Chronic illness visited me and stayed after a fall in November 2009 that required ten stitches on my knee. When I went to my doctor two days later to have it checked, she started me on a different and stronger antibiotic due to inflammation and concern of a bone infection. After a single dose I end up in ER with a severe anaphalaxis reaction to sulfa antibiotic.
After that I began having more and more issues and was suddenly having allergic reactions to numerous things. The next year and a half was filled with multiple doctors and tests, being put on high dose steroids and numerous antihistamines. My health was not improving, I felt miserable and was not finding any answers. Finally, I went to yet another new doctor in the spring of 2011 and was diagnosed with MCS (Multiple Chemical Sensitivity) and a rare chronic blood cancer from a gene mutation that causes me to have high blood histamine which contributes to my MCS.
Prior to November 2009, I was up at the crack of dawn and usually to bed after midnight. I was constantly on the go, busy with projects, working out at the gym, swimming, gardening, church activities and social life. My husband and a couple close friends called me the “Energizer Bunny” because I kept going and going. Suddenly my batteries were out of juice and my body was not functioning.
One of the areas I struggled with most was making plans and then often having to cancel when the time came, due to my health issues. I felt guilt for letting others down, disappointment in not being able to do whatever it was, frustration with myself and resentment toward my illness. As I sought ways to deal with this frustration I began telling myself and others that I am consistently inconsistent due to my health.
STEPS TO EMBRACE BEING CONSISTENTLY INCONSISTENT:
1. View chronic illness as part of God’s sovereign plan for my life
My husband was a great help as he would frequently remind me of God’s sovereignty over my chronic illness and that it was God’s plan for both of our lives for our ultimate good and His glory. Digging into God’s Word and learning about God’s character and how He uses trials to refine and mature us helped immensely.
2. Recognize my limits and adjust expectations and schedules accordingly. (This step may need refined frequently with the ebb and flow of symptoms.)
This took me a good couple years of pushing until I hit a wall and then laid up for days or weeks afterwards before I learned. We began to see patterns and realized after exposures to fragrances and chemicals exposures being out and about on the weekend and going to church I was wiped out and needed Monday to be a crash day. Now I schedule Mondays as rest days where I sleep as late as my body requires and recoup. I often will need to sleep in late another morning in the week usually Thursdays or Fridays. I also learned I need buffer days between scheduled events as the exposures often will knock me down a day or so. For me, on a real busy day, where I am cleaning house or prepping for a company dinner I need to take time every hour or so to just sit/rest a few minutes. By doing that, I find I do not wear out as quickly. Figure out the unique limitations for your chronic illness and how best to adjust your expectations and schedules.
3. Realize I have no reason to feel guilt or shame if too sick and need to cancel.
This was hard for me as I tend to be a “people pleaser” and struggle with fear of man. I now tell people as we make plans, I will be there if at all possible but due to my health issues I am consistently inconsistent. If I cancel last minute, it is not you or my finding something better to do, but that I am truly too sick.
4. Decide to choose the better over the good.
Because I am limited by exposures to fragrances, cleaners and other chemicals, I want to make my time when away from home to count for eternity. For me this means doing things to relate with people and serve others. To accomplish this, I must limit my times of exposures doing other things. I do much of my shopping online and at a couple local health food stores I can go to without reactions. My husband is always willing to pick things up for me which is a huge blessing. If I have to have a day of appointments and errands, I try to schedule it all in one day so only have one time of recovery. I am finally getting past my pride and wearing my carbon filtered mask into most stores. If an event is planned for Saturday, it will usually mean I will be down for the count and unable to attend church on Sunday. I then need to evaluate which will have the most impact on eternity and the people we love.
5. Ask God for new ministries that flex with good and bad days.
God has crossed my paths with several people with chronic illnesses in my own church, through blogs and in Facebook groups. God has given me opportunities to pray for these folks, send encouraging messages or texts or call them. And I am blessed by theirs. I also am part of our church prayer ministry and get prayer requests as they are shared via email.
We host a fragrance free life group in our home that my husband leads every week. Occasionally I am too wiped or ill to attend and stay upstairs or we have someone else host. We also enjoy to host some meals for friends as my health allows or take meals to new moms or when somebody moves into a new home. I don’t do it every time and schedule it on a day with buffers around it and have my husband deliver it to prevent exposures. Right now I am in a worse season of reactions so have not hosted or attended anything in over two weeks and that is okay.
I am currently taking a Biblical counseling course that is a home study but later on will involve observing counseling then being observed by a counseling pastor as I counsel. I have had many delays on getting this began let alone being done, so once again realize the timing is in God’s hands and it’s okay to be consistently inconsistent.
Michael and Margaret Robble are a couple in our church who have written a book on how God has met them through over 25 years of chronic illness. Their book is called “Always Sick, Always Loved.” I highly recommend this book! They are now in the process of writing a second book.
We met Texans, Michael and Christy Hardy, through the Robbles. This sweet couple minister through a website and blog to encourage the chronically ill called Chronic Encouragement. We were blessed by them and their encouragement while staying in our home when they were visiting in the area. Michael has MCS like I do and also has difficulties staying in hotels. http://chronicencouragement.com/
6. Find mutual support.
God has blessed me with some wonderful godly friends in my church here in Colorado and in Arizona that have walked the road of chronic illness many more years than me, as well as others who are newbies on the journey. Between these local friends and others online, we are able to understand with empathy and compassion and encourage one another and point each other to godly truth. It has also been helpful in finding medical help and resources.
7. I am not my illness.
I am, above all else, a child of God. I am also a wife, mother, Nana, sister, daughter and friend that happens to have a chronic illness. While it may make challenges and life unpredictable, I am not my disease. I seek how best to fulfill each of my roles around and in spite of my illness. God has allowed my illness to transform me more fully into the image of His Son. He still has the same desires to see me grow in grace and bear spiritual fruit of love, joy, peace…
22 But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, 23 gentleness, self-control; against such things there is no law.
I would love to hear from others and how you have learned to deal with living a consistently inconsistent life with chronic illness.
Love & Prayers,