There Is Always Hope – Pamela’s Spoonie Story

My pain story goes back many years. I remember suffering widespread body pain from my teen years and on – I’m 56 now. Mostly it was mild for many years, but enough that I knew it wasn’t normal. I ached all the time, but back then, I was living a pretty transient lifestyle and it just wasn’t at the forefront of my mind. I finally settled down, had kids, entered and left a couple of relationships, and then met my wonderful husband.

Over the years I’ve had my share of surgeries, including appendix, uterus, then stomach surgery in 2004 for severe gastric reflux disease. In 2007, my body went into overtime with health problems, and I ended up having surgery to remove my left ovary, then my gallbladder and then my right ovary – all happening within a 6-month time frame. Talk about body trauma!

My surgeon also discovered that I had scar tissue covering my bladder and bowels each time he operated and that I’d probably had endometriosis for years without knowing it. It certainly explains a lot of why I had so much pelvic pain over the years.

The List Of Chronic Illnesses Goes On and On

So now, in addition to my Fibromyalgia and Myofascial pain, I live with:

Chronic Pain / Chronic Fatigue Syndrome
Osteoarthritis (in all my major joints)
Forestier’s Disease (aka D.I.S.H., a spinal condition affecting my thoracic spine)
Type 2 Diabetes (on insulin)
Trigeminal Neuralgia
Bipolar Disorder
Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
Bone spurs on fingers on right hand, plus inflamed tendons in right palm
High Cholesterol
Raynaud’s Disease
Hypothyroidism
Brachydactyly Type E (a genetic bone condition I was born with)

Pam In Pain

I’ve been lucky in that I’ve had good family doctors in both cities I’ve lived in (Calgary, AB and now Langford, BC). I was referred to and accepted into outpatient treatment at the Chronic Pain Centre while living in Calgary, and there, I worked with a team including doctors, physiotherapists, a psychologist, and others. We tried several types of injections for the Myofascial trigger points, including Botox, but nothing helped. My Fibromyalgia wasn’t really treated other than putting me on Lyrica first and then Cymbalta, and that’s all the treatment I’ve had for it.

I have been on Disability since 2009 as I can’t sit, stand, lift or carry for more than a few minutes at a time…I’m constantly having to move or shift position to prevent my muscles from stiffening or going into spasm. The doctor who diagnosed my Fibro and Myofascial pain said it’s among the worst he’s ever seen. I’m never pain-free, I’m constantly exhausted because I can’t get into the deep restorative sleep….I’m loopy and dizzy from drugs and as much as I keep a positive attitude, I’m frustrated beyond belief that this is what my life has become.

My body is hypersensitive to many things including the feeling of labels in clothing, loud noise, smells….you name it. I’ve also developed persistent excessive sweating – I can be in a freezing cold area and have goosebumps all over, but I’ll be sweating from my head, arms and chest. So embarrassing and uncomfortable!!

For a period of time, I attended group classes at the Victoria Pain Clinic for relaxation, diet, exercise, etc. and it did help to learn other ways to focus and cope. It also helped to be with people who “get it”. My husband is a saint, and treats me like a princess, but as wonderful as he is, he can’t feel what I feel. Sometimes, the best thing I can do is soak in a hot bathtub and try to focus on other things, but nothing ever makes the pain go away. I pray a lot – my faith in Christ is huge, and I allow myself to be taken care of so I can focus on healing. That was a hard step for me, but a necessary one. I’ve always been the doer, but now…I need to step back and take care of me.

In 2017, I had my right hip replaced because my osteoarthritis was so bad, and there was an impingement as well, which meant the head of the femur wasn’t sitting in the hip socket properly. The surgery took a couple of hours to do, and I was in the hospital for just 2 days before I went home. The nurses had me up and on my feet, the day after surgery and there was actually little pain. My recovery took approximately 6 months and while I’m still using a cane, it’s because I have knee problems on the same side, not because of the hip. My hip feels great and I’m so pleased with the surgery. My left hip will need to be replaced as well, but hopefully not for another year or so.

The Future Is Full Of Hope

This year, I will be facing brain surgery as a result of my Trigeminal Neuralgia. I’ve run out of treatment options as the drugs I take no longer are effective. I’ve even tried Botox for my TN, but without good results, so I’m looking at a surgery called Micro Vascular Decompression to relieve pressure on the Trigeminal Nerve and hopefully it will leave me pain free!

So what have I learned through all of this?

I am stronger than I thought I was, and I’m able to tolerate a lot more than I thought I could
You need a team, or at least one good partner to help you when you live with health issues. For me, it’s my husband Ray. I couldn’t do this alone, but he makes everything better. He believes in me, he helps me physically with things I can’t do, and he never makes me feel like I’m “less than” for not being able to do things because of my physical pain or my fatigue.
Pacing – you need to be able to pace yourself throughout the day in order to live your best life with chronic pain and fatigue. That means letting some things slide in order to accomplish a few other things. For example, Monday may be a day for sweeping and that’s it – dishes have to wait. Or, you do the dishes, but vacuuming gets put off until tomorrow. You need to learn how much energy you have and the best way to use it. If you haven’t read the Spoon Theory, it’s a good example to explain all about energy and how much it takes for us to do everyday ordinary things.
You are enough, just the way you are. Period.
Accept that this is reality but never give up hope for things to improve.

I struggle with a lot of health issues, but my motto is “there is always hope”. It’s the name of my blog as well, where I write about Chronic Pain and Invisible Illness. I keep a positive outlook on life and I know that despite the fact there’s a lot of negative things going on for me health-wise, it could be a whole lot worse as well. I feel blessed overall and I never take things for granted.

About The Author

Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC. She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie.

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.

September 27, 2017April 17, 2018

But You Don’t Look Sick By: Laura Sylvester 

Do not judge a girl 

by what you can see,

She may be fighting for her Life

from an incurable genetic disease.

She could be a girl suffering 

with chronic pain and tiredness, 

Who can’t remembering what it’s like 

to not feel completely broken and helpless.

She could be a girl who is full of hardware,

like screws, rods, and stents,  trying to keep her body together

after a series of unfortunate events.

She could be battling brain damage and trauma 

which has majorly changed her life. 

She could have relearnt how to walk and talk,

see and even read and write.  

She could be living with a brain clot

not knowing when her last breath could be.

Would you believe it if you were told she’s had five lifesaving neurosurgeries? 

She could be living a life full of uncertainty 

not knowing what tomorrow may bring.

It could be a normal day at work

or another admission to a hospital wing.

Even though she may be different 

from what she’s remembered to be,

One thing’s for sure, she hasn’t lost sight 

of her goals and dreams.

People say “but you don’t look sick”, 

those words are very hurtful.

If only they could walk in her shoes 

to see she is in fact disabled and now how fragile. 

Yes, she may be smiling, 

but sometimes it’s just a mask

To cover how she’s really feeling, 

hoping they don’t ask.

Because at times it’s difficult 

for her to face the Truth 

Of her struggles, pain, and limitations,

and the so many things she can no longer do.

So she fights for her health each day 

Tries to bring hope and help inspire 

Others who may be fighting battles too

who have lost their way, purpose and desire.

But if you take a moment  to really look

at that girl who “doesn’t look sick”

You will see her inner strength beyond her smile, 

That Girl You See Is Me.

ABOUT THE AUTHOR:

Laura Sylvester is a 24-year-old petroleum geoscientist and patient advocate for chronic illnesses, especially the Ehlers Danlos Syndromes (EDS). She is from Surrey where she studied for her Masters at Imperial College London. Laura is currently recovering from having 5 lifesaving neurosurgeries this past year resulting in being wheelchair dependent, and having to re-learn how to read, write, and walk again. She  is one of the first EDS patients from the UK who has undergone pioneering brain shunt, brain stent, and multiple spinal surgeries in the USA. Laura  was diagnosed with EDS along with many co-morbidities in 2014 and since then has dedicated herself to being a ‘voice’ for the EDS community via her role as Education Advisor for The Ehlers Danlos Society and sharing her medical journey on her blog:  www.mindbodyeds.me 

June 4, 2017June 4, 2017

Permission to Pout

Anyone who has a chronic illness will tell you that it sucks. Often on the UnChargeables site, the other admins and I post funny memes about the challenges we face. We try to handle our lives with the best attitudes possible. I typically try to “make light” of my limitations.

But the truth is- Chronic Illness isn’t funny. It took the life I wanted away from me. I was supposed to be this powerful, successful medical person…healing and saving the world…..and now at 25 years old I am unable to work or drive.

The independent woman inside me even hates to see those words typed on the screen.

This being said, when chronic illness changes your life does that give us permission to pout?

Sadness is a human emotion. Regret is a natural feeling. Guilt is a constant factor lingering in the minds of the chronically ill.

Is it ever okay to let yourself have a pity party?

Contrary to popular belief, I say yes. (GASP! Yes…I’ll explain why in a moment)

I had one of these pity parties yesterday. I have been battling my usual fun symptoms with my kidney stones and addison’s disease…but somehow developed an active case of the shingles. Yesterday my pain was overwhelming. I was also hungry and just in a bad mood.

I usually try to be one of these “zen warriors.” I try to just swallow the pain and stress and put on a happy face. But I didn’t have the energy or the will to fake a smile.

I let myself cry. I let myself feel all the negative emotions.

I admitted I wasn’t the invincible warrior I try so hard to be.

And then I let it go.

I had a good cry, took a bubble bath and ordered a gluten free pizza.

I gave myself permission to pout.

I think everyone should, once in a while.

Bottling up emotions, grief and pain will only inhibit your health. Feeling emotions is necessary step in healing.

Have the pity party, just don’t attend it every night.

Feel the emotions, then let them go.

To read more from Winslow click here – http://winslowedixon.wordpress.com

March 28, 2017July 15, 2019

The Ultimate Chronic Illness Playlist

Music is one of the most powerful influences in the world today. It has the power to express every single emotion known to man. Below is a comprehensive list of the Ultimate Chronic Illness playlist, perfect for every mood, emotion and situation you might face.

“Music expresses that which cannot be put into words and that which cannot remain silent” -Victor Hugo

When you need a battle cry -Angels Fall, Breaking Benjamin

When you need to appreciate life- Great day to be alive, Travis Tritt

When you need to accept things- Had Enough of this, Lifehouse

When you feel like you’re not getting ahead in life- Peace of Mind, Boston

When you need a happy, whiny song- Bird with a broken wing, Owl City

When you need to mentally party – Pitbull/Akon, Shut it down

When you need a song about a fresh start- A new day, Celine Dion

When you need to be thankful for another day of life- Good To Be Alive, Jason Gray

When you feel like sailing away- Orinoco Flow, Enya

When you need to feel free- Baba O’Riley, The Who

When you need to feel better (Mind over Matter song)- Feeling Alright, Huey Lewis

When you just need to feel like a rockstar- Back in Black, AC/DC

When you need to feel dark and dominant, Toccota and Fugue in D minor, Bach

When you need to fall apart- Pieces, Rob Thomas

When you need to let go- All in, TobyMac

When everyone is driving you crazy- Circus for a Psycho, Skillet

When you need a melancholy anthem- Far from home, Five Finger Death Punch

When things aren’t they way they are supposed to be- The Walk, Imogen Heap

When you just want to drive away- Fast Car, Tracy Chapman

When you need to stand up for yourself- Get off my back, Bryan Adams

When you need some pep in your step- Matthew Wilder, Break my stride

Hopefully this playlist will get you through some rough moments!! Stay strong spoonies!

Want to see more playlists? Click Here

March 9, 2017March 9, 2017

Listening to the Voices

There are a lot of voices that we hear throughout our lives. Voices that will speak words of joy, sadness, humor, encouragement, knowledge, frustration and various other things. We have the choice to decide which voices to listen to.

Recently, I was telling someone in my life about my progress in physical therapy. Since my surgery, I have fought an uphill battle and have struggled to regain motor skills and to walk. I have had some slight success since starting physical therapy. I am able to walk for very short distances now. I hope that within a few months, walking will become a simple task. I poured my heart out to this person. I shared my joy and opened my heart, to which they replied, “You realize this isn’t an accomplishment right? Normal people get up and walk without a second thought. In fact, what’s sad is that you’re so ill now that you even consider being able to walk a few feet an accomplishment. It is not. Walking is normal human function.”

My heart was immediately crushed by their words. All the hours I had spent exercising my weak muscles, fighting back tears, gritting my teeth and pushing through were only to achieve what normal people can do easily. All of the sudden, I felt like I had achieved nothing. I felt small, I felt sick, I felt worthless.

But why? Because I was listening to a voice that spoke negativity.

This person clearly had no understanding of how hard it was for the chronically ill. My little victory meant the world to me. Yes, normal people walk without a second thought but that doesn’t take away from how hard I have strived to live again.

I will absolutely live again. I will walk again. I will get my life back, regardless of what the negative voices may say.

What lesson did I learn from this?

Some people have zero compassion or understanding. They speak words of negativity, hate and anger. These people will say anything to bring another person down.

You do not have to listen to these voices!

Cling to those voices that speak words of life, love and hope. Those are the voices that will cheer you on into your own victory.

No matter what you are facing, don’t let any voices tear you down.

Don’t let the voice in your head become your enemy either.

You are a warrior. You are strong. You can do ANYTHING!

Listen to the good voices and tell the bad ones to SHUT UP!