It’s cold. And changing my antidepressant from Cymbalta (which was helping my fibromyalgia but had quit helping my depression) to Fetzima (vice versa) isn’t helping my grumpy mood any. I have developed strange food cravings (carbs, sugar, and more carbs) and I am frighteningly grateful for cable TV and Law & Order reruns.
Tag: Fibromyalgia
Wordless Wednesday: Lilac Love
Fresh flowers are definitely at the top of the list in my Fibromyalgia Toolkit–especially when they smell as heavenly as lilacs!
Hamster Wheel Syndrome
Do you ever find yourself in a rut?
I know I do, frequently. My addled fibro-fog prone brain doesn’t help matters, either. When I was in graduate school i had the toughest time finishing papers because my mind would just get stuck, and I couldn’t come up with any more ideas; it was as though my brain was a hamster on its little exercise wheel, running, running, running, and getting nowhere–except frustrated and angry. Or even with my photography, as much as I enjoy it, I still sometimes find myself, camera in hand, looking at a bunch of peonies and thinking, “Dammit, how am I supposed to make these look interesting?”
Some wise mentors/friends of mine gave me great advice, which I try to remember to follow, and sometimes actually do recall: Change things up. Get off the hamster wheel. Study for a different class, take a nap (YES!), go for a walk, meditate for a while, play with the pupster, have some ice cream (the last two are my ideas, of course)…whatever. Just get off that darn squeaky wheel.
Apparently burnout/hamster-wheel-syndrome is common amongst creative people too, as photography books and photographer friends of mine have also given me a number of ideas to help me leap off the wheel. One is to experiment, learn something new, like macro photography…or do only flatlays for thirty days…or shoot the same spot outdoors everyday for a month at different times and observe how the light changes, how it looks at different angles, etc. One of my favorites is a group project a talented friend of mine, Susan Licht (Licht Years blog and Licht Years Photography in Boston), does a couple of times a year on Facebook, called a #weekofdiptychs. Diptychs, according to Merriam-Webster, are
- a 2-leaved hinged tablet folding together to protect writing on it waxed surfaces
- a picture or series of pictures (such as an altarpiece) painted or carved on two hinged tablets
- a work made up of two matching parts
So this past week a number of us did spring-themed diptychs and posted them on Facebook. and I have to admit that it rekindled my passion for photography and my creativity, and most of all, despite a nasty fibro flare, I had fun! Our yard is simply glorious at the moment, blossoms exploding all over the place, the scent of lilac everywhere…
Anyway, here are some of my diptychs. If you like photography, I hope you’ll try doing some of your own! (I use the Moldiv app on my iPhone and you can also create templates in the Lightroom print module, as well as in Photoshop.)
the sad times…
I am feeling horribly fragile today, as I have been on most days these last months. Fibromyalgia pain, worsening back and neck pain from arthritis, migraines, foot pain, and depression, a nasty depression relapse that just goes on and on and on…Are my medications not effective any longer? Are changing hormone levels playing a role? Am I getting worse as I get older? Did breaking my foot so badly throw everything off? Or all of the above?
It’s hard to say. But none of my usual self-care strategies seem to be helping anymore. My gratitude journal, guided meditation, walking, losing myself in a good book…all of my long honored tried-and-true comforts are failing me. I’m also having a tough time reaching out to friends because I don’t know what to say.
And part of this, I know, is the ongoing pain of childlessness. The gaping, supperating wound that never heals. It’s always there, a dull ache that crescendos to a roar at times, like around Father’s Day, which is this coming Sunday.
I don’t quite know what to do with so much pain, both physical and emotional. My husband has been wonderfully, incredibly supportive, I have terrific doctors, but it’s as if my usual coping mechanisms have run dry. So all I can do for the moment is to hold on tight to the love I know heals me. From my family, my husband, my God. And force myself to get out of bed every day, to get dressed, to sit out in the backyard with the sun and the flowers and the dog, and hope that eventually healing grace will start to take hold.
Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’
Mary Ann Radmacher
goodbye may
Goodbye May…you’ve been simply lovely, despite the twin evils of fibromyalgia and depression. Tulips, crabapple blossoms, lilacs, lilies of the valley, and peonies galore. Of course Catholics celebrate May as Mary’s month, and for me, May has always been my mom’s month, bittersweet now that she’s gone, since her birthday and Mother’s Day fall so close together. So goodbye to May…and hello June! I’m looking forward to summer flowers (my salvias and lupines are blooming already) and hopefully a photography trip up to the North Shore (of Lake Superior, for all of you non-Minnesotans out there).
What was your favorite part of May?
so what now?
Almost a year ago today, I received my Master of Arts in Theology from St. Catherine University in St. Paul, Minnesota. Actually, to be precise, my degree is a Master of Arts in Theology with a Concentration in Spirituality and a Certificate in Pastoral Theology. It took me six years to get that darn degree, thanks to fibromyalgia, bouts of chronic migraine, neck surgery after a car accident, and a quite nasty depression relapse.
Several things sustained me during this time: My husband’s unfailing support; the help and support of the incredible staff and faculty at St. Kate’s; and my belief that I was called, called by God, to pastoral care as a chaplain. I’d worked as a chaplain at the V.A. one summer in 1997 and for part of the previous summer in Oncology and General Medical-Surgical at a hospital in St. Paul. I loved it, loved it, even on the toughest, most exhausting days.
My fibromyalgia kept getting worse in my twenties and forced me to drop out of graduate school and give up on my dream of becoming a chaplain. But by my late thirties, new medications were definitely easing the fibromyalgia pain and I remember telling my mom, before she died, that I was planning to go back and get my M.A., and she was so pleased!
And so I did. But in the end my pain defeats me again..not just fibromyalgia, but myofascial pain syndrome, multiple problems in my cervical spine, chronic migraines (yes, my Botox shots help, but I still get about ten a month). I can’t even volunteer, because I don’t know whether or not I’ll be well enough on any given day to appear when I say I will.
I’m angry. And frustrated. I’m not sorry I got my degree, because I love theology, and the knowledge and skills I gained, nothing–not even fibromyalgia–can take away from me. But I want so badly to use my degree to make a difference in the world, to help others to feel God’s love and mercy. It is so painful to mourn the loss of a dream…and to attempt to discern what God has in mind to take its place.
tgi spring!
Thank goodness, it’s finally stopped raining here in Minneapolis and although it’s still a wee bit chilly, the sky is blue, the sun is out, my perennials are coming up, and everywhere I look it’s green, green, green! I may be fighting a migraine and a fibro flare–but today spring wins the contest for my soul.
If people did not love one another, I really don’t see what use there would be in having any spring.
Victor Hugo, Les Miserables
fibro frustration
Really, frustration should be listed as one of the symptoms of fibromyalgia. I’m too tired and sore to feel rage, which is what this feeling would morph into if I felt better…although of course my not feeling well is the cause of the frustration, so there you go. Another example of the crazy spirals and cycles this disorder causes. Please excuse me, gentle readers, for giving into the temptation to vent. One of my goals for this blog was to be genuine, which I haven’t been, because I haven’t been honest about my physical or emotional state of health.
I didn’t even write about breaking my foot last October–a break that required two surgeries, thousands of dollars out of pocket, and is still causing me pain. I was stuck in bed for over two months after the break. And all I did was fall in the kitchen! Thanks to the fibro…I have dizzy spells and last summer I actually blacked out a few times. Unfortunately, I was rushing to let the dog in when I fainted this time, and twisted my foot as I fell, which caused a complicated break called a Lisfranc fracture. A fracture which almost always requires surgery. One thing I can say for certain though, is that I have a husband who truly loves me! And a dog who considers it her duty to take care of me whenever I’m sick. Fiona stuck to me like glue the entire eight weeks, while George waited on me hand and foot (excuse the pun).
I finally got back on my feet–both of them–in January, but I had some extremely painful nerve damage in my second toe. Thankfully, that has gone away, perhaps because my anticonvulsant (gabapentin) that I take to control my seizure disorder also helps with neuralgia (a side benefit to seizures I never considered, but actually the same medication helped when I had ongoing pain from the shingles too). The second surgery, which was March 18, was simple, just to take out one of the metal plates from the first surgery, but that too turned out to be unexpectedly painful and to make life even more interesting, I developed a nasty, painful, blistering rash on my upper foot and ankle, on Good Friday no less. Time for antibiotics.
Well, it’s all over but the pain. The pills took care of the rash, my post-op X-rays looked great, my stitches are out. And I should mention that my surgeon was terrific, skilled and kind, as were all of the nurses, anesthesiologists, etc., involved in my care. My surgeon thinks the residual pain in my foot may be due to fibro; I can tell it’s not bone pain, and he did have to move a lot of tissues and nerves around during the surgery to get the plate removed. So fibro makes sense as a cause.
Damned fibro.
I’m also having a nasty, cruel depression relapse (probably partly tied to the fibro and vice versa…don’t you love it) and trouble with anxiety over finances. Major anxiety. I’m looking at filing for relief from my student loans on the basis of total and permanent disability, which makes me cry every time I think about it. And every time I think about the blood and sweat and tears that went into that master’s degree.
Too tired to write anymore. I’ll finish this tomorrow.
unfulfilled potential
Consult not your fears, but your hopes and your dreams. Think not about your frustrations, but about your unfulfilled potential. Concern yourself not with what you tried and failed in, but what is still possible for you to do. (Pope John XXIII)
wordless wednesday
Chronic Grace 