You Don’t Always Have to Feel Grateful That it Isn’t Worse
So, I’m going to just say that things have been pretty bad for me right now. I have so damn many health care, financial, and emotional needs that are not being met, and after three and a half years of waiting my turn, I need something better than this, I need more, I need to live and have hope and at least try to get treatment for some of these problems. But just because I need something doesn’t mean it is possible. Money is an asshole that way. All ways, really.
I am still grieving the loss of a dear friend, and I talk to her at night when it’s quiet like this, and I think she hears me, but I don’t even know how to put into words how much it hurts to obliviously type her name on facebook like I’m going to see her there posting updates, and then to realize that no one gets to hear her sunny voice again. Who knows why it takes so long for the shock to wear off and the sadness that won’t lift to settle in. It’s like my bones are crying now, and I feel her absence physically.
All these things coupled with isolation and excessive pain levels with secondary depression, plus a nasty chest cold have made me a slightly more bitter girl, and I apologize for that, but then again, I kind of don’t want to apologize. Though it’s embarrassing to go off on an angry rant and publish it and re-read it the next day and not recognize who wrote the words, I did write it, and I did mean every word when I was writing and that tells me that someone else out there can maybe feel less alone if I continue to allow myself to occasionally write the lows, the times I don’t cope well, that my chronic illness brings.
The reason I’m suffering this week is simple. I went out, I lived a life for a week with two social calls an hour away from my house, and the consequence for my actions are a dire flare up and infections, even though I practiced preemptive rest, stayed hydrated, slept beforehand and loaded up on vitamins. That’s what the fuss is about, for any non-spoonies reading this. That’s why I’m “obsessed” with my illness and I never seem to win. You can do everything right and chronic illness is still a merciless, evil, cold hearted f*ck who will laugh at your plans, your support network, your therapy progress, your talents, and even your basic needs, and which will deny you access to them all from time to time.
I’m not trying to paint a grim picture, or a “poor me” kind of portrait, I’m trying to say that all spoonies, no matter how small you may see your contributions to be, all spoonies are important. You are important and you matter.
I guess I’m leaning towards the idea that if I don’t censor myself, I will probably help more people feel accepted and welcomed into the chronic illness community. We don’t have to have rainbows shooting out of our asses all the time to be valued and welcome members of the online spoonie community. I like encouraging people with stories about good days and things I am thankful for, and I won’t give that up, but I also don’t want to be missing a whole group of spoonies who feel pretty worthless and unaccepted by the rest of the chronic world.
Everyone needs a place to belong, even the undiagnosed, the doesn’t-quite-fit-the-diagnosis patients who are still in limbo, they need our support more than anyone. That is a stage in my journey where I was bitter every single day for at least a year.
So I’m going to perhaps post more vehement pieces than usual and not hold myself back. I will stop telling myself I can’t write on my worst days unless I have a good attitude while I do it,because that’s not therapeutic for me, for one thing. I do factor in here too, somewhere, I think.
The reality of being ill is that you will have some good days, some of us get more or less of those depending on our situation, some of us don’t have good days physically, but almost all spoonies eventually get to the point where you can have a series of bad days that you can handle emotionally, and those bad days will make you proud of yourself later on without too much soul searching involved. You endured and even conquered your illness for a while. You got through it without snapping and that’s to be commended. But it’s not to be expected from you. Positivity during hardship is not the only “right way” to cope. Because look what happens next; you overdo it or the weather changes or you cough funny, you have a medication reaction, or you develop a new symptom or allergy and things get complicated.
“Didn’t I just get through another hard week like this?” you think to yourself. It drags on, but you get through it, kind of numb and just making it day by day. And then not-so-wonderfully, another health setback; you have to take care of someone else who is ill, you get asked to another social function you can’t get out of, you have to attend three doctor’s appointments in one week, or whatever else it is, but it adds onto the pile you had not quite dug your way out of from last week yet. But you get through that week, and the next one too, though on the bad days you’re just counting the hours, you can’t even take it day by day things get so overwhelming. Months go by like this, a cycle of debilitation and not-quite-recovery only to be met with more medical problems, more stress, more debt, more isolation and eventually the bitterness that you thought maybe you had “gotten past” can sneak back up on you.
I’m not saying you are required by spoonie law or something ridiculous to feel all of these things in these specific ways for these reasons. I’m just setting the stage for those who are being hard on themselves for not coping as well as they’d like, and for people who may not understand what suffering from an invisible illness can be like when you aren’t improving.
No matter how you cope, or how well you “keep calm and carry on”, you still deserve to be commended. You’ve gone through a lot, and you should feel safe and understood when you are being honest about your pain. Honesty is not negativity.
Wishing everyone extra spoons, low pain days, and super soft fuzzy blankets that don’t hurt you while you’re sleeping. ❤
Tags: #ButYouDontLookSick, #chronicfatigue, #chronicpain, #fibromyalgia #chronicfatigue #chronicpain #chronicillness, #PainWarriors, #smallvictories, ADHD, adjusting to life with illness, advocacy for invisible illness, allodynia, anxiety, Anxiety Disorders, art, art therapy, Awareness, being grateful, being happy, brain fog, but you don't look sick, CFS, CFS/ME, chronic fatigue, Chronic Fatigue Syndrome, chronic illness, chronic illness & relationships, chronic illness win, chronic invisible illness, chronic pain, Chronic Pain Awareness, communication, Complex PTSD, Complex Regional Pain Syndrome, creativity, CRPS, Degenerative Disc Disease, depression, disability, disability and self-esteem, Dysautonomia, EDS, Ehler-Danlos Syndrome, empathy, fibro fog, Fibromyalgia, fight like a girl, findingoutfibro, flare up, friendship with chronic illness, GAD, gardening, Gratitude, guilt, healthy self-esteem, honesty about symptoms is not negativity, honesty is not negativity, Insomnia, invisble pain, Invisible Illness, invisible illness awareness, JHS, journaling, loneliness & illness, ME, mental health, mental health stigma, migraine, Occipital Neuralgia, pain, pain warrior, Painsomnia, panic attacks, Panic Disorder, POTS, PTSD, relationships, RSD, self-care, self-worth, severe pain, Spina Bifida Occulta, Spine Damage, spoonie, spoonies are tough, staying strong, summary of chronic illness, support network, TMJ Disorder, Trigeminal Neuralgia, what it is like to have chronic pain, what it's like to be in chronic pain, you don't always have to be grateful that it isn't worse
About Jessi Finds Out FibroHi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.
sign up for Ebates for FREE and get cash back on all your online purchases!
Read My Guest Post On Distraction Therapy For AXIS Dance Company's Blog
Help me afford to adapt my life around my illnesses by starting your own Free 30-day trial of Audible or click the link and complete any regular shopping on Amazon once you're there.
I make $5 when you start your free 30-day Audible trial and 4-6% of every purchase made on Amazon within 24 hours of using this link.
THANK YOU FOR YOUR SUPPORT!
- 102,409 lovely readers
Looking for Something Specific?
- Precious Diagnosis: What’s in a Name?
- Seeing Possibility
- Neurontin and Lyrica are a Death Sentence for New Brain Synapses
- Gift Ideas for People with Chronic Illness and Disabilities
- Distraction Therapy, A Guest Post For AXIS Dance Company’s Awesome Blog, And Exciting New Business Ventures
- Harms/Benefits of Somatic Symptom Disorder
- The Autonomic Nervous System & Why It Matters
- A Spoonie Poem for All With Chronic Illness
- Staying Present During A Flare Up
- Ehlers-Danlos Syndrome Medical Emergency Information Cards