Warning: Long Post!
I have really been praying about how to do this post. Perhaps there is someone going through the same problems as I, who will read this and be encouraged. Maybe you know someone who is going through these problems, and this post will help you understand the things they go through on a day to day basis.
Yesterday was the official start of National Invisible Chronic Illness Awareness Week. Events for this week are sponsored by Rest Ministries. I do not know much about the ministry, but mention it here for the sake of credit.
People with invisible illnesses face challenges that no one else sees. Sometimes others do not understand why they cannot do something, why they have to pace themselves when working, or why they have a Handicapped Parking tag when they seem to be walking just fine. Their ability to perform normal tasks and functions may vary on a day to day basis. There are many things they have to take into consideration each day, such as -- How much can I do without overdoing it? Am I just tired, or am I having a flare up of my condition? If I don’t push myself today, will I get too far behind? If I push myself today, will I crash tomorrow and be even farther behind? Is what I am experiencing now a new symptom of my condition, or am I coming down with something?
Even though people with chronic invisible illnesses face these and many other things, they are normal people. Many do not mind being asked about their illness, but they also have the same likes and feelings and do the same things as other individuals. Camping, riding a motorbike, going to work, volunteering, being a stay at home mom, homemaking, and so on, are all part of their everyday lives.
Last week I mentioned that I would share a bit about my own illness and a list of things about my illness that you may not know. Perhaps you might like to take this list and share some things about your illness, or just some things about yourself. Share them as a comment, or even on your blog. As Allison mentioned in her comment, “It would be really neat if everyone got on here and gave their stories and then we could pray for each other!” That would indeed be a blessing.
One of the invisible illnesses I deal with is migraines. These have been a part of my life since I was about eight years old. They are usually classic type migraines, complete with visual auras and other accompanying symptoms. However, in my case, these often come on in the afternoon and do not become severe until night time, so I usually just sleep them off. For many people, however, migraines are much worse and are very debilitating. Constant, severe headaches can be very draining.
There still has not been a definite diagnosis for my other invisible illness, but one of the main suspicions is rheumatoid arthritis. There seems to be a general consensus that I have arthritis, but not an agreement as to which kind it is. Rheumatoid arthritis is an autoimmune disease and affects much more than just the muscles and joints. An informative article about the disease can be found on Wikipedia . It is associated with dry eyes and dry mouth (which I’ve had for years). Some of the “constitutional” symptoms I experience include intermittent low-grade fever, fatigue, weakness, and morning stiffness. I also make a great human barometer. A flare up of joint and muscle pain almost always means it’s going to rain. Some neurological symptoms I experience are loss of sensation and tingling in hands, feet, and face. They sometimes feel as if they have been injected with local anesthetic and are “waking up.” This can be irritating, but it can also cause problems. I once had a splinter in my foot and didn’t even know it.
Someone has worked up a list of “30 Things About My Invisible Illness You May Not Know.” So I thought I’d share some of them with you. I did cut out a couple of the things on the list such as, “My favorite medical TV show is…” or “The commercials about my illness…” Anyway, here it is. You may find out something about me you didn’t know.
Things About My Invisible Illness You May Not Know
1. The illness(es) I live with is (are):
Migraines, suspected rheumatoid arthritis.
2. I was diagnosed with it in the year:
Was told by an eye doctor years ago that I have ocular migraines
No official diagnosis for the rheumatoid arthritis as tests so far have come back normal. This is not unusual, however, in beginning stages.
3. But I had symptoms (of the rheumatoid arthritis) since:
Have had some symptoms for many years. Had joint pain as a child and was told I had “growing pains.” But the major symptoms of the disease did not appear until November 2009.
4. The biggest adjustment I’ve had to make is:
Finding other ways to do things. I am right handed, but my right shoulder is one of my worst joints. However, due to several injuries, my left hand has limited sensation and some weakness. I’ve had to compensate in many areas – getting in and out of the car, getting in and out of the tub, even getting in and out of bed.
5. Most people assume:
Most people are very kind, but some do not seem to understand how much my illness limits my ability to do some things.
6. The hardest part about mornings are:
7. A gadget I couldn’t live without is:
My Bible, soothing music, computer or something to write on
8. The hardest part about nights are:
Getting some sleep. Sometimes I sleep several hours at a time but do not really relax.
9. Each day I take __ pills & vitamins. (No comments, please)
At least 8 – 10 different supplements on a daily basis. Some of the vitamin and food based supplements could be combined, but I have to get them separately because of food allergies and sensitivities.
10. Regarding alternative treatments I:
Alternative treatments are wonderful. That is all I use, except some Tylenol now and then. My rheumatologist prescribed Lyrica, but I couldn’t take it due to it having corn starch as a filler. Allergy to corn eliminates most medications and many supplements for me.
11. If I had to choose between an invisible illness or visible I would choose:
Neither. I must be content with what the Lord has chosen for me.
12. Regarding working and career:
Cannot work a regular job. Computer work does generate a small income.
13. People would be surprised to know:
14. The hardest thing to accept about my new reality has been:
Fatigue and weakness. Lack of energy really gets to me.
15. Something I never thought I could do with my illness that I did was:
Go hiking. I got up the hill OK but had to come back down backwards!
16. Something I really miss doing since I was diagnosed is:
Taking a bath. I usually take a shower because it is too hard to get out of the tub.
17. It was really hard to have to give up:
Playing the piano. I play it sometimes at home but am no longer able to do so at church.
18. A new hobby I have taken up since my diagnosis is:
Small sewing projects, especially making recycled clothes
19. If I could have one day of feeling normal again I would:
Maybe go white water rafting. I did that once 22 years ago, and it was really fun! Then at night I would sleep - a long, restful sleep.
20. My illness has taught me:
To be content; to count my blessings; to think about others
21. Want to know a secret? One thing people say that gets under my skin is:
Most people are kind, but it does make it hard when someone expects me to do something I really am not able to do.
22. But I love it when people:
Ask me how I’m doing; smile at me; say something to make me laugh
23. My favorite motto, scripture, quote that gets me through tough times is:
“The eternal God is thy refuge, and underneath are the everlasting arms.” (Deuteronomy 33:27)
24. When someone is diagnosed I’d like to tell them:
Perhaps the same advice that really helped me. Don't try to get back to the person you were before, and don't feel guilty if you cannot do all the things you used to do. You cannot live in the past, and you will never go back to it. Your life is different now, and you have new blessings. Take joy in those new blessings. Learn how to make new goals, and be excited about each one you meet. This gave me a whole new outlook and helped me to stop fighting to get back to the "old me."
25. Something that has surprised me about living with an illness is:
How many other people are hurting too. I have made wonderful new friends.
26. The nicest thing someone did for me when I wasn’t feeling well was:
Pray for me; make me laugh; get my attention off how I was feeling
27. I’m involved with Invisible Illness Week because:
It may help someone understand how much others around them are hurting and need a smile or a kind word.
28. The fact that you read this list makes me feel:
That you care.
I pray this has been a blessing to you and that it will help you as you deal with your own difficulties or as you help a friend who faces challenges every day because of a chronic illness.
Later in the week I would like to make one more post about Invisible Chronic Illness Awareness Week. The plan is to make it a fun post. Just to whet your curiosity, it will be about ribbons. See you in a couple of days! In the meantime, may God keep you in His loving care.