Monday, October 11, 2010
Monday, December 7, 2009
About Us
Wormy and I were introduced in Argentina while I was serving a religious mission. At the time, several other American missionaries serving in the same area got sick with similar symptoms. Unfortunately for me, as far as I know all of those missionaries have gotten better. Most through miraculous blessings. So now it's just me, and no one has left me even a hint as to what it is we got.
Most of you who know me are probably thinking- wait, you still have that? The truth is, I don't talk about being sick much. And if people ask about it, I'll downplay this as much as possible. If you think this is weird, just imagine explaining the most personal, heart wrenching trial you've ever been through. You're probably not too inclined to share all the details either.
I also hold to the fact that, while I am sick, the sickness is not me. So I got sick a while ago. I'm still the same person. I like the same things. If someone had chopped off my leg in Argentina I wouldn't call you each month just to re-inform you that yes, my leg is still gone. We wouldn't sit around and talk about my missing leg four years after the fact. Instead we'd probably just do the things that we like to do together because I'd still be me. Even without a leg. My Argentine disease isn't much different. I'd still rather talk about the things I'm interested in and do things I like doing. And trust me- just like if I woke up to see that my leg had grown back- if we ever find a cure for this I'll be sure to be yelling it from the rooftops. You won't need to rely on any rumors of that one.
When I talk about being sick people typically ask me the same questions, so I'm just going to go ahead and answer them here. I'll answer the questions with the most commonly asked first.
But I thought you got better?
I know you did. Someone out there had a whole lot of fun spreading the news that I was cured. And those of you who didn't hear that thought that since I stopped talking about it, it just went away. It never was true though... There was a point a few years ago when I went from being terrible to slightly less terrible. I think that's where the 'cured' rumor stemmed from. And the fact is, I've almost always been able to do a few hours of activity a day so you probably saw me during those hours and assumed things were fine. It's ok, you're only human. And to be honest, you should count your lucky stars that you've never been sick enough to understand the ins and outs of being chronically ill.
But you don't LOOK sick.
Sigh. I know, I know. First of all, can I just say that you should NEVER say this to people! It's actually a very emotional situation for most of us who are chronically ill. It's weird to think that there's a stage of illnesses between a fatal case of cancer and being perfectly healthy. But it turns out sick people aren't always in hospital beds and handicapped people don't always ride in a wheelchair. There's a whole network of people out there who are suffering from what we like to refer to as our 'Invisible Illness'. They are illnesses that are chronic and life changing, but that don't show themselves on the surface. Diabetes, Fibromyalgia, Chronic Fatigue, severe migraines, and arthritis are just a few. Most people who suffer from these illnesses don't LOOK sick. In fact, many of them are able to hold jobs, raise children and lead what might look like a very normal life. But it only looks normal because you're not around to see the hours of pain they suffer every day as a result of their 'normal' outings.
Well, is it____________?
Please never ask me this to my face. Let's think about this one. If I tell you about my illness that I've been researching for four years and has left me legally physically handicapped and then 30 seconds later you think of a time in your life when you were a little more tired than normal- do you really think that what you had is the same thing I have? No. No, I'm not anemic. No, I'm not diabetic. No, going on a gluten free diet doesn't help. If you've really thought about things and think you might have something that might help then that's great. But if you're not even going to take a second to process what I'm saying then ,frankly, your conclusions are more offensive than helpful.
But there have been times when you've felt better, right?
Yes and no. I mean, there are definitely days when I feel better than others. But usually when people ask me this, that's not what they're talking about. They think that for long periods of time my symptoms completely went away and then came back. It's a common case of healthy people/sick people communication errors. Even on my very best of best days, if I over do it the day can become a really bad day. (over doing on a good day would consist of running errands for over an hour, cleaning the bathroom AND kitchen in the same day etc) So you see, even on a really good day I don't function like a healthy person for long. So if someone calls one day and I tell them I'm really sick and then a few days later they call again and I tell them it's a good day- it would be easy for them to think that I got feeling totally healthy when really I'm just at a manageable stage of sick.
What exactly are your symptoms?
Mostly muscle weakness. It's a lot like that weak feeling you get when you have the flu and can't sit up for too long without getting exhausted. More symptoms come when I overdo it. I'll go over those in detail in a more medical section.
What tests have you had done?
Sooooo many. I have a binder full of them that you can look at if you like.
How can I help?
I'm always really grateful when people want to help. To be honest, the things that you typically think of when you help a sick person (making meals, bringing flowers etc) are of course appreciated (especially during my super sick times) but not always necessary. Lucky for me, Doug's a good cook. And he's fine with walking on a gross kitchen floor when I'm too sick to mop. What helps the most is the slow and steady stuff. A call every few weeks. A one line email here and there. Quite frankly, if you can just manage to remember that I'm sick you'll be doing a world more good than most people.
Most of you who know me are probably thinking- wait, you still have that? The truth is, I don't talk about being sick much. And if people ask about it, I'll downplay this as much as possible. If you think this is weird, just imagine explaining the most personal, heart wrenching trial you've ever been through. You're probably not too inclined to share all the details either.
I also hold to the fact that, while I am sick, the sickness is not me. So I got sick a while ago. I'm still the same person. I like the same things. If someone had chopped off my leg in Argentina I wouldn't call you each month just to re-inform you that yes, my leg is still gone. We wouldn't sit around and talk about my missing leg four years after the fact. Instead we'd probably just do the things that we like to do together because I'd still be me. Even without a leg. My Argentine disease isn't much different. I'd still rather talk about the things I'm interested in and do things I like doing. And trust me- just like if I woke up to see that my leg had grown back- if we ever find a cure for this I'll be sure to be yelling it from the rooftops. You won't need to rely on any rumors of that one.
When I talk about being sick people typically ask me the same questions, so I'm just going to go ahead and answer them here. I'll answer the questions with the most commonly asked first.
But I thought you got better?
I know you did. Someone out there had a whole lot of fun spreading the news that I was cured. And those of you who didn't hear that thought that since I stopped talking about it, it just went away. It never was true though... There was a point a few years ago when I went from being terrible to slightly less terrible. I think that's where the 'cured' rumor stemmed from. And the fact is, I've almost always been able to do a few hours of activity a day so you probably saw me during those hours and assumed things were fine. It's ok, you're only human. And to be honest, you should count your lucky stars that you've never been sick enough to understand the ins and outs of being chronically ill.
But you don't LOOK sick.
Sigh. I know, I know. First of all, can I just say that you should NEVER say this to people! It's actually a very emotional situation for most of us who are chronically ill. It's weird to think that there's a stage of illnesses between a fatal case of cancer and being perfectly healthy. But it turns out sick people aren't always in hospital beds and handicapped people don't always ride in a wheelchair. There's a whole network of people out there who are suffering from what we like to refer to as our 'Invisible Illness'. They are illnesses that are chronic and life changing, but that don't show themselves on the surface. Diabetes, Fibromyalgia, Chronic Fatigue, severe migraines, and arthritis are just a few. Most people who suffer from these illnesses don't LOOK sick. In fact, many of them are able to hold jobs, raise children and lead what might look like a very normal life. But it only looks normal because you're not around to see the hours of pain they suffer every day as a result of their 'normal' outings.
Well, is it____________?
Please never ask me this to my face. Let's think about this one. If I tell you about my illness that I've been researching for four years and has left me legally physically handicapped and then 30 seconds later you think of a time in your life when you were a little more tired than normal- do you really think that what you had is the same thing I have? No. No, I'm not anemic. No, I'm not diabetic. No, going on a gluten free diet doesn't help. If you've really thought about things and think you might have something that might help then that's great. But if you're not even going to take a second to process what I'm saying then ,frankly, your conclusions are more offensive than helpful.
But there have been times when you've felt better, right?
Yes and no. I mean, there are definitely days when I feel better than others. But usually when people ask me this, that's not what they're talking about. They think that for long periods of time my symptoms completely went away and then came back. It's a common case of healthy people/sick people communication errors. Even on my very best of best days, if I over do it the day can become a really bad day. (over doing on a good day would consist of running errands for over an hour, cleaning the bathroom AND kitchen in the same day etc) So you see, even on a really good day I don't function like a healthy person for long. So if someone calls one day and I tell them I'm really sick and then a few days later they call again and I tell them it's a good day- it would be easy for them to think that I got feeling totally healthy when really I'm just at a manageable stage of sick.
What exactly are your symptoms?
Mostly muscle weakness. It's a lot like that weak feeling you get when you have the flu and can't sit up for too long without getting exhausted. More symptoms come when I overdo it. I'll go over those in detail in a more medical section.
What tests have you had done?
Sooooo many. I have a binder full of them that you can look at if you like.
How can I help?
I'm always really grateful when people want to help. To be honest, the things that you typically think of when you help a sick person (making meals, bringing flowers etc) are of course appreciated (especially during my super sick times) but not always necessary. Lucky for me, Doug's a good cook. And he's fine with walking on a gross kitchen floor when I'm too sick to mop. What helps the most is the slow and steady stuff. A call every few weeks. A one line email here and there. Quite frankly, if you can just manage to remember that I'm sick you'll be doing a world more good than most people.
Our Wormy is the best Wormy of all the Wormies
I know, our little Wormy Woo has just really taken over this blog- but who could help it? {And, let's be honest, he's only reason we keep a blog anyway!}
Sorry about ALL the pictures. He is just such a cutie, I couldn't possibly decide which of these pictures was the best!
Sorry about ALL the pictures. He is just such a cutie, I couldn't possibly decide which of these pictures was the best!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Severe Chronic Fatigue, POTS, and probably a million little Argentine parasites that are really good at hiding
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: Cutting Back. On everything. I had to cut back so much in school that I finished with a portfolio that will never get me a real design job. Not that it mattered too much, because after I graduated I had to cut away all my dreams of being healthy enough to hold a real job. I’ve had to quit any extra activities I enjoy, resign from church callings, cancel plans with friends, learn to live with a dirty kitchen floor, enjoy eating off of paper plates etc etc etc.
5. Most people assume: I got better a long time ago.
6. The hardest part about mornings are: Getting out of bed. I feel like gravity is so much stronger in the mornings. It makes every part of my body ache and wish I never had to move again.
7. My favorite medical TV show is: None. I deal with being sick enough, I don’t want to involve the medical world into my spare time as well.
8. A gadget I couldn’t live without is: My laptop. If my design clients only knew the state I’ve been in while finishing so many projects…. Stuck in bed and barely able to move my fingers….
9. The hardest part about nights are: Insomnia. I usually go to bed around 10 or 11 and don’t fall asleep until somewhere between 1-4am. I’ve even had a night where it took so long that I was still awake when Doug’s alarm went off the next morning. I just got up with him.
10. Each day I take __ pills & vitamins. (No comments, please) Whew. I don’t even know…. Probably about 10 right now but we’re always trying new things and taking out old ones.
11. Regarding alternative treatments I: am willing to try anything. But nothing alternative has ever really helped. (neither has anything traditional for that matter…)
12. If I had to choose between an invisible illness or visible I would choose: VISIBLE!
13. Regarding working and career: I’m not healthy enough to hold a job- even part time. Trust me, I’ve tried. I try to do design work as much as I can from home, but right now I can’t even do that.
14. People would be surprised to know: I’m usually lying when I tell you I’m having a good day. The truth is, I’ve just gotten really good at functioning when I feel horrible. And it’s amazing what some cover-up and a thick layer of blush can do to my pale complexion. And it’s easier to tell people I’m feeling ok than to deal with the annoying “But you look so healthy!” reactions when I tell people I’m feeling sick.
15. The hardest thing to accept about my new reality has been: Learning to find joy in a life I never wanted. Growing up I dreamed of working as a designer and having kids and being the person everyone could turn to at church and doing lots of fun and exciting things with my husband. I can’t have or be any of those things right now, and I have no clue when or if they’ll ever be back in my grasp.
16. Something I never thought I could do with my illness that I did was: Graduate from college. I had no idea how hard school was until I had to learn while being in complete and constant pain.
17. The commercials about my illness: I don’t know what this one is talking about…
18. Something I really miss doing since I was diagnosed is: running more than 2 errands at a time.
19. It was really hard to have to give up: Being able to create relationships without the awkward wall of a misunderstood illness. (Nope, I can't got hiking with you... nope, not even if it's an easy one....yeah I know- so weird- I'm not in a hospital bed or wheel chair or anything and I'm STILL sick.....etc etc etc. To the point that it's just easier not to talk to anybody)
20. A new hobby I have taken up since my diagnosis is: Finding things I can do now BECAUSE I’m sick, that I wouldn’t be able to do any other way. For example, every Tuesday I have a craft day. I get to work on crafts ALL day with no interruptions. Now what healthy person can fit that into their schedule? I am seriously going to miss that when I am healthy again. I also enjoy at least an hour of scripture study every day and when I’m healthy enough I go to the temple once and sometimes multiple times in a week. I also feel completely justified to eat off of paper plates for every meal and let my house get as dirty as it wants when I’m not feeling up to scrubbing.
21. If I could have one day of feeling normal again I would: Go to Disney’s
22. My illness has taught me: So many things. I’ve learned there are two kinds of people in the world- those who have been through a life changing trial (death in the family, divorce, chronic illness etc- any trial that comes with no hope of ever ending) and those who haven’t. It seems whenever I meet someone who is really supportive it’s because they fit into that first category. I’ve also learned of the joy that comes as we accept God’s individual plan for us- even if that plan is far from what you want and the ‘greater things’ He has planned for us aren’t yet in sight.
23. Want to know a secret? One thing people say that gets under my skin is: When people just assume. They assume I’m using my grandma’s handicapped permit. (yes, I’ve actually been given a ticket for using my OWN handicapped permit. Boy was that officer in trouble when I went and explained his assumption) Or they assume that when I go in to buy compression stockings or a wheelchair it must be for someone else. They just assume I’ve gotten better (don’t you think that when I find the cure I’ve been searching 4 years to find that I’ll make a big deal of telling everyone?) or they assume that because I’m not in a hospital bed I must be feeling pretty good. I hate when people see me and say- Wow, you look like you’re feeling a lot better! It’s amazing how much people will assume without ever actually asking me a thing.
24. But I love it when people: Show that they genuinely care about how I’m doing. Even if they’re not very good at showing it- as long as it’s sincere, it’s great. I also love it when people just treat me like me and not a walking illness. (which is why I don’t talk about being sick very often)
25. My favorite motto, scripture, quote that gets me through tough times is: "Oh, Lord, I am yet strong. Give me one more mountain." -Jeffery R. Holland referencing Joshua 14:11-12
26. When someone is diagnosed I’d like to tell them: 1-people who require convincing are not worth wasting your energy on. (it sounds cruel, but it’s true) Instead, learn to live your life despite what others think and you’ll find people who are worth every last bit of your energy. 2-Give yourself time to grieve for the loss of your old life. 3-Find reasons you can be happy for your new life, things that you can do now that you could never have done when you were healthy. 4-There's nothing wrong with getting a professional counselor to help you learn how to be happy again. In fact, I'd highly suggest it.
27. Something that has surprised me about living with an illness is: How hospitals and doctors devote their effort to healthy people who get temporarily sick. There is no place for someone who can not be cured.
28. The nicest thing someone did for me when I wasn’t feeling well was: When we were dating, Doug got a book to read to me on my sick days. Our dates those nights would consist of him reading out loud and me lying on the couch- he never complained that we couldn’t do anything more exciting. And he still never does- even on my sickest days.
29. I’m involved with Invisible Illness Week because: It’s crazy how many people are sick and find no support from friends simply because their friends don’t understand.
30. The fact that you read this list makes me feel: Honestly, a little embarrassed. I don’t like talking about being sick. But I’m glad you care.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
Helping
One of the hardest things about being sick is the loneliness. It's not just the fact that I have to lie in bed all day by myself. It's how most of my friends and family don't have any clue what I'm going through. And the fact that I haven't made one good friend since I've been sick because as soon as people get close enough to understand what my life is like, they feel too awkward to stick around.
Lisa Copen is the author of many great books that center on how to deal with chronic illness. This is an excerpt from a book she wrote to healthy people who want to help support a sick friend.
I love it.
51 Ways to Encourage Chronically Ill Friends
By Lisa Copen
“A good friend is a connection to life - a tie to the past, a road to the future, the key to sanity in a totally insane world.” ~Lois Wyse
- Ask, “What events in your life are changing and how are you coping with the changes?”
- Understand that she lives in a constant state of making decisions for which there is no guarantee that she is making the right choice.
- Put meals in disposable containers and attach a note saying “This doesn’t need to be returned.”
- Add stickers to envelopes for a cheerful touch.
- Arrange for your friend’s kids to have a night with your children.
- Don’t make a person into a project.
- Ask, “Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?” It makes one feel good to know that her experience can offer someone else hope and that God still has a purpose for her life.
- Wash his car and put a little note inside for him to find later.
Remember important anniversaries, both the good and the bad. No one else will. - Ask, “Do you want company the day that you wait for the test results? I could come over for a couple of hours.”
- “No matter how little you have, you can always give some of it away.” ~Catherine Marshall
- Just listen . . . until it hurts to not say anything. And then listen some more.
- Ask her, “How do you feel God is working through-or despite-this illness in your life? I’m interested.”
- Ask, “What do you wish people understood about your illness?”
- Don’t make her feel guilty about things that she cannot do.
- Treat her to a gift of movie rentals via postal mail through a service ($7-15 a month).
- Ask, “Would you be comfortable with having your name on a prayer list, so that others can pray for you?” Don’t assume.
- Instead of saying, “I will pray for you,” say, “I’d like to pray for you right now, if that’s okay.”
- Mop the floors.
- Ask if she would be interested in writing something for the church newsletter, maybe even about the subject of living with chronic illness.
- Buy a brightly colored umbrella as a gift.
- Ask, “Do you have an errand I can run for you before coming over?”
- Ask her to do spontaneous things, like go to a concert in the park, or just for a picnic. She may be more likely to participate since she knows if it’s a good day or a bad day.
- Don’t say, “So, why aren’t you healed yet?” or “I wonder what God is trying to teach you that you just aren’t learning!”
- For a unique gift, provide brightly colored paper plates, napkins, and utensils in a gift bag with a note that says “For when you don’t feel like doing dishes.”
- Get her a pretty box to keep all of her notes of encouragement. Remind her to get it out and read things when she is feeling down.
- Be her advocate. If you are at an event and walking/seating is an issue because of her disability, ask her if she’d like you to take care of it. If she says you can, be firm but not rude. Don’t embarrass her by making accusations of discrimination or by making a scene.
- Ask, “Would you be interested in a prayer partner from our church?”
- Purchase matching coffee mugs for you and your friend, and then commit to pray for one another each morning while using them.
- Say, “While you’re in the hospital I’d be happy to take care of your pet.”
- Don’t tell her about your brother’s niece’s cousin’s best friend who tried a cure for the same illness and. . . (you know the rest).
- Find out which charity is most important to her and then give a donation in her honor.
- Ask, “What are your top three indulgences?” and then spoil her soon.
- Hold the door open for her. They are heavy!
- Don’t tease her and call her “hop along” or “slowpoke.” Comments you mean in fun can cut to the quick and destroy her spirit. Proverbs 18:14 says, “A man’s spirit sustains him in sickness, but a crushed spirit who can bear?”
- Say, “I know you must need someone to just vent to occasionally. I may not fully understand how you feel, but I’m here to listen anytime.”
- Ask your church youth group to come over and clean up the yard during seasonal changes.
- Don’t ask her, “How are you able to make it financially?” If she wants to share a burden she will.
- Ask, “What would you advise me to look for in a new doctor?”
- If your friend has a disabled parking placard and you are driving, allow her to tell you where she wants to park. If she’s feeling particularly good that day, she may not want to park in the “blue space.” Don’t be disappointed that you’ll have to walk farther.
- Don’t gossip about others. She’ll wonder what you say about her. “Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen” (Ephesians 4:29).
- Proverbs 25:11 says,
“A word aptly spoken is like apples of gold in settings of silver.” Be kind, gentle, and respectful. - Accept that her chronic illness may not go away. If she’s accepting it, don’t tell her the illness is winning and she’s giving in to it.
- Don’t say, “Let me know if there is anything I can do.” People rarely feel comfortable saying, “Yes, my laundry.” Instead pick something you are willing to do and then ask her permission. Try the coupon in back!
- Ask her to share her testimony at an event.
- Buy a magazine subscription for her on her favorite topic.
- Plant a rosebush to view from a window.
- Understand that you don’t need to know all of the details about the illness in order to be helpful. He’ll share with you what he’s comfortable with you knowing.
- Don’t ask, “Why can’t the doctors help you?” or insinuate that it must be in her head. There are millions of people who are in pain with illnesses that do not have cures.
- Avoid having gifts be “pity gifts.” Just say, “I saw these flowers and their cheerfulness reminded me of you.”
- Send tapes of church services your friend misses to her with a copy of the bulletin and a note.
- If she doesn’t have a cordless phone, get her one. Phone headsets are also nice.
Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week and the author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend, which can be found at bookstores everywhere.
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