Overcoming challenges Archives

September 27, 2020October 16, 2020

How to Make Mindfulness Practical When You’re Chronically Ill

Talk of mindfulness is everywhere. You have no doubt heard people recommending mindfulness as a method of coping with all sorts of health issues. While it’s no ‘quick fix’ or ‘miracle cure’, mindfulness truly can be extremely beneficial for those of us with chronic illness, and it has proven results!

The benefits of mindfulness for chronic illness

Mindfulness is all about being present in the moment, which promotes a sense of calm and relaxation. This alone can provide a feeling of comfort and relief when we’re going through a lot in our lives. This 2019 study defines the practice of mindfulness as: “intentionally observing the body and mind nonreactively while embracing the individual experience and accepting things as they are.”

When you live with chronic illness, you are often in a prolonged state of ‘fight or flight’, which means that your stress response is overworked. Your body and mind are not designed to handle this prolonged stress, which can understandably take its toll. Stress can contribute to chronic pain and other chronic symptoms. Thankfully mindfulness can markedly reduce stress levels, easing chronic symptoms and reducing the negative effects that come with being in a state of stress for so long.

It’s not only stress that mindfulness can help with: regular mindfulness practices can help us to gain greater control over our emotions and enable us to regulate them more effectively. This creates a more stable mood and an enhanced sense of wellbeing. This increased emotional regulation can even help with mental illness (such as anxiety and depression) which so often accompanies chronic illness.

The benefits of mindfulness for chronic illness

Often the experience of living with chronic illness can create a sense of fear of doing something that may worsen your symptoms (which is completely understandable). This fear can lead to fear-fuelled avoidance, meaning we avoid certain activities in the hope we can avoid a ‘flare’. Unfortunately, this fear-fuelled avoidance can actually worsen symptoms over time. Mindfulness can help us to overcome those fears and deal with them in a calmer, more constructive way.

When you live with chronic illness, it can be incredibly hard to sleep. Often even when we do sleep, it’s non-restorative and restless, meaning we don’t feel much of the benefit. Mindfulness can help with more restful, regular sleep. Mindfulness can even help us to be more self-compassionate and build our confidence, as well as helping us to feel more motivated to self-manage our chronic illness.These are only a few of the benefits of mindfulness for chronic illness!

Making mindfulness practical:

Now that you know just how useful mindfulness can be, you might be wondering how to get started. It can be tough to know how to engage in mindfulness in a practical, realistic way. Let’s go through some tips to help you introduce mindfulness into your day to day life.

Figure out what type of mindfulness works for you. There are so many different types of mindfulness such as meditations, visualization and guided imagery, mindful movement, body scan meditations, progressive muscle relaxation (PMR) and more! This variety is great because it means that if you try a style of mindfulness and discover it’s not for you, it doesn’t mean mindfulness can’t work for you! Take your time to do some research and experiment until you find what feels best for you.

Start off with 5 minutes at a time. You don’t have to dedicate lots of time to mindfulness to feel the benefits, especially not when you’re just starting out. Starting out with 5 or 10 minutes at a time can be a sustainable way to introduce mindfulness. You don’t even have to do this every single day to gain the benefits (although if you can this would be fantastic)! 2 or 3 times a week would be a great way to start out. Being as consistent as possible is key. You don’t need any special equipment to get started. Find 5 minutes in a quiet space where you won’t be disturbed or distracted, and you’re ready to go.

Don’t worry about sitting in a specific position. You don’t have to sit with your legs crossed in an upright position for mindfulness to work. Don’t worry if that simply doesn’t work for you. There’s no magic pose that you have do to gain the benefits of mindfulness. Sit or lie down in any position that is comfortable for you.

If you feel pain or other symptoms, don’t overthink it. Let’s face it, it’s likely that while you’re sitting and trying to quiet your mind, you might experience pain or other symptoms of your chronic illness. That’s ok. Don’t worry! Mindfulness is about being present in the moment and engaging your senses. If you are experiencing a symptom, feel what you’re feeling as part of the present moment. Try not to overthink it or worry about it. That sounds easier said than done, but with practice it can get easier. Of course that might not always be possible. If you’re having a flare or a severe symptom, you might need to stop your mindfulness practice for the time being. That’s totally valid too! You can always try again later. It doesn’t mean you’ve failed or that you can’t practice mindfulness.

Find guided mindfulness resources. You don’t have to sit and meditate alone. There are plenty of guided mindfulness sessions online you can access (and many for free!) which will guide you through a meditation step by step. Some people find guided audio or video mindfulness sessions really helpful because it gives them a voice to focus on and clear, relaxing guidance to follow.

Find guided mindfulness resources to help you be mindful.

Consider mindfulness courses and mindfulness therapy. There are mindfulness courses you can engage in which can help guide you through learning mindfulness skills. You may be able to find some in your local area which you could attend in person, or you could find an online course or app. Mindfulness is often integrated into other types of therapy to treat chronic illness and mental health issues. You could ask your doctor, specialist or therapist if this is something you could involve in your sessions. Alternatively, you could seek a specific mindfulness therapist. If you do so, ensure they are properly qualified

Utilize mindfulness in bed to help you sleep. If you struggle to sleep, you could practice mindfulness a little while before you go to bed at night to get you in a relaxed mood. Another great way to utilize mindfulness to help you sleep is to listen to a guided mindfulness session in bed to help you drift off. Progressive muscle relaxation (PMR) is really great for this purpose because it takes you through relaxing each area of the muscles in your body. This can ease muscle pain as well as encourage relaxation.

Consider trying mindful movement. For some people, sitting or lying still and trying to relax simply doesn’t work. This is where mindful movement can come into its own. Mindful movement typically involves slow flowing movements. While you’re doing these movements you pay attention to your breathing, to how your body feels and to what is happening in that moment. Yoga and tai chi are types of mindful movement. You can even make other exercises mindful, such as going for a mindful walk. When you’re walking, you might pay attention to how your feet feel as they are hitting the ground. You may notice what sounds you can hear and what you can see around you for example. You’re focusing on exactly what is happening in that moment on your walk, not on the past or the future. Mindful movement brings all of the same benefits of mindfulness, as well as incorporating the benefits of exercise and activity for those with chronic pain. It’s all about what works for you!

Make daily tasks mindful. We don’t always have the time or energy required to dedicate to setting aside specific time for mindfulness each day. However, as you learn the skills of mindfulness, you can make daily tasks mindful that you would be doing anyway. As we learn to pay attention to what is happening in the moment, (if our mind wanders we simply bring our attention back to the present) we are being mindful. Over time this can become a positive habit, and will feel less like a conscious effort. This study explains that, “repetitive attempts to increase state mindfulness leads to an incremental escalation of the general tendency to be mindful in a more automatic manner.”

An example of doing daily tasks mindfully could be eating a meal mindfully. Take your time to focus on how your food smells and looks before you eat it. As you taste it, take the time to really take notice of the flavours, the movement of your mouth and tongue, and the feeling of enjoyment you may experience. You could make taking a shower mindful. Pay attention to how the water feels on your skin. Take notice of the smells of your shower gel or soap. Think about what colours you can see (maybe the bottles in your shower or your sponges are a certain colour).

Be kind to and encourage yourself. If things don’t go to plan, for example if you can’t quiet your mind or you miss a week of your mindfulness practice, don’t be too hard on yourself! It doesn’t have to be perfect. Remember you’re learning a skill and that takes time. Encourage yourself and be kind to yourself. If you try all sorts of different mindfulness techniques and are just finding that it’s not for you, that’s completely valid too. There are plenty of other chronic illness management options that you can explore. It doesn’t mean you can’t try mindfulness again later down the line if you want to, so don’t worry!

Mindfulness is about you!

Fundamentally, mindfulness is about what works for you. If you can find ways to integrate mindfulness into your life, it can be well worth the effort and have wonderful benefits. Remember that there’s no specific ‘right way’ to practice mindfulness. It’s all about what works for you and your life.

About the Author:

Ann-Marie D’Arcy-Sharpe is 33 years old and works as a freelance writer and blogger. She lives with bipolar disorder, fibromyalgia and arthritis. She writes for Pathways Pain Relief, a chronic pain relief app and blog. The app is created by pain patients and backed by the latest pain science. The app uses mind body therapies to help pain patients achieve natural, long lasting pain relief.

July 11, 2020July 5, 2020

Why Does Our Culture React So Negatively to Disability Activism?

Disclaimer: This article is written from my perspective as a young, disabled adult that lives in New Zealand. Whenever I mention “culture” in this article I am referring to western culture, specifically western culture as adapted to by New Zealand. I haven’t done much traveling so I can’t say if other countries with similar cultures react the same way, however, I have seen accounts of similar experiences from activists worldwide.

This is also my experience as someone with an invisible disability. I’m sure that everyone’s experience is different, and some of the readers of this article may not relate to what I have written no matter where they live. This is awesome because we all have our own unique story. I make a lot of generalisations in this article, and those generalisations certainly don’t apply to everyone. I am just expressing my experience in the best way I can.

I have experienced widespread chronic pain since the age of seven. I went from being a relatively “normal” (if accident-prone) girl to experiencing severe pain every day of my life. Slowly my condition deteriorated until I required the use of walking aids for a large chunk of my life (and I still do). I went through years of bullying and what I can only consider being “medical abuse” (mistreatment from medical professionals; such as being called a faker and being forced to take medication that caused severe side effects), which almost broke me.

As I grew into my voice I decided that I would be an advocate; not only for myself but for everyone with similar experiences to mine. I started with the basics: social media. Whenever I noticed an injustice towards people with disabilities, whether it be against me directly or against someone else, I would speak out. I then started writing articles about my experiences, which I love. And now, I’m a part of a panel run by the local Ministry of Education aimed at making education more inclusive to disabled students. This is just the beginning of my advocacy journey, and I can’t wait to see where it leads me in the future.

Throughout my advocacy efforts, I have noticed that many people on social media bristle when advocates like me bring up serious issues addressing the disabled community. I have been dismissed, insulted, and verbally abused online by people who will do anything to defend injustices against vulnerable people. I decided recently that I wanted to analyse their viewpoint and understand why, so I thought the perfect way to do this would be to write out my analysis and my thoughts in article format so I can share it with you all. This article addresses the question featured in the title: Why does our culture react so negatively to disability activism?

Ableist preconceptions that exist culturally regarding disability:

When we take a deep look at how the topic of disabilities is covered in the media, it is actually quite shocking. For example, I have an issue with the tv show called “The Undateables”, which is a dating show about people with disabilities finding love. While I believe that disabled people (including myself) should have the opportunity to find love just like everyone else and appreciate the representation this show provides, I don’t support that show because of the title’s connotation and denotation. Using the term “undateable” to describe an entire group of people is downright insulting. You’d never see a media organisation calling someone who’s from any other minority group (but who is not disabled) “undateable”.

I am not “undateable”. My brothers are not “undateable”. My friends are not “undateable”. No person should be labelled “undateable” for something they can not control. This is just one example of society’s ingrained ableism that many people are blind to.

We’re to be pitied, but not listened to. This is another ableist preconception I’ve witnessed. Often disabled people are portrayed to be these pitied, helpless beings who need charity, not a voice. We must be passive to maintain this image otherwise we are labelled as “trolls” or “entitled”. I’ve been told that if I can walk and/or articulate then I’m not disabled enough to complain about facing injustices. That is so incredibly wrong, especially since if people like us who can speak up don’t, then who will?

Ableist preconceptions that exist culturally regarding disability

I’ve also been told that I should stop using my disability “as my personality” when I responded to a post on social media. Actually, I’ve been told this multiple times. That is one of the most ableist things I have heard to date. I’m sorry that I can’t “turn off” my disability. I experience pain every single second of my life. It impacts my ability to sleep, my ability to sit, my ability to stand, my ability to walk, my ability to work, my ability to study, and my ability to socialise. Am I supposed to forget that? Not only that, but why shouldn’t I fight for injustices against people with disabilities to end?

Invisible disabilities make people uncomfortable:

Many people feel like they have to see something to believe it, which is fine until you start talking about invisible illnesses and disabilities. If I’m not using my cane, you couldn’t tell I’m disabled just by looking at me. And yet, my disability impacts all aspects of my life, whether I’m using my cane or not. Many times I have had people accuse me of faking my disability on my activism posts, telling me that I don’t “look” disabled and that I’m just “lazy”. I’ve had to grow up listening to this from my peers throughout my childhood so it doesn’t bother me as much as it used to. I’ve become desensitised. However, this behaviour needs to be addressed, because next time it could be said to someone who is not experienced dealing with this kind of harassment.

The disability rights movement isn’t as “trendy” as other human rights movements:

This point may be a bit controversial, however, I think it’s important to talk about. As a disclaimer, I’m not trying to tear other movements down to lift up disability awareness, I am simply comparing current cultural awareness and coverage of different movements in the mainstream media. I am not trying to say that either of the movements I compare disability activism to below deserve less attention, because I believe they deserve all the coverage they are getting, if not more. I also believe that the disability awareness movement should have just as much coverage as these movements so that they’re all at an equal platform.

LGBTQIA+ pride, for example. We have pride parades and Pride Month, events dedicated to raising awareness about discrimination against people within the LGBTQIA+ community, and LGBTQIA+ merchandise specifically aimed at raising awareness and money for charities that support this goal, which is a great cause. Companies change their logos or advertising media to reflect these events to show their solidarity, which is amazing. There are even multiple public spaces in my country that have been painted rainbow to celebrate Pride, such as town squares and selected zebra crossings. Feminism is another example. We have the women’s march, international women’s day, feminist merchandise, and a tonne of events targeted at raising awareness about discrimination against women. Both of these movements are prominent in pop culture and get a large amount of media coverage, as they should.

The disability rights movement isn't as "trendy" as other human rights movements

I just wish we could see the same effort go into raising awareness about discrimination against people within the disability community, as well as a similar amount of media coverage of these efforts. Where are the disability awareness parades? In my country, there are none. There are disability awareness days, however, I have yet to see the mainstream media address them. The inequities of identity awareness in our culture is definitely an interesting topic to think about.

Disability activism is not “convenient”

Part of disability activism is confronting people who are taking advantage of disabled people just to make their own lives more convenient. For example, calling out people who park in disabled parks without a permit, or sharing public service announcements about misuse of disabled toilets. When I mention the misuse of disabled toilets, I don’t mean them being used by someone with an invisible disability. People with invisible disabilities have as much right to use the disabled toilet as every other disabled person. When I mention the misuse of disabled toilets I’m talking about the people who have no impairment what-so-ever (or aren’t assisting someone with an impairment) who just use the disabled toilet just because it’s there.

I have witnessed people without disability parking permits parking in disability parking many times. When called out on it, their response is often “I’ll just be a few minutes.” That is one of the most common responses, along with resorting to verbal abuse when someone mentions their lack of a permit. I have made posts about these occurrences on my town bulletin Facebook pages, and every single time I have received abuse from people who see no issue with parking in one of these parks without a permit. I get told that I’m entitled, even though I paid for my permit to use those parks, while the abusers that park there don’t. How am I entitled for asking to use a service that I pay for?

Privileged people who lack empathy don’t like having their privileges, even the privileges that aren’t rightfully theirs to begin with, taken away.

There’s also the issue of inaccessible public spaces or stores. Renovating an area to ensure it is accessible by everyone may not be cheap, but it is necessary. Calling out local businesses that exclude disabled people from their stores and spaces is extremely important.

Disability activism is not “convenient” especially when it addresses the misuse of disability parking and disability toilets

During my advocacy journey (despite it being a short one at this point, I only started about 4 years ago) I have faced a lot of feedback. Some of it good, some of it bad, most of it respectful. However, I have also faced a lot of abuse, mostly online, for standing up for what I believe in. Sometimes, for a brief moment, I consider giving up, but then I remember the people that have thanked me for speaking out. This article is dedicated to them. I long for a day when disability activism is no longer controversial, and people no longer have to fight for their voices to be heard.

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

July 4, 2020July 2, 2020

Marie’s Chronic Illness Journey: Finding My “New Normal”

Marie’s Chronic Illness Journey: IBD and Crohn's disease

IBD, Perianal Crohn’s Disease, Abscess, Fistula complications, Sepsis, Crohn’s Arthritis, Pyoderma Gangrenous, DVT, blood clotting disorder, low blood pressure, Tachycardia and an irregular heartbeat with palpitations, Migraines, Body Dysmorphia, Depression, Anxiety, Agoraphobia, PTSD, hair loss, insomnia, self-isolation.

No, you didn’t just read a list of side effects from a newly FDA approved medicine. What you did read are just some of the things I have to battle with and continue to overcome daily. It’s unfortunate, but I can continue on with that list for quite a while. Being diagnosed with a chronic illness at 27 is utterly perplexing, as I am sure it is at any age. You live this life and you have your plans, goals, aspirations, and, at the flip of a switch, that all changes. I was completely blindsided and continue to be with every new diagnosis.

Finding my “new normal”

Once I was diagnosed, I would hear from other IBD patients and medical professionals about the importance of finding your “new normal”; a phrase I found to be so true and necessary, as I myself was discovering what that would mean for me. My struggle came into play when I realized no one around me seemed all that open about the process that preceded this new life I would be creating for myself. With the daily challenges associated with chronic illness, figuring out how this new life looks can feel as if you’re driving at night in a rainstorm, with your headlights off, just praying you’re on the right side of the road.

I had never really been exposed to the chronic illness lifestyle. Even though it has now been 2 years, the chronic part is still something I struggle with regularly. It’s easy to forget that this illness is for life. It definitely doesn’t help when the “able” ask you if you’re better yet. Especially, when after every procedure, that thought passes through your own mind, only to disappoint you again because you know that “better” will never be a permanent option.

I was beyond lost at the beginning of my chronic illness journey. I was scared and I felt alone. I was the only one in my world who could speak my language and everyone was staring at me like I was a circus clown. As if the chronic pain wasn’t enough, I was now facing emotional turmoil as friends, who I considered family, began to drop out of my life. I was left to fend for myself the same instant everything I knew changed; with only a few true friends remaining by my side to help navigate the most difficult challenges I’ve ever faced. True colors began to shine in moments of crisis and I was seeing rainbows.

Highly medicated and awkwardly positioned in my hospital bed, I felt as if I was being tested. I can only describe my time in my post-op, shared-room as a character-building experience. I squinted one eye shut to combat the drug-induced, kaleidoscope vision so I could begin to research how to achieve this “new normal”.

Finding support

I stumbled across the Crohn’s and Colitis Foundation and sent them an email. Once discharged from the hospital and successfully escaping the grips of my home nurse, I managed to make it out to a few events. I started meeting people, people like me, only they were more informed and experienced with their place in their chronic illness journey. It was through these gatherings that I became connected with my mentor, who now is my closest and dearest friend.

We began going to support groups together and she got me to see a psychologist who specialized in IBD. I had a connection with my mentor-turned-best-friend that I’ve never experienced before. I wasn’t aware that relationships like that were real. I finally wasn’t alone on my planet where no one could figure out what I was saying. I was the least lonely I had ever been, and we were in our very own world where we finished each other’s sentences, showed up for surgeries, and answered the phone late at night just because the other couldn’t sleep. We support each other in every aspect of our lives and I slowly began to realize the steps needed to be taken to get to my “new normal”.

It was through our relationship and her perpetual support that she encouraged me to stop hiding behind my fears and do what I love. Out of this came The Lemon Blog, my passion project. The Lemon Blog is a place that supports all abilities and provides encouragement, mentorship, community, advice, an ear to listen, or even a shoulder to cry on when needed.

Starting a blog when coping with IBD and Crohn's disease

I cannot stress enough the importance of having a solid support system. Sadly, not everyone has that available to them, which is why The Lemon Blog has become so important to me. Not only have I made amazing connections with these warriors, but we check on each other regularly, we cheer each other on, offer support when needed, words of encouragement when down, and have some pretty good laughs along the way.

People like Meena at The Unchargables help pave the way for the rest of us and I am honored to be writing this for their site. Thank you for asking me to share my story. I encourage everyone to share their own; you never know who it may help. I’d love to see you over at thelemonblog.com or shoot me a direct message through our Instagram @the.lemon.blog – we’d love to have you be a part of our Spoonie Community and help you to discover you own New Normal.

About the Author:

Marie is a chronic illness warrior who runs The Lemon Blog, which is her passion project. Marie created this blog with the aim of supporting fellow chronic warriors and helping them find their own “new normal”.

April 4, 2020March 29, 2020

My 7 Steps For Coping With a Chronic Condition

Being diagnosed with a terminal or chronic illness can be disorienting and disappointing. But as you accept it with time, you will learn to cope with your illness by making changes in your lifestyle. Stress affects everybody, and suffering from long term health conditions may make you vulnerable to the struggles stress can bring. You may appear to be absolutely fine on the outside, but inside, you might be torn apart by the stresses of being constantly dependent on someone for doctor appointments or having to clean up, go outside, run errands, etc. To persevere the spirit to live must be there. No matter what you are suffering from, being aware of the conditions and taking precautions can ease the everyday struggle. The more positively you can handle the struggle, the easier it will be to take care of the challenges.

My 7 ways to cope with a chronic condition:

Acceptance:

Often a lot of turmoil lies in mind. Accepting being terminally ill or having to suffer from a lifelong condition such as diabetes or thyroid issues takes time for acceptance. Once you’ve accepted it, it puts your mind at ease and allows you to look for ways to combat the disease while living your life. Take your time but accept your current situation as that is only when the mind will start to look for a solution.

Look for support:

We all need people that support us when we go through a tough time, and when experiencing illness, having a strong support system is half of the journey. Having your friends and family with you during these times can boost up your confidence. Do not worry about the toxic relationships in your life and only focus on people who add positivity to your life. Value the people who love and care about you and make them a part of your inner circle. Social media is also a great place to get support from those experiencing similar conditions to you.

Gain more information about your condition:

When you are suffering from a chronic condition, it is always safer to have a thorough understanding of the disease and its conditions. If you have doubts and questions, don’t hesitate to ask your doctor. You may also research online or look for support groups to gain more knowledge about the condition. Keep track of the symptoms your body exhibits and get to know your body better. Analyze methods that may help to manage symptoms related to your condition and share details with your healthcare provider.

Manage symptoms of depression:

People suffering from chronic illness go through a wide range of emotions. You may feel weary, drained out, and be in a dark place due to the condition and the symptoms you experience. A lot of people miss out on their regular doctor’s appointments and skip medications, which ends up in further aggravating the condition. It is important to be well informed about the symptoms of depression and how to tackle them. Speak to a therapist if necessary.

Take your medications on schedule:

It is often hard to remember to take medication, it’s even harder to remember if you have to take 10 of them. Set a reminder or an alarm on your phone to remind you to take your medicines on time. Remember the names of the medicines you are taking and get a deeper insight into the drugs you are recommended. Speak to your doctor to learn more about each drug and its side effects, why you’re taking them, if you may discontinue them in the future, etc.

Live in the present:

Suffering from a lifelong disease can make you worry and fear the future, but the best way to live one’s life is to focus on the present. Always follow the rule of ‘Be Here And Now.’ Focus on what you’re doing; if you are eating, be conscious of what you’re eating, what color food you are eating, etc. It keeps the mind focused on the present activity and prevents it from wandering off in unprecedented directions.

Find something you love to do:

Practicing a hobby is therapy in itself. Whether it’s painting, gardening, or reading a book, find out what you like and do it. Hobbies can bring joy, a feeling of productivity, and a distraction from the suffering of real life.

Coping with a chronic illness can be difficult, but there are methods that can make this easier. Live in the moment and take baby steps every day. Changes don’t happen overnight, but as long as you make progress, you’re doing great.

About the Author:

Henna is a wellness lifestyle writer. She loves sharing her thoughts and personal experiences related to natural remedies, Ayurvedic, yoga and fitness through her writing. She currently writes for How To Cure. She can connect with others experiencing health concerns and help them through their recovery journeys through natural remedies.

March 30, 2020March 30, 2020

What Cerebral palsy awareness month means to me (March 2020)

March is Cerebral palsy awareness month, which is dedicated to the 17 million people diagnosed with Cerebral palsy around the world.

I first got diagnosed with Cerebral palsy at the age of 2 years old. Growing up with a condition like Cerebral palsy wasn’t the easiest task and I had many obstacles to face. But I overcame those and now I’m able to share how I’ve overcome the hurdles in my life. These are hurdles that I thought where huge at the time. I can now share my journey through my advocacy work and the stories that I’ve written.

Why Cerebral palsy awareness is important

Getting the chance to spread awareness for Cerebral palsy for a full month is awesome, though I celebrate Cerebral palsy Awareness 365 days a year. While every day is a great day to spread awareness, March is definitely a month that I look forward to because it gives me a chance to educate people more about my condition. I like to share my experiences about what it’s like to live in a world that you constantly have to adapt to, since not everything is accessible to you as a person with Cerebral palsy.

For example, sometimes when I go to store with my mom, we tend to get people who stare and point at me like I’m E.T.. It feels like I landed on earth and befriended a boy named Elliott. Meanwhile, I’m just an average 24-year-old that uses a wheelchair and has a passionate, creative mind that I tend to use for my stories that I have to tell. I’m not any different from anyone else and I just want to be accepted in society as I am and not as anything different. Cerebral palsy awareness month allows me to bring awareness to that.

Cerebral palsy Awareness month also gives me a chance to reflect on how far I’ve come in my life with Cerebral palsy. I get to look at all the milestones I’ve reached, as well the ones I will continue to reach as my journey with Cerebral palsy continues. I love to look back at the stories that have been written by me and the people I’ve been impacted by, such as many of my friends who are also advocating for Cerebral palsy awareness. We’re all in this together and nothing could break that bond between us all.

I’m not fighting for a cure, I’m fighting for awareness

Cerebral palsy is the most common childhood disability, yet I feel that there’s very little awareness about the condition in comparison to other disabilities (such as Autism). I’m constantly reminded of the lack of awareness as I wheel around in society and don’t see one touch of green in honor of Cerebral palsy awareness in March, instead of just for St. Patrick’s Day.

I'm not fighting for a cure for Cerebral palsy, I'm fighting for awareness

My advocacy is not about finding a cure for me, it’s about spreading awareness to the people that are unaware of Cerebral palsy and what it is truly like to live with this condition. People seem to think it goes away when your childhood is over, when really childhood is just the beginning of the difficult journey of living your life with Cerebral palsy. In my opinion adulthood is the hardest part because you have to navigate through life and it’s difficult, but having a month that brings awareness to this struggle is awesome.

About the Author:

Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.

March 7, 2020February 27, 2020

How To Use Yoga as a Tool to Become More Motivated in Life

A thought that often crosses our minds in the morning is “I have no motivation to get through the day”. Lack of motivation; an easy thing to explain but a difficult thing to understand and fix. Every person experiences issues throughout life that can cause an impact on them, and this impact can be neglected. We carry all the negativity we acquire during the course of the day without being conscious or aware of it; and the next thing we know, we may become bound to our beds, struggling miserably to get out of it and get some work done.

Why does this happen, though?

Difficult situations are very draining on our energy. Our minds can become full with negative thoughts which can lead to poor self esteem and little self-belief. While for some this can result in one or two low and gloomy days, it can also become a severe and serious thing for others.

People with chronic illnesses can be even more prone to regular levels of low motivation. We should all be aware of different tools that can be used to become as healthy and as happy as you possibly can, even while experiencing a lack of motivation. Now that I have introduced this concept to you, it is time for me to tell you the answer to becoming more motivated; Yoga!

How yoga can help you become more motivated in life

Yoga has a great many benefits and one of the most obvious ones is instilling motivation. Given below are the few ways how yoga becomes the best practice to be motivated in life.

Yoga lowers stress and anxiety levels

Practicing yoga involves a great deal of stretching your muscles. This, in turn, reduces all the stress and tension accumulated in the muscles and relaxes them significantly. The constant breathing exercises help in energizing your body as it regulates the blood flow. This also helps rich and oxygenated blood to reach your brain.

As the brain receives rich blood and your body starts relaxing, the mind also works towards calming itself down. When this happens, you became aware of all the negative thoughts that have been causing you distress and anxiety and can, therefore, push them out of your head effectively. Once your stress levels are lowered, you feel more energized and motivated to work your way through most days.

How yoga can help lower stress and anxiety levels

Yoga increases your ability to problem solve

When your mood is low, one of the most annoying things that could happen to you is not being able to solve the slightest of the problems that come your way. Since your mind may be filled with negative thoughts, it can be difficult to think straight and therefore it may seem like the easiest thing to do is to give up on that difficult task.

The breathing exercises involved in yoga, as discussed above, help to clear out all the negative thoughts. They also assist in making your mind focus better. This means that when you come across a problem in life, you’d be able to focus on it properly. You will be able to come up with practical solutions faster, and therefore there would be no hindrance in the process of becoming a more motivated and happy self.

Yoga encourages self awareness

To keep yourself motivated, you need to know yourself properly first. You need to understand your behavioural patterns, as well as what makes you happy and what keeps you energized at work. Yoga helps in directing your focus towards your own self. It helps you understand your emotions better and makes you capable of consciously keeping them regulated. It helps you balance out all the negativity with positivity and enables you to make more practical and sensible decisions.

If what I have said above interests you, you can get started on your yoga journey by discovering which style of yoga works best for you.

About the Author:

Manmohan Singh is a passionate Yogi, Yoga Teacher and a Traveler in India. He organizes Ayurveda Courses in India and Yoga retreat in Nepal . He loves writing and reading books related to yoga, health, nature, Himalayas and Trekking Tours in India.

February 22, 2020February 20, 2020

Dating with Cerebral Palsy (My Personal Experience)

One of the biggest misconceptions about people with disabilities is that we have no desire to date or have no understanding of what a relationship consists of. I can tell you first hand that this is false. For as long as I can remember, I’ve always dreamt about the day I will finally get married. I dream of having a ceremony in the smoky mountains of Tennessee, and getting to ride off afterwards in a red 1978 Ford Truck with my future husband.

What I’ve Learned About Dating with Cerebral Palsy

Dating has been one of the most difficult parts of my life. Ever since I hit puberty in middle school, I had an interest in dating and having a boyfriend, like many young 13-year-olds would be. However, I often had trouble with this because boys wouldn’t dare to give me the time of day. This was mainly because of my Cerebral palsy, they just didn’t want to deal with the judgement and stigmas related to dating someone like me, and I can’t blame them for thinking that way.

Love Yourself First

All of this taught me that the first step of meeting and getting to know someone is being in love with yourself first, while accepting your circumstances and your situation. Once you accomplish this, then you can meet someone who will look past your disability and love you for you. Loving yourself when you have a disability may not be the easiest task for some people, but it helps you to move forward when you’re single and want to put yourself out there into the dating scene as someone with a disability.

What I’ve Learned About Dating with Cerebral Palsy — Picture of the Author: Tylia Flores

If you don’t love yourself, how can you expect other people to gravitate towards you and want to get to know you? Self-confidence is magnetic. If you don’t love yourself and accept that you are who you are and acknowledge that you were made this way, then others may find it difficult to love and accept you as well.

It all starts with you and whether you are willing to try loving yourself, including the way your medical condition shapes you, as well as how you perceive your life as a person with a disability.

I’ve also learned that not everyone you have a romantic interest in is going to return those feelings, and that’s okay. That doesn’t mean there’s anything wrong with you or the person that you are. You just have to accept their feelings and move on from it, while remembering that you’ll find to love you no matter what struggles you experience and what situation you’re in.

The importance of self love when dating with a disability

Dating May Be Hard, But It’s Worth It

All throughout my experience with dating with a disability, I’ve realized that while it isn’t an easy process, it is a worthwhile one. It is essential that no matter where you are in your journey, you take time out and learn to embrace yourself and your situation. In my case, I need to acknowledge my wheels, the adventures I get to go on because of my Cerebral palsy, and all the things that having Cerebral palsy has taught me over the years. I have learned a lot about myself during the experience of finding love with Cerebral palsy.

Although my life hasn’t been the easiest, I have learned that loving myself and my disability come first are foremost.

About the author:

February 8, 2020February 6, 2020

Why It Is Beneficial To Practice Yoga Whilst Traveling

Yoga can act as a multi-purpose remedy for people of all age groups. It has therapeutic properties within each yogic movement that are good for the mind, body, and soul.

During your moments of wanderlust and planning your travel, when you have decided your favorite destination to go to, you don’t want any moments of severe symptoms or anxiety to impact your holiday once you’re on your way. It’s good to think positively about your future journey, but it’s wise to also take the necessary precautions. If you have impaired mobility, neurological dysfunction, fatigue, pain, etc., you may end up experiencing anxiety, less social interaction or even depression. In an effort to minimize such experiences, you can calm your symptoms or yourself with Yoga.

Meditation, Pranayama, or Yoga are exercises that can be performed anywhere. Therefore, while traveling, yoga can help relieve the symptoms of chronic illnesses. It works as a stress-buster as you increase qualities such as compassion, focus, improved memory, and better concentration. It may seem like too much of a challenge to maintain a yoga routine while traveling. What if you have to face uninvited challenges? However, it’s worth it. Yoga works as a booster to elevate your moods. Researchers have found and proven that Meditators are more self-aware and come through the stress-related problems to live a quality life.

The Benefits Of Practicing Yoga Whilst Travelling

Yoga is extremely beneficial, especially while traveling. Why? Because it promotes better health, allowing you to make the most of your holiday. Yoga, Meditation, Pranayama, and similar yogic practices can also help with clearing brain fog, which many people with chronic illness experience. Meditation also helps in clearing out the clutter that is causing emotional instability. It gives a clear perspective and a focused mindset while the Pranayama also helps in flushing out the toxins to reward you with a refreshed state of mind.

While traveling it is important to maintain healthy habits and to be aware of your surroundings. Create a safe space for yourself! It is important to look after yourself when you are trying to balance work and family life. People often ignore the more subtle elements of their health because they are too focused on dealing with the lives of other people. Yoga makes sure that you take care of your mental and physical health, because only then can you take care of others.

Establish your own yoga routine so you can take it with you anywhere

To start your yoga journey as someone who experiences chronic illness, consider private instructors initially; join gentle and restorative classes; practice Yoga from online sources or digital media. A little bit of stretching and deep breathing can be a benefit to almost anyone. So, travelers must consider this wonderful hack to give priority to their health while still making the most of their adventures. Let Yoga be your travel partner, a guide that can help protect you from all the bad forces of life with the natural power it inherits.

Look at the positive side of the world and appreciate every with grace. Staying positive is a weapon that not many people can fully embrace, but many people chase this state of mind as an infinite goal. So, if practicing yoga interests you, grasp motivation and start your journey. After all, being alive is a gift in itself to cherish!

Bipin Baloni is a passionate Yogi, Yoga Teacher and a Traveller in India. He organizes 200 hours of yoga teacher training in various cities in India and Nepal. He also conducts AyurvedaCourses in Kerala He loves writing and reading books related to yoga, health, nature, Himalayas and Trekking in Nepal .

January 15, 2020January 5, 2020

Going to Movie Theatres with Cerebral Palsy and Epilepsy (My Personal Experiences)

My Experiences Going to Movie Theatres with Cerebral Palsy and Epilepsy

Like many people, I have always enjoyed going to the movies with my friends and family. My favorite types of movies to go see are comedies and films based on true stories. However, due to my Cerebral Palsy and my mild form of epilepsy, I also dread going to the movie theatre because of how it can affect both of these conditions.

When it comes to having spastic Cerebral Palsy, I tend not to do so well with loud noises and screaming since it makes me jump. The flashing lights and moving colors that are often on theatre screens are not good for people with epilepsy. As a result, whenever I go to the cinema I have to worry about what may happen if this movie has a scene where there is a lot of flashing lights or moving colors, or if it has loud noises that could make me jump and cause other movie go-ers to stare at me.

Dealing with self conciousness

Each of these disabilities impacts my life in different ways and sometimes it makes me very cautious about going out to certain places because of the responses that I get from the people around me. My body has a mind of its own, which can get out of control when it’s triggered by my epilepsy. It shakes and moves around and I have no idea what’s going on with my body. I don’t know if there will ever be a time where I can go to the theatres and be comfortable to enjoy the movie without a single worry on my mind.

Dealing with self-consciousness when going to the movies with epilepsy — Pictured above: Author, Tylia, at a movie theatre.

How movies could be made epilepsy friendly

It would be nice to be able to enjoy certain movies without having to be cautious about them having flashing lights or loud noises in them. This could be made possible if filmmakers would gain more awareness about epilepsy and other conditons, and how these conditions affect movie goers that enjoy movies but also have to worry about their epilepsy or other symptoms being triggered during the movie.

This would mean that people like myself could enjoy films and head out to the theatre more often without a single worry about their bodies or having to deal with the stress of not being able to enjoy the film because of their health. My combination of Cerebral Palsy and epilepsy together cause me to experience this stress every time I see a movie.

Until filmmakers make efforts to change this I will continue to go to the cinema and watch brand new movies because I refuse to miss out on things that everyone should be able to enjoy.

About the Author:

January 11, 2020January 4, 2020

Why your well meant advice is hurtful to me

Most people have the best intentions at heart when they tell you something. Especially your friends. Assuming you’ve got good friends obviously.

I DO BELIEVE MY FRIENDS ARE GOOD FRIENDS, THAT’S WHY THEIR ADVICE SURPRISED ME SO.

My goal in life is to spread awareness about living with multiple chronic illnesses. How being fatigued is not the same as being tired, how even when we smile we are in pain, how many people don’t understand us. But we try to explain it to them the best we can.

Let me explain why well meant advice can be hurtful by giving examples of advice given to me by my friends.

“Don’t be so negative and just go out there. Sitting at home by yourself is not helping you feel better”

When I say I won’t be able to make it, it’s a form of self care. I’m not being negative. Living with a chronic illness is exhausting and I need a lot of rest. Just sitting up in a chair “not doing anything” is already draining my energy. I’ve tried to explain this in my article “fatigue in chronic illness explained”.

When there are multiple people there, and music playing, it’s even more exhausting. Multiple people, bright lights and music and noises can overstimulate me, making me agitated and on edge. It’s not a fun feeling, and this happens faster when I’m already not having the best day.

This is most likely the reason I’m telling you, I can’t make it today. It’s not as simple as taking some pain meds and keep going. Like another helpful friends suggested. This is not a muscle ache, pain meds don’t take away the pain and don’t do anything for my fatigue and possible overstimulation.

“Just push yourself a little, when you put your mind to it you can do it”

The power of positivity is a good thing and you can accomplish a lot by looking at the bright side of life. I totally agree with this. But I can do that as much as I want, and it won’t take away my flare.

When I go out with someone one day and won’t go out with you the next, or vice versa, doesn’t mean I prefer their company over yours. It means that I need to recover from my outing.

It goes both ways, if I know I’m going out of the house in a day or two I will preserve my energy now. Pushing harder won’t accomplish anything but getting a bigger flare, and having to recover for even longer. Sometimes it can even leave you with long term damage. Nothing is worse than pushing yourself over your limits when you live with a chronic condition.

“Did you try yoga/kale/essential oils/alkaline water?”

Yes! I appreciate you trying to help me, but nobody is more invested in getting better than me! If there was a magic cure for my conditions, believe me I would’ve found it already.

Most of these things are part of my daily routine, eating an extremely clean diet, exercising (meaning basically just moving a little every day), supplements, essential oils, crystals and whatever else I can find that helps.

When you make a suggestion and I haven’t heard about it before, feel free to enlighten me and I’ll look into it. But when I tell you no thanks, for whatever reason, don’t push me. I don’t care that your sisters aunts friend was cured, I probably tried it and it hasn’t helped me. Or maybe I’m just tired of trying things for right now, and I simply don’t want to.

Knowing when to step back, knowing when advice is hurtful is hard, especially when you have no idea what it feels like to live the chronic illness life. But please, have respect and believe me when I tell you things. Don’t pity me and judge me, and don’t try to cure me. That’s all I ask.