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Adding
more nutritious foods into my daily diet. My partner and I had our first session with the nutritional therapist last month! It was all very interesting, especially the interpretation of my blood tests from a new angle. Doctors tend to look at your readings to ensure that they fall within a range, and that range can be pretty wide! Nutritional therapists on the other hand, assess what that number may mean for you in particular.
For example, they can predict your risk for heart disease by looking at a specific component of your white blood cells, or which part of the body inflammation may be stemming from. It sounds like detective work to me, and chronic illness after all, often falls under mystery (or horror…).
I’m not going to bash what doctors do, because I believe that they have their merits as well, and modern medicine has saved my life countless times. I prefer to look at nutritional therapy as complementary, and believe that they can work hand in hand to improve my quality of life. We’ll see how this goes for the rest of 2018, as we make some modifications to our diet in an attempt to improve our health!
Spreading
kindness everywhere. I believe that what goes around comes around, and that we all have a role to play in the grand scheme of things in the universe. Yes, even those of us who are sick and bedbound. I explained with a bit more depth in this post, but what it boils down to is that even though pain often has no purpose when it comes to chronic illness, purpose can still stem from it.
If I want others to treat me with more respect, empathy and kindness, then it has to start with me. How I behave will set the tone for what I expect from others. If I want to live in a better world and a more humane society, then I will have to dig deep within myself and start from there.
Ranting
about social media and blogging (gasp!). Thought I’d include a prompt to give us a legit place to let some steam out 😉 I’ve been feeling drained of late from all the blogging related activities, and being depressed while coping with flares don’t help. In fact, it’s probably a vicious cycle that feeds into each other.
What gets me down the most when it comes to blogging are other people and ironically, most of them have chronic illnesses themselves. They seem to have become very bitter, or perhaps I feel like I’m not supposed to get mad at them because ‘they’re one of us’. How do you personally deal with sick trolls, if I may ask? I’m only human and do get angry, jealous, petty or mean at times. Not all situations are avoidable either, unless I decide to stop blogging, which I don’t.
I’ve been getting messages from various people online who ask for my help as well. Some of these requests are personal affairs in which they need some reassurance. Others are for raising awareness on important issues. I feel guilty for feeling resentment or fatigue, because they’re mostly for good causes.
Then there are those who ‘yell’ at or lecture me, saying things like ‘are you sure you want your take home message to be so negative as an advocate?’, or ‘I can’t believe an organisation like you would say such a thing’. (By the way, I’m just one person, and I’m not from the U.S.. I avoid certain topics because I’m not living within the situation to fully grasp the nuances, and don’t want to do more harm than good.) I hate this because often these are the people who don’t even read the posts or bother to figure out the context, and just jump to conclusions in order to air their egos. Logically I know it’s not worth wasting energy over, but sometimes I can’t help but feel frustrated, especially on the bad days when my mind is already in a mess.
Protecting
my peace. So I guess rants can be cathartic, but it’s even better if something useful comes out of them! How do you protect your peace as an advocate or blogger? While I acknowledge that dealing with such issues comes with the blogging scope, I’m also aware of the need for me to protect my peace of mind with more thoughtfulness. I usually do this by totally cutting off and going on a holiday. I did just see flights to Berlin from Singapore starting at $150 one way…
But really, I need to find ways to protect my peace on an everyday basis as well, especially if I want to continue blogging effectively. Peace is such an underrated quality that permeates into every area of our lives. Without peace of mind in our speech or actions, we’ll never be truly happy, or healed in entirety.
I guess I’m going to have to cut down on the advocacy stuff in July, and fill my own cup back up. My partner’s dad will be in town again for a couple weeks, so that should naturally be good distraction as well!
Dividing
between rest and work time. I recognise the need to draw a clearer divide between blogging (which I count as work), and personal rest time. The problem is that I actually enjoy blogging and sharing, so the lines get blurry as I carry it into bed with me on my phone, or while I’m on the move. Where others browse to relax or distract themselves, I’m always hunting for useful health information to share, or catching up on interactions. But it’s a neverending affair, and can really sap you of your wellbeing.
At least when I was working full time, the physical divide between the house and office was a big reminder of the need to switch off. The in-between downtime spent commuting helped to create a divisive routine as well. I suppose one way of doing it is to set cut off times, but I know I’ll have to draw clearer lines moving forward.
Thank you for reading, and I hope to read your responses for July’s prompts too! Click here to submit your own entry, and to read about what others are up to as well!
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I wanted to say that hiring a nutritionist was one of the best things I’ve done for my own personal chronic illness. I’m not cured, but I’m no longer suffering day after day with no hope.
I enjoyed reading this months prompts and your answers. Once I put a spam filter on my blog, I’ve really only had one nasty comment. It is definitely a fear of mine, that I’ll share my heart and be attacked as a result. Thankfully it hasn’t happened, or I probably would have stopped blogging by now.
Hi Kathy, thank you! Yea I have spam filters on my blog too, but I meant more on social media. I mean, that’s to be expected, but it can also build up and get tiring. I simply need to learn how to manage my emotions a little better – a lifelong struggle for me! 😉 Don’t stop blogging if you enjoy it – I do like reading your prompts every month! x
Yet another good read! I think your writing prompts are fab!
Don’t like to hear you feel guilty for ranting about sick trolls, because as you say, you are human. If the odd person questions why you’re not commenting on a certain subject or think that you’re in any way negative, then that’s their opinion and there’s nothing you can do about it. I find you to be one of the most empathetic, inclusive peeps out there in the blogging world and whatever people’s opinions, you know you’re well intentioned and that’s the main thing.
In fact your writing prompt prior to ‘ranting’ is ‘spreading’ kindness, which is wonderful. The very act of blogging about your experiences with chronic illness and encouraging others to do so is an act of kindness – you’re encouraging others to be kind to themselves too, which can be so difficult to do when you’re ill. I think you’re awesome xx
Hi Kate, thank you so much taking the time to comment and encourage me! While I share and blog not for ‘likes’ or for anything in return, it can still get disheartening when others trash you. It doesn’t help that I’m so sensitive, which is something I’m working on as well 😉 And I’m glad you like the prompts, sometimes I’m not sure if they’re suitable ones for chronic illness, but I figure we have plenty of time anyway 😉 Wishing you all the best, lovely! x
I hate that you have to deal with mean trolls. My blog is smaller, so it’s less of a temptation to those types of people. It really is a problem in this world, that people just go online to be hurtful. Your advocacy is really helpful, so don’t let yourself get down. It’s so important to back off, if you need a break, though.
Thank you for your kind support Lisa, it’s the ‘good people’ like you out there who make it worthwhile! Yea I’m definitely being a little more self aware for July, and am trying to stay away from blogging over the weekends, at least, and go do something totally different. And yea, I’m not sure why there are so many trolls out there. And the thing I really don’t understand is that lots of people with chronic illness complain that society hates them, etc, but they are also the ones spreading that same shit around. Anyway, I loved reading your entry, and I also loved out sincerely positive your outlook was – it did inspire me x Wishing you a lovely week ahead! 😀
Sheryl,
Thanks for the post. I loved the humor and your willingness to share the complicatedness of doing work that 1) you love 2) you need breaks from, but it’s not the kind of work that always allows for clear lines between work and personal time/space 3) makes you vulnerable in the way only personal writing online in the contemporary moment can. So frustrating that there are strangers out there who may or may not be carefully reading what you write, but make unkind/unthoughtful/not okay comments. I hadn’t thought much about spoonies trolling spoonies, and yet, now that I read about it here, I think of some folx I’ve seen on twitter who do attack other spoonies for various reasons. It’s been troubling me for a while but I don’t know how or whether to address it.
Admittedly, I sometimes see spoonies posting things in which they kind of seem to be saying everyone should be doing what they are doing, or everyone can “at least” do this or that, and I get upset, as these posts don’t acknowledge the fact that not everyone has the same capacities the writer has, nor the same interests/needs. But mostly when I see stuff like this, I try to find something positive to focus on, or refrain from commenting and try to trust that people are doing their best to “speak from the heart.”
Trolling in general is just such a worrisome thing. And so particular to social media/internet communication. I mean, I wonder if people did similar stuff before internet, like by mail or phone calls, I bet they’d be subject to legal repercussions, but online they can mostly get away with whatever. As a spoonie, I really appreciate twitter for what it can do, but also the general trolling and negativity can be so upsetting, and as a spoonie, at least in my spoonie world, it is so important not to get too emotionally “activated’. Kind of like when you say “protecting your peace” I guess. Anyway, it’s really refreshing to read your post and be reminded how meaningful it can be to be gentle toward each other as we share in public online spaces, even when we disagree. Maybe it’s not always the best or right answer, but a lot of the time it just might be.
Thank you for all you posts, and for permission to rant, and for your work of spreading thoughtfulness, kindness, and understanding! 🙂
p.s. I keep meaning to ask you, how did your class go? (Didn’t you do an online workshop?) (Did you already write about it and I missed it?)
Thanks for reading and for sharing your own thoughts and experiences as well, Dov! Yes it’s difficult (at least for me!) to strike that cool balance that we all strive for. I know it’s a lot to do with self-worth, and I’m always in awe of friends that possess that quality. They’re really able to keep stress at bay because a lot of the time it really isn’t worth the energy!
And I do try to tell myself to focus on those who matter online, but they can be very shy or quiet, while the trolls are loud and persistent 😉 I’m all for constructive criticism, in fact I appreciate it, but I senseless trolling just feels like I’m banging my head against a wall, and I do need to let go of that perceived ‘control’ 🙂
As for my writing course, I just had that final call session with my instructor! I’m still struggling to write that story – seems like I’ll have to rewrite it again. But it was helpful and I think I’m working towards the right direction, albeit slowly! Thanks for remembering and asking about it!
Sending hugs and hope you have a great weekend! x
Thanks for the note, Sheryl! Hear you–the difficulty of focusing on quiet, constructive voices when the destructive voices can be so much louder and ever-present and persistent. I sometimes see trolls writing infuriating stuff online and think (with my proverbial–very low–blood pressure rising), “what can I say to get through to them” and eventually I remember that the answer is “nothing.” (I suppose there are a few magicians out there who find ways to communicate with trolls. Dylan Marron, Sarah Silverman…but most of us don’t have the time, patience, troll-whispering abilities, spoons…)
Glad the writing workshop has been good!!! yay! (Is your final project based on work you did during the course? Is it narrative non-fiction?) (I did an essay-writing workshop early on in my illness–with an old friend–and I learned a ton, and it meant so much to me to be able to do it. My final project didn’t come out the way I wanted, but then over the last few years I have noticed some really positive shifts in my essay writing process that at least to some degree I think is related to what I learned during the course.)
Hope you’re managing as well as can be! 🙂
Yea any energy we have really should go first to improving our own health 😉
The writing workshop was interesting, though I think online workshops never work out as nicely as physical ones! The comments and sharing sessions were helpful, but I wouldn’t say made a huge difference, for the amount of money spent! But anyway, am one little step closer to that essay I really want to write but struggle to spit out 😉 x
Hear you. Do you have a specific essay you’re working on/trying to finish, or did you mean “that essay I really want to write” in a more general way?
I think what helped me most in the course I took (3ish years ago?) were the readings. My favorite was an excerpt of Vivian Gornick’s “The Situation and the Story”. I wound up getting the audio book and really enjoyed listening to it. I can’t say I fully understand how to apply what I learned from it, but I loved her analyses of the personas different essay writers use and how they function…
Yay for little steps closer!!! 🙂
I meant a specific one, titled something like “Dying Quickly vs Dying Slowly” on my two encounters with death, and how they were different!
The readings I actually found not super helpful, because I already read such essays from the listed publishers anyway. The feedback and comments from the lecturers and other students were the most helpful, I think! Somehow for personal essays that you really really want to write about, they just get stuck, at least for me!
Thanks for sharing, Sheryl. I appreciate the reminder that if we’re looking for empathy, connection, patience, understanding, etc., that we have to express those things first. And that if we have trouble with these things, it’s usually because we need to fill up our cup! We can’t expect to get very far without any gas. Also, I like how you pointed out that not all chronic illness support groups or chronic illness blogs are supportive. I’ll admit that I find myself avoiding certain people or groups because they’re so negative. Not that I expect people with chronic illness to be chipper 100% of the time (this is impossible, and even remaining positive *some* of the time is a high success rate when dealing with chronic illness!). There’s a fine balance between “being real” (which can be perceived as being negative) and being open to solutions and new ways of thinking, all while being realistic and putting our self-care first. I push toward honesty with a willingness to grow.
Hi Nicole, totally agree with you – honesty with a willingness to grow is so important. And yes, often a lot of people on social media mistake my more raw reflections as being negative (these are usually the ones who don’t actually read the entire post to the end). That judgment can be so exhausting, and while I try not to let it bother me, it still does at times 😉 I’ll just have to keep being mindful of my own wellbeing. Keep writing and sharing Nicole, I think you have a talent for it! x
Thanks for being honest. I can totally relate. When I first started blogging on my old website, it was just an outlet, it was for fun and I only wrote when I felt well enough. Now that it is part of my job, it’s so much harder to let it go and not feel guilty when I’m too ill. Don’t get me wrong, I still very much love writing but it’s harder to have a healthier balance. If you have any tips or tricks let me know girl, cause I’m still figureing it out 😉 x
Yes indeed, there’s more ‘at stake’ when you’re committed in terms of time and emotions, as with anything I suppose! Striking a healthy balance is something I’m really bad at, not just blogging but in general…I tend to do things in extremes :p And I’m also still figuring it out myself, but the thing that keeps me going are good people like you and many others out there, too! x
With people who respond to my posts of on social media of a determinantal nature. I tend to not engage. Just say ‘sorry you feel that way’ or ‘I guess that post isn’t something you can relate to’. Keep it minimal. Even people with illnesses can be judgemental of others with a different illness, ways of coping, treatment, or even have their own illness. I really can only handle minimal interaction with them, and ignore it.
Yea that’s the logical and best thing to do, really 😉 Sometimes I manage, sometimes I’m exploding haha.
Great post and I totally get what you mean about the spreading kindness bit. I’ve said to my husband before that I don’t know why I bother sometimes. You know when people just keep taking advantage. But then he said you wouldn’t be you then.
I totally get what you’re saying, too! I wrote a post about this some time back which you might find interesting 😀 https://www.achronicvoice.com/2016/08/19/kick-ass-kindness-sweet-cherry-top/
Keep staying you, that’s super kickass 😉 x