Saturday, September 12, 2009

30 Things About Teresa's Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia, Ankylosing Spondylosis and Migraine headaches. Fibromyalgia is probably the worst of the 3 illnesses and really my migraines kind of go along with the fibromyalgia.
2. I was diagnosed with it in the year: Fibromyalgia in 1999, AS in 2002 and Migraines in 1990.
3. But I had symptoms since: I was a little girl. I've had the achy feelings as early as age 9 or 10 , especially during the cold and/or rainy seasons. However, it wasn't until I was involved in an auto accident around 1997 that my illness became full blown. I was rear-ended by an 18 wheeler tanker truck while driving on the interstate.
4. The biggest adjustment I’ve had to make is: accepting that I am a disabled person. For so many years I was the "go to" person in my family & friends lives. When people needed something done, I was the one asked. And I loved being that person. Now I can't be counted on for much of anything. I am physically unable to do even the simplest of tasks. In fact, I require help with the day to day things of life. Sometimes even to the extent of personal hygiene, etc...
5. Most people assume: I am healthy because I do not show outward signs of being sick. They assume that they know everything about me already, but my life is not an open book. I try to hide my illness and disability from people, especially because I am still so young. People look at me with loathing when they see me riding on a scooter in Walmart or the grocery store. They assume I'm faking or lazy because I LOOK healthy.
6. The hardest part about mornings are: getting out of bed. Literally! Between the pain, stiffness, headaches & dizziness it is very difficult to climb out of bed every morning. I can barely walk or even bear any weight when I first get up. I can't stand up straight because of the stiffness in my back & hips. And I'm usually so dizzy when I first get up that I struggle to stay upright.
7. My favorite medical TV show is: House. I love how they start with an unknown illness, describe the symptoms and eventually figure out the diagnosis and treatment. I secretly wish I could find a REAL Dr. House who could figure out exactly what's wrong with me and fix it.
8. A gadget I couldn’t live without is: my electric blanket. The fibromyalgia causes so much pain and with fibro sometimes the only thing that relieves that pain is heat. Since the pain covers my entire body the only way to get heat to that entire area is by way of an electric blanket and mattress pad. It sandwiches me in warmth and helps me sleep. The pain is so bad that even pain medicine cannot stop it, but the warmth can really make an impact. I use it year round, not just in the winter. I simply couldn't live without it. I recently had to do without it for about a week because my old blanket died. It was one of the longest weeks of my life!
9. The hardest part about nights are: going to sleep and staying asleep. I have to use sleeping pills just to go to sleep, as well as pain medicine, anxiety meds, etc... Even with all of this, I still wake up an hour or two after I fall asleep and many times I simply cannot go back to sleep. Fibromyalgia causes sleep disturbances and the less valuable sleep that I get, the more pain I will be in.
10. Each day I take 9 different pills & 1 vitamin.
They are:
Hyzaar, ,Toprol, Prilosec, Prozac, Klonopin, Abilify, Baclofen, Halcion, Oxycodone & Emergen-C. I also take Imitrex and Phenergan on an as needed basis for migraines.
11. Regarding alternative treatments I: LOVE IT! Of course I haven't tried every method, but I recommend trying anything reasonable once. I have tried massage therapy, physical therapy, aqua therapy, accupuncture and chiropractic adjustments all with positive effects. They did not cure me, but they did provide pain relief, better range of motion, etc... The only reason I do not utilize these treatments on a regular basis is because they are not covered by Medicare and that is the only insurance that I have at the moment.
12. If I had to choose between an invisible illness or visible I would choose: This is a tough question! My first reaction would be to say visible illness because then people wouldn't assume that I'm faking, they would be able to SEE that I'm sick. But then that would probably mean that I was even more disabled than I already am now. So I guess all in all I would prefer to leave things the way the are now.
13. Regarding working and career: I really miss it! At least I miss the ability to do it. I was a Workers' Compensation Insurance Adjuster. I loved my job and loved helping people in need. I often feel like I am less of a human being now that I'm disabled, even though I KNOW this is not true. I just wish I could be a help to people again.
14. People would be surprised to know: that I am afraid of pain. I am terrified to think I may feel like this the rest of my life! And I'm very depressed that I feel like this most of the time.
15. The hardest thing to accept about my new reality has been: the fact that I need others to help me now, instead of me helping others. I always prided myself on being a help and blessing to other people on a regular basis, but now I feel as though I am a burden to people.
16. Something I never thought I could do with my illness that I did was: raise a child~ I was already on disability when I found out I was pregnant with my only child. I was every bit as sick as I am now. I didn't think there was any way that I would be able to take care of a baby, let alone a toddler and then a school aged child. But GOD has given me grace and strength and determination to raise my child the very best that I can. I am by no mean the perfect mother. I wish that things were different, that I wasn't sick, that I could do more things with and for my child, but I'm proud of the things that we've accomplished together and most of all my baby knows that I love her with all my heart. She will be 6 yrs old in January 2010.
17. The commercials about my illness: make me sick!!! They make it look like it's all in your head and if you just take a pill your whole life will be great. It isn't like that at all! It's not in my head, although it does effect it. And I've tried most of the new (and old) drugs out there for fibromyalgia without much success. Most times the side effects have proven to be worse than the illness itself!
18. Something I really miss doing since I was diagnosed is: traveling frequently, being active in church/choir and helping other people. I love to travel......on vacation or just day trips, but this doesn't happen much any more because of the pain it causes me. One 2 hour trip in the car can put me in bed for 3 days because of the pain and stiffness and fatigue. I used to be involved in EVERYTHING at church and I loved it, but now I do good to make it to church on a Sunday morning (or evening) and actually sit through the entire service. It actually causes me great pain to have to sit in one spot for any length of time. And the music and sometimes even the preaching causes me migraines oftimes.
19. It was really hard to have to give up: my independence. I hate having to rely on other people for the most mundane everyday things of life. I can no longer buy groceries by myself. In fact, I rarely drive by myself because of the fibro fog robbing me of a clear, focused mind. My reflexes are too slow now to drive. I used to love to play the piano, and still do to an extent, but now I often forget how to play or sing a song right in the middle of the performance. I will completely forget the tune of the song, with the sheet music sitting right in front of me! This is really aggravating and depressing.
20. A new hobby I have taken up since my diagnosis is: blogging. It helps for me to be able to put into words some of the frustration that comes with this illness. I have always loved writing and blogging makes me still feel somewhat useful.
21. If I could have one day of feeling normal again I would: play in the park with my daughter all day! I really miss not being able to play with my little girl like she wants me to. I'm just physically unable to do the things she likes. She is somewhat of a tomboy and likes to play rough, but my body is too sensitive to pain to do much. I can't even sit in the floor and color with her because of the pain in my legs/back. If I had just one NORMAL day, I'd spend it all on her doing whatever she wanted to do.
22. My illness has taught me: that not everything is as it seems. My illness is "invisible". People can't see that I'm sick just by looking at me, so many people assume that I'm not sick at all. I remember being a person that went on 1st impressions. This illness has taught me that things may be totally different than how they seem and people may be also. Just because someone seems unfriendly or rude doesn't mean that they are. They might just be having a bad day or have something very important on their mind. Just because a person LOOKS fine, doesn't mean that they are.
23. Want to know a secret? One thing people say that gets under my skin is: "Well, you LOOK good!!!" It makes me feel like they're calling me a liar or something. They're probably just trying to be nice or compliment me, but they come off sounding as if they just don't believe what I'm telling them about my illness or how I feel that day.
24. But I love it when people: take the time to find out how I'm doing. After being sick this long, I can tell when someone is just being polite asking, "How are you today?" and really caring asking, "How are you feeling today?" It isn't what is said, but how it's said. I love it when people actually care about me. One of the things that makes me the happiest in the world is to get a card or letter in the mail saying "Feel better" , "Get well", "I was thinking of you" or " I'm praying for you."
25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 103:1-2, "Bless the Lord, O my soul: and all that is within me, bless his holy name. Bless the Lord, O my soul, and forget not all his benefits:" I especially like the part, because it reminds me that I could be much worse off than I am now. I could be even sicker than I already am. God has blessed me with good health compared to a lot of people and no matter what happens in my life, GOD is always there with me, giving me strength to keep going.
MY 2nd favorite quote I just came across a few weeks ago, "It's OK not to be OK!" What more can I say to this?
26. When someone is diagnosed I’d like to tell them: that it will be ok, they can make it through this. I like to share my faith in Jesus Christ because HE is what gets me through every single day. HE helps me take one day at a time.
27. Something that has surprised me about living with an illness is: that things don't really get better. It's your attitude that has to change, because your illness probably will not.
28. The nicest thing someone did for me when I wasn’t feeling well was: took care of my newborn child while I went to the emergency room with a migraine and kept taking care of my baby until I was able to take care of her myself and of myself.
29. I’m involved with Invisible Illness Week because: I believe it's important that people know what we go through. Many people would care more if they understood more and they can't understand if we don't tell them.
30. The fact that you read this list makes me feel: honored and blessed to know someone who cares.


Trisha Pearson said...

Great job on this Teresa! I think it really gives a glimpse into what it's like living with an invisible illness.

I'm so sorry people give you dirty looks for riding those scooter things. It just goes to show that spreading awareness of invisible illnesses is really needed.

Princess Time Toys said...

I'm so sorry for your struggles. The one thing that worried me is your electric blanket use. My hubby is a fire fighter and he won't allow me to have one in the house - yes, they're that dangerous. Please tell me you have a smoke detector in your bedroom - if not, please buy one today.



Teresa said...

Fire safety is practiced in my home. Thanks for your concerns.

Tricia said...

I love your candidness. I can relate to almost always having fibro. I have had symptoms since 16 but not diagnosed unitl about 4 months ago (16 years). Fantastic post.