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

What can set a flare in motion? (Or why I HATE Daylight Savings Time.)

Flares are times at which the symptoms of Autoimmune Disease/Chronic Pain conditions are at their most acute and severe.  Flares can be short term (few days) or can last long term. They can happen for unpredictable reasons, but a Chronic Pain Warrior learns that are certain things that can set flares in motion for them (and it can differ from person to person.)

For me, there are things that I know can start a flare.  Stress, emotional overexertion, physical overexertion, changes to my sleep habits, medication changes, allergies, if I'm fighting off an illness (or sick with an illness such as a cold or the flu), or a multitude of other factors.  There are many that I've learned to avoid or to mitigate their impact, but there is one change in my environment that seems to get me every time.

Time changes.  Daylight savings time changes are probably my least two favorite days of the year, consistently, because I'll feel the impact of those changes for at least a week. Unfortunately, I can't avoid the flare, but I've learned a few tricks to mitigate it:

• Avoid trigger foods like sugar, caffeine, and alcohol.  I tend to avoid those foods anyway, but I seem to crave sugar and caffeine when I'm flaring.  (They provide quick energy, but I pay for it later.)  
• Try to drink plenty of water and stay hydrated.
• Eat regular meals.  (Don't skip meals! This can cause even more problems.  As a tip, many grocery stores are now offering prepackaged meals that are easy to throw in the microwave or oven and don't require too much thought, planning, or work.  Keeping a few of these around while flaring can allow you to focus on recovery while still getting a nutritional meal.)
• Rest when needed.  (Sleeping too much can also be a problem because it'll throw off sleep schedules, but allow yourself to rest.)
• Don't over-schedule/over-commit yourself.  Take a step back and focus on your self-care.
• Are there adjunctive therapies that help you?  For me, those include the use of Essential Oils, massage, acupuncture/cupping, and meditation.
• Gentle yoga (keyword gentle) and stretching can be helpful.  
• Do you have an activity that you enjoy that doesn't require a lot of output? Maybe it's reading a good novel, watching a funny movie, or sitting outside enjoying the sunshine. Spend time doing something that you find enjoyable and relaxing.

Personal Note:  I've found great Essential Oils through a company called Ravenscroft Escentials (link here).  Ginger and Charlie are amazing, extremely knowledgeable and helpful, and their "Fibro Rub" oil has helped me immensely.  

Definitions of medical conditions listed in my medical chart