Monday, March 7, 2016

2015 - 30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know
* The following has changed since 2015, stay tuned for updated "30 Things"

1. The illness I live with is: Anemia, Chronic Fatigue, Fibromyalgia (that I know of)

2. I was diagnosed with it in the year: Anemia started 2005; Fatigue and Fibro August 2012

3. But I had symptoms since: 2010

4. The biggest adjustment I’ve had to make is: Sleep schedule, knowing when to stop instead of pushing past my limits

5. Most people assume: It's normal every day aches or old age pains :) or I simply overslept or being lazy

6. The hardest part about mornings are: Getting out of bed.  Sometimes my back hurts so bad I can't do anything but lay there. 

7. My favorite medical TV show is: Right now Grey's Anatomy.  It used to be House when it was on the air.  

8. A gadget I couldn’t live without is: My scanner/adobe type writer; I have issues writing for to long so what I tend to do is scan things I need to write on and use my adobe typewriter to fill in the forms.

9. The hardest part about nights are: Getting comfortable enough to fall asleep or keeping my RLS at bay

10. Each day I take _ 7_ pills & vitamins. (No comments, please. That is including taking 1 pill twice out the day)

11. Regarding alternative treatments I: Am still looking.

12. If I had to choose between an invisible illness or visible I would choose:Actually I probably would prefer an invisible one.  Even with all the trouble of trying to convince someone that you do have a problem.  I would prefer that over them seeing my pain everyday and either feeling sorry for me or it hurting them too seeing my problems.  At least this way I can hide it when I need to (which also causes it's own problems :) ). 

13. Regarding working and career: Hmm, that has been my biggest struggle.  I would like to be further along than I am, but I wonder sometimes if I take on the extra work will I be able to keep up.  Or will my ailment remain at the stage it's at or worsen making it harder to keep up.

14. People would be surprised to know: Anything is wrong with me.  I rarely just let go and lay out not moving.  I try to push through, which on days I fall asleep at the drop of a dime is kinda scary.

15. The hardest thing to accept about my new reality has been:Unpredictability.  I love to plan ahead, but I can't always count on my plans.  

16. Something I never thought I could do with my illness that I did was: Running.  With the pain that I feel and the extreme pain I feel after exercising I didn't think I would be strong enough to even pretend to run, but I do.  And  I love it.  And will keep it up until my body tells me otherwise.

17. The commercials about my illness: Are vague.  I'm glad they are there because then when I say Fibromyalgia or chronic pain people are like "Oh yeah" I heard about that.  But they don't really do it justice.

18. Something I really miss doing since I was diagnosed is: Getting up and just going.  Now getting up is an issue and some days I can't go because I can't wake up.

19. It was really hard to have to give up: Hanging out after the kids are in bed.  That's usually my me time or me and hubby time, but for the most part I usually need too (don't always do what I need) go to bed when they do to function in the mornings.

20. A new hobby I have taken up since my diagnosis is: I haven't fully executed it, but I want to garden.  Actively as mentioned above I've taken up running.

21. If I could have one day of feeling normal again I would: Take the kids somewhere like disney were we would walk around all day, ride rides, eat whatever and do it again the next day.  As it stands if I did that I wouldn't be able to walk either the next day or a few hours into that day.

22. My illness has taught me: Priorities

23. Want to know a secret? One thing people say that gets under my skin is: Just take some tylenol or just get up and move around you'll feel better.

24. But I love it when people: Want to know more and don't blame everything on my ailment

25. My favorite motto, scripture, quote that gets me through tough times is: Of course, God doesn't give you anything you can't handle.

26. When someone is diagnosed I’d like to tell them: Don't think about what you can't do, remember all you can and do what you can until you can't.

27. Something that has surprised me about living with an illness is: How little people know about others.  When I tell people

28. The nicest thing someone did for me when I wasn’t feeling well was: My hubs took the kids out the whole day so I could be alone to sleep, surf the internet or just veg out.

29. I’m involved with Invisible Illness Week because: There are a lot of those who suffer in silence and I was one of them.  I'm not trying to put a sign on my back and say look at me, but look at the illnesses support those with them.

30. The fact that you read this list makes me feel: Happy that maybe you will take interest or show us chronically ill some support.

MS Awareness Week Now

It's officially MS Awareness week, today through the 13th. 

What are you doing to raise awareness?

* I will be wearing orange
* Increasing my posts
* Sharing my journey
* And spreading the word

Wednesday, March 2, 2016

MS Awareness Week

Multiple Sclerosis awareness week is coming up, what are you doing to spread the word?