a caregiver's view of invisible illness, chronic illness, disability, environmental illness, health, Love, MCS, multiple chemical sensitivities, My Mom, New Year Resolution, supporting someone with MCS, wplongform
I asked my mom for the ultimate act of love this week. I asked her tell about her journey having a daughter who is disabled with MCS. Mom asked me for questions for her to answer. These are her words:
1. What did you first think when I told you I was disabled with MCS and you would have to eliminate all toxic chemicals from your life if you wanted to physically see me?
I thought, God. How do we do that — chemicals are everywhere? How bad is this going to get for my poor daughter? And of course, I thought about myself also. I have lived for so long doing everything using all kinds of awful stuff and not even paying attention until you get an awful wake up call and have to hope and pray it is not too late.
2. Two years after my disability from MCS, what are you still struggling to adjust to?
That if my daughter gets really sick or gets hurt, there is nothing she can do. She can’t even go to a doctor or a hospital because all of the chemicals will kill her. Our hands are tied.
My daughter being so understanding about how hard it is for us and all the mistakes we make — even though she has so much to deal with herself and being so sick that sometimes she can’t even get up.
4 Overall has switching to non-toxic cleaning methods, fragrance-free laundry soaps, shampoos, deodorants, lotions, candles… been a positive or negative experience? Explain.
It has been both. Negative being without my right arm — bleach — used it for everything. Our clothes aren’t white anymore. Really was and is a big fat pain to find the right things to use. A big pain is when something sets her off and we don’t even know what it is. The positive is knowing I’m helping the world and my daughter to be healthier.
5. What are specific things you’ve done to accommodate my MCS disability?
Changed all cleaning products, personal hygiene products, Biggest pain in the the neck is I can’t use hair gel and spray. I NEED IT. I will do whatever I have to or can do to help save my child from being even sicker.
(Daughter’s note — that’s me — after reading this I called my hair stylist — and she gave me gel and hair spray for my mom to try from the same company that makes my shampoo and conditioner).
STOP! STOP! STOP! Get everyone they know — and come near — to stop polluting themselves and the world. We have to do whatever it takes.
7. Are there cleaning products or scented personal care products that you still use? Is this because there isn’t an alternative/due to cost/out of habit?
(Out of habit) Yes, a very little bit of foundation. I really need it.
8. Have people in your life been supportive of the changes you made to accomodate my sensitivities?
Some have been very supportive and understanding and so caring and want to do whatever they can. Others — members of my own family — I want to choke or something to them because they won’t or don’t do anything at all to help.
(Note from daughter (that’s still me) Mom is really a non-violent person.)
9. Now that you are aware of the symptoms of MCS — do you have any sensitivities to any particular products?
None that I can think of.
10. What do you miss that we did together before I became disabled with MCS?
Going out to dinner, shopping, out to lunch. We have one place we can eat outside but still have to worry about the server.
NO WAY — Don’t and won’t really care until most the population has MCS.
12. Are you swayed by advertisements to buy a product or by labels now?
Try not to be by either — mostly by friends and family. Do check some labels.
13. Due to second hand exposure to fragrances do you think there should be fragrance free policies in public places, especially schools and public buildings?
Yes, because people can’t control themselves — some have so much on — it makes everyone sick even if you’re not at the point of having MCS.
14. What is the best advice you could give to a friend/care giver of someone with an invisible illness?
Take a second look or ask questions. Someone might look great on the outside, but the inside is a total mess.
15. When you began eliminating things from your life with toxic fragrances — did you realize how many products there were that contained these toxic chemicals?
NO WAY. Didn’t really think to much about it. Maybe a little bit once in awhile. Not enough to wake up. I get really mad at myself because sometimes I want to use some of the old stuff I used for so long. Of course, I knew some stuff was bad, but there are so many. I would have never even thought of. I think that some people might pay attention if there was a skull & crossbones on the container.
I am so mad at myself and to her employers, because they did so little to help her that you can say they did nothing. She got so sick, she had to quit working and spends her time trying to survive and educate people about MCS so she can save other people from becoming as bad as her.
As for myself, like I said before, because of all the awful, hurtful stuff I used for most of her life, and most of all the worst was because of my smoking for too much of my daughter’s life. I did not realize I was contributing to killing her. Guilt is an awful thing to live with.
(Daughter’s Note — after reading this — I spoke with my mom about carrying guilt about doing something we now know to be harmful but didn’t when we did it. As Maya Angelou says, “When you know better, you do better.” I am very proud of my mom. She quit smoking 20 years ago and stopped using the toxic chemicals as soon as she knew they harmed me. She has nothing to be guilty about.)
My mom would probably rather kiss someone with the plague then get on a computer — but — if you have questions or comments — I will be sure she gets them. She loves to help people, so if you have a question about MCS or an Invisible Illness from the caregivers side — please ask.
Much Love to my mom and all of you today,