I found this quote on Tumblr and immediately had to make a simple text image out of it. The original source is listed at the bottom of the image, but in case you want a direct link to the post, here it is: http://wheresagnes.tumblr.com/post/113095286140/self-care-is-not-a-bath-bomb-nor-is-it-a-face.
I also wanted to announce that I have joined Tumblr, under the same name as this blog, FindingOutFibro, and I will be trying to make as many images related to chronic illness as possible.
It’s so awesome to have Photoshop back, even though it’s like learning to use it all over again from scratch now because it’s been ten years, and even though I have to pay $10 a month for it (ugh… seriously Adobe?), I am still just happy to have a playground for all my visual ideas and a place to brainstorm my logo, header, media kit, and other branding stuff for my new business. It would probably be a good idea if I gave some thought to doing that on this blog as well.
Is anyone interested in me posting a Resources for Bloggers page with links to collections of free photoshop brushes, fonts, public domain image databases, patterns, royalty free background images and photos, html coding help, and links to a huge variety of goodies I have found as I go? I think a lot of people with chronic illness are intimidated by the thought of starting a blog. I certainly hesitated for a long time, but wish I hadn’t been so overwhelmed and had been able to start sooner when I still had a little more of my old energy. I want anyone who is even considering starting a blog to have all the tools at their fingertips to be able to get their voice out there into the world with the least amount of stress. Not that I know very much about this blogging stuff, just that I’ve been keeping track of the resources that have been useful for me as I get started, and I would love to share!
My grandma was an artist long after she began losing her eyesight. I wish I had one of her paintings to share, as she was a chronic pain warrior too, a fierce one, who raised 10 children on her own after her husband’s death.
I remember being about 13, standing in her kitchen where the last of the day’s light was streaming in, throwing this hazy pink glow onto everything. I watched as she dipped her paintbrush in the soft white that was going to be the main body of the moon, the last tiny part of the painting to be done. Then I watched in horror as the brush fell out of her fingers, which were arthritic and losing some of their dexterity. Loaded with white oil paint, it landed *splat* on the canvas. I almost started crying, I thought she was going to be so upset at all that wasted time, but she was pretty calm. When she picked up the brush, to our surprise, there it was, the moon. Even though it had been created completely on accident, and in an unplanned location, the perfect little circle needed very little touch-up.
Art and creativity happen even when we make “mistakes”. In fact, it happens even more when we fail and learn and try again.
It just takes more creativity to be creative (hah!) when you’re in pain or have limited mobility. I know I have what it takes to retain my artistic sides no matter what, even if it means changing my methods. If my grandma could paint with 10 children, plus a job and chronic pain, I can find the strength to pour my pain and sadness into my art too, where maybe it will do some good.
Give me a shout if you are also a spoonie with a crafty side. I know most of us have to be creative just to get through the day, so that counts too! 😀
About three months ago, I stumbled across a really interesting essay written by Rob Lamberts, MD on his blog at Musings of a Distractible Mind. The essay discusses in-depth and honestly how chronically ill patients remind doctors of their own humanity, fallibility and failure. This is something I have understood for a while but not been able to put into words.
Now that I have finally found a primary care provider who respects me and who I respect in return, I am a lot more hopeful about my future. All as a result of my ability to put trust in her. I do not, however, expect her to fix me or even necessarily tell me what is wrong with me. I do believe she is doing her best to figure it out, and she seems to believe my pain. Ahhhhh, miracle of miracles, I found a healthcare professional who actually cares! Novel, exciting, and entirely needed. 🙂
It seems the missing part of my previous relationships with doctors (not all of them, some of them are just plain jerks): I needed to show them the compassion I wanted to receive in return. This is just an excerpt from the wonderful words of Rob Lambert in A Letter To Patients With Chronic Disease:
…We are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.
Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain – is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.
-Rob Lamberts, MD
Written July 14th, 2010
(Read the essay in it’s entirety at http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease.)
So there you have it; part of the reason why you scare your doctor/nurse practitioner, the reason why you make them uneasy, agitated, and defensive. The author of this letter isn’t blaming his patients for making him feel like a failure, but he does go on to give us some tips for creatively gaining some ground with our doctors and reducing the tension in the exam room so everyone can behave like adults and no harsh “I don’t know what to do, your situation is just too complicated” gets thrown out there. Phrases like that effectively shut down communication and trust between you and your doctor. It’s as if they just slammed a door in your face. Of course, when we collapse into hysteria and start screaming for someone to fix us (um…. yeah, that might have happened, maybe…), that sort of thing can also shut down communication pretty quickly, just for example.
The step by step tips the author gives for cultivating a good relationship with healthcare team members should help to get things off on the right foot with a new doctor, or even mend a relationship with one of your current doctors. The latest poll of MD’s from 2013 Pain Report found that 1/4 of primary care doctors believe that all their fibromyalgia patients are exaggerating or even faking illness altogether (yikes!), so there is always that chance that you could be stuck with one of those jerks. In which case, don’t mend anything, just BAIL. Get out!!! Find someone else. Search the chronic illness support groups in your area for suggestions of primary care options who take your health insurance. (Hint, those support group websites often have lists of local lawyers for helping you file for disability and even local charities that can help with food, electrical, and mortgage/rent costs.) Then, once you’ve found a new doctor, use the author’s suggestions to build a rapport with him or her..
I know how frustrating the search can be, but I can promise you there is a huge, staggering, massive difference between a doctor who is a bad fit and the right doctor. Even with the right doctor, part of being chronically ill is understanding that no one understands us. We are always, to some extent, alone in our illness. Each of our pain is unique, it is not like anyone else’s pain. No two match up exactly. Therefore, no doctor will have the same take on it as the next. This is one reason why the author advises that chronic pain patients keep their eggs in just a few baskets; only seeing the same few doctors who are all in connection with each other and can actively manage your illness instead of bouncing from specialist to specialist to specialist.
Part of the shift towards receiving better care requires that we as patients always remember that the person we’re dealing with, underneath the title that shows us they attended a lot of school, is a human being who is capable of making mistakes and feeling guilty, defensive, or embarrassed by those mistakes. It is not our job to puff up our doctor’s ego by saying they did a good job treating us if they did not, However, it is also not our job to tear them apart when they are trying to do their best, even when we are just desperate for them to pay attention to our agony. Trust me, I get that, I have been there for more than a year straight not that long ago; just a total mess in every doctor office I went to, and every visit was a bad one that year. I left in furious tears far more often than I left composed.
Instead of going in dreading and fully expecting a fight, now I strive to help my doctors, nurses, and specialists more easily understand me by following some basic etiquette and planning for my time with providers more carefully. Thanks to the author of this article I am lucky to have found a great doctor-patient relationship with my new primary care who is a joy to see. She holds my hand when she has bad news, she is warm, compassionate, smart, and determined. I finally have an ally in my primary care! Finding such a gem of a nurse practitioner does not end my struggles with chronic illness, but it is a huge relief. Now when I encounter a doctor I cannot see eye to eye with, despite practicing compassion towards them, I am much more confident in identifying who will work with me and who is too jaded or disrespectful to be a good fit. I’m still learning how to implement all the advice the author laid forth so clearly, but after years of bad doctors and me being a bad patient in response, I think the cycle is broken.
A Letter to Patients with Chronic Disease is one of those essays I would recommend to all patients with chronic conditions, and it is one I wish I had read earlier in the onset of my illness. It found me at the right time, though, and I am so grateful.
In case you need to copy and paste the address of the original letter, here’s the url: http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease
my dear friend, A Body of Hope, wrote a companion piece explaining with a touch of humor just how frustrating it is to depend on doctors, and a clip from Twin Peaks (eep!) making it all clear as day.
Here is the her post: Warm Milk: Physician Frustration. Head on over and check out all of her insightful and inspiring posts. Her sense of humor is flawless, and I am always and forever in debt to her for helping me get started here.
So many people I love and care about deeply are going through the toughest (I hope) times of their lives right now. To all you warriors out there who aren’t sure what the future holds, try to take it easy on yourself. You haven’t given up. You are trying your hardest. You are surviving. That’s enough, no matter what anyone else says. ❤
What I am Grateful for Today:
Chronic illness is a battle, a burden every day, but it gives us a unique perspective on life. I feel like most spoonies I meet, whether online or in person, have the important things figured out (but we rarely feel like we do!). Those with chronic pain and illnesses have had to pare down their lives to the bare necessities for survival. We are skilled at finding the silver lining in almost every kind of adverse situation. We do not fret the small stuff; we are tough. These are just a few of the truths that I am incredibly grateful for.
Most of all, I’m grateful for all of the wonderful #spoonie support that happens every second, both online and in our communities. Where would we be without each other?
Click the badge below to head over the site and get started expressing gratitude through photos!
There is something trance-like about scrolling through the #CapturingGratitude wall, and I hope more people join the revolution immediately! The idea is to post pictures of anything you are grateful for, easy as that. Setting up an account takes two minutes, and then you’re ready to upload pictures of everything that lights up your life. It’s like public meditation, and it helps me focus on all the little moments in life which I need to consciously recognize and appreciate.
Today I listened to music. My music. In my house.
That sounds like not much to most everyone, but it is huge to me. I haven’t put my studio music on for ages. It’s all the stuff I listen to when I’m deep in an art trance for hours at a time. I haven’t painted like I used to since I was diagnosed, and a part of me has felt like it is wilting as a result. Having five or six creative outlets at one time has always been a part of my madness!
Lately it’s a daily struggle not to wear my chronic fatigue, fibromyalgia, potential MS, and that pesky anxiety, and wrap myself up in them like a big ugly blanket. Some days are definitely better than others, but as anyone with a chronic illness understands, “better” does not mean that my pain is actually gone or that I should push myself to my limits and beyond just because my body will allow it temporarily.
So there’s obviously a balance to be struck here, and I have to confess that I haven’t completely found it yet.
I have a feeling I will always be looking for balance in my post-chronic-illness-life. That’s okay, because so is anyone out there who is paying attention! That’s what chronic pain does, it’s like an alarm system where the sensitivity is set way, way too high inside your body, but it makes you notice things other people forget to take into account.
This morning a nurse compared my chronic pain to high blood pressure. I was annoyed at first, but then I heard her reasoning and I melted. She said that just like in high blood pressure, where one system in the body is set on high alert, so too is chronic pain a system that is over-active inside our bodies. Suddenly it felt like all the weight lifted off of my shoulders: all the stigma I had directed at myself for not being able to beat chronic pain with willpower alone was gone. It takes years and years of effort to completely cure oneself of high blood pressure. I know because I have spent the last ten years doing just that, and succeeded, in the midst of chronic illness, even. I had a bad reaction to taking birth control, and seemingly permanent hypertension was the repercussion. It is not a clean & clear cut path to beating hypertension, it takes a multi-disciplinary approach to actually get rid of it, and then it takes maintenance to keep everything running smoothly even after managing to get it into remission. I still have to take it into account all the time. Comparing the two actually made so much sense to me that I was in tears, thanking the nurse for her perspective and the weight that had lifted off of me after years.
In celebration I am listening to music I haven’t listened to in almost as long, music that has always gotten my creative side to come out and play. I am hoping that at some point tonight I will finish my boyfriend’s homework (busywork about grammar, which I asked to be able to do so I could re-learn all the rules I have forgotten) and then I can pick up a paintbrush or a sponge and get myself covered in paint, gesso, and paper scraps. Here’s hoping! 🙂
It’s pretty wonderful to make it through an episode you previously didn’t know you could make it through without help. Although the crippling level of pain I have endured the past two days has been completely unbearable by my standards, I did bear it. I don’t know how, I don’t know if my grandma was watching over me, but it felt that way.
This was my gift yesterday from my garden. I’m not religious, but things like this used to happen to my grandma all the time, so if she is by my side, this is definitely her way of saying I did a good job. Thank you, Grandma B. It’s difficult to grow melons in Oregon, even with a good season like we had this year. It’s difficult for me to have a garden at all with how ill I have been, but it would be harder still to not having one, to not see the growth and surprising tenacity of my plants as they make it through another summer of spotty watering and weird Oregon weather.
This beautiful melon managed to make my day yesterday. I cut it up and saved the seeds that had not already germinated. Delicious, sweet & flavorful liquor ran all over the cutting board as soon as I opened it. It may not have reached it’s full yellow potential, but it was definitely ripe!
Little big moments, like finding a perfectly ripe melon in the middle of a rain burst, are the things that keep us going when we are in pain all the time, when we are scared, when we are uncertain about the future or about the people around us. They are the things I hope to remember about each day, instead of the searing hot pokers in my legs and low back, or the steady drilling sensation in the back of my skull. Rather than focus on today being the day I got my brain scans back, I would rather remember that my garden did well this year even though I could not tend it like I usually do. Rather than focus on my lack of ability to clean the house, I would rather remember that I did somehow manage to get the dishes done and make something approximating a homemade dinner yesterday.
There are big victories to be found while living with a chronic illness, certainly, but they do not happen every single day. These little moments of strength, however, they actually do happen daily. The catch is that they only exist in reality if we know how to see them clearly through the emotional and physical chaos of chronic conditions, and that is a journey that doesn’t happen overnight. You don’t have to notice them every day for them to strengthen your soul, even once a week saying to yourself, “I did that, and I am proud of myself,” can make a huge difference over time. Sometimes you need help, and sometimes you need to do something difficult on your own.
I am proud of myself for getting through a serious attack without the panic and the momentary loss of self that sometimes accompanies a flare up. I am proud of my boyfriend for letting me wail and cry and scream my way through the episode without getting frustrated at me. And I am proud of my garden for producing such a beautiful melon even though it has been raining all week.