I post a lot of photos of my knitting, crochet, quilting and painting on Instagram. If you judged my life by my Instagram posts, one would think my life was one dimensional…but it is not. My caregiving blog also seems one dimensional…as does my self care blog. All three sites are simply focused on particular subject matter. And my life is far more complex than any of the sites…especially lately.
I am part of the sandwich generation. Things fall apart and require repair. People get sick (myself included)…some people get very sick. I could go on but I will spare you. ❤
Yet I can pick up a pair of knitting needles, knit for a few minutes, and become present and mindful and peaceful. As Adrienne Martini facetiously writes in her book, Sweater Quest, knitting has “taught me to deal with frustration so acute that I’d want to bite off the head of a kitten.” 🙂 I can relate…and seriously…it helps so much.
As for my husband, music and hiking are ways to make sense of it all. Sewing, music poetry, photography and art bring our daughters that sense of peace.
We can find ways to practice self care and put beauty in the world…filling it with color, hope, connection, purpose, self-expression and joy…and it matters.
Our younger daughter entered her first art show our the local community college where she has been taking one class each semester. (One of her drawings was included in an exhibit in our airport when she was thirteen years old. But this is her first since her illness presented.)
She has reached a milestone.
She has come so far.
Art is such an important part of the equation when it comes to managing a chronic severe brain illness.
Her older sister and three of her dearest friends attended the art show with her.
Our hearts are full. ♡
When I first started researching issues I was having with my particular restrictive lung disease just over a year ago, I searched for clinical studies/results hoping for a better prognosis and eventually came across this video. I spoke with my pulmonologist about Dr. Esselstyn’s nutrition plan. My pulmonologist gave me a thumbs up and I started following Dr. Esselstyn’s whole food plant based plan while being compliant with him and my other doctors as well.
I introduced myself to Kate shortly afterward, who eventually introduced me to Dr. Esselstyn (so grateful for his phone call), because my labs and results from tests were improving. I wanted her to know how much I appreciated her video.
My health should be progressively failing.
It is not.
My health is progressively improving…even more so since sharing this article. I will be sharing more in May.
Just over a year ago, one of my goals was to walk up and down our hall five times without having to stop and rest (without a cane). It took a few weeks to reach that goal. This led to another goal of returning to the gym, with permission from my pulmonologist, which I was able to do in July of 2018. He gave me permission early that morning and I went to the gym that afternoon.
My first goal was ten minutes on the recumbent cross trainer at a the lowest setting adding a couple of minutes each week. I am now at thirty-eight minutes starting at the middle setting and spending five of those thirty-eight minutes at the highest setting. I am currently waiting for a medical release to take on more exercise with a trainer who specializes in pulmonary/cardiac therapy.
I also try to do as much as I am capable of doing. I may not be able to tackle our weekly trip to the grocery store on my own. But I can go weekly grocery shopping with my husband and participate with his help. I can do a number of household chores ten minutes at a time. I can slowly but surely do more and more.
I could use my blog to share the challenging aspects of systemic lupus erythematosus and restrictive lung disease (and, yes, there are challenges), but I choose to share what is possible. Because of people like Kate, sharing her experience working with Dr. Esselstyn, I knew I was not my prognosis.
As for myself, I know that if I build upon nutrition and exercise routines, even when some days are especially challenging, I will move forward or at least maintain my current health. I know that if I do what I am capable of doing I can eventually take on more and more household responsibilities. I encourage the same approach as a caregiver.
Medical compliance, nutrition, exercise, mindfulness, purpose, passion, rest and recuperation…an integrative approach makes such a difference.
I am not my prognosis. I am not my illness.
I am Gayle and I am moving forward.
I recall one afternoon a few years ago. I had just spent about an hour helping our younger daughter through a rough episode. As she slowly drifted to sleep, I left the bedroom where she rested, sat down in the living room, and the person I was visiting at the time sat next to me and proclaimed, “My turn!”
I had a space in which to breathe, if only for 10 minutes, but she had needs…a personal agenda…and wanted to take full advantage of my time.
A “how are you holding up” or “may I get you a glass of water” or even silence for just a few minutes would have been appreciated.
No…those pockets of time are also my turn.
I don’t mind sharing that turn if the people I am with are working toward actively improving their lives. I also expect those in my care to do what they are fully capable of doing themselves. I will not enable.
But I do not want to be assigned the label of caregiver to all. I will share in the responsibility. I have no aversion to it. But I am not the official designated caregiver.
I am more than a “my turn” person.
As these pockets of time open in my life, I have dreams I have kept alive (embers) that I would like to attend to as well. I also want to celebrate the tremendous growth my family has made…stronger…together and as individuals. I want to celebrate friendships that have flourished. I want to celebrate milestones I have reached in my own health recovery.
And I especially want to reignite my dreams…
Today’s post from my caregiving blog. The same holds true for self care and teaching people how to treat us…sometimes self care is less about spa treatments and shopping sprees…sometimes it’s more about pushing through, saying yes, saying no, holding on, letting go, setting boundaries…everything that initially makes us anxious but lets in the light. alleviates suffering, and clears the way.
“Let’s abandon our worse case scenario expectations–they won’t make life’s disappointments hurt any less; they will only limit the chances of seeing unexpected beauty along the journey and deprive us of profound peace in the end.” ~ Rachel Macy Stafford
Yes, I often wake up around two o’clock in the morning and think of the enormity of it all. Yes, I cry. Yes, I grieve. And I pray…oh boy, do I pray.
But I have faith…I know…deep in my heart…that if we take manageable steps toward hope and wholeness every single day, there are so many opportunities and possibilities for growth and recovery.
And we, as caregivers, are required to change, adapt, and challenge ourselves first and foremost. When we change course, it encourages those in our care and provides an opportunity to change course and grow as well. It’s not easy…it’s a bumpy road…there may very well be resistance…but it is necessary…
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This post from my caregiving blog is important to those of us practicing self care and managing chronic illnesses…it is so important to participate in life to the best of our ability. ❤
This is such an important video which emphasizes the importance of an integrative approach to severe brain illness recovery.
It is important to be compliant with doctors and therapeutic treatment. It is important to exercise. It is important to eat nutritious meals. It is important to participate in a non-segregated life as fully as possible…to maintain friendships…to volunteer or work if possible…to stay connected…to have a sense of purpose…all to the best of our ability…all one step at a time.
It’s interesting. I recently had a conversation with a relative who assumed that, as a caregiver, I sat at home all day while our younger daughter stayed in her room. I explained that was not the case at all.
Our daughter had a very challenging day with symptoms yesterday. It has been a challenging week. But she showered and got dressed as she does each morning.
She helped me with…
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Set and example…put the phone away. ❤
I was sitting in a coffee house last week during one of our younger daughter’s appointments. It was very quiet despite the fact that several groups of people were sitting together at the tables. I noticed one group…three young men and two young women in their twenties…no conversation except to occasionally lift their iPhone and share something interesting now and again.
I watched as a young man order his coffee while scrolling through his phone without making eye contact with the young man at the cash register…another ordered while talking on his phone…barely acknowledging the human being behind the counter.
The only groups of people engaged in conversation that rainy afternoon happened to be an older couple at one table, two older female friends at another table and two younger employees working at the counter. One of the young woman who worked at the coffee house stopped and initiated a short conversation…
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