This is a good time for an update on how my body is doing and where my thoughts have been.
MY BODY
I have spent the last month in bed. Really. You may have seen me at church or heard I went to the doctor's office, and I did actually stop by the store a couple times...but all the rest of my time was in bed, recovering from those very outings and basic things like showering or deciding what to eat.
The past week or so, it has taken two days to recover from a shower or bath. Yes, two full days in bed. I feel like I don't even have fumes to run on.
Labs were drawn a few days ago. My doctor said all this stuff I told you can be normal for the diseases I have, but it's worthwhile to see if anything is off balance. We shall see. I have new symptoms that I won't get into today (the short list: ankle popping out, sciatic flare up, left eardrum spasming, worsening sound and light sensitivity, easily overstimulated, bigger personal space bubble, can't talk loud, bruising, plantar foot pain upon standing).
I also started a medication that is causing a lot of candida or yeast die-off in my guts. The first 24 hours caused horrible pain, but it's been better since then (not fatigue-wise though).
On to...
MY THOUGHTS
My doctor asked me an interesting question when I was bawling in her office this week, just not feeling well. I've never bawled to her, but a rush of repressed emotions combined with my symptoms came spilling out with an undertone of impatience and uncertainty.
She asked me this: "If you knew you would be sick this way for the rest of your life...what would you do?"
I had thought a lot on this question before she asked it, and responded. "I think I would just finally accept it. I'd adapt to my abilities, change up how we run things at home a little bit, and totally drop my expectations for myself."
My doctor sat on the edge of her seat eagerly. "You said it," she said. "Acceptance. That is the key." She went on to say what I already thought, what I've already written about, but was still afraid to believe:
"All you can do is accept today. Accept the pain, the nausea, having to be in bed, the sadness, the frustration, whatever the day may be like for you. Just accept it."
Tears dropped down my cheeks, and I felt like a little child asking permission: "....Really? I can DO that?" The prospect was exciting, but didn't feel "good enough" for my perfectionistic tastes.
The reason why I wondered is because I watched "The Secret" documentary long ago. The premise is that feelings or emotions bring about results, positive or negative. I believe that to some degree. I told my doctor that I really wanted to hope and bring about wellness with my energy like that, but I am stuck in reality. I dread bringing about something worse by thinking negatively...or even just realistically.
But my doctor reassured me. "You can accept today and still take five minutes to imagine wellness and vitality." More tears welled up in my eyes as I thought of the dreams I never thought could come true now, and how hoping for them had created so many metaphorical funerals for me to work through in my brain. I think she sensed my hurt, and she quickly added, "But if it is painful for you to assume those feelings, don't! It won't help. Instead, imagine living a life of PEACE."
Again, I asked, "Really?!" I could hardly believe all this validation. It was ok to "take no thought for the morrow;" I finally understood this a bit better. I can do that. But I can't hope for wellness or my old life or level of vitality yet. It's too painful, and I have been disappointed too many times hoping for it.
My doctor's first question has stuck with me and reminded me of this quote by Marjorie Pay Hinckley:
"The trick is to enjoy life. Don't wish away your days, waiting for better ones ahead."
I can accept. And I can assume a feeling of peace. Those have to do with the present, and the present is usually ok. I can do that! This, along with one other step of WORK (which I'll explain) feels doable to me.
ACCEPTANCE
I am moving forward as if things will never change because it spares me pain. Plus, I don't know with certainty that my health will improve.
As I look back at a long string of todays that are now yesterdays, I see a pattern that does not seem to be improving. I face debilitating physical and emotional fatigue, body symptoms, and still those ever-present challenges of food and being almost home-bound. So what shall I do?
First, my husband and children need to know my love. I can't easily do many activities with them. But instead of waiting for "better days" to show love, I can turn off the TV and talk to all of them, invite my children onto my lap, read stories to them, or invite them to visit me for a few minutes on my bed. Maybe we will work up to playing a game on my bed for ten or fifteen minutes. (I really struggle with kid stimulation lately.) I can still cut out my daughter's homework packet materials so she can do them with Daddy. I broke my own rule of "no kids in our bed at night" and asked my daughter to snuggle with me for comfort instead of having her lie on our bedroom couch. That's love and comfort I can give right now while she's little and within my energy level. I say yes to my children more often--not in a spoiling way, but in a "sure, why not?" way. My daughter asked if she could wear a dress up all day, and normally I would have said no; but I saw how it was starting to look tight on her, and it was Saturday, and she had worn a shirt and pants underneath to be modest, anticipating all my usual caveats. I said yes. I tolerate our son's imaginative construction zones where all his stuffed animal friends live, even if they are set up in our dining room or in front of a door. Say yes, I remind myself. Let them be kids and have fun. Don't ruin it with a hailstorm of no's from your sick bed! And for my taller half, kisses, talking, and snuggling always win!
ACCEPTING THE WHEELCHAIR
As part of accepting things as they are, I am thinking about using my wheelchair again. My need for it has grown. The hardest part of wheelchair use for me is admitting I am sick. My invisible illnesses become visible. But in a way, that's really nice too. I might get downward glances or no glances at all (stigma: "don't stare at the person in the wheelchair"). But I don't have to climb stairs. I don't have to suffer sudden drops in blood pressure near as often from a sitting position. And I could stay out longer!!!
I want to get out and do things with my family, but because I'm so tired all the time, we just don't. And it's not bad, hunkering down during the winter and enjoying cozy activities like puzzles and books. But getting out, seeing the fish and game animals at Cabelas, or going to the Bean Museum or BYU, or out to play at a park would sure be fun for all of us.
Previously, I have used my wheelchair for long outings where I can be pushed along, but I may independently start using it for short trips to the store with my kids or for museums and other (flat) wheelchair accessible outings. Otherwise, we're stuck at home. This could be new FREEDOM for us! This could be good for my homebound mind!
I'm just about willing to get my wheelchair spinning again so I can conserve precious energy. I have my gloves ordered so I don't burn myself on the wheel grips again (learned that the hard way--downhill's a killer). It's a big, clunky chair that doesn't fit me, but eh, whatever. It's got wheels. Mobility matters!
So if you see me at at the store strolling around in my groovy wheelchair, I'll try not to default to embarrassment and instead remember that I am not totally able-bodied just now. I'll smile and wave to you and say, "Just trying to conserve energy here! I'm a part-time wheelchair user. Google it. It's a thing!"
CONTINUING TO TAKE ACTION
My doctor was clear on this point. I was instructed to accept today while doing the actions and therapies that lead to wellness. And eventually, I may just find myself well again because I am on the road there.
Marjorie's husband, Gordon B. Hinckley said:
"Get on your knees and pray, then get on your feet and work."
For me, these actions include taking my medications and supplements. I eat good food, use the hyperbaric oxygen chamber twice weekly, and stimulate my immune system with bee venom injections. I get zoned at least once every week. I read enlightening words and take time to ponder. I rest lots (have to!) and am honest about my capabilities. I try to decrease my stress. I am taking other actions to preserve my body's resources so they can be used for healing. I try to live in gratitude. I hardly ever commit to something because I'm unpredictable and it disappoints me when I fall through. Within my abilities, I turn outward and respond to people who need help as much as I can. Usually this is through talking and comparing notes.
IN SHORT...
I don't know what acceptance will look like for me, but it's nice to know I can settle for today and ponder on peace. It's nice to be who I am today, and not pine for the past or future.
I like working toward wellness without having to force it to happen. It will take pride swallowing to own my limitations, but ultimately I think it will be liberating. I am willing to take out my dreams once in awhile and admire for them, but I replace them before pain sets in. It all requires patience. And I guess it's all part of the process.
President Hinckley also said:
"Cultivate an attitude of happiness. Cultivate a spirit of optimism. Walk with faith, rejoicing in the beauties of nature, in the goodness of those you love, in the testimony which you carry in your heart concerning things divine."
With the acceptance I am embracing and the changes I'm making...
...I think I can do that.
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