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out some new symptoms again. To be a person with chronic illness is to be an enigma. The need to deal with a constant stream of puzzles arises, mysteries that you either solve or live with. July presented some strange new symptoms for me. It started as tingles in my legs and feet when I got out of bed each morning, before the buzzing became a steadfast companion 24 hours a day.
I am blessed that I have such responsive doctors, who communicated with each other, and slotted me in for an earlier appointment. It’s most likely to be peripheral neuropathy issues from Sjögren’s Syndrome, which has left my nerves alone until now. They’re also testing for other possible causes just to be sure – diabetes, syphilis, HIV (I did say they wanted to be sure!). I’m waiting to do the nerve test but if nothing shows up, then the next step will be to stop my blood thinners, so that I can do a biopsy to check on the small fibre nerves. Do any of you suffer from nerve-related issues? If so, do you have tips or knowledge to share?
I’m not even sure what triggered it, but that shouldn’t be a surprise with chronic illnesses. While I did change my diet somewhat as suggested by my nutritional therapist, it wasn’t anything ‘hardcore’. Anyway, I’ve cut everything out again so I’m back to square one, with additional symptoms to deal with. Don’t you hate this cycle, especially when all you tried to do was help your body out? In Chinese we have this saying, “越帮越忙”, which means ‘the more you try to be helpful, the more problems you create’. Sometimes I don’t even feel like trying new remedies out for such reasons.
my life by expanding my scope of activities. I know I sound like a broken record every month, as I repeat my ‘new’ goals but end up procrastinating mostly :p I spend a huge chunk of my life doing blogging related activities. While I still do enjoy them and have no plans of stopping, I’d also like to re-introduce other activities back into my life again.
For one, I need to take the initiative to visit my friends and family a little more. I’d also like to spend more time with nature even though I live in an urban jungle, and to start doing some light swimming again. I’d like to read more, and on a wider variety of topics. I’d like to spend more time making home cooked meals, even though I don’t like to cook 😉 I’d like to watch more movies with my partner, and discover new TV series.
Anything and everything, as you can see! I guess what I mean is that I’d like to put on my curiosity cap again, in order to exercise and stimulate my brain in more ways than one. I believe that by doing so, it will contribute to a life that’s more wholesome, fulfilling and complete.
can be stimulating in the long run. In addition to the prompt above, this also means that I’d like to start differentiating my weekends from my weekdays. Because I’m home most of the time, the lines can get blurry. I have decided that I’d like to set work, blogging, and other computer-related activities aside during the weekends (apart from my newsletter which I send out every Sunday).
I’d like to be bored. To allow my mind to wander, in order to explore new trails and creative pathways. I realise that when I’m unable to access my laptop, phone, or some other stimulus, my brain starts to get restless. Then something magical happens after it goes beyond that stage. It begins to provide me with interesting new ideas for blog topics, or throws up thought-provoking questions. It reminds me of forgotten tasks, suggests healthy activities, and proposes some useful changes I can make in my life. I try to ‘take notes’ so that I don’t forget!
I am fortunate enough to remember a time where the internet and mobile data were rarities, so I do know clearly what the benefits to being bored are. Thus I’d like to set aside my weekends and just get bored, so that when Monday comes around again, I’ll be recharged, refreshed, a little smarter from a new venture hopefully, and also more productive!
my pet birds! I read two interesting articles on the sense of touch recently. One explores the other-than-physical aspects of touch, which goes beyond just sex. It examines the consequences of being isolated in prison, and the increase of loneliness in modern society. The other is not an accurate portrayal of all the different love languages, but since it said something nice about my primary love language, I’m inclined to like it a bit more 😉 Here it says:
“The easiest and most fun to love, seriously. I adore people who speak physical touch, because it is by far the simplest one to ‘replenish.’ There’s no planning, no money to spend, and no real exertion of effort or time.”
This is actually true, though! It can be quite ridiculous to the point where my mind knows clearly that affection or sex doesn’t always equate to love, yet I still feel loved with skin contact. I like to hug my partner and feel his body pressing against my heart (although he finds this ‘claustrophobic’ at times :p). And the easiest way to calm me down and reassure me, especially when I’m in pain, is simply to stroke my hair.
But anyway, I will continue to get my cuddles from wherever I can, which includes my cockatiel, Scorcher! He’s the cuddliest of them all, and the one that’s most bonded to me. I love to nuzzle his down feathers, and stroke his tiny little yellow head. He loves to perch on my shoulder and follow me around. He often sneaks into my room when I’m taking a nap, just so he can perch on my leg to snooze in unison. He’s content as long as he can be with me, which always reminds me to be grateful for all I have in life, too!
Nice to have a work buddy at home ? . . . . . #achronicvoice #spoonie #spoonielife #spoonies #invisibleillness #mentalhealth #mentalillness #mentaldisorder #chronicillness #chroniclife #chronicpain #disability #selfcare #parrotlet #bluefallowparrotlet #blueparrotlet #cutenessoverload #cutiepie #cuteanimals #cutebirds #bird #birdsofig #cutepets #petbird #petparrotlet #pocketparrot #cheerup #workbuddy #working
#Throwback to when we first got Rudie, with his traumatised beak and all ❤️⠀ .⠀ .⠀ .⠀ .⠀ .⠀ #chroniclife #chronicillness #chronicpain #chronicdisease #spoonie #spoonielife #invisibleillness #mentalhealth #mentalillness #mentaldisorder #wellbeing #healthandwellness #wellness #bird #birdie #birdsofinstagram #budgie #budgerigar #parakeet #parrot #animal #pet #cute #hug #therapy #feathers #love #sleep #snuggle
Cuddle time with Piper aka Baby. #comforting #throwback .⠀ .⠀ .⠀ .⠀ .⠀ #chronicillness #chronicdisease #chroniclife #chronicpain #spoonie #spoonielife #mentalhealth #mentaldisorder #mentalillness #mentalhealthawareness #disability #invisibleillness #cuddles #cuddletime #cuteanimals #birdsofig #birdsofinstagram #parrotlet #greenparrotlet #aww #cutiepie #cutenessoverload #sleepy #sleepytime #gotobed #fluffy #snuggles #paindistraction
Aaah. To be a bird. But in actual fact, they are the ones who do my mental wellness good 🙂 .⠀ .⠀ .⠀ .⠀ .⠀ #cockatiel #birdlife #birdsofig #birdsofinstagram #bird #cutenessoverload #cuteanimals #chronicillness #chroniclife #chronicpain #chronicdisease #spoonie #Spoonies #spoonielife #spoonieproblems #mentalhealth #mentalillness #mentaldisorder #disability #invisibleillness #achronicvoice #enjoy #relax #headrubs #thisisthelife #bliss #massage #suckerforheadrubs #imlovinit #tame
with different people to gain new perspectives. Finally, I went for a lymphatic drainage massage to see if it would help with those nerve tingling sensations. I enjoy chatting with Veron, as we share a number of common topics of interests. I also think it’s important to chat with and listen to many different kinds of personalities, perhaps not to agree with, actually, especially not to agree with. But to learn new perspectives, and to challenge my own way of thinking.
You never know what insights you can glean from a friend, or even a random person off the street. And isn’t it fantastic to learn more about how others deal with life? We’re all navigating this same element of ‘time’, yet with variable situations, capacities and resources. Our ability to choose makes all the difference. I’ve learned quite a bit this month chatting to various people, and would like to stretch my mind even further through the knowledge that each and every person out there has to share.
Thank you for reading, and I hope to read your responses for August’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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Just joined for the first time..quick question..how did you get your Instagram pics to line up like that? Mine are one after another.
Thanks for hosting!
Hi Marya, really happy you decided to join us this month! As for Instagram, I don’t quite understand the question, do you think you can give more details? 🙂 But anyway, I just schedule them in Buffer!
Hi, Sheryl! I enjoyed reading your post. You gave me lots to think about as usual. I hope they get your new symptoms sorted soon.
Hi Kathy, thanks for reading! 🙂 Heh, I hope it’s thinking in the good kind of way ;p Yea me too! The new meds (sigh) seem to help some, but still, not a pleasant new addon as you know 😉 Sending hugs!
Wonderful reading your post this month. I really appreciate what you say about the mysteries of living with chronic illness (the ways illness can be mystifying, our sometimes really surprising, stressful reactions to foods and medication–how our bodies can be a mystery to us.)
I really like this quote: “In Chinese we have this saying, “越帮越忙”, which means ‘the more you try to be helpful, the more problems you create’. Sometimes I don’t even feel like trying new remedies out for such reasons.” It’s so true. I think it’s hard for people without chronic illness to understand how much work it can be to try new things, and how much distress and recovery time might be involved…
And what you say about trying to separate weekday time from weekend time–time becomes so strange and kind of fluid (?) when one isn’t a part of all the hustle and bustle of weekday and weekend activity. “…I’d like to start differentiating my weekends from my weekdays. Because I’m home most of the time, the lines can get blurry. I have decided that I’d like to set work, blogging, and other computer-related activities aside during the weekends.” That makes sense. I haven’t really found a way to do that, and for the most part I’m okay with it. But, I often find myself wondering about how different it is that my activities aren’t “time bound.”
Really interesting about being bored. I never really thought of it that way but I love your mediation on boredom and how it helps you come up with ideas. And the stuff about touch, that makes so much sense! It’s awful that some people are so isolated, forced to live in a world without any affectionate physical connection. I think solitary confinement is, except for in very specific and rare circumstances, utterly cruel and, frankly, unethical. And the absence of physical affection is one of the many things that can make the isolation of illness so cruel. Thanks for sharing your thoughts and linking to the articles.
As always, I appreciate your writing and your prompts. Thanks for hosting the link up and for sharing your experiences!!!
Hi Dov! Thanks for reading and participating as always 🙂 Now that you describe it that way, it’s funny huh. How it’s our bodies yet there’s still so much mystery within it 🙂
And yes! That idiom is often used when children or people try to help out say, in the kitchen. And you end up needing to do extra work because of it lol. Here’s another one you may like: 画蛇添足 which literally means ‘draw a snake, add some legs’. Kind of like messing things up by adding unnecessary things 😉
It’s strange as well regarding weekdays vs weekends, because I don’t work M-F 9-5 anymore. But I guess I’m a very rigid person (I blame my dad ;)), so somehow there are remnants of that feeling leftover from those days.
Isolation is an extremely cruel and unethical form of punishment. I think people underestimate it, but isolated prisons are hell I’d imagine.
Sending love your way! x
Sheryl, I can see that we had a lot of similarities with our writing prompts this month. Let’s make sure my cats never meet your birds. 🙂 I really enjoyed participating in this month’s link-up festivities. I’m especially grateful to people like you who are in my time zone and up when I want to chat. You do so much for our community.
I followed the link to your new diet because I was curious. I overhauled my diet again at the beginning of the year. My diet has been strict for years, but this year I really focused on eating lots of green veggies everyday that are grown by a friend of mine who is an organic farmer. He was convinced that my stomach issues were caused by bad gut flora and after a month on his rabbit diet, I am amazed at the difference. He was able to eliminate two of the three meds I take for my stomach just by introducing veggies that are grown in a microbe-rich medium. I never would’ve believed it, but even my GI doc was impressed and wondered what I had done.
Anyways, I hope you are well today. Sending spoons and extra strength for Friday. Have a great weekend!
Hey Carrie, I enjoyed reading your prompts, too! It’s amazing how all the entries can be so different or similar even though they’re derived from the same words 🙂 I think this month it was especially varied with the ‘Boring’ prompt, actually! Very interesting 🙂
And I’m happy to have someone in my timezone too. As an expat living in Asia, I guess you know the feeling of constantly needing to adapt to ‘the other side of the world’ haha.
I rewinded my diet so I’m really back to square one now. Just waiting out these new nerve and epileptic symptoms, before I slap on new things or changes again! But definitely going to retry again soon-ish.
Btw, I’ve always been super curious about the healthcare system in Taiwan, and how you manage there as an expat. If you’re happy to share, feel free to email me, or I could interview you someday if you’re up for it. I think it will be a super interesting topic – living overseas with chronic illnesses! You take care too! x
Thank you for this! I have a hard time resting (being boring doesn’t feel productive to me), but you’re so right that it’s in those quiet moments that we give ourselves the space we need to breathe, refresh, and be creative. Some of my best ideas come to me on walks or in the shower, when I’m not connected to my phone or computer! Thanks for the reminder to take a break.
Hey Nicole! Yes I kind of see them as a different kind of consolidation and productivity (there’s me convincing myself ;)). Take care of yourself, dearie!