Maybe someone else could use it too?
Chronic illness warriors are great at pushing through, but as we all know, that is not always the best or healthiest option, although sometimes it seems like the only option. Pushing through can lead to a flare up that sets us back for days, weeks, or even months. Rest is a real job with chronic illness. No matter how we may be feeling, even if it’s better than usual, every single day consists of maintenance and making difficult choices that can help or harm us in the quest for balance. Most of the choices you have to make are things the people around you cannot understand. That makes it even more difficult to prioritize our own well-being in stressful situations.
To all those who wrestle with the guilt surrounding being chronically ill or in constant pain, I am right there with you.
Love you guys!
With a chronic illness or two (or five), it can feel, especially at first, like all mental growth and development is in limbo, that it is all so beyond you. Your ability to focus, care, be motivated/inspired, or be fully present in life is even suspended, and it takes a huge amount of effort to immerse yourself in any part of your day, from work to free time, pain can be so overriding that it even becomes difficult to focus on your significant other’s needs like you used to, or even to be aware of them. You feel terrible about these things, we all do. No one likes to have to compare our old selves to our new selves post chronic-illness.
And I respect that, very much so, and do not want to take away from the reality of those moments. Though I often try to emphasize the positive on this blog, I will be honest, there days when I have to write the positive message I want to say over and over again until I really believe it, or skip the “fake it till you make it” approach and wait to post something until I feel less cynical about life. I am often stumped by my own depression, my own guilt. My illnesses and pain often overwhelm me and leave me so hopeless I can’t even bear to write about it. I never want to trivialize the absolute difficulty of living in constant, unrelenting pain that threatens to burn you alive with its intensity. During times when I feel that terrible and dysfunctional in every way, I tend to shut down, pouring my energy into worry, fear of rejection, and often anger, among other negative emotions. I do not believe it is anyone’s “fault” if they feel upset about something. There is always, always, always a reason for why people feel and act the way they do, and though that may not excuse behavior that is harmful towards others, it also provides a framework for starting to understand those in all stages of recovery or maintenance with a chronic illness. Just because some of us happen to be really good at dealing with pain, and some of us do not handle it as well, does not make those of us who are struggling any less worthy of love or admiration for where we are in our life and what it has taken us to get there. It also does not give someone who is in a better place mentally, or who feels like they are in a better place, the right to demerit someone who is just starting out on this journey, or someone who is picking themselves up from the depths of hell for the 42nd time and trying again, or even someone who isn’t yet aware of the path in front of them and can only focus on their own misery all of the time. These are all stages of the same state of existing and trying to thrive with a chronic illness. We are no better or worse than anyone else in pain, or bedbound, or learning to walk again, or even than someone who has given up, spiralled deeper and deeper into the sadder side of illness. No one wants to suffer. We were not born aiming for misery. At no point did someone walk up to us and sell us this illness, we did not choose it, we would do anything to be better, and many of have done everything. This is hard. Bottom line. You are allowed to have days, weeks, months, years, where you feel like a failure. You are allowed to grieve, hurt, or be miserable. You are allowed to scream, cry, or feel the hollow, numb, hopeless apathy wash over you for a time. These are your emotions, you are supposed to feel both highs and lows, and all things in between.
No one gets to tell you that you aren’t dealing with your illness in the best possible way for you, even your doctor’s advice needs to be taken with a grain of salt and a deep knowledge of what is right for you, in a long-term sense. Listening to your intuition is confidence boosting, I promise. We are all doing our best, even if the whole world makes you feel like a scab on a wound stuck on the back of society, that is not our fault, and it is not forever! Nothing is worse than being stuck in the negative side of emotions, and on top of that, also feeling guilty for your own disordered thoughts.
Dear spoonies, you are doing the best you can. Please, please, try to take some comfort in the fact that there are people out there who know how hard you’re working, how every single day is a massive achievement, and how determined you really are underneath the tears, the desperation, and the bad habits that will not be dealt with right now.
You don’t have to think positive all the time. You can be loved anyway, no matter what side of the emotional spectrum you are currently leaning towards. You are still worth just as much when you are sad as when you are happy, so please don’t feel like just because you are depressed, you are worthless. Depression is a part of this. A study from 2008 at Northwestern University shows how pain actually changes our brains, and it takes some time to adjust to that change and figure out how to work around what you have been given. We are all different, there is no formula for everyone to achieve optimum happiness, and anyone that insists there is might not be as brilliant as they appear.
CHRONIC PAIN HARMS THE BRAIN
In a new study, investigators at the Feinberg School of Medicine have identified a clue that may explain how suffering long-term pain could trigger other pain-related symptoms.
Someone who tells you that it is possible to be chronically ill your whole life without dealing with bouts of depression, obviously hasn’t suffered any major trauma in their life, either that or they are in some deep denial. Whatever the reason for their skewed logic, don’t listen to that crap. Illness can be traumatizing, but you are safe in thinking your thoughts, no one has dominion over what you feel, you are in charge, you are allowed to experience the ups and the downs in life without censorship. Just in case you don’t have a safe place to be yourself in all of your disease’s ups and down, I am always honored to listen and encourage. No one should ever have to do this alone. Chronic illness is an adventure best enjoyed surrounded by those who understand and commend your quiet everyday courage just in getting up each morning to a body that does not behave and a life that is more stressful than most. I admire each and every one of you, even if we haven’t met yet, I know you’re trying and I’m rooting for you.
Beautiful spoonies, you all fight so hard, and that makes me so proud to be a part of this wonderful and supportive community. Even if we’re depressed from time to time, we are still fighting to be here in a meaningful way, and very much deserving of finding that. ❤
This is a post about me, but I hope it touches someone else as well.
I realized today that for the last three years I haven’t had a day off, because although I’m not able to work, I also am not able to relax. This upset me. I haven’t had fun in so long I don’t know what it is anymore.
I used to be a fun person, didn’t I?
It wasn’t even that long ago.
Why can’t I relax? I do all these relaxation rituals every day like they’re going to save me, and I even get some benefit out of them. How come I can’t get where I need to be? I’m usually good at doing anything I really set my mind to, even with all the glitches my mind has nowadays. I have dedicated the last three years to healing myself, so why is relaxing so unbelievably hard? I’m sure most of the people around me think that’s all I do in a day; relax. It must look like it from the outside in, when I’m mostly in one place all day long, and I don’t work, and I don’t contribute to our bottom line. I’m sure there are a couple people out there who think I’m doing it for attention or for some other sneaky reason. Let me assure everyone, the only reason it looks like I’m okay is because I worked really hard to not spend the entire day crying, freaking out, and catastrophizing my painful and scary symptoms. Believe me, faking chronic pain isn’t easy or common, in fact, only about 1% of chronic pain patients have been found to be malingering or milking the system. That’s a stereotype for a differing blog post, though!
Then it hit me: I’ve been a patient for the last three years, but that’s not the only role I have been filling by any means. I have also had to be my own researcher and doctor for most of that time. When I stopped working a little over a year ago, I filled those hours immediately with my other duties (which were being completely neglected at that time because I was too sick to do both). I never really slowed down, because I felt so much guilt over not continuing the agony of trying to work a few hours here and there, when I could even get out of bed / stop vomiting / not have fiery and ugly hotflashes all day long. My first unemployed days overflowed with housekeeping, baking, doctor appointments, tests and imaging, canning produce, tending the garden that we depend on for subsistence each season, helping my boyfriend with his massive amounts of homework, keeping my houseplants alive, writing budgets and grocery lists, self-care routines, research my illnesses and symptoms, teaching myself ACT (Acceptance and Commitment Therapy), keeping track of my friends who are struggling with life-altering or life-ending illnesses while trying to help them emotionally whenever the opportunity arises, and acting as a caretaker for my boyfriend after his three hip surgeries.
None of these things are things I dislike or don’t want to do. In fact, I can’t imagine giving up any of these things any more than I imagined I would ever be forced to give up my job and driving. Giving tasks up means that someone else has to do them or they will go undone (like my make up and hair, for instance!). All the responsibilities that I am no longer administering to, such as driving, they mostly fall on my poor boyfriend, who is himself a chronic pain warrior.
I’m not happy with this situation. But I am learning to accept that I am not a burden simply because I can’t do all of the things I used to be able to do. The next step, the step I haven’t quite been able to take yet, but my toes are over the edge at least! I’m getting closer to being able to make this leap: at some point in the future I have to start doing the things I want in spite of not having enough energy to do the things I need to do afterwards, I have to start wearing less hats. It will mean downsizing my life again, which is yes, totally terrifying.
Most importantly, I am in control of what goes and what stays, this time. I know that getting any of my conditions into remission will be a process that requires me to reclaim my emotional well-being as much as my physical, if not more.
I have been afraid to step into the roles I really want to take on because I’m not doing a great job right now, trying to wear all these different hats for different people.
From now on, I’m making a pledge to myself, but also for all the other over-worked & underpaid spoonies out there, that I will not beat myself up for what I cannot do. I will be more gentle with myself when deciding whether to push through a painful task or take a short break. I promise to feel less like a burden and more like myself. No more guilt for trying to be a happier person, whatever it takes!
It’s a whole shift of mind, but I’m finally getting there. Closer, but the damn guilt still won’t let me paint like I used to, even on a better day.
I will get there soon, though. I can feel it.
If anyone has any advice on how to accomplish this new quest for self-love and self-worth, I would love to hear your input!
To all spoonies: You are good enough. You are not a burden. Be gentle with yourself when things are too overwhelming or too difficult to accomplish alone. You are worth loving and lending a hand to, no matter what. ❤