Multiple Chemical Sensitivity

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Multiple Chemical Sensitivity
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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.

    6 people are talking about this
    Community Voices

    Does anyone know anybody who has ever been healed of MCS? It seems like people get more sensitive as the years go on & that is a daunting thought

    7 people are talking about this
    Community Voices

    Does anyone know what some of the Cs are in their MCS?

    #MultipleChemicalSensitivity

    Does anyone know what some of the chemicals are that they are sensitive to? Some of them? One of them? Is anyone finding that their triggers have one or two or more consistent chemicals in common?

    I've been living 30 years with this issue and 13 years with this "not-really-a-diagnosis" that there isn't actually a treatment for.

    It seems to me that I need to start doing what medicine can't and begin finding out exactly what these chemicals are.

    4 people are talking about this
    Community Voices

    ZenCleanz Review For Chemical Sensitivity #MultipleChemicalSensitivity #fibromyalgia #MECFS

    I did a one day ZenCleanz intestinal cleanse, which did not help with my sensitivity, however, I received a surprising boost regarding my MECFS. The biofilm was stripped from my intestines. I cannot tell you how gross it was.🤢 All I can say is that I feel a significant shift in my health. I am not 100%, but I feel stronger. I don't feel so weak as I'm getting out of bed and throughout the day. So I highly recommend this all natural, one day cleanse to release toxic sludge from your intestines. There are plenty of pictures of what will come out of you on their website. Best wishes!!! zencleanz.com
    #MultipleChemicalSensitivity

    Community Voices

    ZenCleanse #MCS #m .E.CFS #Fibromyalgia

    Hi, everyone! I've heard that ZenCleanse helps release the biofilm from the digestive tract and that it can help with MCS. I also hope that it will allow my body to gain the ability to better absorb supplements, nutrients, and vitamins. I'll come back on once I try it, to let y'all know how things worked out! Peace in body, mind, and spirit!💛🌻💛Wendy
    #MultipleChemicalSensitivity

    2 people are talking about this
    Community Voices

    Anybody Want to Trade? #MCS #m .E./CFS, #Fibromyalgia

    Hi, everyone! Wanna trade conditions with me? One condition I have is MCS, multiple chemical sensitivity, which means that if I have any physical/ mental issues, many times my body rejects the medication or herb to ease the issue. So I just have to deal with it. It also affects my smell, what I eat, and what I put on my body, like creams, etc. If I take, for example, pain meds, that my body does not like, my symptoms are searing headaches, feeling nauseous, like I'm being poisoned, weakness, and dizziness, which can then be exacerbated by a smell like candles, etc. So do any of you wish to trade conditions with me😋? Looking forward to growth from this little exercise. Love to you all! Wendy🌻

    3 people are talking about this
    Community Voices

    UBI Ultraviolet Blood Irradiation

    Hey, everyone! I just wanted to share something that helped move me up a rung in the healing ladder from M.E./CFS. Yes, I am broke because of it🙄, but it has helped me work toward putting my life back together brick by brick. I have not worked in three years and live alone, never been married, with no kids. However, my life has slowly improved because of UBIs.

    I've had over 20 treatments, and I hv more energy, more stamina, fewer crashes, less MCS, and I recover quicker when I do crash. I am in no way healed completely, but I am able to work a few hours a week now and make an extra $50/week. I also have met other people because of my online work. Having people in my life is so important to healing!! Counseling and support groups have also been a part of my healing. Let's never give up! I will always seek healing as I work to accept where I am today! Love and blessings! ❤🌲#MCS Multiple Chemical Sensitivity
    #ChronicFatigueSyndrome

    1 person is talking about this
    Community Voices

    Any Medications Help with MCS?? # MCS Multiple chemical sensitivity

    Hi, everyone! Although sometimes nothing helps with my bad headaches due to MCS, there is a medication that helps many times when I need it. The prescription medication is called hydrocortisone. It is a steroid pill that I take orally, as needed. It helps with feeling like I'm being poisoned, along with the nausea, too. How about you? Much love!💌
    #MultipleChemicalSensitivity

    7 people are talking about this
    Community Voices

    Why Don't We Have More Support In This MCS Community? #MCS

    Hello, everyone! Those of us with MCS know the hell it causes! Whatever your other ailments are, MCS can shut down any sort of relief that can be offered because so many things can be a trigger a negative response! Herbs, medications, pharmaceuticals, smells, foods, chemicals, etc., can be our nemesis. There are many of us who cannot ride in other's cars because of strong perfumes, visit friends because of the chemically laden air fresheners, or even take pain medication for our pain because of the way our bodies react to the medications. Yet, I rarely see articles or information that offer hope and/or answers. Our condition is just as valid and debilitating as chronic fatigue syndrome and fibromyalgia, which I also experience. I have posted on this feed on several occasions, hoping to garner conversations, comraderi, information, and support. I have also shared things that have helped me. Some members have definitely responded, but overall, it feels like this MCS community is "SLEEP". I know we all care and want comfort, healing, and support. So what is going on with MCS on The Mighty? I am asking, not in judgement, but because I really want to know! I wish for this community to thrive, share, break barriers, find ways to manage this condition, and ultimately find CURES! I have certainly NOT given up, and I will continue to post and share! Love, Wendy 💛MCS,multiple chemical sensitivity

    14 people are talking about this
    Community Voices

    What is UBI Ultraviolet Blood Irradiation?

    Hi everybody! I wanted to explain the UBI process. The practitioner extracts about a couple of cups (or so) of blood via IV. As the blood leaves your body, it flows under a UV light, into the IV bag. Oxygen is then added to your bag of blood, and the blood mixture is sent back through th UV light and back into your body. UBIs were more commonly used before antibiotics came on the scene. UBIs are antimicrobial, antiparasitic, antibiotic, and antibacterial. It takes about an hour and costs about $225 per treatment. Expect to need numerous treatments to see substantial gains, but you never know. I've had over 20 treatments. They can help treat numerous ailments. I am not cured, but it has helped improve my M.E./CFS, fibromyalgia, perioral dermatitis, and MCS! Thankful!!🤗
    #MultipleChemicalSensitivity

    11 people are talking about this