May is Lyme Disease Awareness Month
Lyme is the most prevalent vector-borne disease and one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
The LymeDiseaseAwareness series will be eclectic including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
We hope you'll all join us in learning about this rampant disease and the medical/industrial/political morass in which Lyme patients find themselves.
The LymeDiseaseAwareness Team
Today's diary by: UnaSpenser
Anybody with a chronic condition that includes pain, exhaustion or any of a plethora of debilitating symptoms has to face what may be the most challenging aspect of all: the relentlessness of it.
It's ruthless, being plagued by these things constantly. For me, after 42 years of being strong, healthy, independent and resourceful, it's been a long, slow path to settling into what my life has become. I'm 46 now and still learning how to come to terms with this situation. What that entails are waves of emotional states, particularly depression. So, how do you face each day? What do you do to help you get through the symptoms and process the emotions, find peace and keep on fighting?
It's different for each of us. I'll talk here about my coping mechanisms, will share some tips from the book "Coping with Lyme Disease" by Denise Lang, and ask you to share your own methods in the comments section.
When I went to write a list, my first shot at it looked like this:
meditation
distraction - books, movies, internet
enjoy watching my daughter grow
service
- worked on Obama's campaign
- began doing Lyme advocacy
- helped launch Kossacks Networking
- am launching daughter's idea for her friends to raise money for kids in El Salvador
- continue to host knitting community
- teach
have treats
allow myself to be cranky
nurture social support system
sing
knit
write
sleep
Of course, they didn't accumulate in quite that order. Distraction was probably the first mechanism that kicked in. That's because, at first I didn't really understand what was going on. Didn't realize I was "sick". So, I was trying to just 'keep on keeping on'. Which is really more like ignoring my body signals and pretending I was okay. But by continuing to do all that I used to do, I was also distracting myself. Now, I simply own up to the fact that I need a lot of distraction. That is sometimes possible via focusing my energies outward and doing things for others. Other times, I'm simply not capable of that and I had to learn to allow myself the "luxury" of getting lost in entertainment.
For a while that meant reading and watching movies. I love both of those things, so one would think I could just while my life away with them. However, I found that I needed more purpose in life to avoid a plummeting sense of self-worth. It can be hard to find ways to feel useful when you're unreliably functional. I can seem fine one day and then be unable to walk, or to manage a conversation for several days. So, any activities I pursue have to have a lot of flexibility regarding deadlines, etc.
One thing that comes naturally is enjoying my daughter. She's a treasure. She's a very loving, self-determined, creative, willful, physically active girl. She's articulate and funny and infuriating. Every day she wows me. For her alone, I would endure whatever it takes to live with and/or cure this disease. The unfolding of her as a person is a thing to behold and it lights up my life. I know that if I can't do anything else in this world, she is my most important offering. Take everything else away, a life with only her would be well worth living, no matter the challenges. Who else is going to tell me, regardless of the fact that I'm so debilitated, that I'm the best mother in the world? Who else would have introduced me to the world of circus arts and regaled me with her trapeze moves? Who else would ask me to read in-depth analysis of "Spirited Away" to her? Who else would compel me to be the best that I can be, so that she will be the best that she can be? I am so blessed.
I try not to be hard on myself about how much sleep I need. Or that I might just have to stop and nap at any moment. I used to be the uber-sleeper. I could lay me head down and be asleep within minutes. I'd wake up almost exactly eight hours later, with nary a rumple in the bed, having had magnificent dreams, and feeling raring to go for a brand new day. Those days are gone.
Now, I lay down to sleep and those symptoms I've been distracting myself from all day call in their attention chits. I won't spell them out here. Suffice it to say, they keep me awake. It can take hours to overcome the sensory overload and fall into oblivion. Then, even if I sleep 8, 10, 12 hours, I don't wake up rested.
So, to cope in the morning, I meditate. As I awaken, before opening my eyes, I take a symptom inventory, trying to just note, "yep, feet burning. ears screeching, hips aching, not sure what day it is...." Next, I focus on breathing. Gentle deep breaths. Trying to get my breath to move through my entire body, smoothing away as much as I can. I think about what I look forward to that day: seeing my daughter, the greeting of my dog, enjoying the garden, or the walk in the Arboretum. I do this until the pains and the brain fog abate enough that i can sit up and walk. Some days this takes 20 minutes. Some days it takes hours.
Over time, I've realized I need soul-nurturing activities more than ever. So, I've added back activities that I dropped in my efforts to scale back my life. I'm exercising again. And singing.
Now, I ask myself, "How could I have stopped singing?" Singing is praying twice. There is nothing quite so compelling for me. To generate a tone, a melody, a harmony. To feel it in my body, to make music with others. For others. Making music is magical. Even if my body feels worse, I feel better. I manage my energy expenditure to make sure I can fit this in.
I can't knit very much anymore because of the pain in my fingers and wrists. Still, even if it's just a row or two, it's worth those few moments to experience the transformation of unserviceable string into wearable form. The drawing up of loops onto needles. The patterns. The rhythm. The creative visions. I can't seem to give it up, even though I'm not really accomplishing much.
Being forced into a low-stimulus, low-stress, low-mobility life has brought out the writer in me. I'm not sure where I'm going with the writing, but I try to write as much as I can. Whether it's letters to my Congressman, diaries here or posts at PNN, I'm writing all the time. I've latched onto writing on a subject I never would have predicted: musing about the Anglo-Saxon obsession with vampire stories. Talk about distracting oneself! Now, I must constantly delve into the fantasy worlds of vampire novels and films. Perhaps, I'm drawn to the concept of life after death. After all, the life I had is dead and gone. Who knows what my life will be like after I rise from this illness. I'm pretty sure it will be full of more passion.
I have a novel in my head. I've yet to figure out how to move that to fruition. I've never written fiction. I haven't overcome my inner voice that says, "You're kidding, right? What makes you think you'd be any good at that?!" Still, I imagine I'll get there someday. I seem to have plenty of time.
Or, I should have plenty of time. For a woman who is supposed to be resting, de-stressing and focusing on her health, my plate seems full. Of course, my plate is not the entree size any more. It's barely the appetizer size. Still, I find myself struggling to do all that I "need" to do. That's because, as a sufferer of persistent advanced neurologic Lyme, I can't get the medical care I need (read our other diaries for explanation.) I could either roll over and let the disease progress as it will, or I can fight. So, I've joined the voices of those crying out for the needs of the Lyme community. What does that involve:
- writing Lyme Awareness diaries here and elsewhere
- helping coordinate a Netroots Nation panel on the need of political action
- creating a local group to promote and plan showings of the documentory Under Our Skin, with receptions and panel discussions
- lobbying state and federal legislators for bills to fund Lyme research and to protect doctors who try to treat patients with persistent cases.
- education myself on the research, industry and politics of Lyme
Service work can't be solely self-serving. My daughter had her own idea for charitable action. She requested that I help her organize her friends to sell art in order to raise funds to help kids in remote sections of El Salvador get an education. It's taken me a while, but I've finally gotten around to launching that effort. It feels good to focus on something that really has nothing to do with me and can have such a profound impact on the lives of others. It's also daunting to imagine maintaining the energy needed to keep it moving forward.
While some of these things might seem 'wise', they really all can be seen as distractions. Or meditations, I suppose. Then there are the less than admirable mechanisms.
Sometimes I just have to allow myself to be cranky. To complain about whatever irks me at the moment. It's not pretty. I don't like seeming unappreciative, for instance, when I'm annoyed about finding only peach yogurt in the fridge. I hate peach. Where are the blueberry or raspberry or vanilla flavors that I love? Why can't we just stick with the things I like, for pete's sake?
Of course, I'm not the one doing the shopping. Or the cooking. Still, there are days when I just need to grumble about every little thing. I can be an annoying twit. Hey, you try living every day where your skin hurts, you have stabbing pains in your feet and your ears, you can't hold a knife and fork anymore, you get lost going to the bathroom. Wah, wah, wah. It's my pity-party and I'll whine if I want to. Yeah, it's not attractive. What can I say?
Something I was late in realizing, as it was not a strong point when I was healthy, was that I needed to nurture my social support network. What I wanted to do was crawl into a cave and not come out until I was my fully-functional, fabulous self again. I don't like people to see me when I'm symptomatic. Particularly when the cognitive stuff is in high gear. I don't like to be needy. And I'm terrible at asking for help.
Yet, I need help. I can't drive, for instance. I need rides to medical appointments. So, I had to force myself to start asking. At first, this meant I got comfortable with a couple of people and would ask them for everything. Then I felt like a burden and would stop. Eventually, I discovered the LotsaHelpingHands online service. What a life saver! I can invite my friends to join my network. Then I post my needs and they can see each other signing up to help out.
I use the site to update my friends and family all at one time. They can communicate back and with each other, if need be. It has really increased the number of people I interact with on an ongoing basis. That time in the car is social time. And we might stop for a cuppa on the way home. I get to hear what's going on their lives and offer an attentive ear. Sometimes, I can even find ways to help people with things. I can research info for them, for instance. I look for ways to feel like the relationship is not a one-way street.
This dependence on a social network is new to me. I was an Air Force Brat who moved a lot and kept on flitting around right through my 20s. So, I never really experienced community until recently. It's a work in progress for me, but ironically, for the first time in my life, I don't feel alone in the world. That alone, will stave off despair. Though, I haven't known what it meant to be in community, I've always been gregarious. So, the isolation of sitting at home alone for years can drive me into depression. By continuing to host a knitting community in my home studio, using the online tool to coordinate help from my friends and by reaching out to others through writing on social sites, I manage to keep that aspect of despair at bay.
Then there are the little things like chocolate and cookies. I've been a whole food eater for 25 years. For many, I was a tee-totaler when it came to refined sugar. Or refined anything. I love my kale and my collards. Nothing more satisfying than a healthy meal. As I've faced living with Lyme, I have tried very restrictive diets guided by a naturopath and then an MD trying to see if I had food sensitivities. Nothing done through diet created any symptomatic improvement, so I decided that I'm allowed my treats. My favorite cookies are from Pamela's and they're predominantly gluten and dairy free, so they're not that big of an indulgence, I suppose. Chocolate on the other hand. Well, I'm eating my chocolate and I dare you to try and stop me. It's something to look forward to. (Add that to the morning meditation list!) And for those few moments, I can delve into the pleasurable sensation of it and forget those nagging aches and pains. There's nothing like good quality dark chocolate with nuts and cherries!
So, there you have it. I try to do what I can, but I accept that I can't do much. I pursue a couple of passions and allow myself some indulgences. And I forgive myself for being lazy and downright cranky at times.
In "Coping with Lyme Disease" by Denise Lang, she suggests that you EDIT your life to help you cope. That is:
Enjoy your loved ones, friends and activities that light a passion in you
Distract yourself, particularly by doing things for others.
Inform yourself
Take pride in your appearance, your healthy eating and any exercise that you do.
So, how about you? What are your coping mechanisms?