We want to hear your story. Tell us about the battle you face with MCS. We are here to listen and to help!
I was sick with a range of symptoms for over 25 years including depression, fatigue, headaches, nausea, tingling, muscle aches and pains heart palpitations and more, no body could give me an adequate explanation or treatment. After moving into a brand new house, in a brand new estate (where construction was going on) and getting brand new furniture, my physical health and mental health started to deteriorate at an alarming rate. Again no doctor could provide an adequate answer. Finally I came across a doctor studying to be an allergist, she suggested I might benefit from avoiding chemicals, she could not have been more right. After keeping a medically supervised log for several month it became clear I met the criteria of MCS and was finally diagnosed. As it had reached such an extreme stage, it has been a very difficult and painful journey back towards better health, but improvements are definitely evident and continue.
I traced my initial chemical injury back to my mothers home based business. China Painting and dollmaking, she fired the kiln indoors and held classes in our living room, the solvents were poured into the sink I washed up in each night, and there was next to no ventilation. More of my story can be found on http://www.lowchemical.com
Diagnosed with Chronic Fatigue and Fybromylgia.
In 2005 I came across some information about Petrolatum, which said that is an ingredient in skin care. I began to read the ingredients in my creams… and from there I started researching the ingredients in the rest of my body care products. I stopped buying those products and started to buy deodorant without aluminium, organic feminine pads with organic cotton, shampoo without Sodium Lauryl Sulfate, Parabens, skin care products without PEG, DEG, MEA, EDTA. The organic and natural products are more expensive… and as I understand it… they are the only way to good health.
Then I started my transition to organic food and also to eco household products.
Also I went to a bio dentist to replace my mercury fillings, and to a biomedicine doctor who told me I needed a bit of liver cleanse.
I am regaining my health back.
Congratulations for the work you do.
My illnesses started first with fibromyalgi in 1989 and was trained to take care of my muscels and muscle inflamations by warm watertraining and TNS and painkillers, And after this 6 weeks treatmet I went back to my work at taking care of handicapped in their home. I have mostly all my adult lifetime been working with people in instution and in that ward where I worked was about 34 handicapped together and about 14 personal.Every morning and evening there was alot of different parfumes,schampoos,powders,chemicals in the air because every clientel had their own hygienproducts and we as a personal got all their different chemicals in our bodies by being beside them and help with their every day elementary thnings, a lot of whasing everywhere at that place.
I got there often swollen neck about citrusfruits I ate and other mystical phenomena on my body.
(I need to say an other thing between here that I am sorry if my english is not correct enough, because I am swedish citizen and my home language is not english……)
Well then back to my story .The institutions became a small groups after awhile and I continued to work in one of them even after my mystical muscelpains and my legs or face or hands were swollen and I had chronical pains all the time couldnt even brush my hair or carry my bag on my shoulder or if someone claped my back or shoulder I had pains several days afterwards and after a several years I couldnt get up my bed atall my body dosent listen me at all….And any docttor I went to dint understand anything….anyone did not understand me… what this was. until I after sveral years met a Special Doctor in Muscels who has been in a caraccident and had pains like mine and he gave me diagnose Fibromyalgi and as I said before I get back to work for full time. I only could work about a year then I became very sick again…Started at the winter, in Christmas eve in 1995 with a christmas tree I became so dizzy and sick every time I was near by the tree and I had fever mostly 3 weeks of 4 and was sick, inflamations muscles and sinusits and pulminaries and I had coughed the whole year most of the years days…In summer in 1996 I took a short cut promenade to my work among all the flowers and hey on the field, and I got suddently very sick and coulndt breath didnt get air in my lungs and I could not nearly walk at all and started to became blue between my fingers and my lips were swollen and I was very dizzy but acctualy little by little I game to my workplace which was near by but I couldnt nearly even talk just became worse and my collegue called a taxi to the hospital immediatley and there a Doctor said that I had a pulmonary, sinusits and my heart-sack was also inflamted at that time…She said for me to stay at the bed at least 10 days and take care of me with all the medications she gave .Well I did that and I hevnt never ever been sicker that that time I was afraid….But after awhile I became better at least I thought and after those ten days in bed and just did the most elementary homework.After my first very bad sickness period I thought I was cured and I started to work again I did take the same short cut way again through the flower-field I used to when I went to my work.. I realised that the same difficult breath-attac happend again for me…I couldnt breath and became very panic and my lips became blue…my coworker told me that afterwards..couldnt talk face was swollen…and I was horrified about the situation of mine now….My first thought was I already had been sick what can it be now?…what could be still so wrong with me???
Anyway my coworker called a cab again and I almost passed out but could come to the hospital and an other doctor there said that I had an asthma-attac and still pulminory left and I should take very easy and I received a lot of new medicines and also asthma theartment strated…Strange thing was that I didnt get so much better that I was all these mystical sicknesses started……I became better ofcourse with my acute breathing problems and some of inflamations as well by the time…but I could sense that there was more which was left in me…because I had became so senstivie against every little odor and it just became worse with all chemicals as I became understand little by little.year after year..In 1996 I was sent to the special hospital with asthma and allergies to be examined there.
That visit there at that hospital was breake through for me and others who sufficated at the similar ways as I did and we got all kind of differnt lessions about asthma and sensoric hyperreactivity and sensitivity against chemicals and diffrences between Iqe alleries and others….. I had after that hospitalvisite my own special doctor to with knowledges of asthma,lungdiseses and allergies….I still am living very much of my time isolated but not as I did the first 7 years of SHR,asthma,MCS then I was mostly at the bed at home and only visited the doctors and some firends and was only with my family..Trying take care of even at that time my musclespains and no training because I couldnt be in the chloride bathingwater..These 7 years was my worst thing ever had happen to me in my whole life…I was forced to live in isolation mostly…couldnt be around any kind of odor or chemicals or a lot of other smells or pollen and animals,flowers,…..This time was horrible I couldnt travel by trains,by taxi-cars,by busses,being around a groud of people and I clear my home from things I coulndt breath with…like alot…my daughters dog and carpets,clothes like wool in them curtains everything which could gather dust or smelled….all the flowers,all small things and all old books……I became mostly an ascetic and some year later on I also became a vegetarian……Well I couldnt change my life with someone else or take free time from it and I had to deside in me to be introvent,bitter and unhappy or I could do everything I with others help could do to do it right so far as possible, make my life better and be happier and see the hope in the future…Which I choose to do…I have my own car to travel with nowadays and my isolation is broken a bit with that and without odorsin my home and without any Chemiclas and today my family understand me more and more even if therealways will be some misstakes always with someone had forgot….. But they understand with me most of the problems with MCS and Asthma and unfortunately I also got Diabetes last yeas because of using cortison because of asthma SHR/MCS and I didnt know and got that information that so can happend for those who uses cortison and that all my weight I puted on me beacuse of it……so I was sad but I like to be like an egyptian brid FENIX which is rising from ashes and stand up again…….And I still want to get some advice from others, doctors,people who can and know about mcs, who had some solutions for MCS and it can make be better and better……I live near by with lovely children(adults now) and one or two of my firends still be with me sometimes but there are not many of them left because this illnes is so complex and anyone who can choose, choose to be people who can do things together……go out and go to the movies or opera as I used to before,or theatres…..I love people and culture and spa and come together gatehrings…but it is very problematic…dosent work well.I cannot never ever go place like those anymore and it is ruff because I need to change even my interests…..So you learn to give up things you cannot anymore do togehter with others…and try to find other ways even if it is not so much who you really are…but there must be acceptance and tolerance…. with in you and others around you I think that it took me almost 8 years to understand this so ofcourse it take time for others around me to to undertsand and it is not easy ….and that is not easy to make new firends at all and ..allways to say them what they can use,wear or not when you are around and they are with you….I am getting tired of it….And then I found your story and you are a doctor and for the first time listen your and how you have done so I would like to get some piece of advice from you???
Thanks for me……Sincerly:Tiina