Do you live with a chronic illness? This is my personal account of my life with a chronic disorder.
Do you have an uninvited guest in your life?
One who has stayed too long?
I have one who simply refuses to pack up and go home no matter what I do.
My unwelcome guest is my chronic condition, Scleroderma, an autoimmune disease.
This post advises you to become a warrior. To challenge the limitations your sickness has imposed on you.
One way to defy the monster eating away at you is to refuse to be its victim. Embrace change, realize your potential and start a killer-new career.
Here’s my story of being stalked by a killer chronic condition and how I refused to submit to his demands that I lie back and wait for death to take me.
I dared to explore a new avenue by starting my own blog.
Table of Contents
THE START OF MY CHRONIC ILLNESS
Mr Chronic Disease sprung his attack in Spring.
The time when the air is perfumed by the pinks of roses, zinnias, petunias, and begonias.
When my weary spirit soars involuntarily.
I was helpless and defenceless as he stalked me.
Life was hectic – new mom busy, high school English teacher hectic – so preoccupied I didn’t notice the stalker waiting in the shadows to attack.
CHRONIC ILLNESS SIGNS
He infiltrated my life furtively. Fatigue pounced and refused to go away no matter how much I rested. His BFF, pain, was my constant companion.
I ignored the silent signs of his attacks explaining them away as being unfit.
But he persisted, becoming more violent in his attacks. The pain intensified.
Standing for long periods, walking up stairs and carrying anything -even my new baby-exhausted me.
DIAGNOSIS, CHRONIC DISEASE – MCTD
Panic at these symptoms, made me go to my doctor.
A routine blood test diagnosed a chronic illness called MIXED CONNECTIVE TISSUE DISEASE, an autoimmune condition in the same family as Lupus.
RELATED: THE ULTIMATE GUIDE TO LIFE WITH A CHRONIC ILLNESS
My body was being invaded by my very own immune system.
Over time, MCTD progressed to Scleroderma.
Of all the people in the whole wide world, it had to be me …….. Why?
TREATMENT
I was put on a cocktail of drugs to suppress my immune system. It was like being a human equation. Every drug had an equal and opposite reaction.
A dreaded steroid strengthened me but ballooned my face.
Another power booster of a drug blackened the skin on my back like chargrilled meat.
The unwanted effect of still another drug was singed legs. Stiff joints meant daily pills to reduce inflammation. Weight loss also entered the equation.
My life was bulldozed almost to the ground leaving me as weak and helpless as a newborn.
I had to do something radical to salvage my life.
RESCUE
My physician informed me there was only one option to rescue me from the abyss I was facing – a 5 -day infusion to be administered in the I.C.U.
By then, I was desperate enough to try anything to start living a normal life.
So I was admitted to the ICU for the infusion. But something went horribly wrong. I had an allergic reaction to the medication and lapsed into a coma.
In total, I spent 5 weeks in the hospital recovering from the rescue plan that failed.
Well, I got the vacation I had yearned for. Except being stuck in a hospital bed in the ICU was not exactly the sunny skies and beautiful beaches of Mauritius.
HOW TO SCORE A WIN IN THE LOSING BATTLE WITH YOUR SICKNESS
A chronic disease robs you of more than your good health. It steals your courage and:
• makes you live daily with the fear of death
• steals your confidence about living life to the full
• erodes your enthusiasm to try new things
• cheats you of your adventurous spirit
• forces you to accept the known and the familiar
So, those of us who are hand-picked to live with a chronic illness, just put one foot in front of the other to survive from one pain- riddled day to the next.
But, to live this way means that YOU entertain the illness as YOUR cruel boss wielding the whip daily.
Why not find a way to defeat it?
In every other way, you possibly can
Nicole, of thisisallgoingon.com who also lives with chronic illness states:
I am NOT my condition – I am NOT my PAIN.
So you are more than your body and the disease.
Rescue yourself from this defeatist victim mode.
Dare to infuse your life with zest and vigor, with spice and flavor. Click To Tweet
Carve a new path for yourself.
This is what I chose to do. No more just existing.
So, I quit my job to reclaim my life.
STARTING A BLOG TO GET MY LIFE BACK
I needed a challenge, to be actively engaged and motivated in spite of being sick.
Prowling Google, I discovered BLOGGING. Totally foreign to me. But so invigorating.
Days zoomed past as I read and reread blogs about a variety of topics that informed, educated inspired, and entertained me.
Then, I had my lightbulb moment.
I wanted to be part of this exclusive blogging club.
I decided to start my own blog.
My blog has filled me with a sense of purpose.
Yes, the illness is there, part and parcel of my life.
But the physical challenges of living with a chronic illness daily are more bearable now that I have a vision for my life.
RELATED: POWERFUL LESSONS IN COURAGE FROM AWESOME CHRONIC ILLNESS BLOGGERS
Those of us who live with chronic illnesses so rarely talk about them. We hide as if we have a dirty little secret.
But talking about our lives with daily pain can help us move mountains. We can support, encourage and offer help.
It can help us to realize that our illnesses do not define us. We are more than that. Much more.
YOUR TURN
It took a near-death experience to make me take stock of my life and embrace change.
I urge you to risk it.
Take your chronic illness into the ring, knock it out Muhammed Ali - style and live your life to the full. Click To Tweet
Take a cue from this famous poem:
Two roads diverged in a wood, and I-
I took the one less traveled by,
And that has made all the difference.
ROBERT FROST
Do you have a chronic illness? What has been your experience? I would love to hear about your life with a chronic illness.
Share your story in the comments below.
Please take a moment to share this post with your social media followers because I need your help to motivate others to kick their chronic illnesses out the door any way they can.
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I am so glad I found your blog. It is difficult in the world of chronic illness and pain, but when you see other story’s you dont feel as alone in that part of the world. I have also a couple of chronic illnesses the most painful one I do not have a diagnosis for started following traumatic birth of my son 61/2 years back. However, I eventually got back to work as a staff nurse but had to be redeployed elsewhere where I became a sister looking after cancer patients but pain has got me good and proper. Some treatments for pain management offer have been taken off us due to the pandemic they say. I am thinking it will probably be the end of one’s nursing career. Yikes, what will one do?
Hi Rachel So sorry you have chronic illnesses and that you have to cope with daily pain. Be strong. It may end your career but not you. You will find other avenues to enrich your life. It’s a cliche but when one door closes, another better one opens. That is exactly what happened with me.Feel free to reach out anytime for a chat.
I love learning the backstory of your blog and your attitude around your diagnosis. You are so right that your condition doesn’t define you. How you deal with it does and I define you as an amazing strong woman with a lot to offer. Thanks for letting us be a part of your journey and for being such an inspiration.
Thank you
You are an inspiration. After such a difficult bout with illness, you would have been well within your rights to sit and lick your wounds, but you didn’t. You chose to valiantly press on into a new reality, and we, your readers, are better off for it. Thank you for sharing your journey with us.
Thank you
Thank you for this amazing post! I too suffer from several chronic illnesses. They are invisible illnesses, meaning others cannot visibly see the effects. I live in constant daily pain, trials of diabetes and heart disease, as well as Depression and Anxiety. That’s just to name a few. I was forced to retire early from a nursing career that I loved. I’m very blessed to have finally found the blogging community to help me regain somewhat of a more productive and meaningful life. Kudos to you! I love your post and your entire blog!!! Keep up the good work!
Thank you Sharon. I thank God daily that I found out about blogging.The blogging community is so wonderful with their support and really helps me cope on the tough days.
What an amazing story and what courage shines through it in every sentence. I admire you for the energy and persistence you approach your blog with. It is obvious that you will make a success out of it! I feel honored to know you.
Thank you so much Marijke. It’s been an honor getting to see how you challenge life. I am hoping to make it a successful blog. Time will tell.
Wow this was such a scary experience for you and your family. It is wonderful that you have chosen to share your story to help others with similar illnesses. When you hear about another person’s journey, it helps you to not feel so alone on your own journey.
Starting a blog shifted the focus from my health and made me take an active interest in life again.
I have an autoimmune disorder too. It is terrifying. Although I do not have the same autoimmune disorder mine is also in the lupus family. I get why your blog helped you with your autoimmune disorder. Keep going momma you got this!
So sorry you had to go through all this pain but I’m happy you found something to live for again. You’re a warrior!
Thank you, Pearl. I was just trying to make good of a bad situation.
Thank you for your story. I am also fighting chronic pain – fibromyalgia – and it really is a debilitating condition. I do consider myself as a fibro survivor but there are days having to work full-time, where my spirits get down. I am wanting to break into the blogging world to help others with these types of conditions and how to cope – and to hopefully make it my full-time job. I want to be able to spend time with my husband who suffered a stroke 18 months ago. We all have our challenges in life – and through the strength of Jesus, we will get through it. Good luck and keep the posts coming.
Thank you, Melissa. Take a leap and start your blog. There is such a demand in this area as people who have chronic illnesses are hungry for information from fellow spoonies.
Hey Poovanesh,
Thank you for sharing your story of living with a chronic illness. You’re such an inspiration. I too have an uninvited guest living with me. I launched my blog/website in January and love how it provides a sense of purpose and service in my life. Thanks again Poovanesh!
I count my blog as one of my biggest blessings. It has shifted my focus totally from being sick and, like you, has given me a new found vision for my life.
What an amazing description of your struggle – I can’t even imagine the fear that you must have had to face down (are probably still facing down), as your body rebelled against you – and when you had a newborn too. I don’t have a diagnosis for my pain, but one of my deepest fears that I never really talk about is that the diagnosis will be something scary – something even more life changing than the pain.
It is truly inspirational that you’ve been able to find the strength to start your blog – blogging takes courage too. Keep going! You’re doing amazing things 🙂
Thanks, Nicole. Blogging has rescued me. It has been the perfect outlet for me. The tech has been a real challenge but it’s been great to acquire a new skill too.
Beautifully written by one of the most amazing mentors of mine