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Have you ever wondered what it’s like to live with a chronic illness or disability, or how different another person’s life looks like from yours? This linkup aims to answer those questions.

Why Should You Share?

Here are some good reasons to share about your life with chronic illness, pain and/or disability:

  • Education. It helps to educate others on what it takes to survive with it. Many aspects may be invisible, because often we only meet people on our best days, not our worst, nor even an average day.
  • Community Bonding. Chronic illness can be isolating, and it might help you to feel less alone knowing that others may be going through similar struggles.
  • Pain Distraction. There’s no time limit so it’s a fairly low energy activity, and suitable for both introverts and extroverts! It can also be great for pain distraction.
  • Help to Create a Resource Centre. It creates a goto repository of information that’s based on personal, real-life experiences. This resource is easily accessible to any member of the public, be it a medical professional, friend, stranger or fellow chronic illness person. That can lead to better communication, understanding, empathy, and/or research material in the long run.
  • Gain Perspective. We’re often trapped within our own perspective bubble. It never hurts and may even benefit you, to see what life is like beyond the walls of our own home and lifestyle.
  • It’s Fun! It’s always interesting to take a peek into someone else’s life, isn’t it?

Remember there’s no closing date to this linkup, so take all the time you need, then add it when you’re ready! My hope is that you have some fun, read something relatable, and share something insightful here. If you don’t own a blog but still want to participate, let me know and I’ll publish it on mine if suitable.

Why Should You Read?
  • Knowledge & Insight. If you know someone with a chronic illness or disability, be it a family member, friend, colleague or acquaintance, this is a great chance to learn more about the difficulties they face on a day-to-day basis.
  • Learning to Provide the Right Kind of Support. As human beings our needs and wants vary from person to person, and those with disabilities or chronic illnesses are no different. Learn what brings them joy or what they find supportive, so you can provide them with the right kind of resources they need, instead of what you *think* they need.
  • Self-Reflection & Gratitude for a Healthy Body. Many people with chronic illnesses often look at healthy people with amazement. We wonder how you have so much energy to do what you do every day, even if it feels ‘normal’ to you. I know that I even get envious or angry at times, when I see a healthy person inflicting damage upon their bodies on purpose! This a a great opportunity for some reflection and gratitude for your hard-working, beautiful body.
  • Just Because! It’s interesting to take a peek into another person’s normal. You will probably be surprised at how different it is from yours!
How to Participate
  1. Answer the list of questions below as best as you can, but skip the ones that you can’t. Then publish the post to your blog.
  2. Add the published URL to this page, by clicking on the blue ‘Add Link’ button below.
  3. Leave a comment on at least two other blog posts in this linkup. If you like, you can also share your favourite entries to your social media!
  4. Share this main linkup page to at least one of your social media outlets to help spread the word around.
  5. Failure to follow these rules might get you blacklisted from future linkups. Let’s keep it fair for all

Thank you and have fun! Can’t wait to learn more about you and your life

Q&A: A Day in the Life with Chronic Illness, Pain and/or Disability
  1. In brief, illnesses and/or disabilities I have.
  2. My first thought and/or sensation when I become conscious in the morning.
  3. How long it takes for me to go from zero to functioning, if at all.
  4. What my morning routine is like in general.
  5. Best and worst times of the day in terms of pain, fatigue, etc.
  6. What I consider a daily self-care must do.
  7. The household chore I have the most trouble with.
  8. A task I wish I had more help with.
  9. The part of the day I like best.
  10. What’s breakfast, lunch and dinner typically like. Any diet protocols?
  11. How do I unwind for the evening?
  12. Are you are able to do any exercise? If so, what do you enjoy and does it help with managing your pain?
  13. Things that help me de-stress in my every day life.
  14. If working, how do I keep sane with the work stress? If staying at home, how do I keep sane with the isolation?
  15. Do you have any pets and how are they are a part of your life?
  16. People I see most often and my favourite activities to do with them.
  17. If you got ‘normal people sick’, how much impact does that have on top of things?
  18. If I could leap out of bed pain free for ONE day within my current environment and circumstances, I would…
  19. Is there anything else you’d like to share about daily living with chronic illness/disability?

You are invited to the Inlinkz link party!

Click here to enter


*Note: This article is meant for educational purposes, and is based on each person’s individual experiences and circumstances. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.

Other Timeless Linkups: Invisible Cities Linkup: Pros & Cons of Living with Chronic Illness in Your City

If you liked this article, sign up for our mailing list here so you don’t miss out on our latest posts! You will also receive an e-book full of uplifting messages, quotes and illustrations, as a token of appreciation!

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The post “A Day in the Life” Linkup: What’s it Like to Live with a Disability or Chronic Illness? appeared first on A Chronic Voice.

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Friday, 14 June 2019. Issue #165.

In this issue: The dread of summer when you can’t regulate your body temperature. When your supportive community turns hostile, because you’re in remission. The constant reminder from others about how prednisone makes you fat, when you’re just trying to stay alive. It would be nice to take a break from chronic illness every now and then, in whatever way possible! Would I, as a person with chronic illnesses, date or marry a healthy person? When sleep isn’t restorative and you feel worse with each passing night. A throwback of the “It’s in My Blood” series, where we celebrate the spoonie life. Prioritise the wellbeing of yourself and your loved ones; other things will probably not matter over time. Craving that elusive thing called sleep. Chronic pain and illness play by their own set of everchanging rules, ones that we have no choice but to follow.

“I can’t regulate my #bodytemperature, so when the sun begins to shine I’m often filled with more dread than happiness”: https://t.co/SJuxCvTVb4 #HotWeather #ChronicPain #ChronicLife #SelfCare

— A Chronic Voice (@AChVoice) June 13, 2019

“Imagine being part of a supportive #community for yrs..then either being rejected by that community because yr #health has improved, or being so scared of the backlash that u hv to keep yr good news a secret”: https://t.co/pfo0hdCRkx @JourneyFog #remission #mecfs #ChronicIllness

— A Chronic Voice (@AChVoice) June 7, 2019

“Everyone warns you that #prednisone will make you fat, and when it does make you fat, they remind you that prednisone made you #fat. Meanwhile, you’re just trying to stay alive”: https://t.co/4GuVO8VPb3 @HBMastCells #ChronicIllness #SpoonieProblems #ChronicPain

— A Chronic Voice (@AChVoice) June 10, 2019

“I’m not the type of person to be all ‘#whyme?’..I’m able to handle it, for the most part. I’d just like a break now and then…or a lottery win….or a free house keeper for life….I’m not picky”: https://t.co/xHpcgAPWpx @lolabellaquin #Spoonie #ChronicPain #PainFlare #ChronicLife

— A Chronic Voice (@AChVoice) June 12, 2019

[Archives] "This #question pops up..often: 'Would you date or marry a person with #chronicillness?' So I thought I’d address it once & for all, by first asking – would I, as someone with #chronicillnesses, date or marry a healthy person?": https://t.co/vSXtOn8LDi #dating #spoonie

— A Chronic Voice (@AChVoice) June 9, 2019

“My body is screaming. Nothing is functioning like it should be. Each morning when I awake from a night of broken #sleep, I feel worse than the day before. Nothing seems restorative”: https://t.co/0yqoMDcOKR @My_medmusings #ChronicIllness #ChronicPain #pacing #SelfCare

— A Chronic Voice (@AChVoice) June 10, 2019

s

“What do people with #chronicillnesses do every day? Do they even get any enjoyment out of life?” – #Throwback to the “It’s in My Blood” series, where we showcase #spoonies w different #talents & interests! https://t.co/DUnaUpjCTV @TBR_TravelBlog #people

— A Chronic Voice (@AChVoice) June 8, 2019

“Prioritise the #wellbeing of yourself and your loved ones. Let the trolls feed upon themselves; there will always be more work to do; it probably will not matter in 10 years (or after a good night of sleep); etc ”: https://t.co/3aB70JbV2r #priorities #peace #SelfCare #spoonies pic.twitter.com/nUcuoaidS8

— A Chronic Voice (@AChVoice) June 9, 2019

“One of the most elusive things in my life – #sleep! Even if I get it, it often has no restorative value. Yet I still crave it. Constantly”: https://t.co/HCAUEXcTQN @lisaalioto #meditation #MentalHealth #SelfAwareness #ChronicIllness

— A Chronic Voice (@AChVoice) June 7, 2019

“Pain & illness..play by their own set of rules. And when we thought we had learned their rules, they suddenly move the goalposts. And we have to learn a whole new set of rules”: https://t.co/T8yRFWAFJ8 @serenebutterfly #ChronicIllness #ChronicPain #linkup #spoonies #LifeLessons

— A Chronic Voice (@AChVoice) June 10, 2019

*Note: This article is meant for educational purposes, and is based on each person’s individual experiences and circumstances. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.

Read More: How Much Time Are You Wasting On Sleep?

If you liked this article, sign up for our mailing list here so you don’t miss out on our latest posts. You will also receive an e-book full of uplifting messages, quotes and illustrations, as a token of appreciation!

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The post Issue #165: The Dread of Summer When You Can’t Regulate Your Body Temperature & Craving That Elusive Thing Called Sleep appeared first on A Chronic Voice.

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Friday, 07 Jun 2019. Issue #164.

In this issue: Updated About page on A Chronic Voice with more information and resources. Schedule time for rest or your body will do so for you, and it won’t be pleasant. Your illness can’t be that bad because you’re still alive, right? Whilst yoga does not cure chronic pain, it can help with physical and mental strength. The world is still a wondrous place, despite the suffering that exists. The desperation for relief when you’re in pain, but not all advice is helpful. The challenge of accepting circumstances with grace, yet being proactive at the same time. Cooling sheets in your freezer before bedtime, to stave off some summer heat. Often people are actually pushing themselves to work twice as hard, because they underestimate their pain. Being positive is about managing your emotions such that they don’t control your life for the worse.

"My aim with this site is to raise #awareness about lifelong #illnesses from various #perspectives" – I've updated my #AboutPage to provide more information and resources. Check it out here! https://t.co/wl9fCNgyWq #MondayBlogs

— A Chronic Voice (@AChVoice) June 3, 2019

“It's important to rest frequently for better #productivity, if you don't schedule time for rest, your body will schedule it for you – and that will not be pleasant rest”: https://t.co/QSvOXNV5cS @chronic_hopeful #resting #mecfs #PainManagement #ChronicIllness

— A Chronic Voice (@AChVoice) June 4, 2019

“I mean, it can’t be that bad because you, like, still exist”: https://t.co/01RsjzCtrw @Nikki_Albert #spoonieproblems #chronicpain #invisibleillness #empathy #society

— A Chronic Voice (@AChVoice) May 31, 2019

“Unfortunately, a month of #yoga did not cure my #chronicpain, but I do think that repeated practice can help strengthen muscles and reduce #stress/#anxiety”: https://t.co/3r0vXoLwuM #fitness

— A Chronic Voice (@AChVoice) May 31, 2019

[New Post] "I know that the #world is still a #wondrous place, despite all the #grief and #suffering that exists in all living facets of it. Not once have I doubted this. #Nature is too grand, too awe-striking, and larger than all my problems combined": https://t.co/TzjMXFVnTj

— A Chronic Voice (@AChVoice) May 31, 2019

“People who are dealing with pain are often grasping at anything to help them feel better but not all advice from other #patients is good or even helpful. Definitely do your own research”: https://t.co/bHBEWjOU5v @sashannon #ChronicPain #awareness #ChronicIllness #community

— A Chronic Voice (@AChVoice) June 5, 2019

“It can be a challenge to gracefully accept how I feel at the moment, while at the same time continuing to be proactive about my #health…but I’m working at it”: https://t.co/tTDB459M4l @TheMightySite #ChronicIllness #ChronicLife #ChronicPain #choices

— A Chronic Voice (@AChVoice) May 31, 2019

“Before #bedtime, try cooling off sheets by placing them into the fridge or the freezer. When you’re ready for bed, throw your sheets back on and get some rest”: https://t.co/acHGyt9VHT #bedsheets #SummerHeat #summer #SelfCare

— A Chronic Voice (@AChVoice) May 31, 2019

“studies have even shown that people actually #underestimate their pain. So instead of being lazy they are actually working twice as hard”: https://t.co/ETHmziFZ8B @chronicmom1 #ChronicPain #spoonies #ChronicIllness #awareness

— A Chronic Voice (@AChVoice) June 2, 2019

“Being #positive isn’t about ignoring your #negative #emotions. It is about not allowing them to take over your entire life”: https://t.co/fVuOL7Zrda @graphic_organic @notebksglasses #ChronicPain #mindset

— A Chronic Voice (@AChVoice) June 5, 2019

*Note: This article is meant for educational purposes, and is based on each person’s individual experiences and circumstances. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.

If you liked this article, sign up for our mailing list here so you don’t miss out on our latest posts. You will also receive an e-book full of uplifting messages, quotes and illustrations, as a token of appreciation!

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The post Issue #164: Schedule Time to Rest or Your Body Will Do So for You & the World is Still a Wondrous Place Despite all the Suffering that Exists appeared first on A Chronic Voice.

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Friday, 31 May 2019. Issue #163.

In this issue: Tips to improve your quality of life with some home and lifestyle changes, as a person with disabilities. Being hypersensitive to everything from light to vibration and temperature with Myalgic Encephalomyelitis. Living in silence with chronic illness for fear of being a burden, and how writing/blogging can help. It might be worth paying extra for a flexible ticket whilst travelling with a chronic illness, and other travel tips. Learning the difference between Crohn’s and Ulcerative Colitis. The painful difficulties of working a full-time job with chronic pain, and other ways to earn money. The problem with fibromyalgia and many other chronic illnesses is that you’re not sure if new symptoms are related, and just how important they are. Learning to listen to your own body, as doctors aren’t always right. Reflections on the permanence of Ankylosing Spondylitis, after 10 years of living with it. Funny memes and videos that spoonies will get.

[New Post] "Living with a #disability..can transform the simplest everyday task into a challenging beast..it might not be so bad of an idea to implement some #homeandlifestyle changes that could possibly improve your #qualityoflife": https://t.co/1XecsAmsXH #ChronicBlogs #spoonie

— A Chronic Voice (@AChVoice) May 26, 2019

“I’m #hypersensitive to everything!; light, touch, noise, smells, vibrations, foods, medication, chemicals, heat, cold and irritants..All of these things cause me pain, nausea, #fatigue, headaches”: https://t.co/SQ6zmZZKye @JourneyFog #pwME #ChronicIllness #mecfs

— A Chronic Voice (@AChVoice) May 28, 2019

[Archives] "We feel like a #burden to our #family and #society, and that we don’t deserve help because we are ‘defective’. As a result, many of us remain silent for the entirety of our lives, and nobody even knows.": https://t.co/iK6FgZwaqO #InvisibleIllness #MentalIllness

— A Chronic Voice (@AChVoice) May 25, 2019

[Archives] "It might be worth paying extra for a flexible ticket, where you can change the date & time of your #flight. I have had to delay my flight a few times as I was in too much #pain": https://t.co/oPPgzA4fe1 #chronicpain #spoonietravels #chronicillness

— A Chronic Voice (@AChVoice) May 24, 2019

“I see so many posts from people who don’t know which type of #IBD they have or saying they have both – which just is not possible! I thought I would do a post to explain”: https://t.co/defTQD7VQz @thespooniemummy #UlcerativeColitis #Crohns #colitis #ChronicIllness

— A Chronic Voice (@AChVoice) May 26, 2019

“If you have a #chronicillness, the prospects of working 9am-5pm can be unbearable, putting on a fake smile for customers to hide the pain”: https://t.co/B5IRMLmvQh #ChronicPain #ChronicLife #working #spoonies

— A Chronic Voice (@AChVoice) May 27, 2019

“The thing about #fibromyalgia is that…You have no idea if a pain or symptom is fibromyalgia or some other random thing that may or may not be important”: https://t.co/3aashT6AQj @Nikki_Albert #SpoonieProblems #fibro #ChronicIllness #ChronicPain

— A Chronic Voice (@AChVoice) May 25, 2019

“Learning first-hand at 17 that #doctors can be wrong (like, really #wrong) has meant that I listen to and believe my body above what doctors tell me about it”: https://t.co/YYAMUbPfVR @kmitchellauthor #ChronicIllness #spoonies #medical

— A Chronic Voice (@AChVoice) May 26, 2019

“You realize it doesn’t take much to break a person’s spirit. I didn’t know that I’d never know another day without #pain or that pain would be my closest companion”: https://t.co/txcORrDols @globetrotteri #ChronicPain #ChronicIllness #AS #spoonie

— A Chronic Voice (@AChVoice) May 28, 2019

“Laughter is good #therapy for the soul, so finding things to #laugh at every day, no matter how silly, can make things feel brighter”: https://t.co/HCKOT9usUm @invisiblymeblog #JustForGiggles #spoonies #ChronicLife

— A Chronic Voice (@AChVoice) May 25, 2019

*Note: This article is meant for educational purposes, and is based on each person’s individual experiences and circumstances. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.

If you liked this article, sign up for our mailing list here so you don’t miss out on our latest posts. You will also receive an e-book full of uplifting messages, quotes and illustrations, as a token of appreciation!

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The post Issue #163: Living in Silence with Chronic Illness for Fear of Being a Burden & Tips to Improve Your Quality of Life as a Person with Disabilities appeared first on A Chronic Voice.

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*Trigger Warning: Nothing too serious, but a tad of a gloomy theme this June.

Repeating

So I’m saying it again, repeating it like a fucking broken record. Where did the year go to? It’s officially hit the halfway mark and I’ve officially got nothing done. It’s so fucking frustrating. No progression in any direction. I got my new work website set up nice and sweet, then in one fell swoop, I developed mysterious pain symptoms the very next day. How lucky can one get? It’s been two weeks, which included a hospital admission, and I have yet to get back on my feet.

Setting work aside, which I desperately need and is the next priority after my health, my days have melded into an abstract, and have become a rinse-repeat procedure of bed, computer, some reading and poor sleep. I have vivid, horrible dreams every night, and wake feeling drugged up. Of late, I haven’t even had the energy or felt well enough to step out of the house. I tried and didn’t get very far. After only limping for 200 metres we had to turn back and head home, where I collapsed in bed for the rest of the day. The unforgiving heat and humidity combination of Singapore added a sting to it.

Wondering

This has left me wondering where life goes from here. I try to tell myself ‘momma says take it one day at a time, that’s all we can really do, especially for me’, but I feel like I’m lying to myself for some reason. As if my mother said it really just to comfort me. Like hugging and soothing a child, shielding her from a bitter reality.

I know that the world is still a wondrous place, despite all the grief and suffering that exists in all living facets of it. Not once have I doubted this. Nature is too grand, too awe-striking, and larger than all my problems combined. It is a living ancestor to whom I bow my head, both out of reverence, and out of shame for my disrespect towards it.

I also wonder about many other things, some out of a child-like curiosity, but more with an adult’s guilt-ridden self-questioning that descends into an unhealthy, manic worrying. I am hurling rocks into an ocean that is able to swallow every single one of them; the almost inaudible ‘plop’ dies in silence. I am carrying so many rocks, many of which I have dug out with my own hands. The others seem to have rained down from the sky into my basket, unpredictable as ever, from god knows where.

I also wonder, how do others do this? How do they deal with worse than what I have? How do you do it? It makes me feel ashamed for being less strong than I was 10 years ago. So I pick more rocks up and put them in my basket as punishment.

Turning

I turned 33 in April. It felt like a turning point for me. Not 30, not 35, somehow 33. Is it the double digits? With the brain fog I do admit that it’s been easier to recall my age. I kept having to do double takes when I was 32. Nothing major has happened. It wasn’t like my year long race for heart surgery at 25. Nor my near-death catastrophic blood clotting episode at 17. Yet the problem is that nothing has been happening for a while now, as well.

I have come to appreciate long, drawn out periods of boredom and downtime, simply because these periods aren’t filled with ‘crisis level, nothing helps’ type of pain. But somehow I’m now wishing for an ‘either or’ situation. Either pain pushes me over the edge, and not taunt me with these ‘less-than-my-worse’ episodes. Or it goes away so that I can be on my way with my head held high, filling myself up with love and inspiration and life.

Where is 33 on the map of my lifetime? I’m done with and desiring simultaneously.

Getting

I know what I have to do. You don’t have to tell me again. I’m sick of being told again. I don’t need to hear words of sympathy, empathy, clichés, or even lightbulb moment insights. Of course I’m going to pick myself back up again once this bad luck dies down, whenever that may be. What else does one do?

It’s become a practice. A spoonie’s way of life. And for me, a bit of a zombie on cruise control. Maybe it’s just all the medications, brain fog, pain and moody piano music in the background talking right now. Written words that might embarrass me when I do finally meet a friend or acquaintance who’s read them in real life. But I don’t really care. I think it’s important to etch them down regardless; I can’t be the only one who feels – the irony – like a zombie out there.

Get up and carry on. Get up and carry on. I’m not sure what your mantra in life is, or what brings you hope and inspiration. But for me, to know that my one duty in life is to ‘get up and carry on’ helps me to tide through a great deal. It applies to any and all situations. Call it a bit dry, dull or soulless if you want, but I’m alive, am I not? And as long as you’re alive, your soul is somewhere in there, sleeping or hiding maybe, but it definitely hasn’t disappeared. In that sense, there is a blood-stained drop of hope. And perhaps the greatest things that one can hope for in life, are actually the most bloodied of them all.

Desiring

I am filled with desire. A taste for pleasure. A plead for pardon. A pain pill, a caress, an exhalation of relief. Pleasure is prayer. Prayers are filled with with well wishes, good intentions and more often than you’d imagine, begging. I’ve been there myself, on cold marble with bruised knees, pleading for a second chance at life. Silly girl, you should have begged for quick mercy.

I had a period of brief respite after my dengue episode in April where I actually felt good. Hearty and hale, nothing like I’d felt in ages. Life (or was it death?) winked at me, and reminded me what it’s like to own a body loaded with energy, ready to fire. It teased me and we got drunk on cheap wine, which re-opened up the pathways in the brain that inspire immortality. It’s been only a month since then so I can still kind of remember the feeling, but as you very well know, it’s just all a matter of time.

As I’m recovering from the hangover, I think to myself, maybe I’ll see him again one day. And the irony of this recovery is that it isn’t a leaving of pain, but a returning to it. Dear life, you’re quite the playboy, aren’t you? I am but a woman held bondage through your absence. Your return is always far apart and your stay swift, but you always bring the brightest flowers, and your scent is nothing of this world. My desire has left me numb, with every departure that you take.

And so as time goes my, I transfer your transgressions upon my own shoulders. I confess my part to play, a stupidity borne out of simultaneous innocence and greed. You knew me before I was in my mother’s womb, my genes a puzzle you pieced together with your own hands. I had no say in the building of my body, but I bear the consequences regardless. Life is unfair – that’s you, alright. Whatever it is come release me again soon. You have broken into me, but I am yet unbroken.

P.s. This quote popped into my inbox today and I thought it appropriate to add in:

“To have finally dealt with suffering is to consume it into yourself.
Which means you have to, with eyes open,
be able to keep your heart open in hell.
You have to look at what is, and say ‘Yeah, Right.’
And what it involves is bearing the unbearable.
And in a way, who you *think* you are can’t do it.
Who you *really* are, can do it.
So that who you think you are has to die in the process.”
– Ram Dass

Thank you for reading, and I hope to read your responses for June’s prompts too. CLICK HERE to submit your own entry, and to read about what others are up to as well!

*Note: This article is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.

If you liked this article, sign up for our mailing list so you don’t miss out on our latest posts! You will also receive an e-book full of uplifting messages, quotes and illustrations, as a token of appreciation!

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Friday, 24 May 2019. Issue #162.

In this issue: Feeling like a private investigator with chronic illness, as you seek out effective treatments. The admiration for and strength required to survive depression every day. A gentle reminder that bad thoughts will pass. There are many sources of hope out there, and it comes in different forms for each of us. Preparing hasty meals for your kids, and the addon mum guilt for being chronically ill. Kathy’s thoughts for the May linkup, and why not write that book? When your doctor doesn’t want to read the full list of symptoms on the printout, because it’s kind of scary. Each time you reach out to another patient, it helps them to feel less alone. When you forget how it feels like to be pain-free, as if visualising negative space. Mental health and fibromyalgia pain often come together, and is a year round issue.

"I think that many of us who live with #chronicillnesses often feel like private investigators or scientists…We experiment with #treatments, supplements, machines, or anything that might bring #painrelief": https://t.co/BoAYYjnirI #linkup #ChronicPain

— A Chronic Voice (@AChVoice) May 22, 2019

“I admire anyone who has the #strength & determination to continue to ‘live’ despite struggling w #depression everyday. If yr 1 of those people, please don’t underestimate the achievements u have made just to #survive”: https://t.co/82nBRrfXoS @JourneyFog #MentalHealth #spoonies

— A Chronic Voice (@AChVoice) May 19, 2019

“Just in case you were bashing yourself up mentally today, remember that everything will be just fine ”: https://t.co/JFXQFibxYg #EverythingWillBeOkay #IntrusiveThoughts #anxiety #MentalHealth #spoonies pic.twitter.com/oF9uMX59Pk

— A Chronic Voice (@AChVoice) May 22, 2019

“What works for one, may not for another..I think what it all means is that there is an abundance of #hope out there. So if you aren’t feeling much right now, keep looking! It may be just around the corner”: https://t.co/Bw7vug9e7n @lisaalioto #spoonies #ChronicLife #MentalHealth

— A Chronic Voice (@AChVoice) May 23, 2019

"There have been so many nights where I am just too tired to #cook or even eat anything for myself. So, I will make something quick..makes me feel #guilty cos there r no vegetables & it isn’t the healthiest": https://t.co/F8GSEyJyiw @BlogFibro #MomGuilt #ChronicLife #ChronicPain

— A Chronic Voice (@AChVoice) May 19, 2019

“I’m investigating the possibility of #writing a book…Part of me thinks that I’ve finally lost my marbles completely, and another part of me says ‘#Whynot?’”: https://t.co/753cSqNvXN #WritingPrompts #spoonie #ChronicLife

— A Chronic Voice (@AChVoice) May 16, 2019

“My #doctor told me that she believes that I am dealing with ‘#StiffPersonSyndrome’. She had a print out and briefly read a little. She told me she didn't want to give me the print out because some of it is kind of scary”: https://t.co/pp7jlk2pVN #ChronicIllness #spoonie #grief

— A Chronic Voice (@AChVoice) May 23, 2019

“Every time you reach out to another patient, even online, you let them know there is someone out there who understands what they are going through and who cares”: https://t.co/3PBSDJddEa @livewithmecfs #spoonies #StrongerTogether #isolation #ChronicIllness #MentalHealth

— A Chronic Voice (@AChVoice) May 20, 2019

“You also lose yr #memory of a #pain-free #body. I sometimes try to imagine myself into that life, into a body where I did not feel these #sensations, but it is like trying to visualise negative space. It feels like a logical #impossibility”: https://t.co/wd8zkXYh8R @strickvl

— A Chronic Voice (@AChVoice) May 19, 2019

“It can be a very lonely life to try picking up those pieces alone. This isn’t a one month of the year issue. #Mentalhealth and #Fibro are a 365 day triathalon of pain, suffering and #illness”: https://t.co/Pl5engdCL6 @FightingwithF #awareness #fibromyalgia

— A Chronic Voice (@AChVoice) May 17, 2019

*Note: This article is meant for educational purposes, and is based on each person’s individual experiences and circumstances. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.

If you liked this article, sign up for our mailing list here so you don’t miss out on our latest posts. You will also receive an e-book full of uplifting messages, quotes and illustrations, as a token of appreciation!

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The post Issue #162: When You Forget What it Feels Like to be Pain-Free & There are Many Sources of Hope, Which Looks Different for Everyone appeared first on A Chronic Voice.

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*Note: This post was first published on writersam.co.uk

Is Blogging About Chronic Illness Worth the Effort?

Blogging about chronic illnesses can be hard work. For some, the exposure of their privacy or the intimacy of the topics can be a deterrent. Others struggle with expressing their thoughts, or posting content on a regular basis. Vicious, unconstructive trolls who don’t even bother reading are an energy drain. Usually, it is a combination of all of these factors. So why do we even bother?

To begin with, people with chronic illnesses are the minority of the population. Every single voice counts, if we want to make a difference. Many of us struggle with feelings of anxiety and guilt. We feel like a burden to our family and society, and that we don’t deserve help because we are ‘defective’. As a result, many of us remain silent for the entirety of our lives, and nobody even knows.

The Power of a Single Voice. Your Voice.

When one person with chronic illness speaks up, they become an advocate for many others who are like them. He or she isn’t the only one suffering with this condition out there. One voice is equivalent to hundreds, thousands, even millions. Imagine that. Your voice has power and purpose. Use it for good.

A Journey of Self-Refinement

Apart from that, I find that writing on a consistent basis has actually made me a better version of myself. How so? It forces me to face my fears, by digging them out from the recesses of my mind. Proper digestion and dissemination takes time and effort. It organises the chaos of my thoughts, which usually results in an organic plan or solution.

To write is to be present and mindful. As I type, I am focussed on this very word in the moment. It forces me to slow down, to think, and reflect upon myself. The interesting thing is, I may think that I’m writing about different topics each time, but they usually lead back to the same path. Polishing various aspects of myself as a person results in the total wellness of my entire being. When I put my words to digital paper, I am making a subconscious commitment. “This is what I think. This is who I want to blossom into.” Over time, my thoughts evolve and become more refined. What we think about shapes us in the end.

Its Roles in Humanity & Society

I also find that often people don’t mean to be rude or insensitive, but are just ignorant. While ignorance is never an excuse, often they aren’t even aware that they’re hurting someone else. They say things like “I’m so OCD” in a humble brag. Meanwhile, some people with real OCD are considering suicide from the mental torment.

It is our duty to speak up for ourselves, because we know what it feels like best. Your doctor is the trained theorist and expert in providing treatment, and should be your trusted advisor. But you are the experienced navigator and survivor of actual events, as well as the leader of your own life. Chronic illnesses are complex and no two cases are the same. We need to listen to as many perspectives as possible, because each one adds a little colour to the over all picture of understanding.

Provoke thought on our mortality. Highlight hidden flaws in society. Restore faith in our humanity. Standby to catch those who might fall next. Share real life experiences. Provide credible resources. Encourage empathy. Reduce ignorance. There is so much power in writing and reading. So why not write?

*Note: This article is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.

Read More:
Why I Write, Even Though it Makes Me Uncomfortable
Does Illness Form Part of Your Identity?

If you liked this article, sign up for our mailing list so you don’t miss out on our latest posts! You will also receive an e-book full of uplifting messages, quotes and illustrations, as a token of appreciation!

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The post The Power and Purpose of Blogging, and Why You Should Write appeared first on A Chronic Voice.

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