Monday, September 12, 2011

A 2 Z: Queen of the Universe! Or not....

This week is National Invisible Chronic Illness Awareness week about spreading awareness of diseases and conditions like Fibromyalgia, Lupus, Multiple Sclerosis, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Chronic Lyme Disease, Rheumatoid Arthritis, Ehlers-Danlos Syndrome and many others. For my "Q" post I'd like to answer some common questions and comments I get about my own life living with invisible chronic illnesses. Feel free to skim or jump to the ones that look the most interesting if you don't have time to read them all. I've included website links to helpful resources, as well.

But you look so normal and healthy! Yes, that's why it's called an "invisible" illness. The most common symptoms of these types of illnesses are things not easily visible like pain, fatigue, and cognitive problems (brain fog).... Please don't assume that if I look normal and if I'm smiling, then that means I'm feeling perfectly awesome.

Aren't you too young to have all these health problems? It's actually quite common for many of these conditions to develop in the early twenties, or even younger. Others are genetic issues that are present from birth. It can be difficult for those of us assumed to be in the prime of our lives to be so limited in work and pleasure activities. We often find we have a lifestyle more in common with people of our grandparents' generation than of our own. (social networking site for young adults with chronic illnesses)

How do you accomplish so much if you are that sick? Honestly, I feel like there is so much more I want to do that I haven't been able to. Someone (Cori) once said of me that I could take over the world if I wanted--sometimes I jokingly wonder if this is my "handicap" to keep me from dominating the known universe! haha! But to be serious, I do have to spend a majority of every week resting in bed or on my recliner couch. Sometimes I'm able to do writing or other computer-related tasks while resting, by using my laptop on a special bench my dad built to take the heat and pressure off my legs. Other times I'm too worn out to even do that. So I guess my answer would be that my projects get done eventually out of pure determination to keep working at it in the little bits of time when I can.

What controls your symptoms? I have dietary limitations and some prescriptions and supplements that help slightly, but the only thing I've found that significantly decreases my symptoms is getting lots of rest. I can do very little housework or cooking and I work under ten hours a week with lots of breaks.

What's the hardest thing about living with these conditions? I have to consider each and every thing I do carefully to determine how much of my energy it'll use up, how much pain it'll put me in, and how it will affect the things I have to get done later that day or week. This includes everything from the little things like when I take a shower or if I can load the dishwasher, to bigger things like whether I can meet a friend for lunch, attend a church event, or take on another hour of work. I hate having to say no to things I want to do, especially the things that would make a difference in the world like volunteering my time to help others. However, by learning to pace I've been able to lower my pain and brain fog levels considerably, most days.

(The Spoon Story is an analogy to help us understand what it means to pace yourself all day.)

What are some blessings you've found in the midst of everything? My limitations force me to rely on God's strength for everything I do. All my accomplishments are so clearly things I couldn't have done on my own, so all the glory goes to Him. Also, I find that I'm able to have empathy with others and reach out to help people who wouldn't otherwise have let me if I was a normal healthy person.

Why hasn't God healed you? I believe God can and does perform miraculous healings. However, God has never promised that He will always heal us physically. In fact, just the opposite. The Bible is clear that while we are on this sinful world, we will  have suffering. For now I've heard a clear "no" or at least "not yet" when I've asked for healing. I rejoice in the knowledge that in heaven I will experience a perfect body and in the mean time I know God is using my challenges for His glory.

(My Journey is the answer God gave me to my "Why?")

Have you tried _______ (this special diet, these supplements/vitamins, this exercise program, this treatment, or this medication)? My friend was CURED by doing that! Yes. I've tried pretty much everything. I have to live with this disease every day, so am very invested in keeping up on all the research, theories, and other patients' experiences. Every person's body responds differently, so what may significantly help one person could do nothing or even harm another.

I see you walking around and talking animatedly at church or the writing conference or other gatherings. How do you have so much energy to do those things? I am a bubbly and happy person and my disease does not remove my personality, so I still can seem bubbly and excited even if I'm not feeling well. Also, I'm able to do a lot more for a brief time than I can do for an extended time. Adrenaline and saved-up rest can get me through a few hours or weekend doing pretty well. I then crash at home for anywhere from several hours to several days or weeks. I've also learned little tricks like bringing a little pillow to support my back, parking near the door (handicapped spaces) if I have to carry anything, not carrying a purse, and not standing for too long.

What exactly are your conditions? I've been diagnosed with Fibromyalgia, a heart condition, frequent subluxation (joints partially dislocating), Chronic Fatigue Syndrome, Raynaud's (circulation disorder), IBS, and a vision processing disorder, plus all the things that go with those like insomnia, allergies, digestion problems, muscle weakness, and low blood pressure, etc, etc. That's an awfully long list of things to go randomly wrong and I'm now convinced that I actually have Ehlers-Danlos Syndrome III. It's a genetic connective tissue disorder that can affect your muscles, joints, skin, and organs, and would explain pretty much every single one of my symptoms all from that single disease. I'm working on finding a specialist to confirm the "maybe" diagnoses I've gotten so far.

Sometimes you refer to your limitations as an illness and sometimes as a disability. Why?  What I have is an illness but what I am is disabled. Changing my thought process over to thinking of myself as disabled was a huge step for me in accepting my disease. To me, the word "illness" means something that has an eventual end (either by getting well or by passing away). I found myself putting my life on hold, waiting to do this or that "until I'm all better." When I came to realize that I likely will never be "all better," I grieved for my dreams that were gone, and then eventually I had to get up and go on with the life I have, making new dreams or adjusting old ones. A disability is something that will be there forever, but that can be overcome to some extent. For me, labeling myself as disabled gives me permission to learn to live the life I've been given to the fullest extent possible.

I am so thankful for the internet that allows me to be so much more connected to the world than I can be just physically. Thank you to each of you who support me prayerfully and with encouragement through this journey of life. Please remember as you interact with the rest of the world that some of the reactions or actions you wonder about in others may be because they, too, have an invisible illness causing a problem you can't see. Feel free to ask me questions any time!

Check out the other "Q" posts in the "From A 2 Z 4 U & Me" meme in the link at the bottom of


Laurel Kriegler said...

A beautiful post Amy! And all very well said. It's great that you're relying on God for everything, and that He is therefore using you amazingly.

I love your laptable that your dad made for you - that is incredibly useful. Wish I could find myself such a convenient one. My husband had a good one, but it's too high for me. *sigh. Anyways, I'm gonna have to head to the desk soon lol

Random Ramblings of said...

I was diagnosed with Fibromyalgia and CFS after 8 years of not knowing what was wrong. July 1996 I was totally healed of both - a huge blessing. I went from having a handicapped sticker to totally well. So, I know your struggle and I too had the comments "You, don't look sick." I pray you are healed 100%.

Lisa Mikitarian said...

Thanks, Amy, this helps understand the whole--though I feel confident that you are going to accomplish everything that God has set before you. Love you.

Barbara Lynn Culler said...

Wow! Thanks for sharing. The "Spoons" story really helped me understand what you are dealing with each day.
You rely solely on God's grace to make it.

Sparrow said...

Thanks, Everyone! Barb, the Spoon story helped me understand myself better, too, when I first got more sick. Learning to conserve spoons and pace myself has made a huge difference in my quality of life. I'm now able to keep my pain levels and brain fog much lower most of the time.

Shenk said...

Last year I wrote an essay on this article and reading your blog made me think of it. I know it's not the same illness, and it's not really even as "invisible" because of the physical effects on the body, but I thought you might want to read it.

Joanne Sher said...

Soooo love the spoons analogy. Thank you so VERY much for this, dear Amy.

This Patient Perspective said...

Fantastic Post!! I really like how you answered all these common questions that we get asked all the time. Sometimes I don't know what to say and I just get frustrated. So reading this article helps me formulate some answers for when other people ask these questions!

Laury said...

I can totally relate.

Shelley Ledfors said...

Great post, Amy. You answered each of those questions so well. I remember reading the spoons story another time when you put a link to it. That's a great explanation, too. Thanks for sharing this.

Marji Laine said...

I passed the link along to a buddy of mine who has Lyme Disease. Her daughters discovered that they had it, too, while still in high school.

I so appreciate your postings. You inspire the best in others.

Rita Garcia said...

Beautifully said. You inspire me! And great laptop table. LOVE YOU!

Niki Turner said...

Blessings, Amy! Thank you for sharing. No one knows what the next person he or she meets is dealing with. Those "invisible" ailments are more common that any of us think.
May you find a specialist with the wisdom to provide a correct diagnosis and treatment plan!
Meanwhile, we can all learn something from you about pacing ourselves and prioritizing. You're blessing others even in the midst of your trial, much like Paul!

Rhonda Schrock said...

Even though I'm not disabled, I'm struck by your practice of being very deliberate about how you use your time and energy. You know what? That applies to all of us. Makes me think about my stewardship of my own health, time, energy, rest, etc.

Bless you!

Diana Lesire Brandmeyer said...

Ah Sparrow, I get it. I don't have as many (not even close) issues that you have. I have a gluten allergy and I am hypothyroid. When my medication gets off, like it did this summer just getting dressed was a reason for a nap. And the statement I love the most is, I'm sure you could eat a small piece of_________ and it won't be a big deal.
Yeah, right. Come back in 12 hours and see what happens.


Patty Wysong said...

Amazing, Amy. So well said. And I remember your Spoon Story--lvoe that one! =] =]

Had to laugh at the Queen of the Universe and taking over. =] =]