30 Things You May Not Know About My Invisible Illness
Posted Sep 03 2012 10:00am
I have been getting ready for Invisible Illness Awareness Week, September 10-16, 2012. Just a reminder that is it Rest Ministries that sponsors this event, which includes a virtual conference, as well as blogging for the cause, doing the meme (below), and this year we are uploading images that show our visible hope!
So, it’s been a few years since I filled out the meme and thought it was time for an update. I answered the whole meme (below) and then went over and looked at the one from 2009. Surprisingly, not a lot of my answers changed. Though my favorite gadget in 2009 was a jar opener, and in 2012 it is my ipad. Now, if the ipad just had a jar opener, right?
So, I share with you my heart and encourage you to go fill out the meme too. (You can find it here, 30 Things You May Not Know About My Invisible Illness Meme. http://invisibleillnessweek.com/submit-article/30-things-meme/) Feel free to post it on your blog, in the Sunroom as a blog, wherever you have a little home on the internet where you can share, and then link it up so we can come and read it.
1. The illness I live with is:
rheumatoid arthritis and fibromyalgia
2. I was diagnosed with it in the year:
RA in 1993, FM in 1994. I was 24.
3. But I had symptoms since:
Early 1993, it progressed very quickly.
4. The biggest adjustment I’ve had to make is:
Everything! RA changed my entire life. I used to pack my schedule as full as possible and loved to be busy. Now instead of measuring life by time available, it is by energy available and the pain level.
5. Most people assume:
That rheumatoid arthritis is an inconvenience in life, but if I take the medications I will hardly even notice it. They don’t realize that the medications work just well enough that I can function. I can get dressed (some days even that is interesting!), I can drive to the post office, I can have a playdate for my son. But some mornings I know I can’t do it that day, and I never know in advance. My doctor has said that about 70-80 percent of my pain is from deformities, so even if I did get the illness under some control I wouldn’t notice much of a decrease in my pain level. That is sort of frustrating.
6. The hardest part about mornings are:
Everything! From moving out of bed, to putting weight on my swollen and deformed feet, to trying to hold a coffee cup when my hands feel more like tender claws.
7. My favorite medical TV show is:
I don’t watch much TV. Occasionally I will watch a few minutes of Dr. Oz (for a medical show)
8. A gadget I couldn’t live without is:
My ipad. It keeps me connected to the world anywhere, when I have the energy I can write, when I am sick I can watch Netflix. I also got to the point where holding a newspaper, book, or magazine was impossible, clipping coupons were hard. I love being able to do all this new on the ipad.
9. The hardest part about nights are:
Getting comfortable. I have a Cuddle Ewe mattress topper (a lifesaver!) and a very specific collection of pillows for my neck, shoulders, hands, etc. I use pain patches, heating pads, ice bags, whatever I can get to try to help me sleep. My husband recently started using a C-PAP machine so now his snoring is no longer keeping me awake. That has been a huge blessing. For the past fifteen years, I would wake up every few minutes–literally– to kick him before; Or I would stay up till 3 or 4 and then make him to go the couch (I am in real pain if I try to sleep on the couch, but I knew he didn’t sleep that well on it either.)
10. Each day I take __ pills & vitamins. (No comments, please)
I was curious so just went and counted. . . 34! But this includes multiple vitamins, pro-biotics, calcium, etc. And then I also do injections and infusions.
11. Regarding alternative treatments I:
Think it is a personal decision for each person. I am happy with my rheumatologist who is open to trying anything natural in addition to the medications I am on. I have used herbs for high blood pressure for example, under his guidance. I also grow weary of people who think if I am not doing only alternative treatments I am a fool. If I had not taken the medications I have over the years, I would have been in a wheelchair many years ago. I don’t think anyone should have to defend her choices about treatments.
12. If I had to choose between an invisible illness or visible I would choose:
Invisible. Now that the RA has deformed my hands, feet, prednisone has added weight, etc. it is becoming more visible. I think I preferred it better when it was invisible.
13. Regarding working and career:
I had hoped for more, but am just where God wants me to be at this time. I learn to accept this each day–to do what I am able. I admire other women who do so much more and I used to want to be like them, but I just won’t be. I need to rest in the fact that God has given me the abilities and energy to do the tasks He has set before me and try not to grieve the stuff I want to do, but just can’t find the energy.
14. People would be surprised to know:
How much pain I am in and how many parts of my body do not work all that well. I keep very busy and get a lot done, but I have tendons missing in my shoulders, feet that I cannot put weight on except for my heel, I type with 3 fingers and 2 thumbs, and every second I have multiple body parts that are throbbing. Many people assume because I do what I do, I must not be in that much pain. I am blessed I am not worse, but after 19 years of RA, I have never experienced a day of remission and every day I want to go to bed and stay there, but I never do. My brain is wired to keep on keeping on.
15. The hardest thing to accept about my new reality has been:
Having it touch on every season of life. From adopting our son as a baby, to raising him, to being a wife, to taking care of my home, and having a ministry. No matter how wonderful things may be, illness always tries to ruin it. Illness always has bad timing with infections on vacation, etc. I grow weary of the daily-ness of it! And just knowing that overall, my body will continue to break down can be discouraging. I can’t fathom recovery time of surgeries when I am in my sixties when I can barely deal with it in my forties. I don’t assume the worst, but I also don’t assume I will have a long life. So I try to appreciate each moment and make most my conversations with my son really count.
16. Something I never thought I could do with my illness that I did was:
Just recently, get on a recumbent bike. 19 years of my knees falling apart (calcified blood clots, bones chipping off, a cyst, etc.) I never thought I could move my leg that way again, but some injections and physical therapy have helped tremendously and I can do 5 minutes now.
17. The commercials about my illness:
Are frustrating. They add to the myth that RA can be all better with a little shot now and then. There is also too much emphasis on celebrities taking the medications and having miraculous results instantly. And the actors they hire to ride bikes along the shoreline or throw a football on the beach just annoy me. But you have to have a little fun with it. Among RA patients there is a funny saying of “G’night, Phil” instead of “G’night, John-Boy” referring to Phil Nicolson–as in “go to bed!” (If you are too young to remember “The Waltons” that joke may slip by you.)
18. Something I really miss doing since I was diagnosed is:
Just being able to move my body. Jump, run, do a cart wheel, walk a flight of stairs in 30 seconds, play the piano.
19. It was really hard to have to give up:
Walking longer distances, like going to Sea World and not having to use a wheelchair, etc. I like my independence. I also wish I could be more dependable. When I am invited to speak, for instance, at a conference six months in advance, I have no idea if I will be in a decent season or barely able to get out of bed. I usually pray about it and make a choice and then, if I committed to it, I pray for adrenalin and strength!
20. A new hobby I have taken up since my diagnosis is:
Decorating, creating. I have always done this, but the hands don’t work very well now. But I am a pinterest addict and I love going to the thrift stores and seeing what I can find to spray paint. I also have started planting loads of succulents. Finally a plant I can not water for a month and it still thrives (I love plants, but don’t especially like playing in dirt or watering, so growing things can be a bit of a challenge.)
21. If I could have one day of feeling normal again I would:
Go to the beach, walk over the sand with ease, take off my shoes and run, and then plop down on a blanket. I can’t walk in sand anymore or sit on the ground. Lay on the sand and listen to the ocean tide. It’s amazing how those little things are never appreciated until they are gone.
22. My illness has taught me:
Life is short. . . and precious. I need to do my best to cherish each moment because a simple infection or stroke could take so much away so quickly. I also have learned that God can provide great joy in the middle of trials. It is not “happiness” (and sometimes I miss the “happy feeling”) but it is still joy. It’s appreciation. It’s being grateful that God is in charge of my life–and not me!
23. Want to know a secret? One thing people say that gets under my skin is:
When people say, “I know exactly how you feel!” and then share how they have a sore toe, or they just had an ingrown fingernail.
24. But I love it when people:
. . . say, “so tell me about your ministry. What made you decide to start something for people with chronic illness? Isn’t that depressing?” Oh, how I love to tell them how God works out the details for our lives and how amazing and inspiring those with chronic illness can be.
25. My favorite motto, scripture, quote that gets me through tough times is:
My life scripture is this one: Psalm 119:50 “My comfort in my suffering is this: Your promise preserves my life.” And I have a lot of favorite sayings, but I love one, “Be the kind of woman that when her feet hit the floor the devil says, ‘Oh, no! She is up!’” I want to be that woman.
26. When someone is diagnosed I’d like to tell them:
It will be hard, but emotionally, it will get better. Grieve your losses, but also make new plans, discover new dreams. Don’t be afraid to find someone to talk to–even a professional counselor. You shouldn’t have to do this on your own. Read just enough about your disease online to know a few symptoms to be aware of, but know when to stop reading and focus on a hobby or something fun. Don’t get obsessed with all the things that might happen to you. And lastly, feelings of being angry at God are normal, but turn to Him and talk it out, rather than avoiding Him and separating yourself from Him. Illness is hard enough to “do.” Having God on your side will make it a little bit easier.
27. Something that has surprised me about living with an illness is:
How well the body can work when so much of it is completely confused and messed up inside.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Brought me a giant chai tea from Starbucks on a dark, stormy day–just because.
29. I’m involved with Invisible Illness Week because:
I think it’s vital people know they are not alone in their physical and emotional pain. And that I believe people want to help, but don’t know how. Illness touches most lives eventually. Although someone may seem disinterested in learning how to reach out to one with a chronic illness or cancer, the day will come when it impacts his or her family, and they will want to know more.
30. The fact that you read this list makes me feel:
Honored. Grateful. Hopeful! Thank you for taking the time to get to know the “real me.”