This week (September 8-14) is Invisible Illness Awareness Week and in honor of that I am sharing 30 things you may not know about my invisible illness.
1. The illness I live with is: Chiari Malformation, Dysautonomia, Fibromyalgia.
2. I was diagnosed with it in the year: Chiari - October 2012; Dysautonomia & Fibromyalgia - September 2013
3. But I had symptoms since: I became symptomatic with the Chiari Malformation after I was in a car accident in August 2012 where I sustained a neck sprain (whiplash) injury. I began having symptoms that I later learned were from Chiari about 2 weeks after my accident. The symptoms increased in number as well as frequency and severity throughout the next several months until I had Chiari Decompression brain surgery in January 2013. I developed symptoms of Dysautonomia before my surgery but they unfortunately worsened after surgery and I also began to notice symptoms possibly related to Fibromyalgia appear 4 months after my surgery. There are many symptoms of Chiari, Dysautonomia and Fibro that overlap each other, so I'm often unsure of which condition is causing my symptoms. I was told by my doctor that the Dysautonomia and Fibromyalgia likely resulted from nerve damage and damage to the autonomic nervous system due to the Chiari and surgery.
4. The biggest adjustment I've had to make: I was unable to continue working part time as a nurse following my surgery. That put a significant strain on our household income and my husband had to take on two other part time jobs in order to make ends meet. I have had to adjust to him being gone working a lot and me then being left to raise our three young children mostly alone while dealing with chronic illness and pain.
5. Most people assume: That my surgery "fixed or cured" me. Because I "look fine" on the outside, that must mean I really am fine.
6. The hardest part about mornings are: Dealing with the pain I feel as soon as I wake up and forcing my sore and stiff joints to move. Also, some mornings I am exhausted as soon as I wake up as if I hadn't slept at all during the night.
7. My favorite medical tv show is: I really don't have one. I did enjoy watching "NY ER" over the summer. I like to see 'reality' medical shows. But, watching those shows sometimes makes me miss working as a nurse.
8. A gadget I couldn't live without is: My iPad and iPhone. Yes, I know, that makes two but I use one more at home and one when I'm not home.
9. The hardest part about nights are: By nighttime, I am usually in a lot of pain in my neck and back. Because of the pain, it can be difficult for me to get comfortable and fall asleep even though I am usually completely exhausted.
10. Each day I take ___ pills. 3 every morning and then, depending on my pain levels, another two or three if I need them.
11. Regarding alternative treatments, I: am a believer that they can help some people. However, most of them are quite costly and are not covered by insurance. I don't exactly have any extra money to spare on a treatment that may not help me. I am currently receiving trigger point injections in my neck and back which do help some, although they don't last more than two weeks for me. Thankfully they are covered by my insurance. I am always researching the possible benefits of various alternative treatments and diet changes.
12. If I had to choose between an invisible illness or visible I would choose: Um, can I say neither?? Anyway, I guess having an invisible illness is nice because you don't have to field any "nosy" questions or peoples stares. I always joke that at least I still "look good" even though I feel awful. However, because I look so normal, when I do need to use a wheelchair or need assistance, people look at me like I am crazy or lazy or they just assume that I look fine so I must not really need help. This definitely does hold me back from using assistive devices or asking for help from those who don't know me or my situation.
13. Regarding work and career: The most important job I have right now is that of wife and mother. Being a stay at home wife and mom is no easy job. I give all the energy I have in a day to my family and I do this with complete joy. I am blessed with an amazing husband and three beautiful children, who are the reason I get out of bed each day.
14. People would be surprised to know: that I still grieve the loss of my health. I haven't reached full continual acceptance of it all yet.
15. The hardest thing to accept about my new reality has been: That I may feel this way for the rest of my life. I am not that old, at least I don't think 34 is old, and the very thought of this still makes me very emotional and even depressed.
16. Something I never thought I could do with my illness that I did was: Be able to find the good in the hard things that have changed my life forever and joy despite my struggles. I am learning to be grateful for and find joy in every day life, small things, big things, things I never would have thought of before, things that I took for granted before illness entered my life.
17. The commercials about my illness: I really don't pay any attention to commercials. I hate them and I think the invention of DVR is one of the best things ever just so that I can fast forward through commercials. I also hate the way that commercials make it seem like one pill can take away all the symptoms when the reality is for most people that the side effects from the pill are worse than the symptoms of the condition itself.
18. Something I really miss doing since I was diagnosed is: I just really miss feeling healthy and being pain free.
19. It was really hard to give up: Control. I was a major "control freak"in my pre-illness life.
20. A new hobby I have taken up since my diagnosis is: blogging. I started my blog to share my story in order to hopefully help someone else going through similar struggles, and also bring awareness to my chronic conditions.
21. If I could have one day of feeling normal again I would: Spend the whole day with my family, running around and playing actively with my kids.
22. My illness has taught me: Oh wow, so so much. One thing I have learned is that I am stronger than I ever thought I was. Also, with regards to my faith, I have learned that God is still good even when He allows sickness and suffering to come in my life. He has faithfully taken care of me and my family through this whole journey and He gives me the strength I need to get through every single day. I also understand empathy and am more compassionate towards others. I've also learned to give up control and not to 'sweat the small stuff' because my body no longer deals well with stress, so I don't stress over things as much as I used to, if I can help it.
23. Want to know a secret? One thing people say that gets under my skin: To just "push through". Seriously…..what do you think I'm doing by just being out of bed, dressed and out of my house?? I push through exhaustion and pain to some degree every day.
24. But I love it when people: Ask about how I'm feeling or about my conditions and are truly interested in my answer and are supportive.
25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 46:1 "God is our refuge and strength, an ever-present help in trouble."
26. When someone is diagnosed, I would like to tell them: That they can get through this and they are stronger than they ever thought.
27. Something that has surprised me about living with an illness is: the loneliness and isolation that I feel because of it.
28. The nicest thing someone did for me when I wasn't feeling well was: to take care of my children for me and be their chauffeur to extracurricular activities.
29. I'm involved with "Invisible Illness Week" because: I want to join this movement of bringing awareness to "Invisible Illness".
30: The fact that you read this list makes me feel: Grateful and humbled that you cared enough to read through this lengthy post!
