Invisible Illness Week: 30 Things Meme

5 years ago


1. The illness I live with is: The main contenders are Fibromyalgia, Chronic Fatigue Syndrome and an undiagnosed neuralgia (pain/numbness/tingling) of the face and head. Also living with endometriosis, pelvic congestion (varicose veins of the pelvis), carpal tunnel syndrom, TMJ.

2. I was diagnosed with it in the year:  Fibro/CFS in September 2010

3. But I had symptoms since:  Summer of 2009 

4. The biggest adjustment I’ve had to make is:  Not being able to do all the things I used to do, or be the kind of Mom I used to be. Not being able to do "it all". Learning to sit down, lie down, rest when my body demands it. Sleeping half my life away. Saying "no". Cancelling things last minute when I don't feel well enough to go. Asking for help.

5. Most people assume: That I'm better or there's not that much wrong with me because I put on a brave face.

6. The hardest part about mornings are: Not being able to jump out of bed and "GO" because of leg stiffness. Getting my four kids fed and three of them out the door to school while putting on a cheerful face and faking a happy mood, despite the fogginess in my brain, pain in my head (from lying on it all night) and shuffling around on stiff, sore legs.

7. My favorite medical TV show is: Dr Oz. I feel like he wants people to be well and healthy in the most natural, least invasive ways possible. He's also very big on nutrition, and so am I.

8. A gadget I couldn’t live without is:  My MacBook. It has all the things that run my life; calendars, email, social media connections, my blog and website. And it keeps me entertained with Netflix, iTunes and simple games when I don't feel like doing much else.

9. The hardest part about nights is: Staying awake long enough to do anything with my family. Having to go anywhere, ever. Resisting going to bed at 7pm.

10. Each day I take __ pills & vitamins: 4-5 pills daily, plus another couple as needed. Plus painkillers. And about 12 vitamins and supplements.

11. Regarding alternative treatments I: love massage therapy and chiropractic care; I wish we had more insurance coverage or could afford for me to go more often. I'm all over holistic healing, through nutrition, supplements, or alternative care practitioners. 

12. If I had to choose between an invisible illness or visible I would choose: I have no idea how to answer this. Invisible illness suck; people don't get it, it's awkward to have to explain to people you don't know well or in social situations, and did I mention people don't get it? I don't know if having a visible illness would be any better, I'm sure it would be another, different set of challenges.

13. Regarding working and career: I had to quit working because of my illness, and the strain it put on me and our family life. I stuck it out for far too long and it almost damaged me permanently. I have many career aspirations, still figuring out how to make my dreams match my reality.

14. People would be surprised to know: Being chronically ill has given me a new perspective on life, broken through many of my reservations and has turned me into a mushy, emotional sap. I am so grateful for my wonderful partner and compassionate children.

15. The hardest thing to accept about my new reality has been: That my mind and my body don't match up, and I can't always do all the things I want to do. I have high standards for myself, my family life and many great ideas for projects I want to pursue, but have to pace myself and take it slow. My brain is fast; my body is slow.

16. Something I never thought I could do with my illness that I did was: Go away to a resort for a week and enjoy myself, rest, relax and still participate in activities.

17. The commercials about my illness: Show older women, which makes me feel abnormal, and perpetuates the myth that young people can't become disabled by fibro/CFS

18. Something I really miss doing since I was diagnosed is:  REAL exercising, for hours, with lots of weights. I love working out, especially weights.

19. It was really hard to have to give up: My independence. I've always been fiercely independent, and now I can't always drive or go places by myself, and I sometimes need help with things like washing my hair or household chores. It's been really difficult, but in a way I think it's been a little bit good for me too. I have learned to ask for help, received it and been better for the experience.

20. A new hobby I have taken up since my diagnosis is: I've gotten serious about blogging and writing, and although building a community isn't new to me I've had the time and resources to devote to it for the first time in a while. I've learned a lot about social media, the mechanics of blogging and other technical aspects of running a website that I didn't know before. I love running websites because it draws on my creative side and my nerdy side. Like chocolate and peanut butter, they're better together.

21. If I could have one day of feeling normal again I would: Luckily I do have days like that, and I always try to make the most of them. I cook, bake, take the kids out, tackle chores that have been bugging me, play, laugh, and savour the time. I know not everyone with chronic illness is as lucky.

22. My illness has taught me: That it's OK to lean on people, and to make myself vulnerable. That I have the best, supportive life partner I could ever dream of, who rose to the occasion when the going got tough.

23. Want to know a secret? One thing people say that gets under my skin is:  If I only did this or that, did more, did less, etc. I would feel better. You don't know, save your comments. Probably my biggest peeve is when people comment that my children must be a burden, when in fact they're a huge blessing, unimaginably helpful and one of the best things in my life.

24. But I love it when people: Leave me an inspiring comment on my blog. That makes me feel like I'm doing it right, things are good, I'm making good choices and people support me.

25. My favorite motto, scripture, quote that gets me through tough times is: The wise words of Dolly Parton: We cannot direct the wind, but we can adjust the sails. 

26. When someone is diagnosed I’d like to tell them:  Be your own advocate, make time for you, do what makes you feel good, make yourself a priority. 

27. Something that has surprised me about living with an illness is: Despite the fact that some things have changed for the worse, a surprising amount of things have changed for the better. The quality of my family life has improved, and I've made online connections I never would have otherwise. 

28. The nicest thing someone did for me when I wasn’t feeling well was:  Made birthday cupcakes for my son's 4th birthday and delivered them to my house. (<3 you Liz)

29. I’m involved with Invisible Illness Week because: I want people to learn more about invisible illnesses, and be more understanding and compasionate. Especially towards younger people.

30. The fact that you read this list makes me feel: People actually care about understanding invisible illnesses. And me.




Maranda Carvell is a mom of four, nutrition advocate and stealthy chef. When she's not blogging and writing for Pathways To Life, you can find her tweeting about family, gaming, Ottawa and more as @HotelQueen.

This is an article written by one of the incredible members of the SheKnows Community. The SheKnows editorial team has not edited, vetted or endorsed the content of this post. Want to join our amazing community and share your own story? Sign up here.

More from health

by Ashley Jankowski
| 44 minutes ago
by Sara Lindberg M. Ed
| 2 hours ago
by Sara Lindberg M. Ed
| a day ago
by HelloFlo
| 2 days ago
by HelloFlo
| 3 days ago
by Debbie Wolfe
| 3 days ago
by Hannah Hickok
| 5 days ago