We all have different coping skills when it comes to handling anxiety and the challenges it brings. One of my coping mechanisms is watching Nick Jr.’s animated show Paw Patrol! Although I’m 24 -years old and in college, studying creative writing, you might be wondering what is Paw Patrol and how did I get introduced to paw patrol?
What Is Paw Patrol
Paw Patrol is an animated series shown on Nick Jnr following the adventures of Ryder and his gang of pups living in Adventure Bay. Each episode sees the pups face a problem that needs solved either on land or sea. There are 8 different pups, each having a specific profession based around the emergency services.
My Introduction to Paw Patrol
It all started for me a few years ago. When I first struggling with the feeling of being trapped in my body because of my cerebral palsy. And trying to deal with the reality that I’m stuck in a body that I don’t have much control over and that my brain will never be free form this condition. Which causes me to have sleepless nights, spasms 24-7, or struggle to do task that others might find simple like putting on shoes or going to bathroom. All of these constant obstacles cause me to have struggle with anxiety which is common for young adults with Cerebral palsy.
When I first discovered that I was suffering from anxiety, I felt like I was not getting any relief out of the things I was told I needed to do to reduce my anxiety attacks from happening. I felt lost, and that I had this constant feeling of having a plastic bag over my head. Which felt like it was taking the life out of me every day, causing me to suffer from anxiety attacks over and over again.
It wasn’t until my then boyfriend recommend I watched Nick Jr’s Paw Patrol with him. He too had cerebral palsy and he had the same struggles as I did.
From the minute, I saw Chase, Marshall, Skye, Zuma, Tracker, Rocky, Rubble and Everest, my body becomes relaxed and I instantly feel like I could breathe again!
What I’ve Learned From Paw Patrol
As I watch paw patrol I remember through the lessons being taught that a problem always has a situation. And most of all the feeling that I have when I face issues with my anxiety every day! I remember that it takes baby steps and that nothing gets easier but you have to keep going despite the obstacles you’re facing in your life just like I do with my anxiety and spastic Cerebral palsy. It has taught me that I can’t give up on my challenges because I’m having a rough day with feeling anxious or having a lack of movement due to my chronic pain with Cerebral palsy.
Thanks to watching Paw Patrol I’m reminded that I’m a strong woman and I could overcome anything that comes in my way and I will overcome anything just like the characters on the show.
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.
We’ve all been scolded for being on our phones, laptops and tablets. In this current age of rampant technology, it is understandable that these convenient devices can inhibit human interaction. While this is a growing issue, there is another side to this conversation that no one seems to be discussing.
What if technology was your only source of social interaction?
What if a disability, disease or mental health challenge inhibited your ability to have regular social interactions.
To these folks, a computer, tablet or cell phone may be the single source of not only entertainment, but also friendship and connection to other human beings.
Isolation is one of the most difficult parts of having any disability or illness. Not being able to socialize like we once did is a difficult card to be dealt, along with life long, incurable illness.
Most of us, before our diagnosis led very social, exciting lives. Most of us have had to mourn not only the life we once knew, but the friends that isolation took with it.
This is why it is SO important to keep in touch with your disabled friends and family and never judge them for the amount of time they spend on technology.
You never know how one text message or phone call can make a difference in someones life, for the good or bad.
For example. as a former career oriented women with a robust social life, since my diagnosis of Adrenal Insufficiency caused by my congenital disorder, Medullary Sponge Kidney I have had to reclaim a new life. I am no longer able to work a full time job and am mostly homebound. Due to health, I was forced to move away from my home state and am isolated in a foreign place for access to rare medical treatment. Texts, phone calls and social media are the main way I communicate with my friends and loved ones now. My extroverted soul aches in the isolated four walls I live in now.
I recently texted one of my loved ones, repeatedly, with no response.
I know it shouldn’t, but since that is my only source of communication with people, it hurts my feelings sometimes when people seem to be too busy for a three second reply.
This person’s response to my repeated text was “Sorry, I try not to be on my phone much.”
And I thought. “What a luxury.”
I miss the days where I didn’t have time to look at my phone because I was so busy running the geriatric home I was the director for. I was so busy perusing my degree in medicine I didn’t have time to scroll through social media. I was out in the world. I was an extrovert who was allowed to be extroverted.
Now, texts, calls, FB messages etc are my sources of social interaction, other than my weekly treatments at the hospital.
Social media and phones can be a source of JOY or a source of STRESS. It’s all in HOW you use it. It’s all in what you expose yourself to. It’s all in the people and content you ALLOW in your life.
If you are homebound and isolated, please don’t feel alone. There are many communities and support groups that understand the struggles you may be facing.
You are never alone, even if your only friends are in your phone 😉
Another point to be made is how important streaming services and TV can be in the life of someone chronically ill.
I know we all have felt guilt at some point for how much binge watching we’ve done, but honestly this practice has it’s place!
There are days where I am in so much pain and feel so miserable from my disease that I have to have a distraction. My mental health depends on it. Sometimes, watching a comedian on netflix or a comforting classic movie is a much needed distraction for those of us who struggle with difficult diseases or disabilities.
There’s only so many deep breathing exercises, meditation and yoga you can do and sometimes you just need to rest and recuperate.
I know sometimes we feel guilty for the amount of resting we do, but when you battle a disease 24/7 365 with no remission, it is completely okay to need a distraction in your life.
If netflix, youtube, hulu or whatever is that distraction for you, by all means please do not feel guilt over that. You deserve to rest. You deserve to be able to enjoy movies, shows and entertainment just like the healthy people.
I will close with two messages:
1- Don’t let anyone berate you about being on technology if you are using it for POSITIVE reasons.
That being said, if technology and social media is becoming a source of stress, it’s ok to cut back on it. Just don’t isolate yourself completely. You deserve to be heard, understood and loved.
2- If you love someone who is homebound, sick or disabled, respond to their texts, messages and phone calls when you can.
I get it, you’re busy. But we should never be too busy to let someone know we care Sending a text takes 3 seconds, but it could make someones whole day! Make people you love a PRIORITY. Especially those with chronic health issues, they may value your efforts even more. <3
Wishing you hope, healing and happiness!
Love, Win
To read more from Winslow you can visit her website-
Though exercise is an important part of maintaining our health, exercising regularly is more difficult for people living with a chronic illness than it is for many others. However, with a doctor’s approval (of course), regular exercise can become manageable to some extent, while being highly beneficial for many aspects of people’s lives. For people with chronic illness, it can be even more crucial to regularly do some light physical activities, in order to increase their heart rate within safe parameters.
Some of the benefits of exercise for people with chronic illness include bone and muscle strengthening, weight control, improvement in mental health and mood, reduced chances of falls, as well as reducing the risk of heart disease, diabetes, and metabolic syndrome (as well as helping to manage the symptoms of these conditions). As a whole, regular exercise can help preserve your lifestyle.
How to get started:
If you’re a person suffering from some kind of chronic illness, then the topic of chronic illness and exercise is surely familiar to you. The first thing we ask ourselves is how to even begin exercising. The first thing you should do is speak to your doctor. This is very important, as they will give you the best advice that will match your medical condition and capabilities. Your doctor will advise you on how to start, what exercises are best, and what pace to keep.
Remember to ask about the exact benefits of taking up some physical activity, the safe exercises you can do, the ideal intensity and duration of these exercises, and the realistic goals that you can set; as well as learning what exercises are definitely off your list that may cause you harm. You can find the right level of activity for yourself and your unique chronic condition only when you have the answers to all the above considerations to act as a basis for your exercise plan.
Dealing with exercise related fear, grief, and trauma
Exercising with chronic illness can lead to experiencing a turmoil of emotions, including fear, grief, and trauma. Fear can be brought on by worrying about being judged by strangers while exercising, or being scared that we may not be able to keep up or do what we used to. There is also the fear of onset numbness, flares, and possible injury.
Grief can be experienced while exercising with chronic illness because we may not be as fast as we used to be, and the loss of functionality and stamina during our workout routines can be upsetting. We need to acknowledge that our bodies will look and work differently than they did before the onset of our chronic illness symptoms. Even knowing this may not stop us from feeling vulnerable as we see other people doing everything we once could but now can’t. We need to be aware that each person has a different level of activity they are capable of.
People diagnosed with chronic illness experience moments of acute trauma. This can mean that due to pain they feel, they simply disconnect their mind from their body in an attempt to ease the tremendous pain they feel. However, when exercising it’s impossible to disconnect our body from our mind. The sensations that accompany being physically active are discomforting, especially for people with a chronic illness – as they tend to associate the pain from exercise with the pain associated with their illness.
These are some reasons many people with chronic illness avoid exercise. We can help ourselves overcome these by thinking encouraging thoughts and assuring ourselves that we are not in danger. The more we are able to deal with these emotions, the stronger and more capable we will become. This kind of practice will make us stronger – both physically and mentally.
Start off slow
It’s important to start off slow. Choose some light, mild activities as you begin your exercise plan. These activities could include taking a short walk, gentle stretching, riding a bike leisurely, or lifting light weights. If you’re a fan of walking, take some walks in nature: go to the park or the countryside. If you prefer cycling, find a perfect bike that fits your personality and needs and cycle leisurely around your neighborhood. Any kind of physical movement, even though it might not seem much to you, is better than no movement at all.
Choose activities you like
Usually, in life, we persist and continue doing what we enjoy doing. That’s why it’s key to choose the activities we enjoy because in that way we’ll have something that ties us to the activity. Another way to persist in doing physical activities is to find an exercise buddy. That helps you stay motivated and accountable. Everything we do with our friends is easier and more bearable, as we can give each other support during hard times.
Frequency is more important than duration
This means that you should focus on moving a little every day rather than doing something for two hours once a week. You should try to make the activities a part of your day. Even things such as using the stairs, sweeping and even standing up and sitting down on a chair repetitively are also considered to be light physical activities.
Set realistic goals
It’s necessary to be realistic in setting our goals. We should start with simple and easily doable ones such as some yard work and little housework, for those people who don’t suffer from severe chronic conditions. On the other hand, people who suffer from more severe forms of illnesses should maybe start with improving their flexibility in order to start managing some usual daily activities. Setting unrealistic goals can lead to disappointment and lack of motivation.
Don’t give up
Even if sometimes you can’t keep up with a regular activity once or twice in a certain period, don’t let that bother you. Take a break if you need to, but remember to go back to exercising as soon as you can. Go over in your mind what you’ve achieved so far and think about what you can achieve in the future if you keep up the good work.
Motivation is important
Everybody has a different motivation for making themselves go through something that is extremely difficult for them, such as exercise. Some people want to be in better physical shape in order to keep up with their toddler, while other people want to improve their mood, their quality of life, and their overall health – the reasons are countless. When you have a reason strong enough, you’ll find more time and energy to endure. It’s especially important to remember your motivation on the days you don’t feel like exercising. Motivation is a very powerful tool and it can help you achieve almost anything.
Remember: Your excercise plan can be adapted to suit you
If there is an exercise that you loved but are no longer able to do, it may be able to be adapted to suit your needs. This means you don’t need to stop doing what you enjoy. For example, yoga can be practiced from a chair and you can receive all the same benefits of improved flexibility, increased strength and reduced stress
Try attending a class
Attending a fitness class has the benefit of being able to consult an instructor, who can help you do the exercises correctly and avoid any mistakes that could lead to an injury. If you worry that a “normal” fitness class may be too hard on you, you may be able to find a special class for people with disabilities or chronic illnesses. This means you also get to spend time with people who may have a similar condition as you, allowing you to share your experiences and maybe even hear a few good pieces of advice.
Learning how to live a to-some-extent-normal life when suffering from a chronic illness is not an easy task. With lots of effort, motivation, will, and support from our dear loved ones, we can try to improve as much as we can and be the best version of ourselves.
Helen Bradford is a journalism student who always seeks new ideas to write about. She enjoys blogging about beauty, health and style trends for women. When she’s not writing, she spends her spare time being active through fitness and traveling.
There is currently an international movement for the inclusion of students with disabilities in education. ‘Mainstreaming’ occurs when a child with special needs and/or a disability is taught in general classes while learning from the regular curriculum while receiving additional assistance when needed.
I had always gone to mainstream public schools up until the tenth grade when my parents decided to home-school me. Throughout my years in mainstream schools, there were times where I was the only student in mainstream classes with cerebral palsy and chronic illness. While I had support such as an IEP (Individualized Education Plan), the importance of inclusive learning wasn’t a topic that was really discussed.
Disability Awareness as Part of the Curriculum:
It’s important that the inclusion of children with disabilities and chronic illnesses is discussed in mainstream schools because we need to educate students about the different types of disabilities and chronic illness. This way, able-bodied students can have an idea about what students with disabilities and chronic illnesses have to face. This could encourage them to help their fellow students to have an easier school day.
We should also be discussing the topic of Disability History in schools, while learning about disability advocates such as Ed Roberts, who was the first student in a wheelchair to attend the University of California, Berkeley. He used his platform to speak out about disability rights for all. There is so much history that could be taught to students that currently isn’t.
Disability Awareness In Children:
Some teachers have witnessed that the inclusion of students with disabilities in mainstream classes has led to greater patience and understanding from the other students towards people with disabilities. This patience then transfers to the wider community as the students continue to grow and communicate.
From experience, I know that every time I entered a new school year it would be like starting kindergarten because I would have to constantly answer questions from others about my disability. Sometimes kids in society can be very blunt and sometimes the way kids would ask me questions about my cerebral palsy would be rude. Though I know they didn’t know that they were being rude.
This could be avoided if we had awareness in schools about the different types of disabilities they are and how one can differ from the other. For example, I find that spina bifida and cerebral palsy are two disabilities that get mixed up often. While they both can result in people using wheelchairs, they are two completely different disabilities.
Further education about people with disabilities shouldn’t end with students; Teachers should also receive more education about how to be inclusive towards students with disabilities and chronic illnesses.
Adapting education to be inclusive
Along with having a curriculum featuring disability activism that is taught in all education levels, we should also have adaptive activities for people with disabilities to participate in throughout the school year. This could include certain events that bring awareness to people with disabilities like a disability awareness week.
This could give a voice to students with disabilities and allow the students that have a hard time fitting in due to their disability a platform to share their experiences. This could allow them to bring awareness to the obstacles they face as students who are in an environment that wasn’t made for them, and how they must adapt, which can be extremely difficult.
I strongly feel that we as a community need to start fighting for schools to teach students about disabilities and chronic illness because knowledge understanding is the key to living in a world where everyone can feel accepted.
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.
Great America Smokeout, a day where Americans who smoke are encouraged to live a smoke-free life. The event has been running for over 40 years and is sponsored by the America Cancer Society (ACS) The event takes place annually on the third Thursday of November. To mark the day we are sharing Chris’s journey to quit smoking cigarettes and sharing some of the tips he found helpful.
It’s Hard But Worth It
Quitting smoking is hard, about as hard as quitting heroin (or so they say). And having the experience of quitting heroin and then smoking, I can say that this saying is pretty accurate! I was a little over 2 years clean and sober from drugs and alcohol when I decided to quit smoking cigarettes. I didn’t quit cold turkey, I used my vape to get myself away from actual cigarettes. This was NOT easy, the vape is very different from cigarettes. But with hard work, talking to someone when I wanted to smoke, and eating carrots like they were cigarettes I was able to get off the cigarettes.
About six months later I decided that I wanted to get off the nicotine that was in my vape juice, I gradually decreased the amount of nicotine until I was down to zero. Now I still vape, but without nicotine and not nearly as much. I know that it really is possible to quit cigarettes, no matter how hard it is, with hard work, a lot of willpower, and the support of people around you.
Ways To Quit Smoking
The American Cancer Society (ACS) has a site with a lot of resources on how to quit. There are multiple other methods that can be used to quit smoking, including electronic cigarettes, nicotine replacement therapy, and prescription drugs.
The first step is to decide what method you want to use, the one you think will work best for you and that you will be able to stick to. The other most important step to beginning to quit is to gather support, whether that is family, friends, stop-smoking programs, telephone helplines, or counselors. Once you’ve chosen your method, gathered your support network, you need to pick a quit day. Mark it in your calendar, and share that day with your friends and family so they can hold you accountable.
Another helpful thing is to remove all your ashtrays and cigarettes in your possession in your home, car, and work. The last thing to do before your quit date is to pick which method of quitting you wish to use and to get everything prepared for you to use it on your quit date.
The most important thing to do when you reach your quit date is not to give in to temptation, no matter what. This is hard, and you need to keep yourself busy so you can get through the rough days ahead. Whether you do that by exercise, a hobby, or anything else to distract yourself. Another thing that is helpful is to avoid situations where the urge to smoke is strong and to avoid people who are smoking. This doesn’t mean that you stop being friends with people who are smokers, just don’t be around them while they are smoking. The last suggestion is to change your routine. This is because smoking will still be a part of your daily routine, and the goal is to change those habits so smoking isn’t a part of it. These changes can be as simple as drinking tea instead of coffee or eat breakfast in the kitchen instead of the living room.
The 4 D’s
You also must be prepared to have cravings. These are just part of quitting.
The ACS recommends using the 4 D’s:
Delay– just pause and wait 10 minutes, and repeat the 10 minutes if you need to.
Deep breathe– slowly breathe in through your nose and out through your mouth, and then if you need to ground yourself by finding 5 things you can see, 4 things you can hear, 3 things you can feel, and 2 things you can taste.
Drink water– this will help flush your system of the nicotine as well as keeping you hydrated.
Do something else– get up and move or do something you enjoy when you feel that urge to smoke. Some activities will trigger the urge to smoke, be prepared for that.
The Withdrawal Symptoms Will Pass
Remember that nicotine is a drug, and it will have both physical and mental withdrawal just like any other drug. These physical withdrawal symptoms include intense cravings, sweating, nausea, headaches, coughing, sore throat, insomnia, and weight gain. These symptoms typically peak around two and three days after quitting. But if you ignore them, they will eventually go away. The symptoms will most likely go way in two to four weeks, but some people still experience them for several months, however not as bad as in the beginning.
The mental withdrawals include depression, grief, a sense of loss, frustration, impatience, anger, anxiety, irritability, trouble concentrating, and restlessness or boredom. The hardest part for most people who go through nicotine withdrawals are the emotional effects, rather than the physical ones.
It Can Be Done
Overall, quitting smoking is difficult but it is possible. What I needed more than anything was to truly want to quit smoking. I could say that I had or needed to quit all the time, but I had to be truly ready to quit. I had to want it. And once I wanted it, I had to be prepared for the withdrawals, both physical and mental. I personally had to replace the habit with something else, I chose to vape to replace smoking, some might choose to eat a certain type of food to get over the habit so it’s all dependent on what works for you! You will need something to get through the cravings because they can hard to get through. One thing I learned when I got clean and sober was to set a timer, and that worked for quitting smoking as well. For example, if I had a strong craving, I didn’t think I could get through the craving, but I could get through 5 minutes. So I set a timer for 5 minutes and could get through those minutes, and then I reset the timer to go again. And eventually the craving will pass and you’ll be okay. That’s just my experience, and everyone has their own tricks on how to quit, take what works for you and leave the rest. But one more time-it is possible to quit smoking.
About The Author
Chris is a 23 years old college student, living with several chronic illnesses. He loves meeting and talking to new people, especially those who struggle with similar illnesses to his.
Spooky season is fast approaching. With many of us trying to decide what/who we want to dress up as. Growing up with Cerebral Palsy never stopped me from taking part in the festivities. I want to share my experience with Halloween and share some advice for parents with children with Cerebral Palsy to help them feel comfortable with trick or treating.
My Trick Or Treating Experiences
Growing up with Cerebral Palsy made holidays extra fun especially Halloween because I was able to be creative with my costumes, when I was seven and I was in a body cast for six weeks due to hip dislocation surgery my mom painted my face and I was a zombie. Although I wasn’t able to go trick-or-treating that particular year my mother made it fun. Trick-or-treating with Cerebral Palsy was always fun for me especially since I made my wheelchair into my costume. The year I was in the cast I became a dead zombie wheelchair racer.
Ax a kid trick-or-treating was always fun & I made the best of the situation some people in the neighborhood would feel sorry for me because of my Cerebral palsy. Sometimes they would give me extra candy. As a little kid, I used to think that this is great! I would get an extra candy just because I was different from all the other kids in the neighborhood. Now that I’m an adult I hate that concept because I feel like every child should be treated the same when it comes to celebrating Halloween because we are just like everybody else in our unique way!
Tips For Trick Or Treating With Cerebral Palsy
Now I want to discuss the fun part of Halloween but also my least favorite part of Halloween as someone with Cerebral Palsy for those of you who weren’t familiar with the CP it affects part of the brain that can cause you to have involuntary jumping attacks. If something jumps out suddenly or if we hear scary music, a jumping attack could happen. This would happen to me a lot every Halloween so my advice to any parent preparing for Halloween with their Cerebral Palsy child always be patient when they have these attack because we can’t help it, the attacks comes naturally within our bodies so just be understanding and also try talking to your neighbors about your child’s condition. Which could help make Trick or Treating for your child less stressful and more enjoyable.
The second piece of advice I would give people with disabilities is trick or ticking can be fun, be creative with your child, let them use their imagination when it comes to being part of the activities. It really helps a child feel welcome into society and loved by the community. It will make them feel proud about having a disability and being unique it as well.
My third and last piece of advice I would give, is set a time to go out trick or treating. Many with Cerebral Palsy seem to have issues with anxiety and chronic pain. We can have issues with being outdoors for a long time & can get easily annoyed by making us feel uncomfortable. It is important that you have a set time for trick or treating so your child can be prepared before hand.
With that being said I hope everyone has a happy and safe Halloween
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.
I’ve always found it difficult to share my feelings
with other people. I would keep it all to myself. This, however, changed when
we received the latest diagnosis for both my daughters.
Let me start by giving you some background information about me and my family: It’s just me and my girls, and we live in Holland. We are also known as the bendy bunch, all three of us have Ehlers Danlos syndrome. And as a bonus, we all have some similar and some different additional illnesses (which we like to refer to as extra toppings). Mine are adenomyosis, dilated aorta, retinal vein occlusions, high blood pressure, and I no longer have my own teeth. Both my daughters have POTS, ME and as we know now since June this year Craniocervical Instability (CCI), Atlantoaxial instability (AAI), hindbrain herniation, and the youngest is close to brainstem compression. When they were giving out chronical illnesses, we were obviously front in line… And I’m pretty sure I forgot to write some of them down.
The shock of these new diagnoses
The latest diagnoses were a shock. We’ve been dealing with chronic illnesses for quite a while now, but this one really gave me a scare. Not one, but both my girls have a life-threatening and life-limiting disease. And as I usually do when I get stressed, I started planning and thinking about what could be done to fix this. I turned to the insurance company, but the treatment, an operation done in another country, wasn’t covered. This didn’t come as a big surprise, because we had to go to another country for the diagnosis which, as you can probably guess, was also not covered.
As I continued to process this, my thoughts
went in all different directions as my emotions went into a spin. You wouldn’t
have known that, though. On the outside I was calm and rational, and I tried to
stay that way. I had to be strong for my daughters. They needed to know that
everything would be okay, or at least, as normal as possible. When we received the
news about these diagnoses, the adrenaline took over and I went into first,
second and third gear. I’m still feeling it after two months because if I let
go of this adrenaline, I’m afraid I’ll break down. And that’s not an
option.
Creating a Foundation and Establishing a Social Media Presence
In the last two moths following the diagnoses I started a foundation called Help Jane & Rosa battle CCI/AAI. We had to go to a notary office to make it official. As a result of the Dutch tax laws, I found that a foundation is the best way to go. Otherwise, all donations would be considered an income. Friends of mine built the website, and I deliver all of the text and images. We have also created a Facebook page, an Instagram account, a Twitter account and a YouTube channel. Unfortunately, most of the videos on our YouTube channel are in Dutch, however we try to make some English versions too.
Filming these videos was really awkward
for me. In the beginning of this article I mentioned that I’m not a great
sharer, but as you can see, I’ve stepped outside all of those boundaries I once
had. Writing about what’s going on in our lives is one thing, however filming
videos was a huge step for me. If you want a grin you should check it out. Even
with me speaking in Dutch you can see how exposed and awkward I feel. Luckily
my daughters, especially Jane, are taking care of the video aspect. This meant
I could start writing a blog for our website. All this work establishing a
social media presence is to raise more awareness and to fight for an operation
for both of my girls.
The Support of Friends, Family, and Aquiantances
I always knew I had great friends and
family (not all of my family has been supportive, but who has a perfect
family?) but what really surprised me is how supportive even my colleagues have
been. Not only have they supported me by making a donation, they have also done
so much more. One started designing T-shirts, one started developing calendars,
and Jane’s old school of is thinking about a project for raising funds. They
offer help in any way they can. I know not everyone is so lucky, and for me, receiving
all this support was a true eye opener.
I realised that not only was I bad at sharing, I was also reluctant to ask for help. I surprised a lot of people by reaching out for help, and as the time goes by, it gets easier to do so. I still blush when I do, especially when I do it face to face. But I’m managing it and it makes me proud that I do. Today during a coffee break at work, I asked the owner of the coffee bar if he could share our fundraising page and make a donation. And again, the warmth of people was overwhelming.
On the workdays I’ve been drinking my morning coffee there for over the last five years, my daughters’ illnesses have come up in some conversation. He was very concerned for their health and immediately started thinking about things he could do to help. This shows that even acquaintances are sometimes more than just people you meet now and then. The bond you have with them is sometimes stronger than you think.
All Of This Helps Me To Stay Strong
Blogging and writing about how I feel what’s going on, and where we stand is really helping me cope. Sometimes it puts things into perspective or helps me to channel my emotions in a constructive way. Today I felt sad while I was going to work. I was quiet during a meeting because my thoughts were all over the place and I felt like I could burst into tears at any moment. So, I started writing this article, thinking about all that has happened in the past two months and all that I’ve achieved. And for a chronically ill mum, with chronically ill daughters, I feel like that’s a lot.
So, I’ll keep you posted about how all
of these illnesses have an effect on us and our lives, about how the
fundraising is going and what difficulties comes with raising funds, and how
all of this mixes with work and day to day life. Sometimes it’ll be sad,
sometimes it’ll be fun and sometimes it’s just how it is. Because every day is
different and life don’t always turns out as planned. And that’s okay, as long
as we have each other we’ll get wherever we want to go, eventually. The love in
our family will always get us through the rough spots and that’s how I stay
strong.
Monique Blaauw is a mother of two daughters (20 and 19). Founder, chair(wo)man and treasurer of the Help Jane & Rosa battle CCI/AAI foundation. She has been a single mother for 18 and a half years. Works fulltime, as well as being the caregiver for both her chronically ill daughters and older mother and is chronically ill herself.
We hear the phrase “you can do anything if you try,” or something similar, throughout our entire lives; starting at preschool and kindergarten and continuing throughout school. And sure, for many children this may be true; if they put their efforts into something, they may eventually master their craft and achieve all their goals.
However, this phrase completely ignores the fact that we each have our own unique strengths and weaknesses. Someone who is naturally good at maths is going to do far better in that subject than someone who is not. And that’s ok.
This phrase becomes even more illogical once you consider that it is also often applied to disabled and chronically ill youth. When experiencing a disability or chronic illness, you often can’t do certain things, no matter how hard you try. So why is it being drilled into disabled and chronically ill youth that they can? Isn’t this harmful? Wouldn’t this lead to false expectations and damaged self-esteem?
You may be reading this and be thinking that I’m just cynical. This article may even be seen as a little negative and controversial. However, for me, finally realising that I couldn’t do ‘everything if I put enough effort into it’ was freeing. I’ll explain why;
Coming to the realisation that I can’t do everything I try
After a lifetime of feeling like I haven’t been achieving enough (through my grades, sport, etc.), last year I had to give up studying the course that would have led me to my dream career due to my health. I felt so dejected because all my life I had been taught that I can do anything if I try hard enough.
The thing is, I WAS trying. I was working myself into exhaustion, but it still wasn’t enough. I felt like I wasn’t enough. I felt horrible about myself, to the point of feeling depressed. However, I got back up and found another course that I would be able to study without having as big of an impact on my health. I still felt horrible, but I did my best and found that this course was a lot better for me.
Six months in, I came to a realisation. I didn’t fail at continuing with the previous course because I wasn’t trying hard enough, I failed at continuing because my health didn’t allow it. It wasn’t apathy on my part, it was an actual, physical limitation.
Once I accepted my limitations, this led me to become a lot more accepting of myself. I wish I had come to this conclusion sooner; it would have saved me a lot of heartache.
Being told that I could do anything I wanted as a child set me up for a lot of disappointment. And despite how harmful this narrative is, I see evidence that it is still being told to children every single day. Here are some other phrases that are often directed at chronically ill and disabled youth that also fit within this narrative:
“The only disability in life is a bad attitude.”
This one especially upsets me. It wasn’t a bad attitude that caused me to experience immense chronic pain on a daily basis starting in childhood. It isn’t a bad attitude that has left me using a walking cane most of the day to get around.
This phrase takes the word “disability”, a word that has a lot of meaning to a lot of people, and tries to change the definition completely. This phrase frames disability as apathy towards carrying out tasks, rather than an actual inability to carry out these tasks.
The “What’s your excuse?” comparisons
You may have seen memes depicting disabled athletes, with phrases written across them saying things such as “what’s your excuse?” or even worse, “Your excuse is invalid.” These memes basically use disabled people to shame others (including other disabled people) into thinking they need to adopt certain habits or push themselves past their limits.
I understand wanting to come up with a viral, inspirational meme, but chronically ill and disabled people should not be exploited in the process. I know able-bodied and disabled people alike who agree that these memes are very harmful, especially in an age where social media is such a huge part of our lives, even more so for the youth.
My “excuse”, as they put it in the second quote, is certainly not “invalid”. I will never be an award-winning athlete, as the constant pain and exhaustion make exercise difficult. I will never be an award-winning mathematician because the brain fog makes remembering formulas difficult. I’m ok with that.
As I said above, everyone has their own strengths and weaknesses. Just because one disabled or chronically ill person achieves something, does not mean every other disabled or chronically ill person can.
You can’t judge a group of people by the actions of a few, and they certainly shouldn’t be shamed just because a member of the community has achieved something that they haven’t.
“There’s no such word as ‘can’t’”
This phrase confused me a lot as a child. Mostly because my young brain would take it literally, and I knew the word “can’t” did exist. When I was presented with this phrase, for the longest time I would go fetch the dictionary to prove them wrong.
It also confused me because I knew there were things that I, and other humans, couldn’t do. I can’t fly independent of a form of aircraft. I can’t breathe underwater without using a snorkel or oxygen tank. The word “can’t” doesn’t have to be a negative word attributed to pessimists, and knowing when to accept your limits shouldn’t be considered negative either.
“Don’t let your disability define you.”
Another phrase that is often said to chronically ill or disabled youth is that we “shouldn’t let our disabilities/chronic illnesses hold us back” or “shouldn’t let our disabilities/chronic illnesses define us”. I find this to be a very naive take.
Sure, we aren’t wholly defined by our disability/ies, but what we are able to do often is. There are ways to overcome these challenges, but only to a certain extent. There are some things that, no matter how hard you push yourself, you’ll never be able to achieve.
Accepting that isn’t letting your disability define you, it’s understanding your limits and knowing there are better areas to concentrate your energy.
I’ve even had people tell me that I shouldn’t talk about my chronic illness or disability – at all. That talking about my chronic illness or disability is letting my health control me and consume my thoughts.
My disability is a part of me. I can acknowledge my disability’s effect on my life and be proud of what I achieve despite it without letting it define me. Not to mention, it’s hard not to think about your chronic pain when you experience it every minute of the day… But that’s easy to ignore, right?
While on the surface these phrases may seem inspirational, they may do more harm than good when it comes to disabled and chronically ill youth. They can lead to false hope, which can chip away at the young person’s self-esteem when they don’t achieve everything they aim to like it did to me.
Not everyone can do everything, no matter how hard they try. Instead, we should be encouraging disabled and chronically ill youth to try their hardest to achieve goals that are realistic, yet also push and challenge them at the same time.
If there’s one thing I want disabled and chronically ill youth to take away from this article, it is that you should feel comfortable doing what you CAN. With the help of those who care about you, set your own pace in life.
Push yourself, but not so hard that your goals become unachievable. Don’t let society tell you that trying your hardest isn’t good enough, because it is. Know that you are enough.
About The Author
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.
According to the Merriam-Webster dictionary, the word “chronic” is defined as: continuing or occurring again and again for a long time, always present or encountered. The word “pain” is simply defined as: mild to severe discomfort and suffering. If you combine the two definitions of the words “chronic” and “pain”, we reach a sole statement that describes the life of those whose “normal” has become something most people cannot comprehend: mild tosevere discomfort and suffering that is continuing and occurring again and again for a long time, and is always present and encountered.
Chronic Pain is Life Changing
As is the case with a lot of chronic pain warriors, my life didn’t start out this way. There was once a time when my life didn’t involve seeing my doctors more often than my friends; when pharmacy visits didn’t happen every other day; when I didn’t have to end up in the ER on a Wednesday night, curled tightly into the fetal position; when I didn’t spend my nights tossing and turning because of the insomnia; when I didn’t have to open a medication bottle multiple times a day.
There was a time when when I didn’t have to research for hours on end just to understand what happens beneath my own skin; when I didn’t have to sit and rest after a shower; when I didn’t have to try to explain things about my body to other people that even I don’t understand fully; and a time when I wasn’t intimately familiar with the definition of “chronic pain” as a result of life has become every minute of every day.
Everything changed on of March 21st, 2011. It happened in the blink of an eye. It was a Monday, a bright and sunny afternoon, when an overthrown softball collided with the back of my skull as I was leaving our school’s softball field. I don’t remember much of that incident, except for three distinct things: my coach’s voice close by which was ricocheting around me like a bouncy ball; the cracking sound of the softball hitting my skull resounding in my ears like an echo in a cave; And lastly, the pain. The pain is what I remember the most, and rightly so, as it hasn’t stopped in 8 years, 5 months, and 25 days.
My Chronic Pain Journey
Throughout these years, months, and days, it has been a perplexing, debilitating, yet rewarding and valuable journey. There have been countless moments where I can’t even seem to even hold myself up anymore, falling to the floor and weeping for the soul that’s exhausted and depleted, and wondering if this is a life worth even living. I watched the doctor that I had trusted for 4 years look me in the eye and confidently tell me “I don’t believe you’re in that much pain.” I had turned to her to help me find answers to my never-ending questions and search for treatments that would help give me just a small glimpse of blissful relief, and this is what she said to me. She didn’t see the way I collapsed in the hallway; she didn’t hear my sobs outside of her pretentiously white-walled office; she didn’t see my family pick me up off the ground, all the while telling me repeatedly “we believe you.”
Living chronically ill isn’t for the weak, it has more hard moments that you would ever be able to imagine. However, there are also some moments that have made this journey that I’ve been living worth it in the end. For example, it has taught me how self-love is one of the most important things in life. One morning, as I stared into the full-length mirror that I attached to the back of my university dorm door, all I could see was a shadow of someone I once knew, someone I couldn’t even recognize. Staring at my reflection with my roommates laughing on the other side of the door, I said to my reflection, “I am going to love you one day, give me some time.” I realized that just because our bodies feel like a prison, that doesn’t mean we should treat them that way. And sometime later, before I even knew it, I stared at that same reflection and saw something else. I saw someone who adored their body, even if it malfunctioned.
Living life with chronic pain, a mild to severe discomfort and suffering that is continuing and occurring again and again for a long time, always present and encountered, might be hard for others to understand, but it’s an understood normal for us chronic pain warriors. We wake up every morning to endure another day, with a strength we didn’t know was possible. But it’s so important to love yourself, despite the reality your body puts you through. I loved myself as I walked across my university stage and received my college diploma; and I also loved myself as I sat in the ER in excruciating pain on a Tuesday night. Your body deserves the love you have to give, too.
As a young adult with chronic illness, I have received a lot of snide comments from people about their perception of my lack of independence. I also find that I receive snide looks when I let it slip that I require help with things that other people may not.
These snide comments or looks can come from anyone; whether it be family, people close to me, medical professionals, or even complete strangers. Independence can be difficult to retain and maintain when you have a chronic illness, and it doesn’t help when people point out that they think it’s lacking, especially if your independence is one of your insecurities
Unsolicited Outside Opinions.
I recently saw a post online saying that the only way to help someone with chronic pain is to NOT help them at all. Apparently, if you do things for someone with chronic pain, they aren’t going to want to learn to do those things for themselves.
As someone with Fibromyalgia, I find this assessment extremely flawed. Sure, it may be accurate for those recovering from an injury or surgery, however, it is certainly not accurate for those with chronic illness. For many people with chronic illness, there is no recovery.
Sure, symptoms may become better managed, however, they may never go away. So, refusing to offer someone help when they do need it just because they may not need it in the future seems pretty illogical to me.
This isn’t the first time I have encountered people with this kind of thinking in my chronic illness journey. When I was about 13, my mother was told by an intern psychologist that the reason I didn’t do things around the house that ‘normal’ kids would do, such as packing their own lunch every single night or fetching dinner from the kitchen, was because I simply didn’t want to.
My mother was told that I didn’t struggle to move, I just had behavioural issues and lack of motivation. This obviously wasn’t true. My parents didn’t listen to this person, however, because they saw the slow progression of my condition. They saw the nights I laid curled up in a ball, whimpering or crying in pain, unable to move.
They saw how I became more and more dependent on my crutches (I’ve now switched to a walking cane) because I was in too much pain to bear my own body weight. I’m so glad my parents did what they knew to be right for me, as it was only with their help that I was able to make it through high school without becoming more overcome with fatigue than I already was.
Moving Out of Home.
Moving out of my parent’s home was a massive step for me when it came to gaining more independence. It felt good because I was doing something completely for myself. I searched for flats, I wrote up budgets and did everything else that came with planning to move.
It all seemed to be coming together perfectly. It was during the first few weeks of moving that I received my first reality check. Moving my stuff from my parent’s place was both time consuming and extremely exhausting. I needed a lot of help and my pain levels skyrocketed, both from the physical task of moving as well as the stress.
Once I was finally settled, I realised I was drowning in all the housework. I was pushing myself to my limit and not really getting anywhere. It wasn’t long before I realised that no matter how hard I tried or wished it was so, moving out of home didn’t make me require help any less.
It really struck me one night when I was lying in bed, having a pain flare, wishing I had the energy to get up and get my medication. I was far too sore to move, and I didn’t have anyone to ask to for help like I would have at home. I felt extremely lonely, and I cried myself to sleep that night.
Relying on My Mother for Care.
Despite the fact that my mobility is hindered due to my chronic pain, I do not fit the criteria for a caregiver. I was refused carer hours when I applied for it after my 18th birthday, and again after I moved out, despite the fact I had received carer hours prior to my 18th birthday.
They apparently don’t provide help to people over 18 who don’t have a diagnosis that is on their checklist, no matter what the person’s physical ability is. At one stage I was even told: “well if you were diagnosed with [insert diagnosis with similar symptoms to mine] we’d be able to help you.”
As a result of this, despite me not living at home, my mother drives me around, does my washing, and helps me tidy my room. I feel bad for needing her help because she has two boys to look after, both of which have autism as well as one of them having a Chromosome Deletion.
However, I have no choice. I am in a place where I simply can’t do these things for myself. Believe me, I’ve tried. Just this morning I started tidying my room before my mother arrived to help hang up clothes, and by the time I was finished, I was shaking with exhaustion.
I could barely hold myself up in a sitting position, despite the fact that all I had been doing very little activity. My mother is honestly my hero. I wouldn’t be able to function without her.
Not long after my application for carer hours was denied after moving out, I was talking to someone about how I had been refused help and how I was frustrated. When I tried to explain my situation, they replied: “well, maybe it’s because they want you to be independent.” I was shocked.
This implied that I was choosing to be dependent and that I could just switch my dependence off. I was torn between wanting to laugh and wanting to cry.
I would be fully independent if I could.
People with chronic illness don’t ask for help ‘just because’. They ask because they need it. This idea that the chronically ill should be left to do everything for themselves is extremely harmful.
Sure, there are the people who have chronic illnesses who are fully independent, and I respect them for it. However, not everyone can manage that. One thing that I don’t think people that haven’t experienced chronic illness (first or even second hand) understand is that if I could do these things for myself, I would.
I’d have my driver’s license, I’d be living in a student apartment on my own all the way across the city, and I’d be studying full-time, doing the course I dreamed about throughout high school that I had to give up due to my health.
The one message I want to convey in this article is that my dependence is not a choice. It’s me doing the most that I can.
About The Author
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.
