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. ❤
When I first came down with an invisible illness shortly after being in a car struck by a semi-truck, things looked pretty bleak.
My thought process after six months of dealing with the constant doctor visits and physical therapy, with the pain, fatigue, and fevers, was that either me or my illness was gonna go. Both of us were not gonna share this body.
Fix it or kill me. That was my motto. I could not conceive of a world in which I could not work, but in which I still had value. Value despite a dollar amount I was bringing in. No part of me wanted to accept that I would have to learn to live with this, or that my life not only had to be paused, but also that I may never be able to participate in the same ways as before no matter what I tried to cure myself. We hadn’t even started talking about disease processes or autoimmune or anything at all other than injury from the car accident, but I was frustrated that I just kept getting worse the more work I did to heal.
On the days in between flare ups, before I knew what a flare up even was, I insisted to myself that I was cured, and I was horribly let down and unprepared for every single episode or new symptom that manifested.
When people told me it would be easier and better to approach my illness from a place of positivity, I was furious, because they were making the assumption that I wanted to live with pain in every part of my body, and I really did not, at least not at that point. I had just recently been perfectly healthy, my body and brain up to any challenge set in front of me. How could I adjust to being so drastically limited and in so much pain I couldn’t even drive or work a full shift? It truly seemed impossible.
It also felt like when people tried to encourage me to make peace with all the unknowns and all the debilitating symptoms they were implying that mind over matter would cure me, or at least allow me to live a ‘normal’ or fulfilling life. Again, a life without a job and my recently hard-won independence seemed so completely unfulfilling. I went straight into defensive language, outbursts, and isolation at the first suggestion that somehow I was expected to be strong enough to cope with physical weakness, fatigue, pain, sensitivities to sound, light, chemicals, smells, and touch, energy crashes, cognitive dysfunction, lack of ability to work or drive, and the accompanying guilt and grief that go with losing your place in life right after you gain autonomy over it for the first time. I could find so many more reasons to be upset than to be optimistic. It felt like everything I loved had been ripped away, like all my choices had been taken from me. Of course that isn’t true, but for newly diagnosed or undiagnosed pain patients, especially at a young age, it’s entirely common to feel like it is the end of your life and nothing good will ever be possible again unless it comes packaged as a complete and total cure. The temptation is to retreat and hope that you can pick back up again where you left off when you feel better, and that’s acceptable with temporary injuries and illnesses, but with chronic illness there are often no “feel better” days, and there is only so much hiding from life you can do before it becomes apparent that life is going to continue, albeit differently.
I still have moments where I think I can’t handle it, and weeks where everything spins around me and I hope hope hope I will still be okay when it all lands again. I still fear for my future, I fear for my relationships, and feel insecure about my lowered libido, frequent whining, fitness level, and inability to contribute financially. Those things are part of being human though, if I didn’t experience some guilt and upset over them, I wouldn’t be me.
Amazingly, I have learned a lot through illness. I have learned to be patient no matter how uncomfortable or unhappy I am. I have learned to take care of and prioritize myself even when it feels selfish and lazy. I have learned that internalized ableism is what makes me feel that way, and that ableism does not do me any good, especially not when it has become a part of my own thought process. I have learned the importance of asking for help, though I haven’t quite mastered actually asking for it. So much has sunk in; things that I was resistant to when fibromyalgia and chronic fatigue syndrome first reared their heads. I wonder if I am even the same person anymore, but not in a totally negative way.
I have learned above all that there is not as much wrong with me as there is with a society that teaches people to base worth off of income earned, sexual intensity, physical ability, and even intelligence. There is nothing wrong with having an excess of one or even all of those things. But there is nothing inherently better about possessing those things, either. Except that it certainly makes your way in life a lot easier to have money, health, sex appeal, and unlimited brainpower. Maybe that’s what I like more about myself now; it’s not that easy anymore, I can’t just draw on one of those things and call myself a better person for having it. I can’t reassure myself with meaningless attributes, and that is its own kind of blessing. I have to concern myself instead with things like courage, persistence, kindness, and even that elusive thing we call happiness. Amidst all the pain, being ill has given me something wonderful; it has allowed me to seek out those true, meaningful, beautiful traits in others, regardless of what value society has assigned to someone.
I’m actually surprised that the person I was ten years ago has grown up into a person who does not hate herself and who rarely wastes energy on disliking others. It’s a pleasant realization. I really believe I must have hated myself to treat my abled and active body with such disdain, and to have thought I was so boring when my life was always so full of unique friendships and passions, and to have constantly been comparing myself to others and feeling so shortchanged. Not to say I don’t have moments where my body is a source of insecurity, and I certainly get frustrated with the slow, meandering pace that my brain operates at now. Somehow though, over the years, the negativity has become tempered with “but tomorrow I will be grateful for what I do have”.
A lot of my current (relative) level of peace has to do with getting almost all the way off of Lyrica and starting to paint again (more about that soon!). A lot of it has to do with this blog and the wonderful people who have introduced themselves and the strong sense of community that lives here. Also through the groups I have been invited into because of my writing here. A lot has to do with therapy, some of it with self-therapy techniques, and some with the actual, lasting progress I have made along the way. It’s easy to look back at three and a half years of illness and feel overwhelmed with all the life I have not lived in that time. I had planned to have a career and a child by now, and perhaps to have bought my house.
Ten years ago, I would have only seen that big dark cloud of not measuring up materially to the person I had set out to become, and I never would have noticed all the glints of silver lining to be found from where I’m standing in the rain. Three years ago, I feared there was no happiness or peace to be found amongst the terror and the overwhelming nature of being sick in my early twenties. Two years ago, I knew that others lived with diseases and still had fulfilling lives, but the knowledge just made me angry. A year ago, the knowledge that others out there were dealing with similar things and did not want to die every single day started to give me hope, and this blog helped me find those people and learn the self-acceptance that I needed so badly.
Now, I want to start to figure out what I can do to give back, but I have taken a pretty big set back this week by conscious overexertion so I could spend time with my family and my mom while she was visiting Oregon for ten days. During my recovery from this, I will be writing more and pondering what I have to contribute, and where the chronic pain community would be best served by what I do have to offer.
Thank you for reading my blog, thank you for reaching out to me, thank you for being so understanding and gentle, and so patient. I couldn’t have done it without you.
I just posted a new page listing all of the successful earn-money-at-home websites I am a member of so far! Here’s the first portion, but head over to the actual page for the list of websites with links taking you to the sign up page for each.
click here to skip to the new page: My Recommendations for Make-Money-At-Home Websites
I’m relatively new to this whole making money at home with my computer thing, I remember trying to do it when I was younger and failing miserably at it, and thinking that the whole thing was a scam. 18-year-old me was just going about it all wrong, and I didn’t do my homework before I joined websites. There are a surprising array of no-credit-card-required product evaluations, surveys, small tasks answering questions or matching things online, games, videos, emails, paid-to-click sites and search engines that earn you points while you use them. The trouble is weeding through the crappy sites to the ones where you get lots of opportunities, a good sign-on bonus, and which have many different options for making money. There are two kinds of these websites, my personal favorite being the ones that pay out in cash. Beware of sites that only pay in points and auctions. I do have a couple accounts where my balance is shown in points rather than cash, but the ones which have made the cut actually pay out in equivalent cash rewards to paypal or amazon at the very least, no points-for-auction-entries sites will ever be listed here, I do not want anyone wasting their time.
This is a new adventure for me, but as soon as I started making money at it, I couldn’t stop thinking of all the people I know who are stuck with part time or no work at all, and I wanted to share this thing I’m doing with all of you who would benefit from it most.
Taking surveys and doing small tasks online distracts me from pain, but above all it is something that I can put away whenever my pain is too overwhelming to read or focus.
I also made a separate page that collects all of my current posts and the many, many future posts I have planned for my Chronic Pain Toolkit series. I want to work on the Toolkit as often as possible in the coming year and am excited to commit to writing more empowering posts.
2104 has passed me in a total haze, or I have passed it, either way. I will not be sad to see it go it because I honestly don’t remember most of it. Funny how our brains protect us from remembering the very worst pains.
The next year will not be merely survived. In 2015 I am determined to get back to the business of thriving again. Yet, I know that even if I find myself only barely hanging on again, I will try to stay happy with myself no matter what. Even just surviving with a major chronic illness or a handful of them, is a victory, and a big one. Some days it might be hard to remember why we are here, especially in the depths of pain, exhaustion and illness. We can lose sight of the next day and the day after that, and the simple promises held therein. It’s not hard to do. Hanging on through the worst times, this is no small achievement! Let’s take a second to congratulate ourselves on that! In the end, no matter what attitude we have about leaving 2014 behind, we are all wiser for having gotten through it. Some of us are also stronger. Some of us are feeling defeated, guilty, or shattered. But we are all still here.
I for one am actually (dare I say it) hopeful for the first time in years about my future. Nervous, nails bitten down all the way, unable to imagine what the future will hold, but excited and hopeful too. I’m not used to having anything that is actually important to me to show for myself at the end of each year, but this year my mental health is very important to me, and I have seen some small but important changes taking place there which I cannot help but be overjoyed by.
I hope 2015 brings you all much to be joyful about, and I cannot thank my friends and readers enough for your support, kindness, and the warmth you have infused into my world! ❤
Let’s get this started, 2015.
Being grateful is my new go-to emotion.
If I’m feeling numb or distant or like I want to spiral down and down, I pick out one thing I can still do, one personality trait I am grateful for, and one thing that happened that day to be thankful for. Sometimes I just write the answers over and over again until they carry the meaning they need.
Of all the surprising benefits of being grateful, the one that strikes me right now is that it actually makes it easier to feel like I have all the reassurances I need, so I do not need to seek them from other people.
I only figured out in the last year what it means to truly find good in everything, and to make that spirit of thankfulness a priority. I was so ready for a change internally that when the gratitude that people had been telling me about for so long finally sank in, it became a part of my daily life almost immediately and with not nearly as much effort as I thought. Looking back, I started small and worked my way up to being able to write a list of positive affirmations almost every day. Writing those lists has been an incredible experience in the last three months. Now when I feel lost, I can look at the page after page of lined notebook paper and find myself again.
If you are fighting a battle with a chronic condition or chronic pain I especially hope you have the power of gratitude on your side, maybe not right now, but in the future at least. It doesn’t take my pain away, but it is almost like a blanket that keeps me warm no matter how cold the winds in my life are blowing (it’s freezing here, lol).
Easy is absolutely nowhere to be found in my new post-illness life, although people on the outside looking in must think I am lazy and everything is handed to me while I sit back in comfort and make demands on everyone around me, that simply is not the truth. In all this craziness, gratitude helps, that’s for sure. My life isn’t easy, I just make the best of it. Hard to prove, though!
Fortunately, all that matter is that I know how much grueling, non-stop work is going on even on those all-important rest days when I seem my laziest to the casual observer. Among the changes fostered in me when I adopted gratitude into my outlook, it’s finally getting easier not to care what people think. I have always been so self-conscious that by age 10, even sitting with my family in a restaurant, I was sure I was so hideous that everyone must be laughing at me, and every “her” I heard, I was sure it was me being discussed in all my disgusting glory (my self esteem was not the greatest, as a kid), so gaining some ground there is awesome, to say the least.
Apparently when everything else falls apart, we get time to explore ourselves, and pull all the good things we have buried back up to the surface again.
It honestly feels like all this soul-searching could be the most important thing I do for myself in my entire life. I am grateful for the chance to pursue it.
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