Friday, August 14, 2015

The "Spoon Theory" of Chronic Illness

Re-post from the Archives with a few recent additions....

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 me, those words stab my heart 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 can sap 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 exhausted 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 only a few hundred yards...a little more on occasion. When we lived in San Diego, I used to bicycle all over North Park on a daily basis, and biking in the mountains was an activity I was looking forward to when we moved to Pine Valley. Unfortunately, I was sick and unable to use my bike before spring came around after we moved in September. Long shopping trips and days at Balboa Park, the San Diego Zoo, the Wild Animal Park, Disneyland, etc., require me to use a wheelchair. Right now I've been able to build up to an hour on the stationary bike at 7-8 mph (no tension), walking to the post office and back (a tenth of a mile), and ten minutes of light gardening a day. I have to spread all these activities throughout morning, afternoon, and evening so that 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 I recently saw it making the rounds once again on Facebook. You may read it here:

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. I can teach..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 feel that my older kids grew up "missing the fun Mom" I used to be when I played badminton and volleyball with them and took 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? Ten years ago, God led me to a conservative Anglican Church (Reformed Episcopal), Alpine Anglican Church of the Blessed Trinity 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 and anointing with oil as the priest prays over me gives 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.

And during this time of trial now in its fourteenth year, I have learned to really pray. And by that, I mean not just rattling off a "grocery-list" of prayer requests for family, friends, and self, but I've learned to truly worship, mostly through praying through the Scriptures with the resources I mentioned in last Saturday's post. I also have Anglican prayer beads which can be used in many different ways and which I use to pray Scripture and for the needs of family and friends. Having something in my hands while I pray, making it a physical act in addition to a mental/heart/soul act, keeps me focused and deeply in prayer.

Now I see our oldest struggling with chronic fatigue and our second oldest suffering with chronic pain, and all three of us have been diagnosed with different genetic mutations that are at the root of our fatigue and pain. We have an amazing Christian osteopath who keeps us on track and insists that we each have an artistic outlet to release stress and build us up emotionally. We've been prayed over by elders, pastors, and missionaries; we've been anointed with oil, and we haven't yet been healed. Do I believe that God CAN heal us? Definitely! Do I believe that God WILL heal us? Definitely! He will do so in His timing, and in the meanwhile, we learn to depend on Him, not in ourselves. God will heal us in His perfect timing, and we shall grow in faith, hope, and love while we wait.

In His Grace, this day and always,

No comments:


Blog Widget by LinkWithin