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Saturday, 26 May 2018. Issue #111.

In this issue: Thoughtful gifts for a friend in need can include services, such running errands. That guilty feeling when you can’t contribute equally to a relationship. Celebrities may have more resources, but it doesn’t mean that they’re in less pain, or deserve less empathy. Ways to reduce stress, which is ever-present with chronic illness. Being honesty with your therapist is vital if you want to heal and/or manage your mental health. Parenting problems with chronic illness – kids don’t understand the concept of needing a break. Healthy coping method of spending quality time walking with a loved one outdoors. Some of our ‘true friends’ are strangers online, who understand our pain completely. Lessons learned from turning pain into purpose, which evolves over time. Striking a happy balance between caregiving and a healthy relationship.

“Offer your services – Offer to do their grocery shopping, run errands, do their laundry or clean their house”: https://t.co/pL6AAEdCm2 @Unbrokensmile1 #chroniclife #chronicillness #friendship #support #kindness

— A Chronic Voice (@AChVoice) May 23, 2018

[Archives] So one day I said to my current partner, 'I’m sorry I have nothing to offer you. I don’t have money, I don’t have the energy to party or go for many social events, & I’m extra #troublesome'": https://t.co/47fvFMwoUL #spoonieproblems #chroniclife #truth #chronicillness

— A Chronic Voice (@AChVoice) May 20, 2018

#Celebrities may have more money and resources…but that certainly doesn’t mean they are immune to the debilitating symptoms the condition can cause”: https://t.co/lIK3FSExHs @TheMightySite @paige_wyant #Fibromyalgia #chronicpain #chronicillness #spoonies

— A Chronic Voice (@AChVoice) May 21, 2018

"With any chronic or rare condition, #stress is always present…our stress isn’t going anywhere unless we react differently to it": https://t.co/NdF6WGyQ4r @TheMightySite @heyitsTiffanytt #selfcare #spoonies #stressmanagement #chronicpain

— A Chronic Voice (@AChVoice) May 23, 2018

“It can be embarrassing to admit that you suffer from #suicidal thoughts or that you hear voices, but the more honest you are, the better equipped the #doctor is to help you fight your personal battle”: https://t.co/lvggCjp3B4 @art_ofsurviving #mentalhealth #therapy #chronicpain

— A Chronic Voice (@AChVoice) May 24, 2018

“We’re in pain and we need a break, and #kids, unfortunately, have no idea what that means”: https://t.co/sJqfeWONhZ #parenting #chronicpain #spooniemum #chronicillness

— A Chronic Voice (@AChVoice) May 20, 2018

“Not only was this walk good #exercise for us both, but it was so good to get out in the sun and fresh air and spend #qualitytime with my Dad and create some happy memories”: https://t.co/fm16e1oupD @notebksglasses #walking #chronicillness #spoonie

— A Chronic Voice (@AChVoice) May 22, 2018

“Some of the ‘true #friends’ are #strangers online, but I actually get more joy from our interactions than I did from some of the people I felt duty-bound to spend time with”: https://t.co/6G2InvLdlQ #spoonies #supportgroups #chronicillness

— A Chronic Voice (@AChVoice) May 20, 2018

“I also believe #purpose evolves and I have found my pot of gold many times, but I have many more to search for and chase”: https://t.co/y9Qs6iFnar @migrainemantras #lifegoals #selfawareness #spoonie #chronicpain

— A Chronic Voice (@AChVoice) May 18, 2018

“Just because I’m ill and #disabled also doesn’t mean that I’m less awesome, less loveable, or less worthy of being in a solid #relationship”: https://t.co/fGdSkH6KYQ @yellow_erin #caregiver #chronicillness #selfworth

— A Chronic Voice (@AChVoice) May 20, 2018

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!

The post Issue #111: Thoughtful Gifts Can Include Services & Ways to Combat the Ever-Present Stress with Chronic Illness appeared first on A Chronic Voice.

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A Surprising Thought During a Floral Workshop

Recently, I attended a floral workshop as part of a good friend’s hen’s party. Such classes aren’t that cheap, so in a way I was glad to finally have an ‘excuse’ to go for one without feeling guilty (P.s. I understand why they’re charged at those rates, premium flowers don’t come cheap. But it’s still quite a bit to spend for only a few hours!)

As we sipped on our champagne and listened to the florist share about her philosophies, she said something which made me think: “Flowers are the most beautiful when they’re just about to die”. Perhaps I’m getting a bit obsessed, but my thoughts drifted toward those of us who live with chronic illnesses.

The Fast Track Spoonie Life

The next bit might sound a tad morbid, but I find comfort in it. The fact is, everyone is going to die some day, but as spoonies we’re kind of dying at a faster rate. All those drugs and treatments we undergo can be just as toxic as our illnesses themselves. Our bodies are beating themselves up, causing grievous self harm without good reason. It’d only make sense that such unhealthy patterns would shorten our lifespan! Although I must add, life can be quite the joker and we might just outlive everyone else

We’re in Full Bloom. Bold, Chaotic and Life at Its Best.

This made me think, does this mean that we’re already forced to be at the blooming stage? That life has huffed and puffed into our tight middles, and ruffled our petals to instigate growth? (This was actually a trick I learned from the florist, to encourage flowers to open up faster!) We’re definitely no fresh buds, but in full bloom. We’re a fierce and chaotic burst of colour. While pain is never pleasant or desired, it provokes expansion within our minds. No one walks away without learning a little life lesson or two.

Just like flowers that have been cut, we can with the proper nutrition, care and environment. We may or may not be on the faster track towards death, but since we’re already in full bloom, we might as well brighten the lives of those around us. Yes, we’re still in pain, but we do have the power to transform that into something beautiful. We might as well use our current state to inspire life within those who are hurting around us.

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Read More: Life with Chronic Illness: Happiness & Pain Can Co-exist

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The post Flowers are the Most Beautiful When They’re Just About to Die (and What That’s Got to Do with Being a Spoonie) appeared first on A Chronic Voice.

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*Note: This is a sponsored post.

It’s estimated that approximately 76.2 million Americans suffer from chronic pain in some or other way. That’s about twenty five percent of the total population of the United States if you take a closer look at the numbers, which is a very significant percentage. We can define chronic pain as some kind of condition that leaves you in persistent pain, and this can include a wide range of conditions – all of them causing long term discomfort and pain.

To deal with chronic pain doctors often prescribe opiates, but opiates aren’t particularly effective for managing pain in the long term. And more troubling is that opiates if not used correctly can be very dangerous and lead to addiction and in dire situations overdose. Here are some natural ways you can fight chronic pain and manage your condition.

1. Hypnotherapy

There’s far more to hypnotherapy than just the hypnosis that you might imagine taking place on a stage in front of an audience – or the kind of ominous hypnotist that Hollywood has portrayed in hundreds if not thousands of movies. In reality, hypnotherapy is a well-known and acknowledged medical treatment in the psychological field, and people have successfully used it to treat many things – including the pain associated with childbirth, trauma during your childhood. Using it for chronic pain conditions could be effective in that in can help you focus your mind on other things, which can alleviate the feelings of pain that you are having.

2. Massage

While we can’t say for sure that massage will help every condition because there are so many different things that can cause chronic pain, we can say that massage is beneficial in general. In fact it’s been studied and noted to be effective for a range of conditions that include chronic pain after an injury or surgery.

Massage is generally recommended as a treatment while you are recovering from surgery – and it’s something that you can continue at home. You’ll find that your pain is much easier to manage, and that you feel relaxed after. You can even combine with CBD oil, which is noted for providing additional pain relief for many people, but make sure to read up on it to find out which CBD oil is the best before you buy it.

3. Reflexology

Reflexology is a well-known treatment that involves pressure being applied to certain parts of the body – usually the hands and feet – in order to relieve the stress or pain from certain conditions in the body. Reflexology has been studied at length, and it has been proved that you can even use reflexology to successfully treat internal conditions such as kidney pain. Reflexology might not seem like your thing at all, and you might not have thought of it as a treatment yet – but you can take a deep breath and relax: Reflexology is for everyone – and it will bring you some relief from your chronic condition and manage to relax you at the same time; your reflexologist might even be able to treat conditions that you might not have known you had.

4. Wild Lettuce

No, wild lettuce is not just some colloquialism for Marijuana – though a lot of people seem to think it is. Wild Lettuce is instead a completely different kind of plant on its own, and it’s so ridiculously common that we would expect that you have some of it in your garden or neighbourhood already and have not realized it. In fact, a lot of people mistake wild lettuce for dandelions.

The plant can be a great way to tone down chronic pain – and it’s legal in many parts of the world that don’t have another alternative. However, make sure that you consult an expert before you consume plants that you picked for yourself – especially for pain management to make sure that you’ve got the right one. Instead it’s better to just buy it from a reputable source.

*Note: This article is for educational purposes, and 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!

The post 4 Ways to Fight Chronic Pain appeared first on A Chronic Voice.

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*Note from A Chronic Voice: The term ‘PTSD’ is often associated with war veterans, yet trauma can stem from many other life circumstances as well. This includes things like accidents, childhood abuse, chronic pain, and other stressful situations.

Some of the signs of PTSD are suicidal thoughts, insomnia, and recurrent flashbacks of the life-changing moment. No matter how minor the event may seem, the victim’s suffering should never be undermined. PTSD affects both the individual and the people around them in negative ways. It is always a good idea to seek help, in order to regain quality of life . This is Rozy’s life story of how her PTSD started, and what helped her to overcome it and to have faith in life once more.

What is PTSD?

Have you ever seen someone suffering from post-traumatic stress disorder or PTSD? If your answer is yes, then you must be aware of how this mental condition affects one’s life, or the kind of problems people face when they struggle with it. If you’ve never had an opportunity to spend time with someone who’s suffering from PTSD, then it’s extremely difficult to understand the consequences this has on one’s health and overall well-being.

PTSD is a mental illness that occurs when a person is exposed to a traumatic event such as the death of a loved one, divorce, a horrific accident, or sexual abuse. As with several other mental illnesses like alcohol addiction and anxiety disorder, it is just as difficult to recover effectively from PTSD in the absence of professional help.

Why I Wrote This Article, and How PTSD Started for Me

My main intention behind writing this post is to help those who are struggling with post-traumatic stress disorder. Since I have also suffered from this problem, I know very well what it feels like to be haunted by the memories of a traumatic event.

For me, it was the accident of my teenage son which shattered my life like nothing ever had before. I was driving him to school one fine day, when all of a sudden I lost control of my vehicle, and collided into a nearby tree. I received minor injuries during the accident, but my son was badly injured. The moment our car crashed into that tree, I heard him shout and cry out in fear, and those sounds are still fresh in my mind. I found him unconscious and fully covered in blood. We were rushed to the hospital by the passers-by, and thankfully both of us survived.

My son stayed in the hospital for nearly a month because of his injuries, but with God’s grace he is in great health now. However, the memories of that accident are still fresh in my mind. I can easily recall everything that had happened to us that day, even though five years have passed.

The Initial Stages of PTSD for Me

I was tensed and depressed whenever I looked at my son in that condition. The worst part was that I was too scared to drive my car, so I didn’t touch it for nearly one and a half years after that traumatic event. Every time I tried to take control of the steering wheel, memories of that horrific day would flash before my eyes.

As my condition was getting worse by the day, my husband suggested that I seek professional help. That’s how I found out that I was struggling with PTSD. I then underwent trauma therapy from Charter Harley Street, which proved to be very helpful in my recovery.

Trauma Therapy is Designed for PTSD Recovery

Trauma therapy is really one of the best ways to recover from PTSD, because it is designed to help people battle the negative thoughts which are causing trouble for them. When I first met my therapist, he asked me to explain everything about the event that was making it difficult for me to live a peaceful life. He kept asking me many questions, in order to understand the problem fully. I gave him my honest answers each time, and the best part was that he didn’t judge me.

All he was trying to do was listen to my problems, and convince me that those were common issues that people with PTSD go through. I still don’t understand why or how, but I felt good and confident right after my first therapy session.

Trauma Therapy Over Time

As I kept meeting my therapist at regular intervals, I saw a significant change in my behaviour and overall well-being. The first thing that I understood during trauma therapy was how my negative thoughts were causing great problems in my life. I also learned how to deal with them effectively.

Once my therapy sessions were over, I discovered a new me, one who was more happy and confident. I also adopted a number of interesting habits; for example, I started my own workout routine to enhance my fitness, which helped me a great deal. I still go for regular morning walks and stick to a very healthy and balanced diet to this day.

So if you’re also struggling with PTSD, trauma therapy is something you may want to consider to help you recover from your problem.

*Note: This article is Rozy’s personal account for educational purposes, and 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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Contributor Bio



Rozy is a writer, graduate and absolute pet lover. She loves butter chicken, and seeing her little pug, naughty Duke. When she isn’t writing, you can find her at her nearby coffee shop. Connect with her on: Twitter.

The post How Trauma Therapy Helped Me to Deal With PTSD appeared first on A Chronic Voice.

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Saturday, 19 May 2018. Issue #110.

In this issue: Life encompasses all ways of living; you don’t have to tie yourself down to a narrow frame of ‘strength’. Acceptance doesn’t mean giving up, but focussing on what you can rather than what you can’t do. How many spoonies would like for society to treat them – with less judgement and more understanding. Thoughts of suicide when you live with chronic pain isn’t uncommon, and thoughts of love keeps this spoonie going. The biggest struggle of people with invisible illnesses is the lack of belief in their pains. Feeling blessed and grateful for the kindness shown by loved ones while in pain. The surprising misconceptions about who can and cannot park at a disabled spot. Wise last words from grandma, “never let fear hold you back from becoming a mum”. Hating brain fog as a person with ME/CFS, because it’s that disruptive to life. Disability doesn’t only include the use of assistive technology or service dogs, but covers people with many other health problems, too.

[New Post] "Life is large, everchanging, and tethers itself to no one #society, thought or #perspective. It encompasses all ways of living": https://t.co/cXxjEmgc1w #spoonies #chroniclife #selfawawreness

— A Chronic Voice (@AChVoice) May 13, 2018

“It’s about recognising your limitations and being at #peace with how things are right now. It’s about focusing on what you can do rather than what you can’t do”: https://t.co/OrcIvlhvaO @JourneyFog #acceptance #selfawareness #spoonie #chronicillness

— A Chronic Voice (@AChVoice) May 15, 2018

“Someone having to live with an #invisibleillness has to try and do so much more to be able to survive in a world full of judgmental people”: https://t.co/Rui2wzI0DS @chronicpainind #society #empathy #spoonieproblems #chronicillness

— A Chronic Voice (@AChVoice) May 14, 2018

“I don’t actually think thoughts of #suicide are uncommon. I just think some of us are more open and honest about it than others” – and how thoughts of love and #lovedones keeps @AliApow going in life: https://t.co/INamz3a38n #spoonie #chronicpain #chroniclife #mentalhealth

— A Chronic Voice (@AChVoice) May 17, 2018

“Their reasons are varied, but the most common and most upsetting reason is that they feel misunderstood or not believed at all”: https://t.co/Q6KToftudO @chronic_hopeful #invisibleillness #spoonies #awareness #chronicpain #disability

— A Chronic Voice (@AChVoice) May 13, 2018

Been up since 5am and not eaten anything much. Same cycle for days. I told my bf I was craving #Ribena (a glucose drink I used to have when I was sick as a young girl), and he just got up, put on some pants, and went to get some at 10pm. I am #blessed and #grateful #spoonie pic.twitter.com/nnvzG8KwiN

— A Chronic Voice (@AChVoice) May 14, 2018

"There are a lot of misconceptions and stereotypes surrounding who 'gets' to park in an #accessible spot and who must be 'faking' their #disability in order to park closer to the building": https://t.co/UZ8L5FiTmB @TheMightySite #parking #parking #society #invisibleillness

— A Chronic Voice (@AChVoice) May 14, 2018

“As I bent down to hug my Grandma..goodbye, she pulled me close to her & whispered.., ‘You will be a great #mother. When the time comes u will be able to do it. Never let fear hold u back fr being a mom’”: https://t.co/MyAvSCAHIc #spoonie #womenshealth #pregnancy #chronicillness

— A Chronic Voice (@AChVoice) May 17, 2018

“I HATE #brainfog and it affects my life a lot. It can totally disable me and preven me from even having a conversation or following simple instructions”: https://t.co/q1xjORWHjM @Not_Just_Tired #spoonie #mecfs #chronicfatiguesyndrome #chroniclife

— A Chronic Voice (@AChVoice) May 13, 2018

"I thought #disabilities required the constant use of assistive technologies and aides like wheelchairs or seeing-eye dogs. I thought you had to be 'really' #disabled for it to count": https://t.co/KUAsDhSg9H @TheMightySite @MorganJBolt #disability #invisibleillness #society

— A Chronic Voice (@AChVoice) May 18, 2018

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!

The post Issue #110: Acceptance Doesn’t Mean Giving Up & Disability Goes Beyond the Visible appeared first on A Chronic Voice.

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Whether you suffer from fibromyalgia, you have arthritis, or you have any other ailment that causes chronic pain, you probably spend more time tossing and turning at night than you do sleeping.

The pain makes it hard to get into a comfortable position so that you can fall asleep. And even if you do finally get comfortable and fall asleep, you are suddenly jarred awake by a searing sensation. Lack of sleep isn’t only bad for your mental and physical health, but it also compounds your pain, making it worse and harder to handle.
Fortunately, there are ways that you can handle your chronic pain and get a more restful night of sleep. Here are some highly effective strategies that you should consider trying.

Hit the Sack When You’re Tired

Don’t go to bed until you’re actually tired. Though it might seem like turning in early would help to combat your pain and your sleep issues, it can actual make things worse! If you aren’t tired, you’ll just end up lying in bed and focusing on your pain. The more you focus on your pain, the worse it gets, and the harder it will be to fall asleep.

Do Something Soothing

In order to promote sleep and take your attention off of your pain, try doing something soothing before you go to sleep. Reading, painting, listening to music, knitting, or meditating are all great activities that promote relaxation and will help you focus on something other than your aches and pains. Plus, these soothing activities help to calm the mind and get you ready for sleep.

Make Things Cool

Though there isn’t an ideal temperature to sleep in, as every person is different, a cooler environment promotes better sleep. When you’re room is hot and stuffy, you’ll just feel uncomfortable, which will make it harder to fall asleep. And when you can’t fall asleep, you pay more attention to your pain.

Try adjusting the temperature in your room until you find one that works you are the most comfortable in. This simple strategy could really make a world of difference.

Try a Natural Muscle Relaxer

A natural muscle relaxer can work well, too. Relaxeril, in particular, has been proven to ease the soreness and stiffness that is often associated with chronic pain. When you’re in less pain, falling asleep – and staying asleep – is so much easier. Plus, this all natural supplement has the added benefit of promoting a deeper, more restful, and longer lasting sleep, which will help you get the best sleep possible.

Get in Some Exercise

Though it might sound counterproductive if you’re dealing with chronic pain, exercise can actually be more beneficial for your pain than staying dormant. When you work out, you trigger the body’s natural healing process, which can help to ease your aches and pains. Plus, working out also helps to promote better sleep. You don’t have to do anything too intense; try taking brisk walks for at least 20 minutes a day, swimming, or riding a bike. These physical activities can help to ease your pain, invite more restful sleep – and they can improve your overall health and well being (while shedding some pounds), too!

Try Different Pillows

Believe it or not, something as simple as changing out your pillows can do a world of good for managing your chronic pain and helping you get a better night of sleep. Choose a pillow that is designed for the position you prefer to sleep in. For example, if you prefer to sleep on your back, find a pillow that supports the natural curve of your neck, and if you sleep on your side, a thicker pillow can hold your neck and spine in proper alignment and alleviate pain.

Note: Alway consult your own doctor before starting or stopping any new treatment or protocol. Every individual is different, and this article should not be substituted for medical advice.

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!

The post How to Get to Sleep and Stay Asleep with Chronic Pain appeared first on A Chronic Voice.

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*Note: This post was first published on prohealth.com, and is republished here with permission from the editors.

When Inspiration Becomes the Standard

We often tell ourselves or others to ‘be strong’ or to ‘be brave’. Instead of instilling inspiration, these statements can sometimes provoke the opposite effect. It becomes another standard we have to meet, and triggers more ripples of fear. A colossal ideal that sits atop the shiny, elevated pedestal erected by society. It’s unreachable by the average person, and a desired possession for our egos. The path to get there can even be harmful at times, as we sacrifice important aspects of ourselves along the way.

A Sense of Stolen Identity

I was feeling somewhat down the other day, as I felt that I had lost a lot of the fire I possessed in my youth. When I was going through the most painful experience of my life at 17, I didn’t really take any painkillers, as I had bought into the belief that they’re bad for you. Now, I pop one when I feel that I’ve had enough. I’m sick of being in pain. While that makes sense, I’m also somewhat disappointed, as if I had lost a quality I admired in myself. I was no longer ‘strong’ or ‘brave’, just a weakling who relied on painkillers for pain that was much lesser than what I had experienced before.

But a thought sliced through that despair. I realised that I didn’t have to be STRONG, I just need to be stronger. I don’t have to be BRAVE, just a little braver than before. A little kinder, a little gentler, a little better than before. I felt a sense of courage jolt through me with that thought, all within the span of a few seconds.

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Setting Realistic Standards

The problem with trying to be ‘Strong’, is that we’re comparing ourselves against an impossible standard. We’ll know when our intentions are wrong, when we worry about how others will judge us should we fail to meet it.

Instead, we can take that standard to meet us where we are in life right now. By doing so, we turn that impossibility into a possibility that we can meet. Life is large, everchanging, and tethers itself to no one society, thought or perspective. It encompasses all ways of living. We don’t have to worry that we’re degrading into worthlessness, as long as we keep moving in the right direction.

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What’s the Point to Courage Without Fear?

The word ‘courage’ would probably have no meaning without the existence of ‘fear’. Courage is to look fear in the eye (or in the corner of your vision!), and to walk past that dragon’s lair anyway. If that demon doesn’t frighten you, then you could stroll by without the need for bravery.

Even if all you take is one small step forward, it is still a powerful act. It is to have some faith in yourself, to know that you can traverse this travesty, and survive this tragedy. When I feel overwhelmed, this thought inspires me. I feel a sense of relief, as if the heavy weight of that gold standard is lifted, so that I can move and actually get going.

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“Courage is resistance to fear, mastery of fear, not absence of fear.” – Mark Twain

Read More: 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!

    For More Insight:
  • When You’re a Strong Person Struggling With Depression (article on themighty.com): https://goo.gl/kWHSvq
  • How To Get A Depression Resistant Brain (article on thebestbrainpossible.com): https://goo.gl/kzBrYh
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The post You Don’t Have to be Strong, You Just Have to be a Little Stronger Than Before appeared first on A Chronic Voice.

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Saturday, 12 May 2018. Issue #109.

In this issue: Many spoonies manage to hide their pains really well, to the point where we can’t even identify each other! The importance of being your own biggest health advocate, and holding onto hope. Showing gratitude to our mothers, who never fail to show up despite feelings or circumstances. The unchargeable life of a spoonie, where our energy never gets fully replenished. The problem with the word ‘tired’ is its overly open taken. What is #MillionsMissing all about? A comic to show the difference between normal fatigue, and Chronic Fatigue Syndrome fatigue. Have you ever treated sleep as the precious gift that it is? The difficulty of explaining fatigue to others, because it affects us all in different ways. What happens when you survive trauma to the brain, but lose parts of your identity you took pride in?

[New Post] #GuestPost by a Friend Who Also Suffers from #ChronicPain – "We had all managed to conceal our conditions so well, that we couldn’t even identify ourselves amongst other #spoonies!": https://t.co/0dMtF0ojRD #chronicblogs #chronicillness

— A Chronic Voice (@AChVoice) May 6, 2018

“the most important thing for me has been becoming my own #health #advocate, keeping an open mind and holding onto the hope that I could get better”: https://t.co/mlTgMZTYtY @thedailymanic @febstarsblog #spoonie #chroniclife #chronicillness

— A Chronic Voice (@AChVoice) May 9, 2018

[New Post] "It is to wake up every morning and to #showup despite feelings or circumstances. This is tough, and #mothers do it without demanding accolades or favours in return": https://t.co/6dS6X4c5eL #spoonies #chronicillness #lifelessons

— A Chronic Voice (@AChVoice) May 9, 2018

“Though people with #chronicillness have a battery that doesn’t recharge no matter how long you leave it charging. We’re #unchargeable”: https://t.co/WPomvj3EHO @chronic_hopeful @Unchargeables #spoonieproblems #spoonies #chroniclife

— A Chronic Voice (@AChVoice) May 8, 2018

“The problem with the word ‘#tired’ is that, in many ways, it’s too relatable. To different people, it can mean different things”: https://t.co/u97G1fKNJI @TheMightySite #chronicfatigue #chronicillness #society #wordsmatter

— A Chronic Voice (@AChVoice) May 8, 2018

“And if you’re wondering why we use the hashtag #MillionsMissing – it’s pretty simple. These diseases make us disappear from our lives, and from yours”: https://t.co/XLlR8jijVE #mecfs #chronicfatiguesyndrome #pwme #spoonies

— A Chronic Voice (@AChVoice) May 7, 2018

“The #comic is all about how energy and exertion differ between the two women, and how their experience of meeting up for a coffee has a dramatic effect on Maddie and none on Nancy”: https://t.co/LBzaTmS9wy @lauras_pen #mecfs #chronicfatiguesyndrome #spoonies #MEAwarenessMonth

— A Chronic Voice (@AChVoice) May 5, 2018

When someone thoughtfully gives me a gift, I receive it enthusiastically…Most importantly, I’m #grateful for it. Then I asked myself, 'Have I ever treated #sleep as a gift?'": https://t.co/UB51VAPKGr #mentalhealth #painsomnia #chroniclife

— A Chronic Voice (@AChVoice) May 10, 2018

“One of the problems is that #fatigue affects everyone differently, and that can make it really hard to explain to others”: https://t.co/jXbeOF5y9V @dizzythedonkey #chronicfatigue #mecfs #chronicillness #spoonieproblems

— A Chronic Voice (@AChVoice) May 4, 2018

“While I won my struggle to #survive, much of my #identity—as a Stanford professor, a speaker and writer, an athlete, a mother and a wife—was gone”: https://t.co/FqwF7VuDJe @michelle_munt @TheftBook #stroke #braininjury #brain

— A Chronic Voice (@AChVoice) May 10, 2018

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The post Issue #109: The Problem with the Word ‘Tired’ & the Importance of Being Your Own Health Advocate appeared first on A Chronic Voice.

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Life’s Ultimate Superheroes

There’s no need to state the obvious I suppose, but many mothers are the ultimate superheroes in everyday life. They’re the ones who show up when things get rough, and showing up once is the easiest part! Unlike the movies where superheroes calm calamities in an instant, real life problems require steadfast reappearances. It is to wake up every morning and to show up despite feelings or circumstances. This is tough, and mothers do it without demanding accolades or favours in return.

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When Your Child has Special Needs or Chronic Illnesses

Being a mother to a child with special needs or a chronic illness can be extra rough. Doctor appointments replace football practices or ballet classes; hospital stays become the norm instead of camping trips. It’s heartbreaking when they cry out and beg you for relief, yet there’s nothing more you can do for them. Frustration fills you as you go to the doctor’s for answers, but come home with more questions instead. Such a family dynamic is stressful, yet these mothers never give in or up.

Insights from My Own Mother

As Mother’s Day is around the corner, I thought that it would be a good idea to interview my own mum. It felt a little strange, as we don’t usually discuss such thoughts on a regular day. Maybe it’s a cultural thing and I’m sorry to go with the stereotype, but we’re Chinese after all Despite that, I know with certainty that no one else in the world cares about me more than she does. I’m reassured that she has my back no matter what, and that thought is a blessing and comfort in itself.

So here’s my beautiful mother for you today. Happy Mothers’ Day to all the splendid mummies out there! (All the italic text in brackets during the interview are little interjections from me.)

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A RARE INTERVIEW WITH MY OWN MOTHER!
  • What emotions and thoughts went through your mind, on the night you had to send me to the hospital, and the doctor told you that I could have died?

    My mind just when blank. Fear and anxiety. Things happened so fast that I couldn’t do anything but to pray and ask God for His mercy and grace. I also called up my prayer partners to pray. I told myself to keep focussing on the positive, that you would pull through.

    As I was praying with Shirley (a friend) next to the hospital bed, a picture of the passover story in Exodus played through my mind, where God passed through and struck down the firstborn of every household. But those who marked their doors with the blood of a lamb were spared. I felt assured by God that you would pull though by dawn.

  • What’s the biggest worry you have for your child?
    That she leaves God and gives up her fighting spirit.
  • What makes you happiest?

    To know that your child is coping well, and that she’s able to relate to you about her feelings, conditions and fears.

  • What breaks your heart?
    • When my child thinks that I don’t understand or don’t know anything about what she’s going through.
    • Expectations. Sometimes I can feel the frustration and disappointment in her, when she expects me to know everything about what she’s going through, and expects me to have an answer to her problems. I feel lousy when I’m unable to meet that expectation, and I feel hurt on the inside.
  • How do you personally cope when your child is suffering or receives a devastating new diagnosis?

    I always feel helpless. All I can do is cling onto God and my prayer support network. It’s always reassuring to know that someone in the group is praying for me and family. The Bible says, “When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through fire, you shall not be burned, nor shall the flame scorch you.”

  • What’s it like to be a mother to a chronically ill child? What qualities or characteristics have you had to hone because of this?

    I feel sad and deeply hurt to see my child going through suffering, and being unable to help her cope with the pain, nor able to find a solution to her suffering. Sometimes I wish that I can take over her sickness. However, through the years I have learned to be patient, and to endure the hurts that are within me. It cheers me up just to see a smile on her face, and to see that she is well.

  • What ‘normal’ activity or thing did you wish your family could do together, if everyone were healthy?

    Our family loves to travel. I remember some of the fun times we had in Switzerland and Hong Kong. The joy of going to church together in Hong Kong. It would be nice if we could go back to the good old days. I would love to relive the good old times.

  • *If* you had the choice to go back in time and choose never to have your child who’s ill, would you do so? Why or why not?

    No. Every life is precious in the sight of God. I remember almost losing my eldest daughter while in Malaysia, when I was only a few months pregnant with her. I begged God to protect her, and surrendered her to Him.

  • Do you blame yourself in any way for your child’s condition?

    Sometimes.

  • What’s your biggest/best piece of advice to other mothers with children who are chronically ill?
    • Stay positive for your child.
    • Be a listener. Sometimes being a silent supporter may ease the tension between a sick child and the caregiver. Whatever you say may hurt.
    • Just being present.
    • Prayer.
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  • What’s the biggest life lesson you’ve learned through all this?

    Be thankful and grateful always. Every single day of life is a blessing from God. There are friends who care and are faithfully praying, even though we don’t speak much.

  • What sort of support did you wish you had more of in regards to being a caregiver to your child?
    Emotional support.
  • What sort of activities do you do to replenish your own supply of energy and to restore emotional wellbeing?

    Playing the ukulele, meeting up with friends, spending time alone away from home, and doing some charity work. Praying and reading the Bible does help me emotionally.

  • What’s your happiest memory of you and your family?

    The good times we had in Hong Kong while living there – the fun of playing with simple carton boxes, doing puzzles, the togetherness as a family, the prayer time, the weekly outings. During those days there wasn’t such a thing as mobile phones. There was more family time and verbal communication.

  • What did you wish your child could do?

    Don’t suffer alone. Communicate more even though I may not be able to provide any answers.

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*Note: This interview is meant for educational purposes, and is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.

Mum and dad in Cape Town, South Africa.

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The post What’s it Like to be the Mother of a Sick Child? (Precious Insights from My Own Mum) appeared first on A Chronic Voice.

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*Note from A Chronic Voice: Angela and I met at a party through our ex-boyfriends (talk about how life goes ), and I never knew that she suffered from chronic illness too. She was living overseas – which can be especially tough for a spoonie! – and seemed so outgoing.

After I started this blog, I discovered that she and a few of my other friends and ex-colleagues suffered from chronic pain too. We had all managed to conceal our conditions so well, that we couldn’t even identify ourselves amongst other spoonies! This just goes to show how invisible pain truly can be, and that you never know how much stress a person is really enduring. It’s also a reminder that I need to pay closer attention to my loved ones, as distress isn’t always loud and clear.

Angela suffers from precancerous endometriosis, yet lives an active life whenever she gets the chance. She believes in living life to fullest and started “Pod Of Life” on Facebook, which promotes and trains people on resilience. In this article she shares about her 3Rs perspective to resilience in relation to living with chronic pain. I really like her definition of the word, and am adding it to my coping toolkit for both the good and bad days. Learn more about it here:

What ‘Resilience’ Means to Me as a Spoonie

Last year, Sheryl asked me to write about what resilience means in regards to my chronic illness, because it’s one of my key strengths, a topic that I’m passionate about, and I’m also a resilience trainer. I sat on it for a long time because it has been very hard to talk about my illness. I have precancerous endometriosis, and not many people know what that is. Those who have it suffer in different shapes and forms.

How My Pain Manifests Itself

Mine comes with regular pain and inflammation that I have to manage. I often get low blood pressure and dizzy spells. After two surgeries and an HRT (Hormone Replacement Therapy) which messed up my hormones for over a year, the doctor told me that we have yet to make any progress. The growth is in a position that’s hard to operate on, so it can’t be totally removed even if we were to have another surgery done. So all I can do for now is to live with and manage it, until new solutions come along. Just like everyone else with a chronic condition.

Adding Dimensions to My Definition of ‘Resilience’

I thought long and hard about what ‘resilience’ means to me. The most common understanding of ‘resilience’ is to ‘bounce back from setbacks’. I am not quite satisfied with this definition because for someone with chronic conditions, it feels like we are constantly on the bounce and that’s exhausting! So I developed my own definition to resilience and use it in my training. My 3Rs to ‘Resilience’ are:

1. Regenerate when faced with setbacks.
2. Stay Robust on challenging days.
3. Radiate on the good days.

Resilience Exists in Every Stage of Life

I see resilience everywhere within the varying states of our wellbeing, as there are fluctuations when it comes to chronic illness. Some days are good, some are bad, and yet others are better than the rest. We need time out to regenerate on the bad days. We need to try and stay robust on the challenging ones (and it’s okay if we fail, because we just return to a state of regeneration). And on the good days, that’s when we’re able to radiate and extend ourselves fully into life.

I like my 3Rs definition better because as long as I am breathing, living and trying, that is resilience! I don’t beat myself up too much when the conditions are less favourable. I am a person who loves life – I like to stay active and travel. It frustrates me when the bad days hit. I’m not only rolling around in pain while under heavy sedation, but I lose time to the things that I had wanted to do.

It Hurts More When Others Don’t Understand

When people do not understand the state that I’m in, it makes me feel even worse during a flare. So whenever I’m in such a state, I accept it and know that it’s only temporary. It will pass and I will regenerate. I allow myself to rest and retreat, and surround myself with comforting and supportive resources. These all help me to regenerate even better.

How I Maintain Robustness, and Radiate on the Good Days

When I’m feeling really well, I radiate and extend myself. I do all the things that I love to do, from volunteer work, to diving and travelling. I push myself because such occasions are precious (read my article on “The Chronically Time Lagged” here). As my condition is unpredictable, I have to ensure that I stay robust on my trips and during important work periods.

I worked with my doctor to develop a pain management plan that’s suitable for me. I was once adverse to using painkillers, and was so stubborn that I’d only take them when the pain was killing me. These days however, I listen to my doctor and take them before the pain hits in full force. Thus I’m better able to manage my downtime, and even reduce them sometimes.

Being Aware of My Current State, so That I Can Choose the Best Strategy

For those who are chronically ill, I see that we are also chronically resilient. I don’t just say ‘again?’ when stuck in a low moment in time. I look at the state that I’m in, and decide on which strategy to apply: to regenerate, to stay robust, or to radiate. Sometimes it takes longer to regenerate and that’s okay, too. We must keep trying and retain hope. That in itself is resilience, too.

Read More: Life with Chronic Illness: Happiness & Pain Can Co-exist

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Contributor Bio



Angela suffers from precancerous endometriosis, yet lives an active life whenever she gets the chance. She believes in living life to fullest and started Pod Of Life, which promotes and train people on resilience.

The post I May be Chronically Ill, but I’m Also Chronically Resilient appeared first on A Chronic Voice.

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