30 Things You May Not Know About My Invisible Illness

This is a meme from Rest Ministries for Invisible Illness Week which is coming up in September.  You can go here to read about other people who live with chronic, invisible illnesses, and also get support if YOU have an invisible illness.

1. The[main] illness I live with is:  Myasthenia Gravis
2. I was diagnosed with it in the year:  2003
3. But I had symptoms since:   1995
4. The biggest adjustment I’ve had to make is:  depending on other people for SO much.  I HATE not being independent, and it's really tough to lose that.
5. Most people assume:  I've just lazy because I'm overweight, and if I lost weight I would be healthy.
6. The hardest part about mornings are:  If I have to go anywhere.  It takes me FOREVER to get ready.  I have to do my nebulizer for my trach, clean the trach, (have coffee first, of course!) pack my suction machine, and of course do hair and make-up.  It's usually a 2 hour process. Ug.
7. My favorite medical TV show is:   House.  But it's over. Boo-hoo!
8. A gadget I couldn’t live without is:  My computer!!!!
9. The hardest part about nights are:  Sleeping.  I have a vent now, so I can FINALLY sleep on my back again (still propped up and on a wedge).  But because I don't have a cuffed trach, I have to wear a band around my neck that's not very comfortable.  Otherwise, if I sleep without the vent, I have to sleep on my sides, and I have arthritis in my hips, so it's usually painful.
10. Each day I take FORTY-THREE (43)  pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:  don't have much to say.  I've tried what I've tried and nothing has helped, unless you consider going to the chiropractor "alternative."
12. If I had to choose between an invisible illness or visible I would choose:  Visible.  I'm sick of being judged.  I don't want pity either, but people see me, and because I have my hair not a total mess and I have make-up on, I must be fine.
13. Regarding working and career:  I had to quit the job I loved more than any other job I've ever had because I couldn't speak clearly on the phone, and no one could understand me.  I also wasn't sleeping, and I couldn't hold up head up. I had to prop it up with my chin on my hand, elbow on the table or counter.  I tried going back to work for 12 hours a week (different place), then 8, then 4. Couldn't do it.
14. People would be surprised to know:  how much crap I have to take with me if I go somewhere overnight. Whether I'm going for one night or one month, it's basically the same.
15. The hardest thing to accept about my new reality has been:  Not being able to be spontaneous, to just jump in the car and run to the store, or just grab a toothbrush and change of clothes and go somewhere overnight.  I feel isolated and imprisoned.
16. Something I never thought I could do with my illness that I did was:  Have my beautiful boy!!!
17. The commercials about my illness:  don't exist
18. Something I really miss doing since I was diagnosed is:  Singing.  I miss it every. single. day.
19. It was really hard to have to give up:  My job.
20. A new hobby I have taken up since my diagnosis is: making jewelry.
21. If I could have one day of feeling normal again I would:  get in the car and just GO.  Go shopping, go to a movie (because I wouldn't have to worry about germs), sing my fool head off, go swimming (can't with the trach)....I'd be up 24 hours just being me and doing things I love.
22. My illness has taught me:  Who my true friends are.
23. Want to know a secret? One thing people say that gets under my skin is:  "You look great!"
24. But I love it when people:  Ask me how I'm doing, and REALLY want to know the truth.
25. My favorite motto, scripture, quote that gets me through tough times is: "My flesh and my heart fail; But God is the strength of my heart and my portion forever." Psalm 73:26
26. When someone is diagnosed I’d like to tell them:  It's not a death sentence.  It WILL change your life, but you can still have a GOOD life.  Just a different one.
27. Something that has surprised me about living with an illness is:  How isolating it is.
28. The nicest thing someone did for me when I wasn’t feeling well was:  Came over and cleaned my house, AND brought several meals (thanks Karen and Kerry!)
29. I’m involved with Invisible Illness Week because:  I want people to UNDERSTAND invisible illness, the stigma, the isolation, and the emotional toil having a chronic illness takes on me and my family.
30. The fact that you read this list makes me feel: Like I matter.

Devotion: When You Cannot Meet Everyone’s Expectations of You

This wonderful article was written by Karlton Douglas. It was posted on the Rest Ministries website (www.restministires.com) and is used with the author's permission.

 About the Author:  Karlton lives in Ohio with his lovely wife. Affliction has led to many failed expectations, but the Lord delivers him from them all.

“When she saw her hope unfulfilled, her expectation gone, she took another of her cubs and made him a strong lion.” (Ezekiel 19:5)

 

In the expectations game everyone loses when it comes to living with an illness. We can become discouraged and depressed when we find our hopes dashed, when we have a few “good days” and expect them to last, only to be knocked flat again by affliction a short time later.

Expectations can create all sorts of problems between spouses and friends and family. We say we will do something, or make plans ahead of time to go to some event, only to have our hopes dashed and the injury multiplied by disappointing those close to us. And the situation is not improved by those who have little understanding or willingness to accept such disappointment.

We cannot control the reactions of others. If grown people act like immature children because the stars do not always align perfectly for them, there is little we can do about it. If people have short memories, forgetting the good days God has blessed them with, and are only willing to focus on disappointments, we can’t make them broaden their vision to see the entire picture, one with blessings and disappointments–it’s called life.

The rain often follows sunny days, the seasons of life and the seasons of our illness change. It is wonderful to see the sun shining after so many rainy days, and how wonderful it is when the Lord blesses us with improvements in our circumstances after a difficult period. But though we may try to see and accept these situations philosophically, others may ignore the good things and only focus on the half-empty glass in front of them.

It can be painful when friends and family turn away from us because of our afflictions. It is astounding that when we need friends and family the most they can shun us, react with anger, resentment, childishness, just as we are already under the pressure of flaring illness and pain. I think this may be the worst thing about illness, worse than the pain and suffering of the illness itself.

One angry person is “mad.” Two angry people is “madness.”

I have often found that a very challenging part of my illness is not to return anger for anger. When my illness crushes expectations in others, and they react with anger, it can be a herculean task not to lash right back with my own anger and frustration. After all, I not only have the worsening illness to deal with and its disappointment, but also a “two-year-old” adult who is taking their anger out on me on top of everything else. I suspect I’m not alone in facing the madness of disappointed expectations.

I have learned over the years to take my frustrations and disappointments to God. Occasionally it may help to discuss how I’m feeling with others, but when the others are part of my frustration, it can very much be like reasoning with two-year-olds. Some people, despite their age, are not very mature, and you cannot reason with such people. The best you can do is pray that the Lord will help these people to wise up, grow up, and that God will give you the strength and patience to deal with such people as best you can.

It is very sad that on top of the weight of affliction and illness the afflicted must also deal with unmet expectations of others. Sometimes we must face our own frustrations over the bad turn of circumstances, but by far the hardest thing is to deal with the frustrations others thrust at us because we do not meet their unreasonable expectations. Sometimes I almost feel that I should wear the following sign:

I am someone living with an illness.
I will, to the best of my ability, try to live up to your expectations, but sometimes I will not meet them.
Because, as the first line says: I am someone living with an illness.

Prayer: Dear Lord, frustrations abound in our lives because of afflictions, and disappointment, especially coming from others, is very hard to bear. Help us, Lord, to be patient in affliction. Amen.

Practical Ways to Help The Chronically Ill

Being chronically ill, one thing I hear all the time is: "If I can do anything, please let me know." I know people really do want to help, but they're not always sure how. And on my end, it is VERY difficult to ask for help, let alone say, "Oh, yes, by the way, could you scrub my toilet?"

Lisa Copen, founder of Rest Ministries, has written an indispensable book called "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend." You may have a chronically ill friend, or maybe there is someone in your church or neighborhood who is chronically ill that you may not know very well, but would like to help. Here are some ideas:

* Send the person a card letting them know you're thinking of them and praying them. {Speaking from experience, mail time is quite exciting when you hardly ever get out.}

* Arrange to take her children for a day, evening, or whatever.

* Just listen....until it hurts to not say anything. And then listen some more.

* Instead of saying, "I'll pray for you," say, "I'd like to pray for you right now if that's okay."

* Mop his floors.

* Call before you visit, and ask if she has any errands you could do for her while you are on the way over.

* Offer to help out with pets while he is in the hospital.

* Don't tease her and call her "hop along" or "slowpoke" even light-heartedly, {unless they do it first}. Comments you mean in fun can cut to the quick and destroy her spirit.

* Don't say, "Let me know if there's 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. {There is a coupon J.O.Y. (Just Offering You) coupon in the back of the book on which you can write your ideas.}

* Say, "I'll be bringing you dinner a night next week. Would Monday or Tuesday work better?"

* Put a freezable dinner in a disposable or reusable container with a note saying it won't be necessary to return.

I will be posting more of these in the near future. You can purchase this book for yourself or your church on Lisa's website, www.restministries.com.

I am also working on a packet of information, which will include a copy of this book, that I will be sending to some local churches. If you are interested in obtaining one for YOUR church, please leave a comment with your email address, or email me at kerrisweeris@gmail.com. They are not ready yet, but I can start taking "orders".

Hope everyone has a safe and healthy week!