A friend of mine who was diagnosed with breast cancer at the age of 32 (currently cancer-free, wahoo!) posted an article this week and I keep thinking about it. The article resonated with me in so many ways and I thought I would share some of that with you all.
I'm at the tail-end of a three-month long lupus flare. Three months of excessive fatigue, constant fevers, and pain wherever there is connective tissue. A round of IV steroids at the end of February helped settle the joint pain and inflammation. A series of acupuncture appointments this month have broken the fever cycle (officially fever-free for a whole week!). And my energy is returning! Praise the Lord!
The last three months and the article got me thinking about the periods of time between flares/onsets of new symptoms, the In-Betweens, as I've decided to call them.
For me, the In-Betweens are characterized by a renewal to engage with my friends and family, to throw off the isolation that a flare can bring. To get caught up on life. Projects, outings, working out. The In-Betweens strive to be normal, to be light-hearted, able to chat about less heavy issues than sickness, meds, IVs, doctors, insurance companies that give you the run-around, etc. The In-Betweens are a time to thank the people that helped me out, that brought meals to my house because I was too tired to drive to the grocery store, people who offered to come clean my house because just looking at the vacuum cleaner could bring on tears of discouragement with the realization that pushing the vacuum just hurt too much.
The In-Betweens are a fragile walk between embracing wellness and fear of the next flare. That swollen joint one morning "is this a flare?" The elevated temperature one evening "is this a flare?" The In-Betweens are an exercise in wisdom: what project do I start that I know I can finish quickly in case I start flaring again? Is it worth it to try and sign up for a race, not knowing if I will be able to complete the training? Is it okay to hang out with my friends so late, with an early morning the next day, will that trigger a flare? Is it okay to eat that- it might cause my stomach pain to worsen, would that stress trigger a flare?
The In-Betweens are a time of feeling older beyond my years, of fighting against feeling like a "Debbie Downer" because so much of recent activity is characterized by things most people are uncomfortable with talking about, because people are "fixers" and this stuff isn't fixable. And that recent activity gives me a different perspective on daily things - an equanimity when it comes to potential drama (mostly ;-) ), an easy weeding out of the battles to be fought (again, mostly :) ). It can be a struggle at times to relate to people, especially right after a flare.
The article talks about how young people with cancer can feel cheated. Chronic illness is very different from cancer, but I think there are similarities when it comes to emotional struggles and some of the life-changes that have to be made to accommodate something you don't want to accommodate. I was so encouraged to hear about the support groups that exist for young people with cancer. In talking with my friend, I found out that she is in training to become a mentor to other young women with cancer. It made me start thinking about if there are support groups for young people with chronic illness. Yes, there is a lupus support group here locally (I get the emails), but there is a difference of being ill when young and being ill in your 50s and 60s, and this article discusses this very well. And, I love to see people reaching out to one another in their pain and suffering, helping others deal with their suffering, to help lighten the load.
"who (God) comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God" - 2 Corinthians 1:4
I pray that the Lord will use my sharing of The In-Betweens to help those who are walking with someone who is suffering, or someone who is suffering. I pray that I will live out 2 Corinthians 1:4.