Systemic breakdown of the body (or, I wish my hair would stop falling out.)

Autoimmune conditions slowly take our bodies and break them down, and the evidence of this can be seen in a variety of ways.  Not only do we experience the fatigue, chronic pain, and other wonderful effects of autoimmune disease, there are impacts that many don't realize occur.

Eyesight

Lupus has a documented negative impact on the eyesight, but many people experience some loss of vision/blurry vision with Fibromyalgia.  

I had beyond perfect vision as a child and teenager.  But as I started college, I noticed a decline.  Initially, I blamed it on the professor that really liked to use overhead projectors. (For the younger generation, these were machines that projected an image of whatever the instructor put on the table, in the form of plastic sheets with writing or pictures called transparencies.)  This prof really liked her transparencies, and just imagine trying to read (and copy down) pages full of Times New Roman in a size 8 font, and you have an idea of the pain we experienced.  About halfway through the semester, I realized that I was having more difficulty reading the transparencies, and that I should probably see the eye doctor. (As it turns out, you can only scoot your desk so close to the screen before people start to notice something's up.)

So, I saw the eye doctor, and there had been a slight decline in my vision, but nothing major, and I started wearing glasses for driving and when I was in class.  (The problem was that since I was in class or driving all of the time, I pretty much always wore them.  I ended up switching to contact lenses a couple years later.)  And with every visit, my vision became just a little worse.  It was nothing to be extremely concerned about; my eye tests came back normal and my eyes were otherwise healthy.  

And then, about three years ago, I had a sharp decline in my vision.  Again, the other tests revealed no other problems, and so we had a bit of a medical mystery on our hands.  (Now, everyone realizes there were two factors at hand: Autoimmune disease and a medication I was on at the time.)  

Hearing

This is one I struggle with admitting is an issue.  There are certain tones that I'm losing the ability to hear.  It's been a pretty gradual decline, but it's definitely noticeable.  I can usually cover it pretty well by reading lips when people are talking or (when I can) minimizing other noise around me, but I've noticed a lot of people like to turn away when speaking, or cover their mouth when speaking, or speak softly on the phone.  I have frequently misheard things that were said (and in some pretty funny and creative ways), and it can definitely be challenging.  

On the other side, there are sounds that I can hear all too well, and cannot tolerate.  I don't do well with loud noises (it's just overwhelming for me) or certain high pitched noises.  For instance, my husband is a handyman, and uses a lot of battery operated tools.  When he charges those batteries, they emit a very high pitched annoying sound that makes me want to hide my head in the couch to avoid it.  It's one of those noises that simply grates on my nerves and almost causes physical pain.

Touch

Being touched can be painful.  Hugs and handshakes can be painful because many people don't realize how tight they're squeezing, causing pain to our already tender muscles and joints, but just touching the skin lightly can be painful and/or irritating.

There are days that my clothes hurt.  It's not that they're too tight--I make sure I buy clothes that fit well and comfortable made from lightweight fabrics that are soft on my skin--it's just that my skin is irritated by the slightest touch, slightest pressure, slightest movement upon it. In my household, we've taken to calling this "my tactile stuff" to differentiate it to the pain I experience from too my pressure, and it essentially means "don't touch me right now."  

Experiencing this can be extremely isolating.  

Smell

While other things have declined, my sense of smell has grown very acute.  This is likely related to the Multiple Chemical Sensitivity.  If the trash hasn't been taken out, I can definitely tell.  But, on the plus side, I can tell when fish is going bad before anyone else.


And finally, this isn't one of the five senses, but my hair is falling out...

I've gotten to the point in my life where vanity is a waste of time and energy, but I still like to look good when I can.  I grew up having extremely thick and beautiful hair.  It was so thick that hairdressers would have to thin it out some to get it to do anything.  And then, about 10 years ago, I started being able to pull handfuls of it out after I washed it.

Initially, I didn't think anything about it.  It's said that we lose 100 hairs a day, so I just figured it was part of that.  (No, it didn't dawn on my that that number was body wide.)  And then I noticed the bald spot forming on the front of my head.

So, I started getting my hair cut shorter.  I've learned if I keep it shorter, it takes the extra weight off of the hair, and I tend to lose less hair, but I'm still losing it.  Generally, it's only noticeable to me, my hairdresser, and the coworker who teased me that they could follow me around the building by a trail of my hair, but it's definitely something I'm a little sensitive about.  

I've recently stopped coloring my hair, and have been surprised to find out that the warm brown color that it was once has now become a dark, almost flat brown.  I realize this is the combination of the disease on my body as well as the medications I'm on, but it's still frustrating.  

With all of these, yes, they worsen when I'm experiencing a flare or in times of high stress.

So, what are some ways I've learned to cope?

• Regular eye exams.  It means I keep my prescription for my glasses and contacts up to date and ensures that my eyes are still healthy.  (This is especially important since I've recently started on a "Disease Modifying Medication" where my eyes could be negatively impacted.)
• For hearing, I try to avoid situations where there's a great deal of noise.  I've also become more open with telling people, "I need you to look at me when you speak" or "I'm sorry; can you repeat what you've said?"
• For touch, I'm fairly open and speak up when it's more of an issue to me.  And my husband understands that it's not personal; I'm just having a rough day.
• Regarding my hair, I've learned to work with hair dressers that "get it."  Many of them have worked with thinning hair, even if they're not familiar with the conditions that I'm dealing with.  Their job is to make me look and feel my best (and least, when it comes to my hair).
• And for all of it, it's important to manage stress.  Keep watching here for an upcoming blog on managing stress when you have an Autoimmune condition.  

Definitions of medical conditions listed in my medical chart

Chemical Sensitivity (Or what do you do when your shampoo makes you break out in hives?)

About four years ago, I began having allergic reactions to my shampoo.  And shortly thereafter, I noticed that I was breaking out in rashes with my face cleanser and make-up. Then there was the allergic reaction to my deodorant (which was highly uncomfortable), and I noticed that I seemed to have increased sensitivity to my body wash.  Even my clothes seemed to cause a sort of allergic reaction.  I'd used the same brand of products for about 15 years, and the brand reported themselves to be natural with ingredients that shouldn't cause these sorts of problems.

But sure enough, I was experiencing sensitivity to something within the products I had been using for years and found myself standing in the aisles of Target wondering what would work for me.  Well, I found myself wondering what would work, but also worried of what else may cause these reactions. (I'm glad to say that I was eventually successful in finding new skincare, shampoo, body wash, make-up, deodorant, laundry detergent, and cleaning products, but I'm also very aware that this could change at any time.)

I, like many other individuals dealing with an Autoimmune Condition, have developed Multiple Chemical Sensitivity (MCS).  WebMD has a great technical description of this condition, but here's a definition from my point of view:  Intolerance to a variety of chemicals that can lead to allergic reactions within the body.

I won't bore you with the list of chemicals I cannot tolerate, but fragrance can be a major trigger for someone with MCS.  Strong perfumes or colognes are problematic items for me, because it can actually trigger breathing difficulties and severe nausea.  I once had to share a computer wrist rest of someone who wore strong colognes, and found myself breaking out in hives on my wrist.  I can't walk down the detergent aisle at the store because of the strong perfumes.  I can't wear clothes that have been bleached, nor can I be around areas where bleach has been used for cleaning purposes.  

Like Fibromyalgia and Lupus (or other Autoimmune Conditions), there isn't a definitive list of what chemicals to which a person with MCS will react to, nor is there a list of potential reactions, so what I may have sensitivities to others with MCS may not (or vice versa).  

It's easier to control the environmental factors within the home.  For instance, in our household, we've found a line of house cleaning products that both work well and don't lead me to have a negative reaction.  We're very clear with the individual who cleans our house for us that it's necessary for her to use those cleaners, as well as why.  

In our home life, we have run into some challenges with MCS. My husband and I are both artists and many creative endeavors require chemicals that aren't so great.  I refuse to give up those creative outlets, and so I've had to figure out workarounds where I can.  The big challenges come while being out in the world.  

Ever have the experience of stepping into an elevator with someone who's wearing very strong perfume?  For a "normal" person, it's an uncomfortable experience, but for someone with MCS, it can feel like being choked.  So you can imagine being stuck on a plane or working in an office where strong fragrances exist.  

So, if you're sensitive to chemicals, what are some ways to deal?

• If you're working outside of the home, advocate for a fragrance-free workplace. You might be surprised how many of your coworkers will thank you for it. Chemical Sensitivity is also recognized as as a disability by the Americans with Disabilities Act.  (Learn your rights under the ADA.)
• Read labels.  Learn about what products you're using on and in your body.  Learn about the products you use to clean your home.  Not all "natural" products are natural (labeling can be misleading), so do some research.
• Remember if you have an Autoimmune Condition, you're more likely to develop additional Autoimmune Conditions and/or Chemical Sensitivity.  Talk to you medical team and other trusted professionals on how best to address these issues for you.

Definitions of medical conditions listed in my medical chart