Is Using My Cane A Mockery Of Old People?

A letter to the Elderly Lady who called my cane usage "a mockery of old people"

Coming to terms with the fact that I needed to use a walking cane was initially very difficult for me. After all, I wasn’t old, and the stigma around walking canes is that they are only for the use of the elderly. I was 16 years old and barely able to walk half the time. The pain of Fibromyalgia consumed every minute of my life (it still does), and I was barely getting out of the house besides going to school.

The Reasons For My Cane

I didn’t even have the energy to grocery shop, which is something I had always enjoyed helping my mother with. At that stage, I had been coping with widespread chronic pain for about 9 years. I was struggling my way through high school, and I didn’t know if there was any hope for my future, since the pain has done nothing but get worse. My quality of life and self-esteem was almost nil.

Getting a walking cane changed that completely. I was able to gain back some of the independence that I had when my pain was less severe. I’m now 19 and attending University part-time. I know for sure that without using a walking cane, I wouldn’t be able to cope with the commute to and from campus (believe me, I’ve tried).

My main fear when it came to using a walking cane was that people would judge me, and I’m not going to lie; they did. They still do. Despite what has been said to me, I continued to use my walking cane whenever I decided that I needed it, which was at least half of the time. As I continued to use it, I become more and more confident about it.

Is Using My Cane A Mockery Of Old People?

Now when I use my walking cane as a 19-year-old, I barely think about it unless someone mentions it to me. It’s a part of me, and I need it in order to be able to function in a semi-normal way. Medical professionals I have seen have approved of me using it, and nothing anyone says will change that.

In this article, I’m going to outline some of the instances where people have voiced their judgements about me using a walking cane, and why I think these judgements are flawed.

Being Accused Of Mocking The Elderly

My mother went to an appointment one morning recently, and in the waiting room a conversation started up between my mother and an elderly lady. My mother is a friendly person, so she enjoys talking to people whether she knows them or not.

At some stage during the conversation, the lady started talking about how there’s a young lady using a walking cane around our town, and how this elderly lady and her friends agree that this young woman is making a mockery of old people.

My town is not very big, and everyone knows someone who knows someone. I can confidently say that I’m the only young adult, let alone young lady, in my town who uses a walking cane (that I have seen). My mother had obviously come to the same conclusion because she told this lady that she knew the young woman who used a walking cane.

She told the lady that this young woman was using it for her diagnosed medical condition that she had since childhood, and that she wasn’t mocking anyone. The next day, my mother told me about what this lady had said about me. I was shocked.

This is the event that inspired me to write this article. I was always planning to write about my experiences using a walking cane as a teenager, however, this gave me both the push and the context I needed.

I didn’t realise that me using a cane as a teenager would bother anyone. I unknowingly, and by no fault of my own, had become a subject of town gossip. And despite me not wanting it to, it hurt me. It hurt me that someone would think such a terrible thing of me when I would never mock anyone for anything that is out of their control.

I would understand if it were children, or even very young adults were the ones being cruel. Having a lack of life experience can result in ignorance. What I don’t understand, however, is grown adults of thirty years or older being so incredibly petty and judgemental.

I can’t wrap my head around it. Having people say these types of things about you can be so incredibly damaging to the self-esteem of someone who is already struggling with chronic illness.

Saying things like this could push someone over the edge, it’s that serious. This isn’t the first, and probably won’t be the last, time that my use of a walking cane has been criticised.

“Is That [Cane] Really Necessary?”

The first time I walked into my high school’s nurse’s office with my walking cane, I was nervous about the reaction I would get. Looking back, I was right to be nervous. When the nurse on duty that day saw me using the cane, she looked me up and down, scoffed, and said in an amused tone “is that really necessary?”

My friend was with me and heard this too, and I was mortified. I then informed her that my Chronic Pain Team physiotherapist had approved me using a cane instead of crutches and then asked for my medication, holding back tears. Once my mother heard about what had been said, she called the nurse and explained my situation.

While the nurse never made another comment about my cane again, I didn’t feel comfortable around her from then on and I avoided her as much as possible for my final years before my graduation.

“You Aren’t [Old]”

A month or so ago, I was riding in an elevator at the local train station with an elderly man who also had a walking cane. He was looking me up and down, which is normal for me around older people.

He asked me “why are you using a walking cane? You aren’t my age.” I smiled at him, a bit taken aback, and politely replied “I have a chronic pain condition. It can make it difficult to walk.” I kept it simple, I didn’t want to go into details. He then replied “well I’m old. I’m allowed to use one.” The doors opened just as he finished his sentence, and I exited the elevator thinking about what he had said.

Was he trying to say that only old people were allowed to use walking canes? I didn’t let what he said upset me, I just carried on with my day as usual and kind of pushed it out of my mind. The memory then resurfaced when I was thinking about what was said about me to my mother.

I Won’t Apologise For Using A Walking Cane.

I don’t understand what people have to gain from being so judgemental. It baffles me that someone can have such disdain towards someone they haven’t met or barely know.

Having an invisible disability or illness means that besides any tools or walking aids that are used (such as a wheelchair, a walking frame, or a walking cane), there is no way to tell what I, or any other person with chronic illness, goes through.

I don’t use a walking cane for fun or because I think it’s cool. I use it because I genuinely need it for support when I’m in a lot of pain. I don’t enjoy being a teenager who uses a enjoy walking cane. I don’t the looks of curiosity or disdain I often get from other adults.

However, I will continue to use it because I wouldn’t get through the day without it. I won’t apologise for using a walking aid, no matter what anyone thinks of it.

Having had a chronic illness since childhood has made my skin extremely thick. It has made me far less mindful of what those who aren’t my close friends, immediate family, or doctors have to say about my health.

Of course, what people say about me does still bother me, otherwise, I wouldn’t be writing this article. However, it doesn’t affect me as much as it used to. I don’t break down and cry when I hear what people say about me, as I would have a few years ago.

My aim with writing my experiences in this article is to spread awareness about young people worldwide who use walking canes due to their health. They do exist, and they certainly aren’t trying to mock anyone. They’re just trying to live their lives, like everyone else.

Please, if you ever feel tempted to negatively comment on a young person’s use of a walking aid, please don’t. And if you are a young person who uses a walking aid who faces judgement, know that you are not alone.

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.

July 8, 2019June 24, 2019

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

Tips and Tricks for Studying With a Chronic Illness

Since I first started complaining of experiencing Fibromyalgia symptoms such as chronic pain at the age of 7, attending school has progressively become more and more difficult. Now, 12 years later, I experience constant widespread pain and fatigue. Despite the constant pain that is undoubtedly made worse by me attending university, I still love studying.

I’m the kind of person that enjoyed attending school as a child, and since I’ve been signed off work by my doctor, I feel like I’d be incomplete without study. Distance study could be an option for me since I become exhausted easily, however, I find that I don’t have the same motivation to complete work that I have when I attend classes at a campus.

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

I find that I have the mindset of if I travel into university, I may as well make the trip worth it by getting as much work done as possible. Plus, despite how boring they can be, I love the vibes of lectures and tutorials.

Please keep in mind that since I live and attend a university in New Zealand, some of these tips and tricks may not be applicable internationally. However, I hope that some of these tips and tricks are helpful to any students with chronic illness who may be reading this article.

Don’t Discount The Option Of Part-time Study

When I was first applying for university, I didn’t want to think about part-time study. I thought that because I (barely) managed full-time study through high school, I should be able to manage full time at university too. Basically, I was in denial. I thought that studying part-time would mean that I wasn’t coping as well as I should be and that I would be less of a student.

Luckily, I was turned down for the full-time program I had applied for, so instead, I had to do a part-time, four days a week program for a year to see if I would cope with the difficulty of the classes. While I did pass my classes during that year, the four-days-a-week schedule was very stressful and caused my health to go downhill.

Due to this, I had to dismiss the full-time program as an option for the next year, despite it being the only program that would give me the qualifications I need for my dream career. When I first had to come to terms with this it was a little heartbreaking. It felt like my dreams and aspirations were crumbling down around me. I now am studying part-time, three days a week in a completely different field. And while this is still difficult for me, I am far more comfortable attending university than I was before.

Contact Disability Services At Your Institution Of Study

When I first started applying to universities during my final year of high school, one of the first things I did was check out their Disability Services and the application process. I had been under the high school equivalent, which, I was told, considerably increased my chances of being accepted by the service. Being under similar services at high school gave me insight as to what to expect and what assistance I may be able to ask for.

The application process was pretty simple. I was given a form to fill out, which required not only a doctor’s input as to what assistance I required but also allowed me to write a paragraph myself about my chronic pain and how it affects my studies. I also attached some notes from my Chronic Pain Clinic Physiotherapist, who I had been seeing for the past two years at that stage, to add further context to my application.

Disability Services has helped me with many things. They have made sure I have a supportive chair in the classes that allow it, and exam considerations such as rest breaks (due to my back pain) and extra time (due to me having Complex Regional Pain Syndrome in the wrist I write with, and brain fog causing concentration issues). I definitely recommend checking to see if this is an option available to you at the institution you attend.

Don’t Be Too Self-conscious To Use A Walking Aid If You Need One

I have been using a walking cane since I was 16. Before that, I had been using crutches constantly to help cope with my hip, knee, ankle, and back pain. I switched to a walking cane because crutches became too harsh on my back and shoulders, causing too much pain to make using crutches worth it.

Being a young person who uses a walking cane, there are times when I can become very self-conscious, especially around other people my age. As you can imagine, this left me very anxious about the prospect of using my walking cane at university. However, I realised that I do need the walking cane to get through the day without collapsing from pain and exhaustion, so I decided that what other people thought of me didn’t matter.

Since my pain levels fluctuate, I love using a walking cane that folds up. This means that I can pack it away in my bag when my pain levels are lower, and then bring it back out when my pain levels are high.

Set Daily Or Weekly Study Goals Instead Of Schedules

Many students like to create an hour-by-hour schedule for completing their assessments and studying content from their lectures. However, when you’re in constant, fluctuating pain, this may not be manageable for you. For me personally, setting a schedule would be like setting myself up to fail, because my pain levels are never at a constant level (unless I’m having a really bad day and the pain is constantly high).

So, say I schedule an hour of study for 4:00pm. I may be feeling ok that morning, but by 4:00 I may be so tired and sore that I can’t concentrate. Instead, I like to set goals such as reading a chapter of a textbook a day leading up to an exam or aiming to complete a certain amount of an assignment within a certain amount of time.

During a particularly bad flare, I may not be able to achieve these goals, but when I’m not in extreme amounts of pain, these goals make studying while in pain achievable.

Keep Your Medication On You

I’m often guilty of forgetting to do this. While I take two large sets of pills first thing in the morning as well as at night, I also take pain medication during the day if required. I find it is far better to have my medication with me and not need it than it is to need my medication and not have any on me.

Since I travel two and a half hours each way to get to my university, the chances are high that I’ll need medication at some stage during the day. Being in too much pain can seriously affect my ability to pay attention in class and take notes, which in turn can put my grades at risk.

For this reason, it is imperative that I don’t forget to pack a sleeve of pain pills in my bag. I also love taking a small tube of Voltaren Emulgel with me to university. It is great for massaging acute aches and pains and works especially well on the swelling I get in my wrist.

Explore Your Campus And Find A Place You Can Rest In Between Classes

If you don’t live on campus and suffer from fatigue, this tip can be incredibly useful. My favourite space to rest at university is a room in the library that has couches and large bean bags. If a bean bag is available, I can put all my stuff down, lay back, and relax. This space also allows eating and drinking, so I can eat lunch and chill in this space.

Stay Hydrated

This tip may seem extremely obvious to people, however, I am often guilty of not drinking enough. I personally like to pack a water bottle that is at least one litre in my bag. While staying hydrated isn’t going to cure your symptoms, it does help with your overall feeling of wellness.

Use An Online Editor For Your Essays

This is honestly a life-saver when it comes to handing in essays. Often when a deadline is looming and I’m finishing off my assignment, my stress levels rise, and as a result, my pain and fatigue levels also do too. This can lead to me experiencing brain-fog as I write, which can result in anything from grammar mistakes to me writing utter nonsense without realising it.

Using a free online editor program such as Grammarly, I can detect any grammar, spelling, or punctuation errors and correct them.

Pace Yourself

It’s very easy to think you can push through your pain, but then you may end up pushing yourself too hard. It can be so incredibly tempting to “boom and bust”, this, however, can cause more harm than good, especially to your health. For the good of your health and grades, try not to take on too much work at once.

While attending University is definitely a struggle, I absolutely think it’s worth it. It gives me a sense of purpose that I may not have otherwise, and a chance to socialise and expand my knowledge. I hope these tips are useful to any students with chronic illness, and I wish you all the best with your studies.

About The Author

June 17, 2019June 10, 2019

Surviving Cancer

I grew up knowing that my dad had skin cancer in his early twenties and so I knew it was a chance for me. Cancer “runs in the family” on both sides. There has been lung cancer, ovarian cancer, uterine cancer, breast cancer, skin cancer and a couple of others that run in the family as well (as far as I know and some I have guessed on). I wanted to get checked for skin cancer in my twenties and thought that it wouldn’t happen to me. I had finished with 9 surgeries because of my car accident and was learning to function with how my body was and was just coming to terms with how I was feeling.

The Beginning

I went into the dermatologist just wanting to have a go-over and for him to say “you’re good to go!” That was not how it went, he looked at a couple of spots and then informed me that he was going to take 4 spots for biopsy and I would hear back in a couple of days. I don’t remember the exact date that I got the call, but I was told that they had found precancerous spots that needed to be removed before they turned cancerous. I had to go back in on August 30, 2012 to have two of the spots completely removed.

The Procedure

The day I went in, I thought that it would just be simple and quick to get the rest of the cells. When the dermatologist removed the spot on my head, it was weird and horrible to hear through my skull the cutting and stitching. What they don’t tell you when they are making a cut on your scalp that even if it is numb, you will hear the hairs being cut. Not heard through your ears, but through the bone conduction in your skull. The surgery for removing the spot from my head was as long as I expected it to be, but the surgery on my right breast took longer than I had thought it should have taken.

My doctor was great at not showing when he noticed something going on when he was removing that spot of precancerous skin cancer. They had to do 3 layers of stitches to close that one up and I remember the nurse commenting that it was deeper than she had thought it would be and the doctor just stayed quiet. I had thought nothing of it at first and was just glad when it was done and I got to go home to rest and recover.

Getting The Phone Call

A few days later I got the call that they were successful in getting all of the cancer out and that they were able to get the breast cancer completely as well. My heart stopped with that phone call, I was told it was precancerous and that it was just skin cancer. I asked for clarification because I assumed that I had heard wrong with what the nurse had said on the phone. She clarified that between when they biopsied and when they did the surgery to remove both spots it had gone from precancerous to cancerous and was still changing when they removed the spots.

She also explained that when the doctor was removing the skin cancer spot on my right breast, that as he got to the bottom of it he came across the top of something which turned out to be a lump. He went ahead and removed the whole lump as well and had to stitch it up. They had to do 3 layers of deep stitching and then the final top layer of stitches. The nurse said that lump was sent in and was determined to be breast cancer.

Around the time I had gotten the call I was about to call in because my incision on my breast was getting inflamed and hurting worse and I was trying to make an appointment to get in to see the doctor about that. I was able to get in and was worried about the incision spot and that I had some hair fall out near that incision on my scalp as well. The doctor took a swab of the spot and ended up having to cut all the layers of stitches out (what was left of it) because the infection was just eating them away.

They had found that it was staph and the doctor didn’t dare stitch it up again. I had to pack it to let it heal from the inside out. That was the most painful experience I ever had to inflict upon myself since the bandage had to be changed out daily. My spot on my head healed fairly quickly and I have a permanent bald spot the size of my thumbprint somewhat hidden by my hair.

Healing

My spot on my breast was slowly healing and seemed to be taking forever. Every time it was close to being completely healed, it would open up again and I would have to start over on packing it until it would almost close up. From August 30^th to February I went through this almost completely healed to having to take care of it. I finally had another appointment with my doctor for another follow up (during the time between August and February I had about 6 appointments for follow up) I had mentioned that it kept doing this back and forth.

The doctor stated that it could be one of two things, one was that the infection turned to gangrene or that cancer had come back. The quickest way to find out was that he had prescribed a topical ointment with steroids and antibiotics in it, I had to change the dressing to my wound 3 times a day with this ointment and be back in a week for a follow-up.

If the wound did not improve enough then it would be cancer and he stated that it would be assumed to be breast cancer. I was told that if it was cancer that they would have to remove the breast (mastectomy surgery) and I needed to decide if I wanted only that one gone or to have a double mastectomy. I went home and took care of my wound, but was afraid of looking at it too much and freak out if it was healing enough or not.

A week later I went back into the doctor and he looked at my wound and changed the dressing, not saying much as he was looking at it and re-packing it for me. He stated that it has healed enough to know it is not cancer and just a gangrene infection. I was so relieved but apprehensive at the same time when he told me this information. It had taken another 3 full months for it to finally heal and stay closed.

The Outcome

I had a few more follow up appointments to check on the progress and then at my 1 year anniversary of being cancer free he told me that I “graduated” to appointments being only twice a year instead of every two months. I was so overjoyed that there was no cancer that had shown up in that year. After my 2 year anniversary I “graduated” to only needing to go in once a year. I am approaching my 6 year anniversary with excitement that I made it past the 5-year mark.

1 year anniversary of being cancer free he told me that I “graduated” to appointments being only twice a year instead of every two months

After 5 years of being cancer free, your chances of getting cancer back goes down significantly and is a truly celebrated mark to get to in the cancer world. I honestly never thought that I would make it to the 5-year mark cancer free, but I did it! My story is not like the typical stories that you hear a lot about and I am grateful that I did not need to do the chemotherapy or radiation treatments on top of the surgeries. I am even more grateful that I got to have my children and that I am around to see them grow up. I will never forget my cancer scare and how it changed me forever.

About The Author

June 9, 2018June 8, 2018

What It’s Like to Have Anxiety and Cerebral Palsy

When I think of the word anxiety, it brings up the feelings of worry and stress that my cerebral palsy causes in my everyday life.

It’s not that I want to have anxiety or that I like the feeling of having it, it’s just the simplest things can trigger me. I noticed the first thing that triggers me to have anxiety attacks is when I can’t physically be a part of something because of the disability my cerebral palsy causes me.

“…the simplest things can trigger me.”

For example, when I was growing up and attending public school, going to physical education class used to be my least favorite class. If the teacher had something that I couldn’t be a part of, I would have sit on the sidelines and watch, wishing I could be like the rest of the world.

I still feel the same way at times, even as an adult. But I would say what triggers my anxiety now as an adult is not being able to get up and go like a “normal” person would. I become overwhelmed with the everyday stresses of life.

“…what triggers my anxiety now as an adult is not being able to get up and go like a ‘normal’ person would.”

Having cerebral palsy can make me feel very overwhelmed with life altogether. Going to doctor’s appointments can become very stressful and cause me to have an anxiety attack because of the outcome of the doctor’s finding of my condition.

When it comes to my anxiety, it feels like the world is spinning and nothing I do could stop me from having an attack. But it also feels like I’m trapped in my own body because I’m stuck in my space that I can’t get out of twenty-four seven.

“…it feels like the world is spinning and nothing I do could stop me from having an attack…”

It’s so hard just to keep going at times, especially when I look at people my age that don’t have anything wrong with them according to society.

Dealing with the pain also causes anxiety for me as well. My mind goes on a roller coaster ride as my legs begin to hurt and I think to myself, “Oh, here we go again.” Along with that it also feels like I’m the gingerbread man in the board game when it gets stuck.

But the thing that helps it all, aside from having to sometimes take medication for it, is the support of my family and my faith in God as my savior because I know with Him by my side I’ll be okay.

About the Author:

Tylia Flores is a 22-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. In doing so, she hopes to help others with disabilities realize that they, too, have the potential to make their dreams come true.

April 19, 2018April 19, 2018

How Marya Found Grace Through Chronic Illness

I’ve been diagnosed with cervical dystonia, a neurological movement disorder, since 2010. As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life including limiting my driving abilities, my capacity to work and to be able to take my son with special needs, to some of the extracurricular things I’d like to see him be able to participate in.

“As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life.”

I’ve been diagnosed with Irritable Bowel Syndrome for years and figured that every quirky GI symptom I’ve had was just the IBS acting up. But for the past few months the more distressing symptoms were intensifying and I was noting more blood in the toilet when I went to the bathroom.

As a special needs mom of three, one of whom is a heart patient, I’m pretty good at doing research. So naturally, I started Googling “Inflammatory Bowel Disease” and started to wonder if that was what was going on and scaring the daylights out of myself in the process.

Finally, I went to the gastro in January, who ordered a colonoscopy. I procrastinated about getting that procedure done for a few months and finally got that done in April of this year.

Well.

For some reason the prep didn’t seem to be going as well as previous times. When I came out of the procedure, the doctor told me that the prep was indeed poor, and that I had colitis but they’d have to do biopsies in order to confirm what type it was. The doctor didn’t think anything major like cancer was going on.

Afterwards we stopped for breakfast at one of our favorite places just like we’d done in the past. I ordered some food, but then I began feeling horribly nauseous and couldn’t eat. The nausea became overwhelming and then I lost consciousness in the restaurant in front of my husband. A retired law enforcement officer, he started trying to give me mouth to mouth right away. Luckily there were some medical personnel from the local hospital there too and they called an ambulance.

“I lost consciousness in the restaurant in front of my husband […] he started trying to give me mouth to mouth right away.”

I spent several hours on ER having vitals checked as well as an EKG. I was super nauseous for several hours and couldn’t go to the bathroom by myself for awhile. My vitals all checked out as normal, but every time I tried to stand up the nausea came back. They gave me some meds or that and when it finally seemed to be under control, I went home to rest.

The doctor told me that it didn’t matter what I ate, but again… special needs mom that I am, I question standard medical advice. Also, I’m pretty holistically-minded about everything. I knew about the Gaps diet and was able to source a few things immediately. Something about being told my colon was “oozing” was very motivating to get started right away!

I’ve already begun to see some slow improvement but I understand that this is a major lifestyle change. I’d already made lots of changes over the last couple of years including a 40 pound weight loss and a food plan that was comfortable for me. But now I’m having to make more changes. I miss my morning oatmeal, coffee, and other creature comforts that help to keep me sane.

“30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me.”

Checking in with my mindset about everything, although I complain about the food restrictions on the Gaps diet, I think I’ve handled it all relatively well. 30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me. For me this looks like daily devotions, meditation, yoga, and writing. A little dark humor and sarcasm goes a long way too. Unfortunately that list also used to include a good cup of coffee, but I guess that’s out for now until I’m more stable.

I’ve learned that my life’s journey is a marathon, not a sprint. Sometimes there’s going to be awful days. Situations that I’m totally powerless over. At times like these it’s perfectly okay to lay low and focus on what I need to.

At this point I haven’t had the follow up with the doctor or got the lab results back. Honestly, I am a little anxious about it after doing some research and seeing the the possible treatment options are, how invasive they might be, how much is this going to cost and how cooperative will my insurance company be?

“I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.”

But believe it or not, it isn’t consuming me like it might have at one time. I stay busy with my blog, my dogs and my self-care practices in order to stay grounded. I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.

Marya Mesa is a special needs mother who writes at www.ChronicMomLife.com about chronically sober living with faith, intention, & self care.

March 26, 2018July 15, 2019

Chronic Illness: Does It Make Me Less of A Woman?

Have you ever asked this question to yourself?

Or maybe its counterparts: “Am I enough?” or “Do I have what it takes?”

“Am I enough?” … “Do I have what it takes?”

Well, who can blame you?

You can’t stay out long without worrying about your unpredictable and embarrassing symptoms that can come on anytime.

You’ve canceled multiple events, projects, trips and dates because of your chronic back pain, migraine, brain fog or other chronic symptoms you cannot identify anymore.

Or, you gave up that promotion because you need to rest and stay home to hopefully (fingers-crossed) recover.

Heck, you can’t even clean up your own room and shower on your bad days!

For most of these things, I have learned to live with and without through the years since I became a spoonie. But there is still this one thing that makes me cringe and keeps me awake at night.

“I have learned to live with and without through the years since I became a spoonie. But there is still this one thing that makes me cringe and keeps me awake at night.”

The Most Popular Pageant Question

“What is the essence of being a woman?”

Let that question hang for a moment there and let’s think about it.

While I haven’t joined any beauty pageant (nor will I ever join one), I’ve felt compelled to answer that question as I got older.

Most especially right after every major flare-up.

And then there are those follow-up questions that I often hear from family and friends that take my self-worth to a nosedive.

“How can you handle the stress of being a wife and a mother if you’re like that?

“Can your body bear and give birth to a child?”

“You get dizzy often. How can you survive the sleepless nights of a new mother plus manage the household?

I love kids and I’d love to have my own.

I long to care for and love a lifetime partner.

I’m not going to lie to you. Motherhood has been one of my dreams as a woman.

I thought it was a big part of my essence.

So, what if…

… my condition won’t allow me to bear and raise a child, do most of the house chores, homeschool, and get a regular job?

Will I be less of a woman? Will I not live up to the true essence of a woman?

Ms. Universe 1994 Sushmita Sen said that, “Just being a woman is God’s gift that all of us must appreciate. The origin of a child is a mother, and is a woman. She shows a man what sharing, caring and loving is all about. That is the essence of a woman.”

That was beautiful.

A woman does not have to be a mother or a wife to share, care, and love.

Granted, Sushmita is not a spoonie like you and me (not that I know of). And I know that it’s hard to think of your real essence when you wake up feeling like you were hit by a truck.

So, I looked for…

3 Real and Badass Women with Chronic Illness

Venus Williams

Williams is one of the world’s best woman tennis players. In 2011, she disclosed that she was diagnosed with the incurable and difficult to diagnose Sjögren’s Syndrome. It’s an autoimmune condition in which the immune system mistakenly attacks the glands that make tears and saliva. It can also target the joints, thyroid, kidneys, liver, lungs, skin and nerves.

After adopting a new exercise regimen and a vegan diet, she started to recover and able to play again. In fact, she won her first tennis title in two years in 2014 in Dubai. Win or lose, she continued to play.

“I think we all dream of winning tournaments but we don’t think of being more of a force in the game of tennis other than for ourselves. For me that would be the best legacy”, she told CNN.

Jen Snyder

I personally know Jen as she is one of my awesome online business mentors. She is a wife and a mom to the “best 3 crazies” (her words, not mine). She has an online business which “helps women build and grow their online business, so they can have the flexibility to do the work they love while spending time with the people they love.”

When she was 25 years old, she was diagnosed with Lupus. Later on, she discovered she also had Raynaud’s, Sjögren’s Syndrome, and Endometriosis.

Her best piece of advice for anyone living with chronic illness and trying to run a business?

“Listen to your body! If your body is saying rest, rest! Don’t overdo it so you end up in the hospital or worse. Remember we aren’t performing brain surgery or creating oxygen. Our businesses and our missions are important, but we are too!” – Jen

“Listen to your body! If your body is saying rest, rest!”

Kris Carr

Kris is the subject and director of the award-winning documentary film “Crazy Sexy Cancer” which was about her transformation and health journey through cancer. On Valentine’s Day in 2003, she was diagnosed with a rare and incurable cancer.

She changed her diet and lifestyle and discovered that while she cannot be cured, she could still be healthy and feel better.

She has written 5 best-selling books and created health and wellness programs that inspire, transform and heal a lot of women.

Kris says, “If I can pull that off, just imagine what YOU can do.”

Celebrate What You Can Do

There is no shame in pulling the covers over your head and canceling your appointments to rest and take care of yourself.

No shame in your physical limitations.

You may miss those things you used to do. I do, too.

But is it possible you may be taking the things you can still do for granted?

I believe that you have a purpose. Every single day, you are being equipped to fulfill it. There is no one else who can take your place to do it.

What’s Next?

Close your eyes and take 3 deep and slow breaths.

Now, think of the things you can still do.

In the comments, share one of them by completing this sentence:

I can ___________________ and I’m grateful for it.

Lastly, this goes out to you and to the woman in the mirror:

Your essence is within you and no one can take it away from you.

Chronic illness does not make you less of a woman.

Mary is a thriving spoonie, a health blogger, an online solopreneur and a natural healing advocate. Despite chronic illness, she believes spoonies are valuable, strong and capable to make a difference in our society. She is on a mission to help women with chronic illness thrive by sharing her own experiences, fellow spoonies’ success stories, tools, programs and tips that focus on real food. Join her in this journey here.

March 23, 2018March 23, 2018

In The Middle Of Cancer: How Cancer Effects & Shapes an Entire Family

A year after my father’s diagnosis of prostate cancer, my family and I have learned that the saying, “one day at a time” is more than a simple saying, but a way of life when you’re dealing with such a sneaky illness like cancer. My family and I aren’t strangers to overcoming obstacles but when we got the news about my dad having cancer my mom, sister, and myself all wondered how did we get here? Is this really happening? And what do we do now?

“…when we got the news about my dad having cancer my mom, sister, and myself all wondered how did we get here? Is this really happening? And what do we do now?”

Once the initial shock wore off, we had a game plan. We eventually started taking each day as they came. And soon we realized that all things considered we were very fortunate. To have had (and to still have) the outpour of love and support from friends and family means so much. We realize now that family doesn’t necessarily have to mean you share the same blood, but you can share family in spirit and in the heart.

While cancer will always be something we contend with, it’s comforting to know we won’t be doing it alone. I have noticed my dad has changed some since his diagnosis; he is more reflective and reminisces a lot. Music also has played a big part in our journey. When my dad first started chemo, my sister started a chemo countdown where he wore his favorite metal and rock band t-shirts to his chemo appointments, then talking to the artists via Instagram and Twitter. Does music heal? Maybe not from the scientific standpoint. But it does help, not only the person going through it, but it can also help soothe and forget your issues for just a little while.

“I have noticed my dad has changed some since his diagnosis; he is more reflective and reminisces a lot.”

I also believe a positive attitude is everything. If you believe you can, you will. It’s important to remember too, that putting on a brave face also means being real about your dealing with. If you’re pissed, be pissed. If you want to scream or cry then do just that. I have done all of the above.

When you’re faced with something as scary as cancer, it can teach you very quickly what is important. I also know that we could have it much worse than we do. I know for me that what I used to think of as a big deal isn’t. And that I do my best now not to take for granted any and all chances that I am given to tell those how much they mean to me, and how much I truly love them.

“…it feels like we’re walking on this surreal tightrope. Where are we balancing between keeping a normal routine? We’re holding our breath once more with the next doctor appointment.”

For my family and me, it feels like we’re walking on this surreal tightrope. Where are we balancing between keeping a normal routine? We’re holding our breath once more with the next doctor appointment. It’s in these moments where I turn to music once again. And one song I leaned toward to the most during the beginning of this was a song by one of my favorite bands called, Jonathan Jackson + Enation. The title of the song is “Anthem For The Apocalypse.” “Would you look me in the eye? You have nothing to fear the storm will clear. I will hold you in the night.” It just so happens that on the day that this album came out on, July 14th, 2016, that was the day my dad had his first chemo session.

I took that as a sign that everything would be okay. This journey will always be one my family and I will always be on. Cancer will always be a close advisory for us. I see cancer now as the unwanted guest we can’t get rid of. But if that’s the price my family and I have to pay to still have my dad then, we can learn to live with cancer.

I guess that’s the in-between of living with cancer. Having to deal with it, manage it in a way where it’s not the main focus in your life, but you still know it’s there. It will always be there for us; for my dad.

In other words stay on top of treating it, but making sure it doesn’t topple you in the process.

“I see cancer now as the unwanted guest we can’t get rid of. But if that’s the price my family and I have to pay to still have my dad then, we can learn to live with cancer.”

While cancer does bring a lot of uncertainty with it, there is one thing I am certain of and that is cancer has chosen one tough family to mess with. And we will never surrender to it. We are ready to fight with everything we have in the years to come. Cancer has nothing on us. Adversity and fighting against unbelievable odds are what my family and I do best.

We don’t like it, but we learn to live with cancer in the best way possible. And we do what we need to deal with it at that moment. And believe me, there are plenty of moments. We learn to lean our strength as a family and remember that tough moments in the journey of cancer are part of the deal. If cancer has taught me anything is that when you find yourself in the middle of a pile of crap, you push through it. Because that is only part of the journey and not the entire journey.

Jessica is the founder/writer of the blog, “The Abler.” She is also the host of her own podcast, “The Many Faces Of The Abled.” She is a passionate disability activist. You can find her blog at https://seetheabled.blogspot.com.

March 19, 2018June 21, 2019

You Don’t Die by Suicide

Suicide prevention, awareness, and the continuing care of survivors is dear to my heart. I am a suicide survivor.

At a very low point in my marriage, while battling back from cancer surgery, I lost all my hope, all feeling of worthiness to breathe air, and believed I was a burden to society who had completely failed as a mother. Eventually it got to the point of lining up 15 or more prescription bottles and emptied them in to my stomach with a liter of Jack Daniels.

“I lost all my hope, all feeling of worthiness to breathe air, and believed I was a burden to society…”

I never lost consciousness, and didn’t even get sleepy. Nope, my OCD kicked in and I cleaned the house from top to bottom. My (now ex-) husband’s response was to demand what I was trying to do to him. The responses from my family and minister were no better. Filled with blame, shame, and accusations of lack of faith, I had nowhere to turn for help once I was released from the 24 hour hold. None of the health professions hooked me up with outside support. I was just put back into the same situation, the same nightmare of abuse and trying to be worthy of my children.

“Filled with blame, shame, and accusations of lack of faith, I had nowhere to turn for help.”

Looking back, there were so many warning signs. It’s amazing how well I avoided recognizing my spiral into hopelessness. The abuse I lived with daily throughout my marriage, including threats of not waking up in the morning, played a large part in my hopelessness. My background with depression started in middle school, as well as constant pain from undiagnosed diseases, and daily bullying both at home and at school added to my struggles.

Hopelessness is what a person who commits suicide dies from — the bone deep feeling of aloneness. The feeling your loved ones would be better off without you around is what drives most suicide attempts. Depression, self loathing, hateful inner dialogues, and abuse all contribute to hopelessness.

“Hopelessness is what a person who commits suicide dies from — the bone deep feeling of aloneness.”

Suicide isn’t attention seeking. Suicide isn’t a cry for help. Suicide is the result of hopelessness — of a soul dying.

In a study done by NIH covering the 2001-2015 period, rural counties consistently had higher suicide rates than metropolitan counties. The study also concluded suicide is the tenth leading cause of death in the United States. There were more than half a million suicides during the study period.

“…suicide is the tenth leading cause of death in the United States.”

According to the Veterans’ Administration, recent statistical studies show that rates of veteran suicide are much higher than previously thought, as much as five to eight thousand a year or about 22 a day. PTSD, depression, and lack of mental care follow up after discharge all play a part in veteran suicide rates. Vets finally got some hope of the help they need when President Trump signed an executive order to provide more benefits to service members transitioning from the military to civilian life in an effort to decrease veteran suicides on January 9, 2018.

Older veterans face a higher risk of suicide, the data showed. In 2014, about 65 percent of veterans who died from suicide were 50 years or older.

Warning signs for suicide, according to suicide.org include:

Appearing depressed or sad most of the time. (Untreated depression is the number one cause for suicide.)
Talking or writing about death or suicide.
Withdrawing from family and friends.
Feeling hopeless.
Feeling helpless.
Feeling strong anger or rage.
Feeling trapped — like there is no way out of a situation.
Experiencing dramatic mood changes.
Abusing drugs or alcohol.
Exhibiting a change in personality.
Acting impulsively.
Losing interest in most activities.
Experiencing a change in sleeping habits.
Experiencing a change in eating habits.
Losing interest in most activities.
Performing poorly at work or in school.
Giving away prized possessions.
Writing a will.
Feeling excessive guilt or shame.
Acting recklessly.

“You never know whose life you might save!”

PLEASE watch those around you. You never know whose life you might save! Tell the people you care about how you feel. Talk to your children and their friends openly and let them know you are someone safe to talk to about anything. If you see someone hurting, don’t ignore it — ask about how they are doing and show you really care. Watch people’s body language when they talk. Look for signs of discomfort like lowered eyes, crossed arms, or fidgeting when you are talking with someone.

Most of all, talk to listen and not to answer.

Hey y’all, I’m Wanda and I’m a Spoonie in my late 40s. I have several chronic illnesses I battle daily. I’ve raised two beautiful girls and have a wonderful service dog named Tucker. It is my hope to have shown and continue to show the world a face of chronic illness who chooses to become BETTER instead of BITTER.