Tuesday, September 13, 2011

In Honor of National Chronic Invisible Illness Week: 30 Things Meme

1. The illnesses I live with are Fibromyalgia/Chronic Fatigue Syndrome and Mononucleosis and Hypoglycemia

2. I was diagnosed with it in the year: 2004

3. But I had symptoms since: 1998

4. The biggest adjustment I’ve had to make is not being able to be as "involved" in helping other people or being at Church as I'd like.

5. Most people assume that I will eventually get better.

6. The hardest part about mornings are waking up in feeling very sluggish with no "get up and go" and having to eat food I don't care for very much in order to take care of my health. 

7. My favorite medical TV shows are the one's that are love ER or Trauma shows.  I used to love Dr. House until he started fornicating with his boss and that ruined the show and I stopped watching it.

8. A gadget I couldn’t live without is my comfy chair!

9. The hardest part about nights is trying to get to sleep and then trying to stay asleep. 

10. Each day I take about 5 pills & vitamins. That's does not count the muscle relaxers and pain meds I might take occasionally.  Usually I try to tough it out. 

11. Regarding alternative treatments I get sick of people recommeding them to me.  I'm on the protocol I'm on and that's what I'm doing.

12. If I had to choose between an invisible illness or visible I would choose WELLNESS! I would never choose to be sick.

13. Regarding working and career, I've never had a career outside the home.  I have been trying to build a sewing business on the side, but will  be slowing that down due to my illness...it's just too much. 

14. People would be surprised to know that even on "good days", if I focus in, I can find pain in more than one part of my body.  It's always there.
15. The hardest thing to accept about my new reality has been… that I have limited energy and that I can't do the things I wish I could do.  I always have to "pay later" for exceptional energy expenditures, so my life feels like it's being lived inside an itty bitty box. 

16. Something I never thought I could do with my illness that I did was go on a mini-spelunking tour with some American Heritage Girls

17. The commercials about my illness are stupid and I want to throw a brick at the TV. 

18. Something I really miss doing since I was diagnosed is… 1 being more physically active and actually getting FIT, the fibro is like a barrier to that.  2-and spending time with friends and family, I'm just too tired to do that now.

19. It was really hard to have to give up our dog, Java.  I could not walk him.

20. A new hobby I have taken up since my diagnosis ...well, I've developed my sewing skills even further.  I have also developed my knitting skills, but sometimes my arms ache too much to knit.

21. If I could have one day of feeling normal again I would do normal stuff.

22. My illness has taught me to have a longing for heaven like nothing else in life could have taught me.
23. Want to know a secret? One thing people say that gets under my skin is "are you feeling better yet?"  ...because I'm not going to feel better.  And if I AM feeling better, I know there's going to be a BAD DAY right on the heels of the "good day" if I do too much on the good day. 

24. But I love it when people listen, spend time with me.

25. My favorite quote that gets me through tough times is Lord Jesus Christ, Have Mercy on Me, a Sinner.

26. When someone is diagnosed I’d like to tell them about the Guaifenesin protocol for Fibromyalgia
27. Something that has surprised me about living with an illness is how much inner strength I DO have to just keep plugging along through life.

28. The nicest thing someone did for me when I wasn’t feeling well was anything my husband does, day in and day out he picks up my slack, he's stressed and tired, but when I can't move, he does his work as well as mine. 

29. I’m involved with Invisible Illness Week because I may not look sick but I am.  And fibromyalgia is not just a throw away diagnosis.  It's real, and I'm SICK. 

30. The fact that you read this list makes me feel that maybe I can make a small difference in helping people to understand that just because someone looks good, doesn't mean that they don't feel horrible.


Sallyford said...

It's good to meet you! I have had all these symptoms for some time and only recently heard about this illness. Unfortunately we do not have healthcare so I cannot get a diagnosis yet. I did a search and found my symptoms on-line. Until then I felt as though people were not taking me seriously. I was hurting in all my muscles, and bones almost all the time. I cannot move on some mornings until I have had painkillers. Like you, if I managed to have energy one day,, the next I can hardly move.I cried with relief when I found out what I had, because I believed people thought I was imagining it. My husband has been very supportive every since. Thank you for sharing this with us. I needed to find your post. I would love to hear from you if you have any advice. Take care, Sally xx

Alana said...

Hi Sallyford, I'm glad you found my blog! As you are a self diagnosed fibromyalgic I recommend finding a book called "What your doctor may not tell you about Fibromyalgia" by Dr. Paul St. Amand and Claudia Mareck. The protocol they describe in the book has helped me immeasurably, and the medication is over the counter. It's not a hoax and they aren't selling anything. Visit www.fibromyalgiatreatment.com for more information. This might help you and give you some hope for a better future. It has helped me!

Xen Xen said...

I am on the caretaker side of things these days, but for the past 20 of my 33 short years, my dad has been ill, though it took them the better part of those decades to diagnose anything. He was originally thought to have chronic fatigue syndrome and fibromyalsia, epstein barr was a thought, but he was rather ill all the time, with good and bad days. He has been diagnosed with multiple myeloma about 5 years ago, which is cancer of the bone marrow, where the marrow seeps out from lesions in the bone itself. Needless to say, he has been in some form of suffering for quite awhile. Little did I know that it would prepare me to care for my husband who has a number of issues such as, cerebral ataxia, neurological damage, traumatic brain injury, ptsd and a very serious gluten problem (he nearly died from the side effects) that was likely triggered by stress. In any case, it is always an interesting road and I know what it is like from my point of view and, as my mom says, "People don't realize how sick my dad is (or husband) because they look just like everyone else and they aren't walking around with a bandage on themselves to show everyone there is something the matter."

Well, I will go while there is still room on here to write :o)

Lord, have Mercy!

Has said...

Thanks for sharing this Alana, it is an eye-opener. I'm glad I read it.
Selena (Australia)

Rebeca said...

Thank you for sharing this. I can't imagine what it's like! My mother in law also has fibromyalgia and has some really hard days, although is a lot better since moving from Oregon to Arizona.
May the Lord bless you and give you strength for each moment!

Trish said...

Thank you for sharing and helping me to better understand some of the struggles you face. I, of course, have no idea what it is like to feel pain nearly all the time nor having to accept that you are not "going to get better". You and your family are on our daily prayer list. I hope that you know that you are an encouragement to me in many ways and I thank God for you and all the ways you teach and advocate and share important info on such a variety of topics (food, autism, fibro, etc.) Much love and prayer! Trish