30 things about my invisible illness you might not know

blogger-badgeToday is the first day of National (as in the US) Invisible Chronic Illness Awareness Week. I know I don’t live in the US (anymore) but I want to participate anyway. In every part of the world people suffer from invisible illnesses so I really think it’s important to acknowledge this week no matter where you are.

My invisible illness is only invisible to others, to me it is highly visible… it impacts my life every day. Even if I have a pain free day I know the disease is there through my meds. They are a constant reminder that my body is not well.

My invisible illness is rheumatoid arthritis. After 4 years I’m used to swollen and painful joints and to wake up with stiffness in my whole body. I have meds that works and most of the time I’m not having any major issues. I try to take care of myself in order to limit a flare or at least make them not as bad.  I know that I might wake up tomorrow and not be able to get out of bed. Living with rheumatoid arthritis is like being in a roller coaster blindfolded. It’s up and down and twists and turns but through the help of my fantastic hubby I’ve learned to accept my disease and to rejoice in each new day no matter how I feel.

I will devote this week to my illness and my first post on this subject is the “30 things meme” (please follow the link for more information on this subject):

1. The illness I live with is: Rheumatoid Arthritis (RA for short).

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: A few months before my diagnosis.

4. The biggest adjustment I’ve had to make is: Everything really… but having to adjust life so I always can go to bed early (especially on weekdays) has been rough.

5. Most people assume: Sometimes I get the feeling that people think I’m lazy and that it really isn’t so bad with my disease. I want to do things but sometimes I need to listen to my body instead of “pushing on”.

6. The hardest part about mornings are: Joint pain and stiffness, although nowadays with my ”new” medication the majority of the mornings are actually without major issues.

7. My favorite medical TV show is: Don’t watch medical shows. I barely watch TV period.

8. A gadget I couldn’t live without is: My iPhone

9. The hardest part about nights are: Waking up and being in pain and not finding a comfortable position so I can go back to sleep again.

10. Each day I take: 5 pills and vitamins.  I’m also taking Simponi (a syringe) once every 4th week.

11. Regarding alternative treatments I: Have tried eating gluten-free, as well as lactose-free and no red meat. Now, as of 2 weeks ago I’m trying a Paleo diet. I’m determend that something will eventually work so I can finally get rid of my daily cortisone pills.

12. If I had to choose between an invisible illness or visible I would choose:  Hmm, not sure but I think invisible. When I sat in a wheel chair for a short period in 2009 I got so many stares and people was looking… I felt inconvenient. At least with an invisible illness I can pretend nothing is wrong to the outside world and just talk to people about it whenever it feels right.

13. Regarding working and career: Being able to work is important to me. It was not until I started working again in 2010–I stopped working when we moved back to Sweden–that I started to realize that I could live with RA and the disease didn’t have to limit my life as much as I originally thought. I think I was pretty close to a depression but through finding a reason to wake up each day and go to work I started feeling better.

14. People would be surprised to know: How tired I am. For me, the worst part with RA is not the pain it’s the tiredness.

15. The hardest thing to accept about my new reality has been: Walking with a ”ticking bomb” inside my body. I never know how I’ll feel tomorrow.

16. Something I never thought I could do with my illness that I did was: Participate in a 5 kilometer (3 miles) race. I’m very proud of myself for being able to walk all the way, and it made me feel so good and happy about myself that I’ve decided to participate in two races next year. 🙂

17. The commercials about my illness: Can’t remember I’ve ever seen any…

18. Something I really miss doing since I was diagnosed is: Hmm, can’t think of anything actually. During the first years after my diagnosis I think it was harder. I didn’t want to plan and schedule things as I never knew how I was going to feel and if I had to cancel in the last minute. Nowadays with a medication that finally works I’m able to live almost as I did before I got sick. I’ve just had to learn what I need (such as comfortable shoes, a warm blanket, a good nights rest etc) in order to not have any issues.

19. It was really hard to have to give up: Shoes! 😦 I see all these nice looking shoes in the stores and so wish I could buy them but nowadays it’s comfy that matters over look. I still have my favorite shoes in my closet because you never know one day I might be able to wear them… at least for a short few hours at a party. I also miss being able to hold my DSLR camera, it’s too heavy for me nowadays.

20. A new hobby I have taken up since my diagnosis is: Geocaching and iPhone photography.

21. If I could have one day of feeling normal again I would: Go on a photography journey with my hubby and not think about having a comfortable place to rest or not being able to walk due to nature and elevation. I would sit on the ground eating a picnic and not worry about having to stand up again without assistance.

22. My illness has taught me: Positive thinking can change the outcome of even the worst day. And, a little stubbornness gets you a long way.

23. Want to know a secret? One thing people say that gets under my skin is: ”I’m also tired, it’s the season” (as in Winter time in Sweden and it’s dark most of the day and people are generally more annoyed and grumpy than usual). I just want to yell ”you don’t even know what tiredness is”! Tiredness is when no matter how many hours you sleep you never feel awake.

24. But I love it when people: Try to cheer me up with cute messages.

25. My favorite motto, scripture, quote that gets me through tough times is: Just Breathe

26. When someone is diagnosed I’d like to tell them: It takes time to accept a new life with a chronic illness. It can take months or years, but eventually you’ll get there. Allow time to “grieve”.  You will feel disappointed and angry and that life is unfair, but, even if it doesn’t feel possible you will suddenly wake up one day and realize that you can continue on with your life no matter what.

27. Something that has surprised me about living with an illness is: I thought my life fell apart when I got my diagnosis but I’ve learned to accept and embrace my new life. It is possible to still live spontaneously, to travel to new places, to plan and schedule my life and to cherish each day just as it is.

28. The nicest thing someone did for me when I wasn’t feeling well was: Just being there with me. During a really bad day I don’t need words I just need silent company.

29. I’m involved with Invisible Illness Week because: Just learned about this from a blog (30somethingwitharthritis) I found recently. I’m not living in the US but it’s important to me to participate in order to raise awareness. Everyone has their own little “hell” they are living in and by showing mine I know I can help someone out there. I also want to connect with others with chronic diseases because together we can give each other strength and advice.

30. The fact that you read this list makes me feel: Appreciative. Thank you for coming to my blog and taking the time to read this. It means more to me than you ever can imagine.

2 thoughts on “30 things about my invisible illness you might not know

  1. Elisabeth September 10, 2013 / 17:08

    Jättefint att läsa Ceilia, både det här och det om skedarna. Nu förstår jag mycket bättre hur du har det och jag blev riktigt tagen och rörd av att läsa det. Kram ❤

    • Cecilia September 11, 2013 / 11:53

      Tack kära svärmor för de fina orden! Ja visst var artikeln och skedarna bra. Jag har alltid tyckt det varit svårt att förklara men det där som hon kom på var verkligen helt suveränt. Jag ska länka till den här från bloggen också tänkte jag och inte bara på Facebook. Kram ❤

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