Orchids make a great gift...
Many of you know that the last few weeks have been extremely difficult for me. Last week, Jeffrey took me to my wonderful doctor to get the once over. When things go amiss, I don't usually get worried, I just get irritated. In the 9 years we have been dealing with these issues, I usually know what is wrong and what to expect--this time was no different. I needed to take medications that I usually try to negotiate my way out of taking. As crazy as it sounds, sometimes you have to take something that makes you sicker for the medicine to in fact make you better. So I followed doctors orders; took medications that I have taken before for "flares" and waited to get better. The problem; I pushed myself too hard, too soon and I'm angry with myself.
I didn't listen to this body, to my spirit and wanted to prove to myself... I've got this. And paid the price.
Yesterday, my Beauties 9 and 11 had feelings they don't ever recall feeling; sadly they had, but last time they were just so little their brains have thankfully forgotten. I gave them a medical scare. No one was ever in danger; but they felt what I did... that I wasn't at my best. No mother ever wants to not be at her best and that in itself is scary.
As I write, I'm in bed where I will be even longer than if I hadn't pushed. So today I'm going to pull back the curtain and explain the difference between my baseline and being in a flare.
Our first eight months on the West Coast from DC have been filled with so many great days. What makes chronic disease so difficult is that we are never 100%. Our great days are different from yours; I promise you that. Within my brokenness I have better days and worse. I think many who love us have the misunderstanding of what a good day is. It's within those flawed parameters many of us get our feelings hurt. So let me share mine and maybe in sharing mine you can share yours or use this for conversations with your doctors, friends and family.
I have a baseline, that baseline is what I consider my normal. I accept that my baseline is not perfect, it comes with serious often excruciating pain, fatigue and feeling crummy. My symptoms are managed with medicines that we dial up and down depending on the severity of my symptoms. Within that baseline I have some great days, some good days, and some bad days. This is my life and as a family we live in the baseline; we accept it, have made peace with it and feel comfortable in this normal.
So I have bad days in my baseline, having a bad day means I stay in bed, watch TV and rest. Good days I run errands, make dinner for the family and go to bed happy at 8 pm feeling satisfied and successful. A great day is a good day with a movie or the beach tossed in. All of these days are still filled with pain and discomfort. The pain is tolerated and managed. I can guarantee you that if I have a great day the next day is a PJ or sweats day where I need to take it easy. It's a dance. It takes practice.
On the scale of 1 to 10, 10 being perfect, 1 being well let's not go there--I will never have a day that's a 10. My body is not in the 10 generating business. For me a 10 day, would be a day without pain and to have energy to do a full day of work and activities. I want 7's, would love two hours of an 8. I accept and celebrate a few hours of a seven or an eight on any given day. So that's my goal; how to make the best use of the energy and pain management on a given day. I need to take a siesta everyday if I want to make it to dinner. That means to lie down on my bed for at least an hour maybe two. Everyday needs to have pockets of downtime to recharge. This is my life, my normal, and I'm happy in this place. I take great comfort in this baseline, I recognize to many that it may seem limited; but I'm very happy here. My life is filled with more happiness and joy, I don't want for much, but to enjoy and bask in the great days that we have together.
My baseline changed in May after a simple case of strep throat developed after Norah's third grade field trip. (Let me be clear; I would do that field trip over and over again because third grade field trips are amazing.) I have been battling for months and in the last week...well my body decided it was time to crumble. When my thoracic pain was too intense and I could not find a break from the pain, we move out of our baseline into messy territory, which is a flare.
Flares fucking bite.
A flare for me is when the pain and inflammation is widespread, systematic and unrelenting. In the past a flare also required extended stays in hospital. Now thanks to my amazing medical team, most of my care can be done outpatient and I can sleep in my own bed. I won't call a flare a flare until it's kept me in bed a solid three or four days. The symptoms of this flare I have had many times before. I found myself sleeping sitting up because I was not able to breath in my traditional sleeping position. I was short of breath from walking, and bone crushingly tired. When my lungs and heart get inflamed I like to sit with my back up against a wall. It's as if the house wall is supporting my chest wall. It makes it easier for me to breathe somehow. The house somehow insulates the pain when I take a shallow breath. Harvard, my longtime pulmonologist, would instantly understand my circumstance based solely on my body position when he entered the exam room. I sit very upright, my posture is perfect. If I lean forward the pain is excruciating, if I sit perfectly straight and don't move it's tolerable.
The hardest part of managing chronic disease is you never know how long a flare will overstay its un-welcome. The other problem with a flare is that if you do too much like I did this week, it just sets you back even further from returning to you baseline. What does that mean... ugh, that planning becomes so challenging. Does your spouse cancel his business trip? Do you call someone to stay with you? Do you line up contingency on top of contingency? The mental planning of a chronic disease is exhausting by itself, then you throw a Type A personality on top and it's a hot mess.
I wanted to write this post because it has been so long since I have had a significant flare. We know how to handle these, and we do it as well as anyone can under the circumstances. I'm writing for all the other chronic disease Pilgrims who don't have the support and love that I do. I felt like I needed to walk folks through how flipping hard this cross can be and to shine the light on what you can do to help.
So some parting thoughts... Many of you are so thoughtful with dinners, carpools and visits. Here are some little things to keep in mind:
Don't ask: How we are feeling? Are you better yet? It feels like you are looking at us in a fish bowl. Ask, "is today a good day?" Nothing hurts more than being reminded you "were" doing well. And for goodness sakes; whatever you do, don't ask us if we overdid it to get here. That doesn't help anyone. We know exactly what got us here. Please don't tell us to re-prioritize our schedules. We know that too! We all want the same thing, to be one day closer to our baseline. Please be patient with us. We are spending tons of time trying not to beat ourselves up over what we did to get in this fine mess. And sometimes that "overdoing" you call it, is in fact living. Just sayin!
Tell your loved one that you love them and that you are praying and thinking of them.
Make them laugh... nothing makes me happier than to hear stupid stories when I'm in bed. Trashy gossip magazines and mindless books are wonderful. When you are taking extra meds your brain just hurts and stupid is easy. Orchids are the best floral gift ever; they are stunning, last forever and require no work. It's hard enough to care for yourself much less a beautiful bouquet of flowers that need the water changed. Just last night Jeff took me in my pjs to the beach--I just needed to look at the ocean. That was perfection, I watched the kids pick up shells and I could see, smell and taste the ocean from the passenger seat. So offer to drive the get-away car for a friend, offer your own sofa. After being stuck in your house forever sometimes another venue is delightful.
So there it is, flare vs baseline. Now for everyone reading this that loves me... I know oodles of you are thinking, o'my goodness Kathryn is talking about me. I said the wrong thing. Let me be the first to promise you... that is not the case. I have the best supportive, loving tribe ever. You can't be in my tribe unless you lead with love first, middle and last. You never say anything wrong.
That especially goes for my husband, who absolutely meant the vows, "in sickness and in health" and I'm forever grateful. I love you Jeffrey.
Today I'm one step closer to my baseline, I'm humbled and grateful for all the love, prayers and notes.
The Divine in me bows to the Divine in you.
Kathryn
PilgrimageGal
photo credit:
via