30 Things about my illness....

1.The illness(s) I live with is: fibromyalgia (and others)

2.I was diagnosed with it in the year: 2010

3.But I had symptoms since: 2006

4.The biggest adjustment I’ve had to make is: having to monitor how my entire body is feeling every single minute of the day. Then I take that information and decide if I need to change anything about what I’m doing at the moment to prevent worse pain from coming. And realizing that so many of the things that I used to love to do are simply no longer an option.

5.Most people assume: that because I don't give in to the pain that it must nt be that bad.

6.The hardest part about mornings is: getting out of bed, stiff body and all, feeling like I’ve only slept 30 minutes. morning after morning after morning. Knowing that over sleeping is truly not an option for me, because if I do I will be late.  I lay there from 30-60 mins simply trying to will my body to move.

7.My favorite medical TV show is: Greys Anatomy, Mystery Diagnosis, and House

8.A gadget I couldn’t live without is: if we’re talking mechanical gadget, it’d be my smart phone. When I’m not at home I need to have access to important information, my schedule and be able to look things up the internet.

9.The hardest part about nights are: having enough energy to cook a somewhat healthy meal, clean up and still be pleasant and present for my family.

10.Each day I take at least 30 pills.  I'm suppose to take many more than that, I just refuse to let them take over.

11.Regarding alternative treatments I: I am very interested in research being done on alternative treatments. Massage is very helpful although extremely expensive, and we just can't afford it.

12.If I had to choose between an invisible illness or visible I would choose: an invisible illness. Although it comes with less apparent challenges and disbelief from others, I still feel that it is easier to achieve more with invisibility of illness. People are not as quick to judge your appearance and discount your abilities.

13.Regarding working and career: I wish I had realized the extent of the effects of my fibromyalgia on working before I continued to try and work as I always had.  I feel like I did myself a huge disservice over doing it.

14.People would be surprised to know: the subject that brings me the most anxiety is my ability/inability to access good medical care, any time or place it is needed

15.The hardest thing to accept about my new reality has been: realizing I need to ask for help to do things I could physically accomplish at the moment, but if I did, I would be in pain during it or for weeks afterward
 
15.Something I never thought I could do with my illness that I did was: I know this will sound silly, but I can wear high heels again.  It turns out wedges are my best friend.


16.The commercials about my illness: make me happy they are raising awareness about fibromyalgia, but also irritates me that the pharmaceutical companies insinuate that their medicine works for everyone with fibromyalgia. This gives viewers the false belief that fibromyalgia has a “cure” - so incorrect!!

17.Something I really miss doing since I was diagnosed is: having a great time with friends, doing whatever, whenever for however long as I want, no plan needed!

18.It was really hard to have to give up: Going out and dancing for hours on end!

19.A new hobby I have taken up since my diagnosis is: truly enjoying and appreciating nature! I always thought flowers were beautiful, but now I am endlessly amazed at how gorgeous and calming waterfalls, lakes, oceans, plants, trees, animals, mountains, sunrises and sunsets are!

20.If I could have one day of feeling normal again I would: sky dive, bungee jump, go on a long hike, ride crazy roller-coasters, have a few cocktails with friends and actually sleep well! That all fits in one day, right?

21.My illness has taught me: who my real friends are. They are the ones who accepted the “new” me, tried to get somewhat of an understanding of what fibromyalgia is and offered their assistance to me when they knew I needed it.

22.Want to know a secret? One thing people say that gets under my skin is: when people tell me (behind my back or to my face) that I must not have fibromyalgia that bad since I manage to do so many things and stay up-beat.

23.But I love it when people: Tell me that I inspire them by staying positive and educated and not letting fibromyalgia drag me down!

24.My favorite motto, scripture, quote that gets me through tough times is: I have many quotes that I love, but one that applies more to living with chronic illness is: ” Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain” – unkown. See my quotes page to read more inspirational quotes.

25.When someone is diagnosed I’d like to tell them: to get educated about their condition. The more you understand, the better you will be able to help create a treatment plan that lets you live a fulfilling life!

26.Something that has surprised me about living with an illness is: the amount of people who know, but completely ignore the fact you are living with a chronic illness or simply don’t believe your illness is real.

27.The nicest thing someone did for me when I wasn’t feeling well was: As soon as I read this question I knew it would be something to do with my amazing husband or kids.  Not too long ago, I was having an out and out AWFUL day.  I could barely move and I knew that I had a full day of chores and house cleaning ahead of me.  Instead my hubby, daughters, and brother in law cleaned the house from top to bottom, including laundry and allowed me to have a full days rest.  I'm truly blessed.

28.I’m involved with Invisible Illness Week because: I want to raise awareness for all invisible illnesses and for what it is like to live with them.

29.The fact that you read this list makes me feel: good! I hope I was able to share some not-so-obvious aspects of living with fibromyalgia

Comments

Displaced said…
great list! I read your blog often and enjoy it... I'm passing out tired but I wanted to thank you and say hi

til later

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