Invisible Illness Week 2013: I have Multiple Chemical Sensitivity

1. The illness I live with is:  Multiple Chemical Sensitivity (MCS)
2. I was diagnosed with it in the year: 2011 (After a seizure)
3. But I had symptoms since:  I was a child (looking back on it)
4. The biggest adjustment I’ve had to make is:  The way I prepare and eat food.
5. Most people assume:  I’m making this stuff up and that it’s not real.  (I wish it weren’t real!)
6. The hardest part about mornings are:  Getting up.
7. My favorite medical TV show is:  Food Hospital
8. A gadget I couldn’t live without is:  My immersion blender.  (I use it to make homemade mayonnaise in minutes!)
9. The hardest part about nights are:  Not being able to sleep.
10. Each day I take __ pills & vitamins. (No comments, please)  I don’t take either because I’m allergic to the fillers they put in them.
11. Regarding alternative treatments I:  have to use alternative treatments because “conventional” treatments make me severely ill.
12. If I had to choose between an invisible illness or visible I would choose:  I would choose a visible illness because people can understand those better than invisible ones.
13. Regarding working and career:  I miss having a job to go to everyday, but I can’t work anymore because of my illness.
14. People would be surprised to know:  I miss conventional foods like Starburst and Cheezits.
15. The hardest thing to accept about my new reality has been:  Not being accepted by my peers and my family.
16. Something I never thought I could do with my illness that I did was:  Learn how to become a better from-scratch cook.
17. The commercials about my illness:  There are no commercials about my illness that I know of.
18. Something I really miss doing since I was diagnosed is:  Going to and eating at a restaurant.
19. It was really hard to have to give up:  My social life.
20. A new hobby I have taken up since my diagnosis is:  Sewing and crafting projects.
21. If I could have one day of feeling normal again I would:  Have friends over and not worry about synthetic fragrances or food ingredients making me ill!
22. My illness has taught me:  Not to judge a book by it’s cover!
23. Want to know a secret? One thing people say that gets under my skin is:  “She’s faking it!” or “You’ve got to be kidding me!”
24. But I love it when people:  Treat me like a human being, listen to what I have to say and try to understand.  I also love it when they stop lighting candles or using fragrance around me!
25. My favorite motto, scripture, quote that gets me through tough times is:  “Being  honest may not get you a lot of friends, but it’ll always get you the right ones” ~John Lennon.
26. When someone is diagnosed I’d like to tell them:  There are others out there sharing the same plight.  Don’t give up, I’m here and can    help!
27. Something that has surprised me about living with an illness is:  That everyone expects me to be healthy and normal.  
28. The nicest thing someone did for me when I wasn’t feeling well was:  My fiance cooks for me, cleans the kitchen and  helps me walk to the bathroom.
29. I’m involved with Invisible Illness Week because:  I think it’s important to connect with others having similar issues so that we can share our experiences and help each other cope.
30. The fact that you read this list makes me feel:  Relieved.

Top Reasons Having Multiple Chemical Sensitivity is Frustrating

This is a post about how I’ve been feeling lately.  If you or a loved one suffers from Multiple Chemical Sensitivity feel free to comment about your experiences or what to do during the sad times.

Not being able to go out and about that often.  It’s hard for me to go anywhere:  movie theaters, grocery stores, shopping malls, Target, in a car, around car exhaust, to a restaurant, the park, theme parks, carnivals, concerts, dive bars, different cities or countries, cruise ships, coffee shops, ice cream shops, perfumeries, candle stores, clothing stores, book stores, arcades, or anywhere else you can think of.  (This is due to smelling the cleaning chemicals, perfumes, fragrances, or MSG in the air.)

People don’t understand what MCS means or believe that it’s real.   I am told a majority of the time by people who don’t understand  my conditions that they are all in my head.  I have been told that I “conveniently” have a reaction.  Let me tell you that none of these reactions are even remotely convenient.

MCS sufferers behaviors change due to chemical reactions.  I am one person when I haven’t been exposed to synthetic chemicals, I’m another when I’ve been exposed a little bit, and yet another person when I’ve had low levels of exposure for longer periods of time.  (The latter is when all of my medical conditions return.)

Not being able to do household chores as often as others might.   I’m not a white-glove-test kind of clean freak or anything but I would like to have my laundry caught up and my dishes washed.  My medical conditions prevent me from being able to bend and stoop (My back injuries among other conditions) which is a rather difficult thing to avoid doing when cleaning ones home.

It’s rather lonely being home all the time.  My family goes out and about most of the time.  They have jobs (I really wish I could have a job again!).  They run errands without me.  I end up watching a lot of TV and writing blog entries.  I also end up cooking as that’s the last hobby I have that I can still do sometimes.

People want me to behave like someone without documented medical conditions.  I guess this is one way they can remain in denial about what’s going on with me.  I have to live with this so being in denial about it really isn’t a possibility for me.  Well, that and be able to breathe at the same time.

Not being able to cuddle.  I know that this sounds pretty frivolous to some of you but it’s a big deal to me.  My Fibromyalgia kicks into full swing and I’m not able to be touched at all.  Sometimes the sheets touching my skin can be quite painful.

Becoming completely exhausted when I do go out or do housework.  It just hits me like a brick wall and I’m suddenly too exhausted to do anything.  It gets rather frustrating because I want to be healthy and I’m not.

It’s almost been a two-and-a-half years since I discovered that I have MCS and I am still being exposed to chemicals by family members.  I have had the conversation regarding what this condition is and how it affects me numerous times with my family.  My mom bought me Epsom Salts with synthetic lavender essential oil in them.  It’s too bad that the lavender essential oil was the last ingredient with fragrance listed right above it.  I can’t use them.  I thanked her for the thought but she got upset and left the house.  I just wanted the plain Epsom Salts, anyway.  I have my own organic lavender essential oils that I could add to the bath if I wanted.

I still get asked if we can use the fragrance free commercial dish and laundry detergents.  The answer is still NO!  I make my own laundry and dish detergents because I can no longer use the commercial cleaning solutions we’ve all become accustomed to using.  I have found out that they actually work better than the commercial stuff which is wonderful because I was terribly worried that they wouldn’t work well at all.

Excitotoxins: The Taste That Kills

This is a lecture given by Dr. Russell Blaylock.

The Vaccine Safety Conference: Dr. Russell Blaylock, MD, CCN

The central role of toxins which excite the brain and immune system in aluminum and mercury-containing adjuvant-triggered disorders regarding neurological development and degeneration.

 

More information can be found here.

Nutrition and Behavior by Dr. Russell Blaylock

 

This is a lecture given by Dr. Russell Blaylock that is very eye-opening about the dangers of MSG and Aspartame.

Normal for a Day

I wanted to feel better for an evening and go to dinner with my boyfriend.  We went to my absolute favorite restaurant.  It just-so-happened to be the restaurant’s anniversary and the prices were like they were 100 years ago!  What a treat.  It’s too bad that I won’t ever be dining in that restaurant again.  I probably won’t be dining in ANY restaurant again because I have Multiple Chemical Sensitivity, or whatever the professionals want to call it this week.

I have been living a lifestyle that moderates my sensitivities as best as I can without living in a hole in the ground or out in the middle of nowhere, but hey, that’s still an option at this point.  This lifestyle doesn’t include eating at any restaurant.  (Anyone else out there with MCS will understand what I mean.) I just wanted to feel normal for a day, so I went to a really fancy one that usually costs a lot of money.

Now, I am having a full-blown attack of all of my medical conditions.  People who have MCS can have a wide variety of medical conditions; However, I will list the ones that I have:  Fibromyalgia, Personality Disorders (co-morbid), Bipolar Disorder, Endometriosis (that ended up in a hysterectomy, but I think it’s still relevant), Irritable Bowel Syndrome, Sciatica, Neuropathy, Reynoud’s Syndrome, and a slew of others that I just can’t think of right now due to my Brain Fog.

It probably wasn’t just the MSG that caused my reactions, though.  I was around people wearing colognes or perfumes, inhaled gasoline from the exhaust of all of the cars, was breathing in pthalates from the plastics in my boyfriends new-ish car, and breathing-in various synthetic chemicals in from all of the restaurants and gas stations.  I’m pretty sure that those things had something to do with my severe reaction as well.

At any rate, I have realized once again that the chemicals are the culprit and that I will not be able to live my life like most people do because of my disability.  It was, at least for the moment, nice to be normal for a day.