If it wasn't for the cane I use to help with my balance, I doubt most people I meet, or even those with whom I am acquainted, would know that I am sick. Often I have been told, "You look wonderful! You don't look sick at all." There is an unspoken question asked in those seemingly innocuous words: Are you really sick? Although I am certain that they mean to compliment, those words stab a little bit, too. Even my close friends don't know how difficult it is for me to get out of bed, how taking a shower saps my energy for the whole morning, how climbing a flight of stairs can make my knees weak for hours afterward.
My favorite activities are severely limited. I love gardening, but I must limit my time, depending on the particular activity (weeding, planting, digging, etc.) to ten to twenty minutes a day unless I want to spend the next day or two sacked out on the sofa. I used to love walking and hiking with my husband (who has been incredibly patient and understanding through my illness), but now I can walk a few hundred yards and that's it. I used to bicycle all over North Park, and biking in the mountains was an activity I was looking forward to when we moved to Pine Valley, but I was sick and unable to use my bike before spring came around. Long shopping trips and days at Balboa Park, the San Diego Zoo, the Wild Animal Park, Disneyland, etc., require me to use my wheelchair or the electric scooter Keith's aunt gave me when she could no longer use it. Right now even ten minutes on a stationary bike at 5-6 mph is too much for me; I'm trying to build up my endurance by starting at five minutes at 4-5 mph, plus walking to the post office and back (a tenth of a mile), and doing ten minutes of light gardening a day, all these activities spread out across morning, afternoon, and evening so I have time to recover in between.
One of the very best explanations of what I go through each day with whatever-it-is that I have, diagnosed by various doctors as fibromyalgia, rheumatoid arthritis, chronic fatigue syndrome, is the Spoon Theory. I first read it years ago, and a church friend, Sandi, just reposted it for me on Facebook. You may read it here:
SPOON THEORY
I try not to dwell on what I can't do (I can't help it sometimes, and it is frustrating) and focus instead on what I can do. I can pray. I can read. I can write, although I need to monitor my time on the computer or I have additional neck, upper back, and shoulder pain that breaks through my dosage of pain meds (40 mg methadone morning and evening).
I can cuddle my kids but miss playing with them physically. Timothy, 14, mentioned last Friday as I put-putted around the Wild Animal Park on my scooter that he "misses the fun Mom" I used to be, playing badminton and volleyball with them, biking and skating, hiking and running. However, the younger two boys don't remember me when I was "normal." I'm not sure which is worse.
So what helps me through all of this? Around the same time as I had to place my kids in school for a year at the insistence of both of my doctors (that's another long story), God led me to a conservative Anglican Church for weekday healing services. The silence of the service without music, the peace of praying Scripture and ancient prayers, the celebration of the Church Year, the Communion of the Eucharist, and the laying on of hands as the priest prayed over me gave me the willpower and strength to persevere through the pain, exhaustion, and the emotional and financial turmoil resulting from my illness. I still attend these Friday morning services each week and still feel the Holy Spirit strengthening me as Father Acker prays:
My favorite activities are severely limited. I love gardening, but I must limit my time, depending on the particular activity (weeding, planting, digging, etc.) to ten to twenty minutes a day unless I want to spend the next day or two sacked out on the sofa. I used to love walking and hiking with my husband (who has been incredibly patient and understanding through my illness), but now I can walk a few hundred yards and that's it. I used to bicycle all over North Park, and biking in the mountains was an activity I was looking forward to when we moved to Pine Valley, but I was sick and unable to use my bike before spring came around. Long shopping trips and days at Balboa Park, the San Diego Zoo, the Wild Animal Park, Disneyland, etc., require me to use my wheelchair or the electric scooter Keith's aunt gave me when she could no longer use it. Right now even ten minutes on a stationary bike at 5-6 mph is too much for me; I'm trying to build up my endurance by starting at five minutes at 4-5 mph, plus walking to the post office and back (a tenth of a mile), and doing ten minutes of light gardening a day, all these activities spread out across morning, afternoon, and evening so I have time to recover in between.
One of the very best explanations of what I go through each day with whatever-it-is that I have, diagnosed by various doctors as fibromyalgia, rheumatoid arthritis, chronic fatigue syndrome, is the Spoon Theory. I first read it years ago, and a church friend, Sandi, just reposted it for me on Facebook. You may read it here:
SPOON THEORY
I try not to dwell on what I can't do (I can't help it sometimes, and it is frustrating) and focus instead on what I can do. I can pray. I can read. I can write, although I need to monitor my time on the computer or I have additional neck, upper back, and shoulder pain that breaks through my dosage of pain meds (40 mg methadone morning and evening).
I can cuddle my kids but miss playing with them physically. Timothy, 14, mentioned last Friday as I put-putted around the Wild Animal Park on my scooter that he "misses the fun Mom" I used to be, playing badminton and volleyball with them, biking and skating, hiking and running. However, the younger two boys don't remember me when I was "normal." I'm not sure which is worse.
So what helps me through all of this? Around the same time as I had to place my kids in school for a year at the insistence of both of my doctors (that's another long story), God led me to a conservative Anglican Church for weekday healing services. The silence of the service without music, the peace of praying Scripture and ancient prayers, the celebration of the Church Year, the Communion of the Eucharist, and the laying on of hands as the priest prayed over me gave me the willpower and strength to persevere through the pain, exhaustion, and the emotional and financial turmoil resulting from my illness. I still attend these Friday morning services each week and still feel the Holy Spirit strengthening me as Father Acker prays:
"Susanne, I lay my hands upon you in the Name of the Father, and of the Son, and of the Holy Spirit, beseeching our Lord Jesus Christ to sustain you with His presence, to drive away all sickness of body and spirit, and to give you that victory of life and peace which will enable you to serve Him both now and evermore. Amen."During and after these services, I feel God's peace filling me, enabling me to soldier on despite what I am unable to do, able to focus on what I can do. And that, indeed, is the grace and love of God in Christ Jesus my Lord.
7 comments:
Thank you so much Susanne for posting this story - I have never heard it before x.
I was thinking of you also, Jane, when I posted it. Take care, dear!
Thank you for your lovely encouraging comment on my weblog, because it meant I had the opportunity to come and read yours!
I too have fibromyalgia/chronic fatigue syndrome, and the most frustrating thing for me is that no one else takes it seriously, so I tend to forget I have a real illness, diagnosed by a real specialist. I am not as unwell as you, and I don't take medication, thank God, but it was only yesterday I had a powerful reminder of how debilitating this condition can be. My dd misses her "fun mum" too. So you have my empathy and my wishes for your improved health.
Dear Suzanne! (I had to fix my typos)
I am so glad you shared this. I work in a very public place in a very open office (visibly) and everyone says "you look fine!" not knowing what it feels like to live with the chronic pain of degenerative osteo arthritis. Medicines have made me groggy, forgetful and unbalanced physically so I tend to fall - which is not good. I dislocate and fracture easily and have often been at the center of jokes and remarks that stab like a knife! "...what is left to operate on?" Do you set off the metal detectors at the airport?" "Doesn't it feel like it's the scars that are holding your body together?"
I smile and say yes to just about any of the silly questions that people toss out because they cannot fathom that kind of pain. Getting out of bed is a chore. If I can sleep it is often almost impossible to wake and get moving.
Yes, the crutches are scary - I have the super crutches that wrap around your arms. Normal crutches hurt the scar under my arm from one of my dislocation surgeries.
I am currently writing a book/memoir called "Sick and Ugly" and in the work I address the sad problem and practice of the "world" and Christian community who sees one as damaged, untelligent and less blessed or abandoned by God because of the constant suffering and missing beauty that says you are favored of God. It is difficult to write but is so painfully honest that I believe the reader will be more uncomfortable when they realize they too have made the same judgments.
All this to say I understand and must seek the Lord constantly to keep going.
You encourage me!
Thank you for your writing and faithfulness to raise your voice.
Rachel M.
Wow, Rachel -- you blow me away with your story! Yes, getting out of bed is the hardest thing to do each day, or at least getting out without crying! I would love to read your memoir. Part of what attracts me to the liturgical churches is their view on suffering. At times the evangelical community shuns those who are chronically ill or in pain. I have been told by different people that I'm "not spiritual enough" or am "not praying enough" or that I "must be living in sin" since God hasn't healed me yet. The "name it and claim it" contingency gets down on me, and I think it just rubs salt in already tender wounds.
However, the Catholic and liturgical view of suffering is that it is to be done for God's glory, that it is a special calling that glorifies Him if we are indeed depending upon Him for our every movement. That view gets me through my day -- that my suffering may be for another person's benefit, that a non-believer may see us and think "How does she get through her day?" and we then have the perfect answer: through the strength of a God who saves.
Blessings upon you, dear Rachel! And to Sarah as well -- I had no idea that you also suffered from fibromyalgia/CFS. God bless!
Susanne :)
You made me want to cry - for I can relate to the physical experiences, and I too, turned to God to get me through.
I checked back on your blog because I loved your husband's stained glass, we homeschool too, and your spiritual references intrigue me. I'm Catholic with Evangelical friends. Now I find your health struggles are similar but worse than mine. (I'm not on Methadone - wow, that's powerful stuff). Blessings to you, and you will be in my prayers.
Thank you for coming back and commenting, Lisa. I'm rather an Evangelical with many Catholic friends! :) I have a newer photo of the stained glass window that I will post over the weekend - it's standing up with the light coming through. It's really lovely - much better than the photo I posted earlier this week.
Yes, the methadone is powerful stuff. I was on fentanyl patches for a couple of years, but the methadone works better and is a fraction of the cost. Let me know what's going on with you physically, too -- I'll add you to my "chrinic pain prayer list." Thanks for the prayers, Lisa.
Susanne :)
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