEIRD. Too much weird. And remember that ME and fibro were already quite weird. Other "friends"left.

In fact, if I had just kept being ill and courageously accepting my challenges, I might have met with the sympathy of some other compassionate people sympathetic to those who suffer. The problem is, the way I went about trying to save my life was also too much weird too handle for most people.

If you ever have been told by conventional medicine that there is nothing to do and you need to live in unbearable conditions, you may also know that before giving up and accepting your fate it's better to try everything else that is possible, or even impossible.

Although many complementary and holistic ways of treatment are completely sensible and have long lasting traditions and proof of use, for a lot of people anything that is not mentioned in the Mayo clinic website is too "woo-woo" to exist. In recent times sadly several complementary treatments have attracted the attention of various misleading media sources (you know which ones I am talking about, the ones with the crazy conspiracy theories) and this phenomenon doesn't help the treatment's reputation.

Anyway, to get myself out of trouble I had to delve deep into the foreign territories of herbalism, orthomolecular medicine, osteopathy, energy healing, just to mention a few, and the couple of (holistic) doctors I found who helped me and saved my life were pretty much despised by the system.

I always liked to be friends with reasonable people of culture devoid of particularly extreme views, but I discovered that most of those people held an irrationally violent prejudice against integrative or functional medicine. And a good portion of people with chronic illness (I painfully discovered that in my ME days) also shared that prejudice and despise and will not stand by me during my adventures in healing.

So, while in the beginning being ill was 1/4th of my life that I couldn't share with anyone, then later my treatments were another 1/4th.

That s where it gets even weirder. Since I have CIRS I get violent reactions to prolonged exposure to various types of mold, which is basically omnipresent in buildings, and because of that I can only live in hotels (W E I R D), while waiting to have the money and strength to go live in a van (these days more fashionable, but still weird). My lifestyle is so crazy that I don't have the heart to mention it to the few normal people I meet in my sporadic "normal life" situations, like classes or workshops or meetups. Needless to say that relationships with those people never get very far.

It makes me sad that I literally never met anyone with my issues in real life, and I don't know how to deal with all this giant iceberg of weirdness that I carry around in the tangible daily life, feeling like a penguin at a wedding party.

If by grace of a Higher Power I will get better (the parasites wars have been won, one mold colonisation has been defeated, the other mold is on its way out) I don't know how I can ever share my life with anyone. Should I just not mention any of the Hell I went through, and do like Holocaust survivors did, enjoy their new lease of life and go on, trying to forget?

But once one's health has been ruined, there will always be some other issue, sooner or later, so I shouldn't forget, I can't forget. Also, I'd like to honour these years of hard work and ingenuity and fighting teeth and nails.

Do I have to resign myself to never be seen and understood? Hide my past and my present, and basically lie most of the time? ("oh I forgot an engagement I have to leave, no, it's not because there is mold in this cafe, also because if I say it you won't believe me") Or do I accept that I will always be rejected because all this weirdness is just too much for anyone to bear?

You will understand me now when I say that occasionally I miss the days when I "just" had a serious chronic illness.

5 people are talking about this
Community Voices

Sometimes things happen and we have no say in it. A strong wind makes a branch fall from a tree, and the branch kills some guy who was biking home after work. People die from a bee sting because they didn't know they were allergic , or antibiotics, or hair dyes, or they fall in a street hole they hadn't noticed.

One fateful afternoon I was walking on a small street towards the bus stop, I hadn't had time for lunch so I was chewing on some almonds. I saw the bus at the end of the street, and out of habit I started running to get it (buses were sparse and never on time). But I had forgotten about the almond in my mouth.

It went the wrong way, and for around 5 long seconds I thought that was it, my time had come, but then I was breathing and nothing happened. Not even a cough. But I felt really unwell, dizzy. I went home and later developed some weird bronchitis, it felt like a finger was pushing into my chest.

It took weeks of bronchitis to get any medical attention, and they confirmed that there was indeed a piece of almond stuck in my right bronchial tube. They also refused to take it out, saying "it will dissolve by itself". I was lucky it was just a small piece, maybe one sixth of an almond, one bite less and I may have died then and there, in that empty alley.

I had to treat aspiration pneumonia (aspiration bronchitis? because there was no pneumonia) for three months, but the sensation of a finger pushing into my chest never left. Breathing was OK, but singing was more difficult than usual and painful, and bronchitis was always there in some form.

Fast forward 13 months. I had moved to the seaside, not least to improve my lungs' health, and something else happened, This time it was somehow to be expected, but I didn't think, I couldn't imagine the far-reaching consequences of that small event. I had joined a choir, and we were singing in different places around the city.

For this one performance we were placed pretty close to an ancient wall, covered with spots of white fluffy mold. I had already developed a terrible allergy (well, CIRS really, that as the experts know, it's not exactly an allergy) to mold from a previous encounter with mold colonisation, but I realised too late that mold was so dangerously close.

When you sing you really breathe in air, in that case I breathed in mold, really deep down into my lungs. I started coughing right away, and asked to change place further away from the mold. The other choir members seemed unfazed. I went home afterwards and I kept coughing. I assumed it was an allergy crisis and didn't think much of it. I tried a lot of remedies I had with me (a full list is in another post) but the cough didn't stop, it was so strong it would shake me from head to feet.

One day at the end of week Two, I coughed the strangest thing: a perfectly spherical little ball (well, not perfectly, it seemed like one side had a small indent, I imagine where it was attached to some surface), the size of a pea,, cream coloured, but it looked solid, and really weird. After a day, another little ball. In a few days I coughed 6 of those little balls and I was getting really worried. Then one day, during a really long and vigorous coughing fit, I felt like I was going to suffocate with some hug chunk of mucus or something coming up from my chest. Guess who that was? I saw a whole group of those little balls, I counted another seven or eight linked together, and in the middle of that the piece of almond! I guess those cream-coloured (or rather, almond-coloured) things were produced by my body trying to digest the piece of almond? This was all very interesting but it didn't stop the cough.

After more "home remedies" (really strong stuff), I fell into a strange torpor and spent two days and two nights unable to get up from the bed, and for the first time in my life sweating so much that I had to change the sheets and/ or my clothing every few hours. At that point I started suspecting that I was not having an allergic reaction.

I woke up on the third day very weak but the cough was almost gone. Sadly some days later (again, the hand of Fate striking again?) I got the flu, and after a week the cough started again and it grew worse. It was a really strange cough, not productive at all, actually my bronchia had never felt drier in my life, all the airway up to the tongue felt dry and raw and scratchy and terribly itchy, I wished I could scratch my insides.

The chest in particular, where the almond had been, was driving me crazy, it was the same sensation as someone were tickling me with a feather, you know, some kind of Chinese torture, and it was constant.

On day 48 after everything started one strongest cough fit broke one rib, the second from the bottom on the right. Sleeping was already impossible because of the cough, but the fractured rib, convulsed by each fit, added an extra layer of agony.

Around the same time, the very dry unproductive cough finally produced something. It was a speck of jet black powder like substance, of the size of a small coin. I had read enough about mold to see this as confirmation that something was going on. A few more days, my first mucus plug (also typical in the presence of fungal infections). The day after, more black stuff. The inside itching was insane.

I had started seeing doctors since Day 30, but the non-specialists only diagnosed (usually just by looking at me, with their diagnostic superpowers I imagine?) allergic asthma appeared suddenly for no reason, or chronic bronchitis. They suffered, all four of them, from some strange hearing problem, they seemed to become completely deaf whenever I recounted my story, only to recover their faculty when it was time to collect their fee.

Clearly their opinion’s worth was directly proportional to the time it had taken them to form it.

I was pretty much abandoned, coughing black stuff day and night, and everything I was reading about Aspergillosis didn't bide well for my singing future. I had to try and save my lungs in some way. Still, I had no idea that the medical nightmare was just getting started. But that belongs to another post.