What happens when you don't "get better"?
When you get the stomach flu, you throw up, take gravol, nibble on saltines and remind yourself it will be over in a day or so. Or when you break a leg, you hobble around with crutches, waiting until the cast comes off. With health problems, there is usually a day when it' "gets better", but what do you do, if it doesn't?
This is a question that has been rolling around in my mind for awhile. I've realized that even with the multiple diagnosisses of chronic illness, I've been viewing my health problems as recurrent events. I have a flare, or something happens and it takes time to "get better" then I move on, and the cycle repeats. In one way I thought it was a healthy perspective, because I wasn't considering myself as "ill", just going through sick seasons. What I've learned however, is with that mindset, every time I get "sick" I get discouraged all over again and just try to survive until the next season of "wellness".
Am I sick? Am I well? Anyone with chronic illness will tell you, you're never fully "better". Your body isn't likely going to be symptom free. We have good days and bad days. Sometimes the good days last awhile and sometimes they seem few and far between. It's a cycle. A draining and frustrating circle. A whirlwind of doctor's appointments, medication refills, and balancing what you can and cannot do.
My cycles are severe. My lupus gives me chronic pain, exhaustion, and inflammation that attacks my internal systems, causing organ damage, kidney stones and more. CVID (Common Variable Immune Deficiency) means I don't have a working immune system. I get an IVIG transfusion every 3 weeks, but even with the antibodies from donated blood, I still get sick a lot. Hemiplegic Migraine Condition gives you debilitating migraines that cause stroke like symptoms. They can be as mild as some tingling in your arm or as severe as paralysis and seizures. Recently, I was also diagnosed with Addison's Disease, meaning my adrenal glands don't produce enough steroid hormones, causing stomach problems, hair loss, weakness, mood disorders and more. These are also on top of eye issues, which require ongoing care. With all these illnesses interacting together, things can get very complicated.
Since my second son was born in May 2017, my health has been in a severe cycle of crisis. I had trouble controlling my health before my boys were born, but pregnancies are very hard on a body and recovering from having two babies 14 months apart made things much worse. I can't count how many times I've been in the hospital in just two years. I've had terrible infections, haemorrhages, crippling anxiety and depression, kidney stones, severe abdominal pain, paralyzing migraines, countless tests and referrals. I've had to be held down screaming by nurses for them to perform scopes, as my body doesn't respond to sedation. I've had more IV's, needle pricks, and pills pushed into me than one could ever count. One hospitalization, they ran out of the usual places to take my blood, so they used my foot. I've been in the ICU, on bedrest, and told a few times I may not survive.
I'm not telling to get sympathy or pity. It's also not about me whining or playing the victim. This is my reality. Every morning I wake up, and these struggles are what I face. I know others wake up to major health issues every day too, and many much much worse than mine. That is their reality too. I take over 40 pills per day and see different doctors multiple times a month. I way my pros and cons with everything, to decide if my body can physically handle what I'm considering. I never know if something will trigger a crisis or bring a new issue to the table.
To summarize, I have a broken body.
I also have two little boys (almost 3 and 2), an incredible husband, loving and supportive family, church ministry and purpose. I have true joy in my life, freedom and salvation through Jesus Christ. I have so much to be grateful for. I get to be a wife, a mother, a daughter, a friend. I get to be an ambassador for Jesus, sharing His love to others. I am provided for. I have healthcare that is free and systems in place to give me an income. My life is full and my needs are met.
Yes, there are things I wish I could do, and sometimes my health feels like a cage, keeping me away from good things in life. But I'm learning that I can see these trials as limitations or opportunities. It's hard on me that my boys have to see their mother in bed instead of caring for them sometimes, but I know it'll teach them compassion and the need to rely on God as their strength. I could wish to be out serving overseas with other missionaries who are passionate about spreading the Gospel, or I could accept and embrace that we need the Gospel to be shared with people right around us, including our nurses, doctors and pharmacists. I struggle sitting on the sidelines when I could be volunteering at events or taking on more responsibilities, but I'm learning that I can be an encouragement and voice of truth to others while sitting on my living room couch.
Almost daily I have to ask myself, do I give in to self pity and hopelessness for what I don't have or do I embrace all the incredible things I do have? I wish I could tell you I always have the right attitude, but it isn't true. There are some days filled with many tears and times of grieving for what I've lost or wont ever have. When those tears fall I'm so thankful for God's unending grace that covers us. He knows my heart and my pain. He knows my desires and capabilities. He knows the path He's laid before me, and I need to rest in that truth, because I know His path has the utmost best in store for me, even if that means heartache on this earth.
My body is weak and sick, but Jesus makes my spirit strong. I'm writing this post in my pjs, on my bed, covered in blankets because I don't have the strength to do anything else today. Today is not a "better" day, but I've decided to not swing from good to bad anymore, because no matter what my body is able to do, through Jesus I can accomplish exactly what He wants me to accomplish. For he has given me everything I need to accomplish what He desires in every season, including day to day life. So instead of feeling good and dreading the next crisis, or being in crisis and longing for the next wellness, I'm going to see every day as an opportunity to obey God, to follow His leading and dwell in His love. Facing the fact that I may never "get better", I choose to be okay with that. Because when we trust that God is good and in control, nothing can steal our joy and purpose, not even a broken body.
Author - Erin
Follower of Jesus, on a journey to glorify God and to advance His Kingdom while battling Chronic Illness in the everyday life. Diagnoses include Lupus, CVID, POTS, IBS, Hemiplegic Migraines and other Autoimmune conditions.