Living With Invisible Illness

A letter on “invisible illnesses” such as fibromyalgia, chronic fatigue, lyme’s disease and a host of others. Well said.

“I am the face of invisible illness. Invisible illness is exactly that – you can’t see it. But I can. Every time I look in my mirror I see the rigors of daily life with a chronic condition that no one is even sure I have because I don’t look sick.

What is a day in the life, you wonder? Thank you for asking. Most people don't. I’m weary to the bone most mornings because I am the proverbial princess (or prince) and the pea and no position, temperature, bedding or pillows make me comfortable.

I have irritable bowels in case you wanted that information, too. That’s an understatement because I may not be able to “go” for days, yet have uncontrollable diarrhea on my way to work or elsewhere and barely make it in time. Or I might be blessed with bouts of both.

My bowels may not be the only irregularity. My blood pressure, blood sugar, or body temperature may all swing back and forth like a yo-yo.

Pain is always part of my day in some form. It may be headaches, joint or muscle pain. It may be mild or it may be debilitating enough that I can’t lift my arm over my head. The pain may be accompanied by weakness, numbness or tingling sensations just to make it interesting.

There are days I may feel like I can run a mile and others where I can’t do the dishes. My children, my grandchildren often wear out what energy I DO have simply by being children.

If I’m lucky I can work at a job or own a business. Sometimes though, I feel fortunate if I can walk to the mailbox. If I do work, I am amazingly adept at adapting my workload to my up and down cycles. I have to be.

I have an invisible illness that dictates what I do and when and for how long. What I ate this morning may make me sick another time. The 30 minute walk on a beautiful spring day that I desperately want to take runs the risk of not allowing me to clean the house tomorrow because I won’t be able to function. My brain may be sharp as a tack right now, yet later I might forget what I had to eat today, my doctor’s name or a phone number I call frequently.

All the books I’ve wanted to write, nature photographs I’ve wanted to take, work I’ve wanted to do, people I’ve wanted to spend time with, activities I’ve wanted to participate in, places I've wanted to go….they’re all out there, waiting. But in here, I can’t ever know for sure if I can do anything more than dream of them because of an invisible illness that wants to control my life and does it quite well as a rule. But I have two choices as I see it: try or don’t.

Sadly, and blessedly at the same time, people don’t see anything wrong with me. I smile like them. I talk like them. I walk, get dressed, eat, go to the bank like them. But I see it. I see it in my eyes each day when I wake up. I see it on my face when I brush my teeth before bed.

I’m not lazy. I’m not making it up. I’m not antisocial. If I’m depressed it’s because I have baggage that weighs me down sometimes. What I am, is intelligent, funny, compassionate, a dreamer and stronger than you can possibly know because I deal with this invisible illness……alone.”

There is an element of sadness in this letter that touches my heart. It speaks to me of the compassion we all should have for each other on a daily basis for none of us knows what another is facing through the smiles they wear.

Don't Let Irritable Bowel Syndrome Make you Irritable

Post-holidays, irritable bowel syndrome can really rear it's ugly head. For those who suffer the ups and downs of the yo-yo digestive (and elimination) tract; the stress and altered eating patterns of the holiday season can wreak havoc. So that makes this post perfect timing as everyone tries to get back on track, lose holiday weight gain and determinedly stick to those resolutions (or have you given up already?)

Before I offer some help to the long suffering IBSer; I feel I should at least describe the condition. And realize, though I may speak with humor there's really very little to laugh about if you're caught up in the throes of the discomfort IBS can instill. Any humor I inject comes from 1) familiarity with the issue and 2) the belief that the more lightheartedness you can add to any situation; the better your outlook will be. Pretty simple, yes?

So, IBS or irritable bowel syndrome is a collection of symptoms that can include abdominal discomfort, bloating, cramping and alternating constipation and diarrhea. These symptoms vary from sufferer to sufferer and day to day. Because of the erratic behavior patterns of this health condition; most IBSers know EXACTLY where a bathroom is located no matter where they are. It's a pain......well.... in the ass. Sorry, I had to.

IBS doesn't just cause physical pain and discomfort but also mental duress which can be severe. Loss of self esteem, the blues, anxiety and others can make one feel uncomfortable enough to not even want to leave the house. This sets the IBSer up for even more severe emotional problems such as agoraphobia or clinical depression. Yikes.

A diagnosis of IBS usually comes after a lengthy discussion with a health care provider. Said provider will, hopefully, rule out more serious diseases instead of just making a blanket diagnosis of IBS. If indeed, that is what the problem is determined to be, the IBSer will likely be offered various pharmaceuticals to control symptoms. Be warned that many drugs will ease one symptom only to cause another. It's the nature of the Pharma Beast.

Fortunately, because IBS has been around for awhile and lots and lots of people suffer with it; there have been breakthroughs in alternative treatments for the condition which are more gentle, infinitely more effective overall than traditional health care methods, and less inexpensive.

• Massage. What would you expect me to say, I'm a massage therapist. :-) Seriously, I wouldn't advocate it if it didn't work. Massage facilitates the calming of an overactive nervous system which is part of the IBS complex. The more your entire body relaxes, the more your colon will too. Because many IBS sufferers have a predominance of either diarrhea or constipation; a therapist can use specific abdominal strokes to hasten or slow the motility (movement) of the colon contents.
• Diet. Most sufferers already have a pretty good idea what foods/beverages they should avoid to manage IBS attacks. The problem here is not adhering to the diet that makes one feel the best. That's a choice. If you have IBS and you know that dairy causes cramping and diarrhea but you still eat cheese; that's a choice you've made. I'm being kind of harsh and I could apologize but I won't. YOU can control what goes into your mouth and many types and combinations of foods will trigger IBS symptoms like clockwork.
• Supplements. Fiber, probiotics, calcium and magnesium, oil of peppermint or fennel and others may all be useful in quelling the symptoms of IBS. It's important to research the effectiveness and quality of any supplements so that symptoms aren't made worse or money wasted on ineffective products.
• Hypnotherapy/EFT/BodyTalk/Others. Many mind body therapies use energy psychology to elicit a healing response in the body. Energy psychology is a synergistic blend of body work with tapping into one's emotions to clear blockages in the mind and body that inhibit healthy function.

Talking to other IBSers to learn how they cope may also be helpful as long as one skips the "whine" with the cheese...... Remember that being proactive in one's own health care, including having a positive outlook, is often the best medicine.