1. The illnesses I live with are: Lyme disease, Immunodeficiency, Celiac disease, and two syndromes caused by the Lyme infections. On top of these some of my organs have suffered damage from the Lyme infections and are not functioning optimally. All of this leaves me with symptoms that can sometimes be debilitating even after what appears to be successful Lyme treatment.
2. I was diagnosed with it in the year: Lyme disease in 2015 and all the others followed the years after.
3. But I had symptoms since: March 2014.
4. The biggest adjustment I’ve had to make is: It’s impossible to pick one big adjustment, there have been so many over the years. But among the hardest was giving up my hopes and dreams to embrace God’s best plan for my life.
5. Most people assume: That if I am out of the house or smiling, talking, telling a joke or laughing, then I must be feeling well.
6. The hardest parts about mornings are: Waking up feeling ill or in pain and trying to get the kids ready for school. Each morning I pray for grace and strength to make it through the day. And each day God has been faithful to sustain.
7. My favorite medical TV show is: I don't have one.
8. A gadget that I especially appreciate is: My smartphone! It has been a blessing. It is a huge help in keeping me connected to the outside world during times I'm house-bound.
9. The hardest parts about nights are: Not having any spoons left. But nights are still my favourite time of day because I have the least amount of responsibilities and I can fully relax.
10. Each day I take: A few prescription medications. I also take a few vitamins and supplements that help with energy production at the cellular level, help along my organs, and support a compromised immune system.
11. Regarding alternative treatments I: Use ones that help me, have a scientifically reasonable mechanism of action, and don’t go against what God says in the Bible.
12. If I had to choose between an invisible illness or a visible illness, I would choose: To leave it in the Lord’s hands. He knows what is best for me.
13. Regarding working and career: I miss working hard! And I wish I could work and contribute to our family financially even just a little. But mostly I long to be a stronger and more active wife and mother, it breaks my heart that I cannot do more for my family.
14. People would be surprised to know: How lonely it is living with a chronic illness even when surrounded by the most loving and caring community! ❤️
15. The hardest thing to accept about my new reality has been: The restrictions. That I cannot be a more active wife, mother, sister, and friend. As well as be a more involved member in Church and community like I long to be.
16. Something I never thought I could do with my illness that I did was: Keep going long after I thought I couldn't go on any longer. Seek ways to be the best wife, mom, sister and friend that I can be with my limitations. Live with joy and thankfulness despite my circumstances. God is truly who carries me and gives me grace and strength for each day, hour, and minute. He is good!
17. The commercials about my illness: Don't exist. Any other ads or information about Lyme disease on government regulated sites are usually highly inaccurate in regards to the chronic forms of tick borne infections. This is changing, but it is slow.
18. Something I really miss doing since I was diagnosed is: Going to church twice each Sunday. Volunteering. Running. Also working physically hard, finishing a task in a reasonable amount of time, and not paying for activities that are challenging for me.
19. It was really hard to have to give up: The freedom of being able to do many things in a single day and not having to consider the effects of every action.
20. A new hobby I have taken up since my diagnosis is: Most of my hobbies are things that are now challenging for me (refinishing, diy projects, painting, interior design, hiking, running, etc) so I lost most of those. Recently I gained back my ability to read. I enjoy writing, journaling, puzzling, I also love gardening when I'm able to do that!
21. If I could have one day of feeling normal again I would: If it's Sunday, go to Church twice and then spend the rest of the day visiting to the max! I miss "normal" Sundays. If it's any other day, spend quality time with my husband and kids doing something active outdoors together.
22. My illness has taught me: To surrender my journey to God. I have very little control over my body and my health. I can eat healthy, get adequate rest, exercise, and take care of my nervous system, but I cannot bring good health to my body. That it is important to take care of our bodies to the best of our ability, but ultimately our level of health is in the Lord’s hands.
23. Want to know a secret? One thing people say that gets under my skin is: "Glad to see you are having a good day/doing better!" When in actuality I'm probably just happy to be able to push through various symptoms that day to be wherever I am, and will pay a price for it later, even though that price has been much less lately.
24. But I love it when people: Keep it simple with a friendly greeting, or if they genuinely want to know and have a minute, ask how I'm doing instead of assume. ❤️ I especially love when you share about things going on in your life and how you are doing, too!
25. My favorite Scripture that gets me through tough times is: "My grace is sufficient for you, for my power is made perfect in weakness." 2 Corinthians 16:9
But truly when things are especially hard I find myself in the Psalms a lot. The Psalmist states many times that his comfort and hope are in God's Word. God's Word sustained the Psalmist on the hard days, and it is sufficient to sustain us too.
26. When someone is diagnosed I like to tell them: That I am sorry. That I will be praying for them. And if they ever want to talk or seek advice from someone who has been there and understands, I am here for them.
27. Something that has surprised me about living with an illness is: How different my life is compared to other people my age.
28. The nicest thing someone did for me when I wasn’t feeling well was: Sent a text, card, phone call, small meaningful gift, etc. when I was too tired and sick to have visitors. These were a tangible reminder that someone saw me, saw my pain, and cared enough to be my friend on the hard days too.
29. I’m involved with Invisible Illness Week because: It's not often spoken about and there are a lot of misunderstandings. I want to let those with invisible illness know that they are not alone, and I want to help those who are healthy know how they can reach out to those around them who have chronic illness.
30. The fact that you read this list makes me feel: Vulnerable but grateful.
