Boy I am learning, I hope. Here is a better list and you can just click on the link to go to the site. Amazing the things we can do when we take the time to read.
Here is a list of some places and groups for support. It is no where near complete, I have not checked all of them out thoroughly. Please if you have any more current information I have nothing to do with writing this list, just reading it. If you suffer from multiple chemical sensitivities or severe breathing problems or asthma it is a good place to start. If you find any good information that isn't on the list, feel free to add it or send it to me. The more information we have the better off we can be. This information is provided for informational and research purposes only:
***Under Support Groups/Foundation is a link to the CDC's fragrance free policy - if they have it then it should be easier to bring into other agencies.
Resources:
http://limbicretraining.com/contributors/t-can/my-mcs-recovery-part-1/
*techniques to aide in recovery from the Planet Thrive Blog
http://www.getawhiffofthis.com/Home_Page.html
*Get A Whiff Of This, by Connie Pitts. Get a Whiff of This is a very informative book, revealing secrets the fragrance industries do not want you to know.
http://www.ctaz.com/~bhima/resources.htm
*list of resources for things like housing, art supplies and other stuff for sufferers of MCS
http://www.mcsrr.org/
http://www.achooallergy.com/allergy-asthma-mask-buying-guide.asp
* This site is for those who suffer severely and may need access to mask or special filters etc for their home, car or personal self. A good site for info and tools.
Support Groups/Foundations:
http://www.mdjunction.com/multiple-chemical-sensitivity
*site with an online support group and other info for those of us with MCS and other disorders.
http://www.chemicalsensitivityfoundation.org/
* good info - also a link to the CDC fragrance free policy. Here is the link:
http://www.chemicalsensitivityfoundation.org/cdc-fragrance-free-policy.htm
Cleaners:
http://www.seventhgeneration.com/products
* I actually used their free and clear products for the first time. Usually my husband has to do all the chemical cleaning of the house and I have to leave for 4-5 hours. I washed the floor and cleaned the bathroom with their free and clear all purpose cleaner and I didn't have an asthma attack or anything.
http://www.theallergyreliefcenter.com/
*interesting info with a list of products at the bottom and other info for those with airborne allergies/asthma
Other info:
http://www.multiplechemicalsensitivity.org/#multiple%20chemical%20sensitivity
*some info not complete
http://www.chemicalsensitivityfoundation.org/chemical-sensitivity-questionnaire.htm
*I have not taken this questionnaire yet but will let you know what I think when I do.
Monday, April 23, 2012
Sunday, April 22, 2012
and be positve
Well now that I had a total meltdown and recognize that it isn't the healthiest approach, I must turn the corner and get back to the positive, outgoing person I am. We all do it, you know we do. We are hardest on ourselves and for some reason never take our own advice, even the good stuff. We think to much, wonder to much and for me, well I am way to paranoid. Paranoid of saying the wrong thing, in the wrong way and at the wrong time. So here are some positive tips that I have tried to live by most of my adult life. Am I always successful? Absolutely not. Do I give up? Never.
The first thing I try to remember is that I am who I am. God made me this way and while I can listen to what others think about me and I can learn from that, the end result is...this is who I am. All the people that I have ever interacted with have had an impact on me, positive and negative, and the experiences I have had with them have helped to mold me into who I am today. I have heard all my life about "my tone of voice" "think before you speak" and "you have no tact" well guess what, after 57 years, this is me. I can no longer dwell on all the negative aspects of my personality, I can no longer be afraid and paranoid. I must live the rest of my life to the fullest and remember all the positives, all the gifts that I have. God made me special and I must honor that.
The second thing I have to remember is that while my body has given me many limitations in the last 15 years, it doesn't define me and it isn't who I am. As for my limitations, I know that I must listen to my body. If it says go lay down and take a nap, then I need to go take a nap. There isn't anything wrong in allowing your body rest, however, that being said, I need to move. When you have chronic pain you don't want to move. It hurts to move but not moving hurts you more. When you wake up at the start of a new day, stretch, before you get out of bed. Getting the blood flowing, getting your muscles and ligaments warmed up is a good thing. Plus if you never move and just lay there you can't have any fun and your muscle will atrophy and you won't be able to walk at all. So stretch, get up and move. Move as best you can but move. And don't forget to breathe.
Breathing. Breathing is probably the most important aspect of me there is. You know, you need to breathe in order to live and I have found that I actually enjoy breathing. We can't live without breathing. So, sit up straight, take a nice deep breath thru your mouth, hold it just a second and exhale thru your nose. Now do that a few times and while you are doing that go to a positive place in your mind. OK I will be honest, when I do my breathing I am riding a beautiful horse along the beach. The waves are gently rolling into shore and the sun is just setting with all the colors of the rainbow glowing off the clouds. Now doesn't that sound good. But you need to go to wherever your brain wants to go, that is relaxing for you. Get rid of all the negative thoughts and find a nice quiet relaxing place. Try it, you might like it. Stress is our worst enemy, besides our own brain, well at lease mine since it likes to argue with me. Stress makes us feel worse, makes our pain worse. So breathe and with that relax. Even if it is just for a couple of minutes a day. I personally breathe all the time and especially if I am feeling stressed.
Probably the hardest for me is acceptance. Acceptance that this is who I am and how I will be. Acceptance that I will have pain, every second, of every minute, of every hour, of every day. Boy that sounds kind of daunting. Plus now, which I am still trying to accept, my limitations with all inhaled particulate matter. When you have MCS, you have to remember that no one gets it, least of all you. But you have to come to accept it because it will be with you forever and always. It may wax and wan but you will never know what or who will cause you to spiral down into suffocation hell and it is no ones fault. It is how God made you. As you can tell I am still a work in progress as are you.
I have no right to be hard on myself or to be ashamed of who I am. I have no need to apologize for my pain. That being said, I have to remember that it is my pain and no one elses, I don't need to bring others down because of it. I must remember that everyone has difficulties they are dealing with and theirs are more than likely far worse than mine. I also have to remember that when we are at our worse it affects not only ourselves but all of those around us. We won't act the best, won't say the best and can't possibly be our best, but hopefully those around us will be patient and understanding because just around the corner it may be their turn to not feel their best and I surely hope that I can be there for them. To be patient and understanding and help them thru their difficult times.
So go out and be the best you can be the way you are. I have dusted myself off, changed my mindset and will go out in my world and will do the best that I can. I will slough off the negative, I will remember to breathe and I will persevere. I hope you all have a wonderful, positive day.
The first thing I try to remember is that I am who I am. God made me this way and while I can listen to what others think about me and I can learn from that, the end result is...this is who I am. All the people that I have ever interacted with have had an impact on me, positive and negative, and the experiences I have had with them have helped to mold me into who I am today. I have heard all my life about "my tone of voice" "think before you speak" and "you have no tact" well guess what, after 57 years, this is me. I can no longer dwell on all the negative aspects of my personality, I can no longer be afraid and paranoid. I must live the rest of my life to the fullest and remember all the positives, all the gifts that I have. God made me special and I must honor that.
The second thing I have to remember is that while my body has given me many limitations in the last 15 years, it doesn't define me and it isn't who I am. As for my limitations, I know that I must listen to my body. If it says go lay down and take a nap, then I need to go take a nap. There isn't anything wrong in allowing your body rest, however, that being said, I need to move. When you have chronic pain you don't want to move. It hurts to move but not moving hurts you more. When you wake up at the start of a new day, stretch, before you get out of bed. Getting the blood flowing, getting your muscles and ligaments warmed up is a good thing. Plus if you never move and just lay there you can't have any fun and your muscle will atrophy and you won't be able to walk at all. So stretch, get up and move. Move as best you can but move. And don't forget to breathe.
Breathing. Breathing is probably the most important aspect of me there is. You know, you need to breathe in order to live and I have found that I actually enjoy breathing. We can't live without breathing. So, sit up straight, take a nice deep breath thru your mouth, hold it just a second and exhale thru your nose. Now do that a few times and while you are doing that go to a positive place in your mind. OK I will be honest, when I do my breathing I am riding a beautiful horse along the beach. The waves are gently rolling into shore and the sun is just setting with all the colors of the rainbow glowing off the clouds. Now doesn't that sound good. But you need to go to wherever your brain wants to go, that is relaxing for you. Get rid of all the negative thoughts and find a nice quiet relaxing place. Try it, you might like it. Stress is our worst enemy, besides our own brain, well at lease mine since it likes to argue with me. Stress makes us feel worse, makes our pain worse. So breathe and with that relax. Even if it is just for a couple of minutes a day. I personally breathe all the time and especially if I am feeling stressed.
Probably the hardest for me is acceptance. Acceptance that this is who I am and how I will be. Acceptance that I will have pain, every second, of every minute, of every hour, of every day. Boy that sounds kind of daunting. Plus now, which I am still trying to accept, my limitations with all inhaled particulate matter. When you have MCS, you have to remember that no one gets it, least of all you. But you have to come to accept it because it will be with you forever and always. It may wax and wan but you will never know what or who will cause you to spiral down into suffocation hell and it is no ones fault. It is how God made you. As you can tell I am still a work in progress as are you.
I have no right to be hard on myself or to be ashamed of who I am. I have no need to apologize for my pain. That being said, I have to remember that it is my pain and no one elses, I don't need to bring others down because of it. I must remember that everyone has difficulties they are dealing with and theirs are more than likely far worse than mine. I also have to remember that when we are at our worse it affects not only ourselves but all of those around us. We won't act the best, won't say the best and can't possibly be our best, but hopefully those around us will be patient and understanding because just around the corner it may be their turn to not feel their best and I surely hope that I can be there for them. To be patient and understanding and help them thru their difficult times.
So go out and be the best you can be the way you are. I have dusted myself off, changed my mindset and will go out in my world and will do the best that I can. I will slough off the negative, I will remember to breathe and I will persevere. I hope you all have a wonderful, positive day.
Saturday, April 21, 2012
when we've had enough
I always try and be upbeat, but not today. Today I have had enough and it doesn't come from just the sensitivity, smell thing, but from all the emotional baggage that goes with it. I try to keep positive but the brain today doesn't want to be positive, at all. I am having a really bad emotional day and you know what? Today, I deserve it. Although, that really pisses me off cause I don't deserve all this bad crap that keeps coming at me. Brain keeps saying, "you are all alone" "you have screwed up so bad" "nobody cares" Which of course I know isn't true at all. I hate it when brain argues with me.
This is what happened yesterday. Now I will preface this by saying that I thought I had been doing better emotionally the last couple months. I know I went way out of control when this MCS took over my life. It was a steep learning curve and perhaps I didn't handle it in the right manner. But who the hell knows how to handle the fact that everyone's habits were literally killing you. Do you? I had tried talking to those around me; then pleaded, begged, cried and I am sure went off a few times. You would walk into a rehearsal or meet with a family member only to have to leave a couple minutes later because, as brain would say, "they just don't care about you at all" "it is you, you're just crazy" or "no one believes you anyway" and your body would start to shut down. You had not just the physical response, but I can't stress enough, the emotional response. But about four months ago I figured that my reaction wasn't the best way to go. So I shut up about all the smells around me. I kept going to all my stuff and stayed as long as I could and stopped complaining.
OK a little more background might help. I am in a chorus and on the board of this chorus. It is one of the last things I have been able to hold onto. To cope, I would go to rehearsals, I haven't missed one, and sometimes I can stay and sometimes I have to leave. Now I am finding out that this is actually pissing a few people off. Now, here is a list of things I have tried to do in order to stay. I tried sitting in a hallway next to the practice room, I have tried sitting in the entry way by the front door and I tried standing at the outside door. The later worked great for me but was in the soprano section and they didn't like an alto standing in their section, with the door open, so that didn't last long. Now think about it, if I am sitting by myself in another room or hall am I really participating? Do I feel like a member of the chorus? Or do I feel like an outcast, all alone in a group of people? Isolated and alone. An emotional wreck.
But until about 3 weeks ago, I would just leave. It is hard to sing and concentrate when your lungs are filling up with phlegm, you get a severe headache and you head starts spinning. Who wants to do all that and then have to worry about driving home, if you dared to drive home. What if you blacked out in the car? I am not that stupid. That is why I started leaving everywhere after a couple of minutes. How stupid would it be for me to stay so long that I would risk someone elses life or my life? I would never put anyone in jeopardy. These weren't easy decisions for me and if any of my 'friends' would have cared enough to ask I would have told them why. Instead, they start talking behind my back, complaining and just being stupid and "forgive me for thinking again" but couldn't they just be adults about it and come talk to me?
So back to yesterday. I got a call from the president of the board, concerned that the stress of being on the board is bad for me. "Bad for me?" I think, this is the last thing I have left. I have lost my band, I have lost my church, I have lost my life and the one thing I have left I am going to lose too? Oh boy. So we agreed to meet and talk. At the restaurant she informs me that I have changed, that many of the members of the board feel tension from and around me. That I have made them uncomfortable and they want me out. "ah...."
The only time I am aware of that I may have been out of line was when one of the other board members was having some medical issues and went off "about people who leave rehearsals early" and "you need to write better minutes - get a recorder" blah blah blah, I did go off, but immediately stopped and immediately apologized to the her and the board. I knew that, yes, I shouldn't have responded. But I let it go. I understood that neither one of us was feeling our best and crap happens. But evidently this is just giving her fuel for her fodder.
"I have had enough" "What the hell did I ever do to any of them?" I suppose they don't understand, that I am over reacting and should just suck it up. Well guess what honey, this is real. This isn't just an inconvenience or something to suck up. This is life or death to me. Oh damn, I am so tired of crying. I just don't understand how petty people can be. How judgmental. So I now must 'apologize' for my behavior to the board. What BS. You know, everyone has problems and sometimes that affects all aspects of our lives, but I would hope that people would be understanding and forgiving. And what happened to helping those in need or when they are at their worst? Am I supposed to just take and take this emotional roller coaster and suck it up? Just take verbal abuse because someone doesn't like that I have a medical issue? I am so sick of feeling bad and putting everyone elses feelings ahead of my own. What about my feelings? I do have them you know.
Well I guess when you have some severe medical issues you find out who your friends are. Ha
Thank you for putting up with my rants and ravings today. I will get out of this mood now by going and buying a new tree for my yard. I think I have found one that doesn't bother me and it is far enough away from the house that I hope it works. If not a couple of nice cactus will do. Take care.
This is what happened yesterday. Now I will preface this by saying that I thought I had been doing better emotionally the last couple months. I know I went way out of control when this MCS took over my life. It was a steep learning curve and perhaps I didn't handle it in the right manner. But who the hell knows how to handle the fact that everyone's habits were literally killing you. Do you? I had tried talking to those around me; then pleaded, begged, cried and I am sure went off a few times. You would walk into a rehearsal or meet with a family member only to have to leave a couple minutes later because, as brain would say, "they just don't care about you at all" "it is you, you're just crazy" or "no one believes you anyway" and your body would start to shut down. You had not just the physical response, but I can't stress enough, the emotional response. But about four months ago I figured that my reaction wasn't the best way to go. So I shut up about all the smells around me. I kept going to all my stuff and stayed as long as I could and stopped complaining.
OK a little more background might help. I am in a chorus and on the board of this chorus. It is one of the last things I have been able to hold onto. To cope, I would go to rehearsals, I haven't missed one, and sometimes I can stay and sometimes I have to leave. Now I am finding out that this is actually pissing a few people off. Now, here is a list of things I have tried to do in order to stay. I tried sitting in a hallway next to the practice room, I have tried sitting in the entry way by the front door and I tried standing at the outside door. The later worked great for me but was in the soprano section and they didn't like an alto standing in their section, with the door open, so that didn't last long. Now think about it, if I am sitting by myself in another room or hall am I really participating? Do I feel like a member of the chorus? Or do I feel like an outcast, all alone in a group of people? Isolated and alone. An emotional wreck.
But until about 3 weeks ago, I would just leave. It is hard to sing and concentrate when your lungs are filling up with phlegm, you get a severe headache and you head starts spinning. Who wants to do all that and then have to worry about driving home, if you dared to drive home. What if you blacked out in the car? I am not that stupid. That is why I started leaving everywhere after a couple of minutes. How stupid would it be for me to stay so long that I would risk someone elses life or my life? I would never put anyone in jeopardy. These weren't easy decisions for me and if any of my 'friends' would have cared enough to ask I would have told them why. Instead, they start talking behind my back, complaining and just being stupid and "forgive me for thinking again" but couldn't they just be adults about it and come talk to me?
So back to yesterday. I got a call from the president of the board, concerned that the stress of being on the board is bad for me. "Bad for me?" I think, this is the last thing I have left. I have lost my band, I have lost my church, I have lost my life and the one thing I have left I am going to lose too? Oh boy. So we agreed to meet and talk. At the restaurant she informs me that I have changed, that many of the members of the board feel tension from and around me. That I have made them uncomfortable and they want me out. "ah...."
The only time I am aware of that I may have been out of line was when one of the other board members was having some medical issues and went off "about people who leave rehearsals early" and "you need to write better minutes - get a recorder" blah blah blah, I did go off, but immediately stopped and immediately apologized to the her and the board. I knew that, yes, I shouldn't have responded. But I let it go. I understood that neither one of us was feeling our best and crap happens. But evidently this is just giving her fuel for her fodder.
"I have had enough" "What the hell did I ever do to any of them?" I suppose they don't understand, that I am over reacting and should just suck it up. Well guess what honey, this is real. This isn't just an inconvenience or something to suck up. This is life or death to me. Oh damn, I am so tired of crying. I just don't understand how petty people can be. How judgmental. So I now must 'apologize' for my behavior to the board. What BS. You know, everyone has problems and sometimes that affects all aspects of our lives, but I would hope that people would be understanding and forgiving. And what happened to helping those in need or when they are at their worst? Am I supposed to just take and take this emotional roller coaster and suck it up? Just take verbal abuse because someone doesn't like that I have a medical issue? I am so sick of feeling bad and putting everyone elses feelings ahead of my own. What about my feelings? I do have them you know.
Well I guess when you have some severe medical issues you find out who your friends are. Ha
Thank you for putting up with my rants and ravings today. I will get out of this mood now by going and buying a new tree for my yard. I think I have found one that doesn't bother me and it is far enough away from the house that I hope it works. If not a couple of nice cactus will do. Take care.
Sunday, April 15, 2012
When we are having fun
So the past week has been, well for lack of a better word, interesting. I don't know about you but I try to maintain as much normalcy as possible. Those of us with multiple chemical sensitivities (MCS) already know that when we get somewhere we will more than likely have to leave. Truly, all those wonderful people out there really think it is necessary to wear aftershave, perfume, hairspray, deodorant, oh, and the worst, lotions. Plus the fact that whether we go to a meeting, event or friends there has been some sort of cleaning up with caustic chemicals. Especially the bathrooms. Really people, we would like to go to the bathroom too. I guess I have to consider myself lucky that I am not a really severe germaphobe on top of everything else.
So this past week I decided to go and attend all my meetings and functions. Monday I went to an art meeting and hadn't even gotten five feet in the door. It was at one of our town hall rooms and right by the door they had 'antibacterial' crap. Now, I understand how people don't like bacteria, but that stuff is so caustic to my lungs that when my friend who walked in the door in front of me squirted some on her hand, I wanted to scream, "NO, damn it all to hell!" "What the 'beep' are you doing?" Instead I thought OK, you know she did that, so try and sit on the other side of the room. See, I do still have somewhat of a brain. Well as you all may be able to guess, especially those who suffer as I do, all those chemical molecules spread around the room and invade the air. How long did I last you ask? Well perhaps you really don't care, but this is cathartic for me too. Five minutes. Yup five minutes, after a twenty minute drive to get there, oh and a twenty minute ride home. But as the logical side of my brain was trying to get thru, "Jean, you knew this was going to happen" "you know that you are going to cough up your lungs for 6 or 8 hours now" the social side of my brain was firmly stuck to the thought that I was going to persevere and try and live a normal life. Who wants to be stuck at home, in a bubble, with no one to talk to or visit you? Well not me.
After a brief respite of coughing up my lungs, trying to get rid of my headache, and since I don't allow myself to stay anywhere that is bothering me to long, I found that the dreaded blackouts aren't occurring. Which for everyone concerned is a good thing. I went on my solitary computer, in my solitary house; Yes, I was having a solitary pity party for myself, by myself and with myself, yet again. This was a really short lived party tho, cause it takes to much energy to throw a really good pity party. Anyway, I digress, back to the computer. I found an email, from my cousin, one of the millions that read this blog....No don't laugh, she has millions of cells in her brain that she needs to utilize to read and process this blog thingy, plus you don't feel so bad when you think of it that way. Who wants to admit that only 2 or 3 people read you rants and raves. It is kind of like going to a restaurant and saying their are three of you, "Yes, their are three of us today; me, myself and I"
My wonderful cousin, Marie, did some research for me. She is retired now and I so appreciate her efforts. Mainly because the research I had done so far kept telling me that it was all in my head and I was psychotic. So when you suffer from MCS not only do your friends and family think your crazy, your doctor thinks your crazy and soon, you too, think you might be crazy. Remember tho, with MCS it is your respiratory and immune system that is crazy, not your brain. So one of these research papers she found actually gave me a lot of insight into our world. Such as this one quote, "Our cultural response to MCS has been almost entirely negative. People with this primarily invisible disability have been ignored, de-legitimized, dropped as friends, discriminated against in the workplace, fired from their jobs, and excluded from housing and medical care." So if you are reading this and you are feeling crazy...you're not. MCS currently is not a true recognized disability. We must educate, so we too can be people. If you are reading this, I want to reassure you that, YOU ARE NOT ALONE. If you have trouble hearing when you read, say it out loud, YOU ARE NOT ALONE or I AM NOT ALONE. As soon as I figure out how, I will add a link to this paper. http://www.ilru.org/html/publications/bookshelf/MCS.html I think I actually did it!
Back to Monday. Monday night is chorus rehearsal. It is in our rules that we aren't supposed to wear perfumes and such stuff. Mind you, people always wear stuff, you just have to hope it is from the morning and has just about worn off. During the course of the last three months and with the understanding of the director, I have begged and pleaded for everyone to come in scent free. I have probably left after a few minutes more often than stayed, but I keep going. I absolutely love music and I know that I am not alone. I may have the most severe case in the chorus, but, I am not alone. So Monday night I go to chorus and since I am still all congested from the other meeting I sit in the back of the room. Guess what? I MADE IT!!
Tuesday? Five minutes - had to leave, Wednesday? did OK at lunch, except why does the wait staff wear stuff? It seems it would take away from a persons sense of taste. But after lunch I was going to the grocery store. Walked up to the door and yes, the dreaded lilies are still there so I turned around and went home. Thursday? I went to the painting group I'm in, started painting and laughing and dare I say, "Acted like a normal person" until someone walked in with an overload of aftershave. Brain once again yelling at me "See I told you so" "Why don't you ever listen to me?" Well brain, I don't listen to you because I am not going to give in. So there. As I was packing up my brushes and paints I could feel a really big solitary pity party coming on, now I do know that there are many people worse off than me, it is just at the time the emotions flood over me and I really would like to get hysterical and yell, "Why me?" Plus I had pissed so many people off by asking them to not wear stuff I just didn't have it in my heart to do it yet again. So I walked up to my friend, bless her heart and said, "Bye" We talked about the upcoming painting classes and my concerns over paying for a class that I have to leave. She said she would mention the smell issue for me. I wonder if she really understands how appreciative I am for that. It is so hard to have to mention it again, and again. Perhaps that is where the 'crazy' part comes in. Another quote: "When persons are unable to work, further their education, or enter public buildings, serious quality of life issues are raised. For the MCS population, merely performing errands or participating in environments that others take for granted endangers health. Lack of access to public spaces means that these places are not really public. Although paid for with public funds, they exist for those tolerant enough of toxics and mobile enough in body to make use of them. At this point in time, people with MCS are essentially an invisible population due to the lack of a paradigm for chemically induced illness." Invisible? I am not sure invisible is the word I would use. Ignored is perhaps a better word. After all....we are just crazy.
So I will end on a positive note. Thursday afternoon my friend called. "Jean, you won't believe it. When I mentioned your sensitivities and your request for a smell free zone, eight people stood up and applauded." So you see, when we are feeling our worse and dwelling on the negative, the good Lord will give us a ray of hope and sunshine.
Please, if you know someone who suffers from chemical sensitivities or any severe airborne allergies try to be understanding of their needs. While you may feel put out and irritated by the request to not wear perfumes, aftershave or any of the above, while your brain is going, "crap, I like it and I have used it for 30 years" "I think they are crazy" and "who do they think they are?" Remember, that it could happen to you too and is it really that big of deal for you to not wear it? It is darn near impossible to understand the visceral reaction those of us with MCS have to this stuff and while we try to conform to your world, it is time for us to stand up and be recognized. Recognized for the wonderfully different people we are. People that would just like to go places, hang out with our friends, hold a job and even go to the grocery store. We want to be productive members of society and we deserve it.
So this past week I decided to go and attend all my meetings and functions. Monday I went to an art meeting and hadn't even gotten five feet in the door. It was at one of our town hall rooms and right by the door they had 'antibacterial' crap. Now, I understand how people don't like bacteria, but that stuff is so caustic to my lungs that when my friend who walked in the door in front of me squirted some on her hand, I wanted to scream, "NO, damn it all to hell!" "What the 'beep' are you doing?" Instead I thought OK, you know she did that, so try and sit on the other side of the room. See, I do still have somewhat of a brain. Well as you all may be able to guess, especially those who suffer as I do, all those chemical molecules spread around the room and invade the air. How long did I last you ask? Well perhaps you really don't care, but this is cathartic for me too. Five minutes. Yup five minutes, after a twenty minute drive to get there, oh and a twenty minute ride home. But as the logical side of my brain was trying to get thru, "Jean, you knew this was going to happen" "you know that you are going to cough up your lungs for 6 or 8 hours now" the social side of my brain was firmly stuck to the thought that I was going to persevere and try and live a normal life. Who wants to be stuck at home, in a bubble, with no one to talk to or visit you? Well not me.
After a brief respite of coughing up my lungs, trying to get rid of my headache, and since I don't allow myself to stay anywhere that is bothering me to long, I found that the dreaded blackouts aren't occurring. Which for everyone concerned is a good thing. I went on my solitary computer, in my solitary house; Yes, I was having a solitary pity party for myself, by myself and with myself, yet again. This was a really short lived party tho, cause it takes to much energy to throw a really good pity party. Anyway, I digress, back to the computer. I found an email, from my cousin, one of the millions that read this blog....No don't laugh, she has millions of cells in her brain that she needs to utilize to read and process this blog thingy, plus you don't feel so bad when you think of it that way. Who wants to admit that only 2 or 3 people read you rants and raves. It is kind of like going to a restaurant and saying their are three of you, "Yes, their are three of us today; me, myself and I"
My wonderful cousin, Marie, did some research for me. She is retired now and I so appreciate her efforts. Mainly because the research I had done so far kept telling me that it was all in my head and I was psychotic. So when you suffer from MCS not only do your friends and family think your crazy, your doctor thinks your crazy and soon, you too, think you might be crazy. Remember tho, with MCS it is your respiratory and immune system that is crazy, not your brain. So one of these research papers she found actually gave me a lot of insight into our world. Such as this one quote, "Our cultural response to MCS has been almost entirely negative. People with this primarily invisible disability have been ignored, de-legitimized, dropped as friends, discriminated against in the workplace, fired from their jobs, and excluded from housing and medical care." So if you are reading this and you are feeling crazy...you're not. MCS currently is not a true recognized disability. We must educate, so we too can be people. If you are reading this, I want to reassure you that, YOU ARE NOT ALONE. If you have trouble hearing when you read, say it out loud, YOU ARE NOT ALONE or I AM NOT ALONE. As soon as I figure out how, I will add a link to this paper. http://www.ilru.org/html/publications/bookshelf/MCS.html I think I actually did it!
Back to Monday. Monday night is chorus rehearsal. It is in our rules that we aren't supposed to wear perfumes and such stuff. Mind you, people always wear stuff, you just have to hope it is from the morning and has just about worn off. During the course of the last three months and with the understanding of the director, I have begged and pleaded for everyone to come in scent free. I have probably left after a few minutes more often than stayed, but I keep going. I absolutely love music and I know that I am not alone. I may have the most severe case in the chorus, but, I am not alone. So Monday night I go to chorus and since I am still all congested from the other meeting I sit in the back of the room. Guess what? I MADE IT!!
Tuesday? Five minutes - had to leave, Wednesday? did OK at lunch, except why does the wait staff wear stuff? It seems it would take away from a persons sense of taste. But after lunch I was going to the grocery store. Walked up to the door and yes, the dreaded lilies are still there so I turned around and went home. Thursday? I went to the painting group I'm in, started painting and laughing and dare I say, "Acted like a normal person" until someone walked in with an overload of aftershave. Brain once again yelling at me "See I told you so" "Why don't you ever listen to me?" Well brain, I don't listen to you because I am not going to give in. So there. As I was packing up my brushes and paints I could feel a really big solitary pity party coming on, now I do know that there are many people worse off than me, it is just at the time the emotions flood over me and I really would like to get hysterical and yell, "Why me?" Plus I had pissed so many people off by asking them to not wear stuff I just didn't have it in my heart to do it yet again. So I walked up to my friend, bless her heart and said, "Bye" We talked about the upcoming painting classes and my concerns over paying for a class that I have to leave. She said she would mention the smell issue for me. I wonder if she really understands how appreciative I am for that. It is so hard to have to mention it again, and again. Perhaps that is where the 'crazy' part comes in. Another quote: "When persons are unable to work, further their education, or enter public buildings, serious quality of life issues are raised. For the MCS population, merely performing errands or participating in environments that others take for granted endangers health. Lack of access to public spaces means that these places are not really public. Although paid for with public funds, they exist for those tolerant enough of toxics and mobile enough in body to make use of them. At this point in time, people with MCS are essentially an invisible population due to the lack of a paradigm for chemically induced illness." Invisible? I am not sure invisible is the word I would use. Ignored is perhaps a better word. After all....we are just crazy.
So I will end on a positive note. Thursday afternoon my friend called. "Jean, you won't believe it. When I mentioned your sensitivities and your request for a smell free zone, eight people stood up and applauded." So you see, when we are feeling our worse and dwelling on the negative, the good Lord will give us a ray of hope and sunshine.
Please, if you know someone who suffers from chemical sensitivities or any severe airborne allergies try to be understanding of their needs. While you may feel put out and irritated by the request to not wear perfumes, aftershave or any of the above, while your brain is going, "crap, I like it and I have used it for 30 years" "I think they are crazy" and "who do they think they are?" Remember, that it could happen to you too and is it really that big of deal for you to not wear it? It is darn near impossible to understand the visceral reaction those of us with MCS have to this stuff and while we try to conform to your world, it is time for us to stand up and be recognized. Recognized for the wonderfully different people we are. People that would just like to go places, hang out with our friends, hold a job and even go to the grocery store. We want to be productive members of society and we deserve it.
Monday, April 9, 2012
So an introduction.
All my life I have wondered what everyone sees in all the perfumes and aftershaves and other smelly stuff that invades our environment. One of the biggest impacts on me was as a child going to choir practice and having to sit next to some 'adult' that just smelled of 'ode de toilet'. OK, you have to remember I was about 10 at the time and couldn't fathom why anyone would want to sit next to her or even be in the same room. I would always want to leave or try and sit on the other side of the room, but no one else seemed to mind, so, as would become my mantra, it must just be me.
Now over the years, smells have always bothered me but not to the extent that I had to leave an event or miss out on a life outside my own little bubble. In fact my husband loved, I repeat LOVED, to wash in one soap, where a scented deodorant, with a different aftershave and on top of all that different smelling hairspray. For almost 40 years I put up with it and occasionally would say, "Hey, you stink and don't you know your stink really bothers me." OK so maybe I said it nicer than that, but it was what I was thinking.
Then when I turned 57 my life changed, drastically and not for the better. Who would have thought that having a tooth pulled, followed by an infection, followed by oral surgery to finish removing the root would lead to a reaction so severe that I run when anyone or thing that smells is coming at me. Not just because of the smell, here is what happens:
1. Nose, eyes, throat, lungs start burning. Sometimes I don't even notice the smell first, but my body does.
2. Headache
3. My little mast cells in my body, the ones that produce mucous start going into hyperdrive. Can we say "Snot" people. From my nose to the bases of my lungs.
4. Cough, wheeze, cough, wheeze
And the one that really makes me run
5. Dizziness, lightheadedness and blacking out. You can probably understand why I don't like to stay around smelly stuff. I sure wouldn't be responsible if I let it get to that and then, I don't know, drove home.
Now this past week was Holy week with yesterday being Easter. I love all aspects of Easter, except one thing. Lilies. Easter Lilies smell. There is no getting around it. They just do. So on Wednesday, that is last Wednesday, I go to band rehearsal. We are to play at our churches sunrise Easter service. Now just a side note. I co-founded this band. Two of us started out playing guitars and singing and slowly added a percussionist, a keyboardist and another vocalist. We've been together for 1 1/2 years. So back to Wed., you have to remember, when you can't breathe you can't think. OK Wed., I entered the sanctuary, my buddy goes, "Hey, I was just going to text you. You might not want to come. These lilies really smell" and "If I can smell them...I can't smell anything", to late. I spent 2 minutes in that sanctuary and it took me over 14 hours to recover. Two minutes. Oh well, at least I knew the music.
So Easter comes around and I stay outside and other than sticking my head in the door and yelling "I'm out here" I have to endure the band rehearse and they had to be rehearsing for awhile cause one of the girls is always late. Can we say always? So in my head I'm thinking, "crap, here we go again", "oops, don't think that way" and "Lord why on top of all the other trials you have given me do I have to go thru this one too?" I mean I am a social animal and being alone is well...very lonely.
Eventually they make their way outside, the congregation shows up and we have our service. It was an absolutely beautiful morning. So how come we can't stay outside for all our services? Then I think, "Jean, at least you got to attend a beautiful Easter service, don't be negative." But then...WHAM...I watch everyone walk back inside the sanctuary for a breakfast. Umm, "have a nice breakfast?" "Bye?"
Then, I fall apart. In fact I am still falling apart. It isn't my choice to isolate myself. It isn't my choice to feel so utterly alone and devastated. But that is how I am feeling and that is how it is. Will this be the way of my life, for the rest of my life? I sure hope and pray it isn't, but if this is the lot I am given then it will be the life I lead. Let me add something else here. During the last oh I don't know 15 years say, I went thru a long struggle trying to find out about my "Unknown auto-immune disorder" and getting put on so many medications that I couldn't and didn't function, at all, in fact there is at least 3 years of my life I don't remember and the physical pain that never left and of course more on that journey later. We have enough to talk about now.
The point I was going to make is that I was taking control of my life back, got off of all the meds, lost over 200 pounds and was feeling better than I had felt in almost two decades. So, what do I do? I decide to go one step further and applied to become a missionary with my church. How dare I? Oh Lord, I am not blaming you with the body your gave me, I just wanted to do some good. Anyway, I was hopeful, looking at my options....when, oops, all the above happened. That was just less than six months ago. Still can't believe pulling a tooth and subsequent infection could so drastically change my life and the lives of those around me. Friends and family, all.
I know there are others like me. I know it. What have you done to change peoples perspective or have you? What have you done to change your environment? How do you go to the grocery store where the dreaded lilies, laundry soap, lotions and aftershaves are? Frankly, how do you deal with pissing off all your friends and family by asking repeatedly for them to change years and years of habits for you? And how do you go to peoples homes to visit or have people come to your house? Above all, how do you keep your faith firmly in place?
Now over the years, smells have always bothered me but not to the extent that I had to leave an event or miss out on a life outside my own little bubble. In fact my husband loved, I repeat LOVED, to wash in one soap, where a scented deodorant, with a different aftershave and on top of all that different smelling hairspray. For almost 40 years I put up with it and occasionally would say, "Hey, you stink and don't you know your stink really bothers me." OK so maybe I said it nicer than that, but it was what I was thinking.
Then when I turned 57 my life changed, drastically and not for the better. Who would have thought that having a tooth pulled, followed by an infection, followed by oral surgery to finish removing the root would lead to a reaction so severe that I run when anyone or thing that smells is coming at me. Not just because of the smell, here is what happens:
1. Nose, eyes, throat, lungs start burning. Sometimes I don't even notice the smell first, but my body does.
2. Headache
3. My little mast cells in my body, the ones that produce mucous start going into hyperdrive. Can we say "Snot" people. From my nose to the bases of my lungs.
4. Cough, wheeze, cough, wheeze
And the one that really makes me run
5. Dizziness, lightheadedness and blacking out. You can probably understand why I don't like to stay around smelly stuff. I sure wouldn't be responsible if I let it get to that and then, I don't know, drove home.
Now this past week was Holy week with yesterday being Easter. I love all aspects of Easter, except one thing. Lilies. Easter Lilies smell. There is no getting around it. They just do. So on Wednesday, that is last Wednesday, I go to band rehearsal. We are to play at our churches sunrise Easter service. Now just a side note. I co-founded this band. Two of us started out playing guitars and singing and slowly added a percussionist, a keyboardist and another vocalist. We've been together for 1 1/2 years. So back to Wed., you have to remember, when you can't breathe you can't think. OK Wed., I entered the sanctuary, my buddy goes, "Hey, I was just going to text you. You might not want to come. These lilies really smell" and "If I can smell them...I can't smell anything", to late. I spent 2 minutes in that sanctuary and it took me over 14 hours to recover. Two minutes. Oh well, at least I knew the music.
So Easter comes around and I stay outside and other than sticking my head in the door and yelling "I'm out here" I have to endure the band rehearse and they had to be rehearsing for awhile cause one of the girls is always late. Can we say always? So in my head I'm thinking, "crap, here we go again", "oops, don't think that way" and "Lord why on top of all the other trials you have given me do I have to go thru this one too?" I mean I am a social animal and being alone is well...very lonely.
Eventually they make their way outside, the congregation shows up and we have our service. It was an absolutely beautiful morning. So how come we can't stay outside for all our services? Then I think, "Jean, at least you got to attend a beautiful Easter service, don't be negative." But then...WHAM...I watch everyone walk back inside the sanctuary for a breakfast. Umm, "have a nice breakfast?" "Bye?"
Then, I fall apart. In fact I am still falling apart. It isn't my choice to isolate myself. It isn't my choice to feel so utterly alone and devastated. But that is how I am feeling and that is how it is. Will this be the way of my life, for the rest of my life? I sure hope and pray it isn't, but if this is the lot I am given then it will be the life I lead. Let me add something else here. During the last oh I don't know 15 years say, I went thru a long struggle trying to find out about my "Unknown auto-immune disorder" and getting put on so many medications that I couldn't and didn't function, at all, in fact there is at least 3 years of my life I don't remember and the physical pain that never left and of course more on that journey later. We have enough to talk about now.
The point I was going to make is that I was taking control of my life back, got off of all the meds, lost over 200 pounds and was feeling better than I had felt in almost two decades. So, what do I do? I decide to go one step further and applied to become a missionary with my church. How dare I? Oh Lord, I am not blaming you with the body your gave me, I just wanted to do some good. Anyway, I was hopeful, looking at my options....when, oops, all the above happened. That was just less than six months ago. Still can't believe pulling a tooth and subsequent infection could so drastically change my life and the lives of those around me. Friends and family, all.
I know there are others like me. I know it. What have you done to change peoples perspective or have you? What have you done to change your environment? How do you go to the grocery store where the dreaded lilies, laundry soap, lotions and aftershaves are? Frankly, how do you deal with pissing off all your friends and family by asking repeatedly for them to change years and years of habits for you? And how do you go to peoples homes to visit or have people come to your house? Above all, how do you keep your faith firmly in place?
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