Breathing issues wear me out. I love long conversations, emotionally, but I get so tired that I quit and often leave a conversation unsatisfied. I’m forming a thesis that says that whatever was once true of the body’s ability to work, rest and repair is no longer true. The “use it or lose it “ dictate no longer applies. I’ve never been idle but this evil monster has made me so, leaving me willing to watch tv instead of reading, making music or thinking. Every physical effort that I put out must be planned and measured carefully, or I am absolutely flattened with fatigue, tremor, brain fog and overall physical instability. I know Parkinson patients live well with levodopa and regular exercise. It’s not true for us, sadly.
That’s the hardest part: All the rules have changed. I never know if my body will relax enough to sleep, hold me up to walk or even turn the page, if I manage to hold a book. Some days I can’t open my eyes in the morning! Yes, I mean cannot! My half-open eyes make me look like I’m in a tortured sleep all day when combined with tremors and movements that make no sense. Sometimes my mouth hangs open and I only become aware of it when I suddenly choke and cough from dryness that settles so deeply in my throat that I can’t swallow. Then I am frightened by the struggle to simply breathe.
This is isolating and humiliating to the max. I need to know how to maintain dignity. Being ground down socially and emotionally makes the grind of the Monster CBD on the body painful and debilitating. It’s relentless. And that’s just the physical part.
Sadly, though the world talks the talk of caring for the vulnerable, they don’t come through for us. We are on our own with no treatment and no cure. Then the social and emotional damage is done and there is no fix. We suffer the depths of psychological and spiritual struggle. We are left to our own devices.
My husband is a good and godly man. He is loyal, loving and kind, and will always care for me. Even being in The Best category of humans he cannot possibly walk this road with me. He may catch a glimpse now and then of the depth of my suffering and step in for a bit, but unless I cry (I can't cry most of the time - insufficient air, breath control - and what stands in for crying resembles nothing i've ever heard, it hurts and is frightening, so I don’t go there often) he doesn't understand how intensely affected I am. He guesses but since Monster CBD has no manual that he can pick up at the corner store, he can't relate. Sympathy and pity aggravate my spirit. We need people to help bear the burden, empathise, right? I do, anyway.
Where does our help come from?
“My help comes from the Lord, who made heaven and earth.”
Psalm 121:2 ESV
He knows the depth of my grief and sorrow. “He is ....a man of sorrows and acquainted with grief.” Isaiah 53:3 ESV
He knows how useless I feel, and promises that “I can do all things through him who strengthens me.”
Philippians 4:13 ESV
He knows I was not done doing the work He gave me to do and I know that “whether I eat or drink, or whatever I do, I’m to do all to the glory of God.”
1 Corinthians 10:31 ESV
He understands the pain, disability and wasting of my physical body and “out of my distress I call on the Lord; the Lord answers me and sets me free.”
Psalm 118:5
I rejoice! “He who keeps Israel (and me) will neither slumber nor sleep.”
Psalm 121:4
He knows! He “is able to save to the uttermost those who draw near to God through him, since he always lives to make intercession for them.” That includes me!
Hebrews 7:25 ESV
He knows me by name, loves me and promises me eternity with Him.
He’s given me 66 books to explain 1 verse: “For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.”
John 3:16 ESV
I am not afraid. When I am, “I put my trust in Him” Psalm 56:3
If writing this offends you, I understand, and know that you wanted me to stop talking a while back. You may be angry, afraid or apathetic in response to the Monster CBD. It’s not church, after all. But I must speak.
If we were face to face I would say the same thing:
but you would see the smile on my face, know the compassion I have for you and feel the gentle hug (even in Covid). Please. I beg you:
“Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.”
Hebrews 4:16
“In him we live and move and have our being ...For we are indeed his offspring.’”
Acts 17:28 ESV
Praise God
