Apologies to my loyal readers, friends and family for being out of touch, off line, disconnected. Estranged from everyone, I shut down, closed off my heart and buried hope.
When you suffer from chronic illness, you exist in a parallel universe of pain. A pain that is magnified when so misunderstood by the medical community like in chronic fatigue syndrome, fibromyalgia, environmental illness, Lyme disease and other conditions that are hard to diagnose and even harder to treat.
Awaiting answers we muddle along until flare ups knock us out again and again.
The earth tilts under my feet. My eyes roll back in my head. Shooting pains fire off like missiles in my muscles. Ants crawl under my skin. My stomach cramps. My joints throb. My throat aches. My lungs burn. My vision blurs. My head pounds.
My brain, an overinflated balloon, presses against my skull, like it will burst.
An old athlete, I can cope with physical pain, but enduring the tricks of my mind becomes unbearable. I forget what I just said. Phone numbers, street addresses, friends’ names elude me.
As bad bugs hijack my brain, I stare ahead like a deer in headlights unable to process thoughts. My tongue twists on the phrases that spew out sometimes in French, sometimes English. I repeat myself like a silly parrot, jumbling sentences, confusing words.
Trapped in bed, the walls close in. I reach for my survival kit — a Kindle, laptop, notebook, cell phone, water bottle. I calm my racing heart by counting blessings — family to cherish, food on the table, roof overhead.
Like a human guinea pig, I sign on for another drug trial, relying on an equally desperate Facebook group of strangers, who battle the same misunderstood multi-system inflammatory disease.
When I can muster enough energy to go out, friends will say, « You don’t look sick, » and assume I am cured. All the while the invisible body snatchers eat away at my cells turning my brain to spaghetti, my muscles to mush.
On my worst days I enter the twilight zone of semi-consciousness suspended between life and death.
Don’t let me give up.
Hang on. Another second. Another minute. Another hour. A day. A week. A month. A year. A decade. A lifetime.
Trapped in a body that doesn’t work right, I know I am not alone. Millions suffer from invisible diseases. Do not forsake us. We are doing the best we can. When we say we are too tired/sick/weak to go out, prepare dinner, entertain guests, we are not making up excuses. We aren’t malingers; we are champions battling invisible enemies.
- Commiserate with us.
- Listen.
- Let us repeat the same broken record of despair. Then repeat the same pep talk you gave last time.
- During flare ups, we lose perspective. Remind us of happier times when we were able to participate.
- Make dinner. We won’t be hungry, but coax us to the table.
- Send emails, text messages or make calls. Voices uplift.
- Hold us while we cry.
Click here, listen and be inspired
We are a society of doers until we are sidelined by injury or illness. Then we feel worthless, like dead weight, like burdens.
Remind us always of how much we are loved. And how maybe, just maybe, we inspire you to endure tough times because you look at us and know how hard we are trying.
Real warriors keep fighting.
Day by day.
Minute by minute.
Word by word.
I am back writing and I missed you.
A beautifully written, courageous, and heart wrenching post and an important reminder that we often don’t realize the struggles others are going through so be kind always. You remain my inspiration, Pat. Keep fighting, keep believing, keep writing and keep reaching out to others. You are FIERCE, my warrior sister and you are loved.
You know the depths of my despair and have encouraged me to keep fighting and writing in spite of the obstacles. Thank you for always believing in me and seeing my strength in my times of great weakness. You have helped me endure every crazy symptom and supported me through every wacky treatment. In part, I keep fighting back from every set back cause my sisters won’t let me give up.
Welcome back Pat. We’ve missed you. Your words are so eye-opening and give us a glimpse into the world of chronic illness. They also inspire us and help us not to take life and wellness for granted. Your words teach is to be thankful for every day and every blessing. And you reveal to us the soul of a true warrior.
Thanks Tina for your endless support across the miles. So many, many times you have lifted me up and kept me going through difficult times. Sure wish you still lived just across the border, but so grateful that you and your beautiful family have continued to remain a part of our lives in spite of the distance.
My Dear Pat, You have always been my inspiration. Especially because I understand some of your struggle. We have commiserated many times and I always feel like I can continue the fight of illnesses, pain, depression…because I look to you. You are a strong warrior!
My heart aches for your relief from this black cloud of pain and despair. You are loved by so many. Let that love lift you. Praying for you dear friend.
Oh Joanie. I know how much you have suffered with your own health challenges. Even though we no longer see each other often, I am forever grateful that we shared that crazy triple room in Dunn Barton Hall. That old dorm may no longer be standing, but the foundation of our friendship remains strong. I am sending love and prayers and positive thoughts right back at you in hopes they will lift you up as much as your words have lifted me.
Ah Pat! I was wondering why no blogs! Saddened to hear you’ve been incapacitated. So wonderful to hear from you. Many prayers to see you through are sent your way! XXXOOO
Thanks Sheila. I appreciate your support and always love hearing from you.
Dear Pat. So sorry to hear you’ve had such a difficult time. I agree that it is very hard for most of us to relate unless we’ve faced the same challenge. I can only imagine the courage and resolution it takes for you to wake up and face every day. But it sounds like you do have a good group of friends and loved ones on the ground to help. And rest assured you have lots of online sisters who also send good wishes and love through the cyberworld. ~Kathy
Thanks so much for your kindness Kathy. And also for the reminder to draw on strength of my on-line tribe who lift me with words like you just did today.
So sorry to read this post. You will be in our prayers every day. I am so sorry you have to endure such aweful occurrences. I am hoping that you can find some relief somewhere. Remember friends and family always love you no matter what. I am so happy to read your writings again. Missed you and your writings.
Thanks so much for your support. I am so glad to hear you enjoy my stories. I am happy to be reconnected.
A few weeks ago I checked my friends list to see if you were still on it because I was missing your posts! I should have checked on you.????I’m so sorry you are going through such pain and difficulty. I can relate on a MUCH smaller scale. A back injury at 40 has changed my life in a few big ways and MANY smaller ways. It just ALWAYS THERE. Some days are great but many others are wasted. I too suffer from a lot of inflammation. In the last year I have cut way back on carbs & sugars (which was very difficult) but has helped a lot with bringing down my inflammation. I also use (medically prescribed) CBD oil under my tongue daily which really helps. I try to stretch and walk everyday. Much more than that, is more troublesome than helpful. I too have noticed memory lapses and loss of ambition in the last year. It’s scary for sure. We just have to keep getting up. Keep moving forward. Keep contributing in other ways. I’m amazed by your strength, grace and resilience! Keep writing, I’ve missed you!
Thanks so much for writing Marilyn. Your words lifted me up today. I can emphathise with your back pain, which is never a smaller scale pain. Much like chronic illness bad backs can be interrupt plans, take away mobility and eat away at our spirits from constant pain. I too have a bad back. All of your coping methods are good. I also found CBD oil helpful with alleviating pain and inflammation, but it is illegal in France. Walking and stretching daily is so important. You will be happy to know I have a few posts in the works for how to deal with chronic back pain. I think I have tried everything on the market. ha How did you injure your back? Is it low back? I’ve missed you too and it is good to be reconnected.
What a nightmare. I’m so sorry you are suffering, Pat. Wish I could say something, anything, that might lift the dark cloud of fear and alleviate the suffering. But all I can do is give you a virtual hug with all my heart and good intentions.
When I was a child and young person, I suffered a lot. My body was somehow very skillful in hiding the cause of illness, leading to much head-scratching by medical authorities. For example, when I was 29, my appendix somehow perforated and began leaking. I went for SIX WEEKS without a proper diagnosis…my white blood cell count did not indicate concern. Finally the pain led to exploratory surgery. My appendix was 4 times normal size. Crazy, huh? I so hear what you say. The lack of help is the worst. I will pray that you find relief. Write when you can. Love and hugs to you.
Thanks for your encouragement Lynne. I hope to stay back on line and catch up on the writings of my tribe. I have missed reading you. I may be down, but I am not out. Though my brain has been too muddled many days to complete a coherent sentence, I find hugs of support in others words. Yours always lift me up through the clouds.
You are just so strong, Pat!
It is heartbreaking to read all you have endured.
Love and prayers being sent your way.
Mary Sue Neubauer
Thanks for your support Mary Sue. I hope you have fully recovered from surgery. Sending hugs right back at you.
Oh Pat I was so saddened to learn of what you’re going through. Although I have known about your battles with chronic illness, I could never imagine the life you are describing! You never walk alone – there is so much love and support for you from all over the world!
Be strong and keep shining your light! Your words encourage everyone!
Jean
Thanks Jean. I will visualize your reminder “you never walk alone” and go forward feeling strengthened.
Pat…so sorry you go thru this at times…your true inspiration in keep moving forward…and glad you do that as positive as you can when going thru this! Glad to hear you are hanging in and welcome you back..to your sharing in words! Wish you the best as you get through your days ahead…
Thanks for your encouraging words. I appreciate you taking the time to write.
Welcome back, Pat! I’m so sorry to hear of your agony (though I knew something had to be wrong when you went so long without posting). I have a friend with fibro, and she’s suffered through it all her life. Some days are okay; others, not so. I imagine that’s very like what you’re going through. Hang in there, my friend! This ole world is a better place for having you in it — and I know I’m not the only one who thinks so! xoxo
Thanks Debbie. I have missed being in touch and look forward to following you online. Have you published a book? I understand what your friend is going through. If she is not totally incapacitated, encourage her to walk if she is able. I try to walk as often as my body permits because then at the end of the day when I feel like I accomplished nothing productive, I can say well at least I walked today. Walking is privilege often taken for granted.
You are a true Warrior. Wishing you all the best. Keep up the good fight!
Thanks Dave. I am looking forward to hearing about your ancestral pilgrimage to Europe.
Thanks for sharing.
Thanks so much Colleen.
Sis…..You are not Alone tho you may feel misunderstood. I got your Back forever and Always! Love you ooodles!
Thanks Karey. I feel the love. Always.
Dear Pat, It’s your birthday month, and I remember the happy, giddy times of health, strength, the ease and flow of your graceful limbs. Sadly, it’s been too long since you’ve felt this way. I encourage you to never give up. ( Do you have a club or spa where you can float or move in warm water?….not just a hot tub and find the sun). In responding to your blog, I want to reassure you of your value and worth and the inspiration you are for others. I believe it when your mind loses its focus because the pain is always lurking. . . like a cruel bully, poking prodding, seeking your weakness.
But you are strong. Stand up to that bully and find the sun.
You’ve risen again. You’re here, another year, blessing and being blessed by those who LOVE you.!!
Oh Amy your words brought tears to my eyes in much the same way your cards did back in the day when we were roomies and you drew me inspiring cartoons. It’s hard to imagine there was a time I once played basketball. Those graceful limbs you mention now feel clumsy and leaden, but you know for me movement is life, so I keep putting one foot in front of the other. Thanks for reminding me of a happier, lighter time when my biggest worry defeating Ohio State. I feel your love lifting me up, so bring on the bully I am ready for the fight.
I am so sorry. My heart is with your heart and with the hearts of those who carry you.
Thanks Laurel. I greatly appreciate your support from afar.
Dear Pat,
In the past two years, your mother and I have become friends through Round-To-Its, but I feel as if I had known you longer. I was one of your many readers of your columns in the Gazette. Then through my friend Deb Bley — whose husband was a member of a coffee group along with your dad — I heard about your book celebrating the 40th year of Title IX and its blessing for you. Since I knew you through your columns, I had to buy it and even had the opportunity to hear you speak at the Sterling Library.
I looked briefly at your column on Sunday but decided I’d read it later because I was heading to Rockford that afternoon for early morning spine surgery on Monday. It’s early Tuesday morning, and I just read your blog. You have taught me to be more caring with those who have one of those hidden illnesses like one of my nieces who has fibromyalgia. Also, Pat, I am doing very well following my surgery, which I credit to the many prayers from a local doctor guiding me to a particular spine doctor in Rockford, to my family, church friends, former co-workers, Round-To-It friends, and other friends in general. I want to past that blessing on to you and add your name to my prayer list to you.
I mentioned that I had met your mom through the Round-To-Its. We are also in the book club together, and the first time we met at her house, I mentioned when I had stopped by to pick up the books from your dad. What a warm welcomed I received from her! That continued. I forgot how we started doing things together, but I am grateful for the friendship which has developed. I think part of it is that we live just a few blocks from each other.
May God enwrap you in His healing light and love as you face daily draining illness.
Peg, thank you for your sweet words and support for my writing over the years. I can’t believe that you were doing well enough after spinal surgery to write me a message. Aren’t you in pain? Was it for your low back? Upper back? What kind of surgery? Back pain can be so debilitating and like chronic illness can flare up without warning. I am glad you found a good treatment plan. I know that local doctor that whose guidance you mentioned. He is one of a kind doctor who has given good care to so many in the community including my dad. I called my mom yesterday to tell about your kind words and she said she is so grateful for your friendship and glad that you are living in the neighborhood. I am sorry your niece has fibromyalgia. I will be writing about ways to cope with back pain and fibromyalgia in future posts. In the meantime I hope you are mending nicely, your snow melting slowly and spring arriving soon at your doorstep, so that you can get out for a stroll down the block to visit your neighbor Lenore.
Pat , I know I’ve avoided direct interaction with many people who I’m friends with on Facebook you included, it has been my way Being connected with my past but With conditional interactions , My work as a Funeral Director is perfect camouflage for a man who has lived with PTSD for over 40 years if not longer, not to mention other struggles, But I want to tell you I’m proud of your strength and ability to share your story, you are a warrior, prayers to you and for your continuing battle , Thank You for your inspiring message
Tony, thanks for your kind and uplifting words. As someone who also suffers from another challenging condition, I know you know the depths of despair. May you find the strength to face each new day with grace and continue to offer comfort to others through your work
“We are champions battling invisible enemies” This brought tears to my eyes. This pretty much defines the incorrigible spirit of chronic disease warriors. Keep it going, every second, minute, hour, it is a process and life would be beautiful and you will be healed, my friend.