During Flare-ups, My Scleroderma Body Pauses Life
Messy is the best word I can use to describe a flare-up caused by scleroderma. My home, my thoughts, my life — they all unravel, and it’s messy.
When my body is weak and consumed by aches, I spend a lot of time under blankets. During a flare-up, my muscles become useless, and I can barely handle a walk to the restroom. If I do make it out of bed, it’s only to the couch. The warmth of cuddling myself doesn’t ease the pain, but it does allow my body to heal.
I could go on and on about the disaster that becomes of my house while I’m down for the count. I could also fill up this entire column describing the physical disaster I become as I lie helplessly waiting for the flare to end. But that’s not the dominant mess an autoimmune disease can leave behind.
Living life on pause
One of the worst parts of a flare-up is how I feel like I’m living life stuck on pause.
My kids and husband continue their usual daily routines. They buzz around me as they make their way through each day, while I’m just a spectator. I can’t participate or join in, because my button is stuck on pause.
When they are all out of the house and I’m alone, the projects I had planned stare at me with anger. To-do lists on my calendar get moved to each new tomorrow. Daily chores begin to pile up like mountains that slowly appear to become too steep to conquer.
My plans are placed on hold
A few months ago, I had an exciting idea that I would finally transform my builder-grade entertainment center into a homely masterpiece.
I love building things, so I planned out a faux fireplace and mantle. I’ve always admired mantles filled with family photos and holiday decorations. I carefully drew up the plans and purchased the materials to create the structure.
Now all I can do is stare at this wall from under my sherpa-lined blanket. The painter’s tape I so carefully placed on the wall to mark locations is peeling off. The holes I made to peak in behind the Sheetrock are temporarily covered with cardboard from Amazon boxes.
The project, like myself, is on pause while I wait for this flare-up to pass.
Waiting for it to be over is hard
It’s hard to convince myself it is temporary, because I can only hope that it is. Even when I take control of my pessimistic thoughts, there’s still a fear that lingers of not knowing with certainty how long the flare-up will last. All I can do is rest until my pause is lifted and I can finally tackle the chaotic mess it leaves behind.
If this happens to you, it’s important to make conscious efforts to cheer yourself on. I give myself pep talks. I’ll say things like, “You’re doing so good. Hang in there. It will be over soon.”
I also use this time to study the changing faces of my children and cuddle my fur babies. And I can’t say I don’t enjoy the extra gentle back rubs from my loving husband!
Scleroderma flare-ups are messy. If you can relate, it’s important to be patient with yourself. We must find a way to stay strong mentally and emotionally. We do this so we are ready to join back in and enjoy life moving forward once again when our bodies are ready.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
Terri L Thomas
I am newly diagnosed with Scleroderma. This hit it on the head for me! She described me to a T! Sharing it with my husband so he can better understand what is going on. Thank you!
Hi Terry, I'm so sorry you've been diagnosed with this disease. Make sure you spend time sharing your feelings and symptoms with your loved ones. It's hard for them to understand what they don't know. And remember to encourage them to find outlets too. This disease hurts everyone.
Yes, I feel like I’m letting g so many people down. My children, my family members, my friends. They just can’t understand it. To be honest neither do I. I just hope and pray fir it it to get better. When I have a a few good days or a week or two it is awesome. But just like you, I go back under the blankets! Thanks for you post. I feel less lonely knowing someone else is out there with the same thing. But I certainly don’t wish on you. I only wish for good things for both and all of us!
I can’t figure this disease out. I’ve read and talked to so many doctors. But like Lisa, I feel like I am letting my adult children , family members and friends down. I look okay , so they just don’t understand. I was so alive 2 years ago. I exercised every day, yes 7 days a week. I did kickboxing, cycling, power weight lifting , ignite Pilates etc. fir 42 years. Since my health club closed because of Covid I have lost all interest. I can barely go for a walk. I have lost all my muscle tone and energy. I always said that energy breeds energy. I believe that’s true but I can not do it anymore. I have esophagus Scleroderma and external Scleroderma along with RA. I was fine for a long time. I turned 60 and within 6 months I went down hill. I seriously can’t live like this. I went from 130 lbs to 82 lbs. I can not swallow or eat. What is life without being able to eat. Food is everything! It’s how we socialize and how I love to cook! I do hope there is a cure or treatment. I’m so sick of laying around for days. I had to quit my job by doctors orders. I just want to thrive. I wish you all, only good things. I sound negative but I do have a lot of faith.
I know what scleradoma brings such chronic pain I pray someday we will get a cure I'm 74 and suffer from tumors calcification it is such pain .
I'm so sorry Clara. There are so many battles with scleroderma. Stay strong!
I experience the same. I get so stressed about what I'm not doing and the things that are put off. Surely that lengthens the exacerbation. I am learning to embrace my good times and and love myself through the rough ones. It's only dirty dishes and laundry etc.
You are so right Denise! Keep loving yourself through the tough times !
thank you so much for writing your stories in such an open way. unfortunately they are true, so true for us, life on pause, a perfect way to describe it. You have my highest admiration. I also have scleroderma, Lupus, Severe Raynauds, gerds , crest and drye eyes. Hopeless some days,hopeful on others. My urge to run into my neglegted garden during the day, my wish to wake up one morning : it was all a nightmare, now I am healthy....
pls keep going , virtuell hug to you, M.H.
Hi Margitta, I love your name! So unique! I’m glad you’re doing better now. That gives all of us hope.
Mary J Fletcher
HOPE? Better today and worse for tomorrow? I can't see anything good in my future.
Mary, I'm so sorry you're in a bad place right now. Sometimes you feel hopeless. Don't give up. Keep fighting. Find ways to smile and hold on to little bits of joy. It can and will get better. Believe and stay strong. Motivational podcasts can be very helpful.
I'm sorry your having a bad day.
I have Limited Scleroderma please know you are not alone .I promise you will have a better day.
Oh my goodness! You described my life to a nail head (I too, like building things)! For me, as time goes by, the pauses seem to come more frequent. I’m having to set priorities for my days and energy level. I was going to grow a vegetable garden this year, as I raise enough food for a year. This year I’ll have to skip gardening and canning, but also know that quality of life can still be great if I just slow down and take care of myself.
Thanks for you encouragement and keep dreaming and building!
I also suffer with scleroderma crest syndrome, AVM's of stomach and digestive track, Raynauds, calcification in fingers and toes, fibromyalgia, anemia, congestive heart failure.I live with severe pain that opioids only make my pain bearable. I live basically in my bed or chair under an electric blanket unless at a doctor appointment.Most doctors don't know how to treat this and pass you off to another. I have basically learned to try to treat each symptom with whats available and try not to aggravate painful sores and flareups. Hopefully a treatment will come along soon.
Lisa, I'm so sorry you are suffering terribly. They keep learning new ways to help us. Don't give up hope. The cure we desperately need is coming.
After a long and difficult journey I have finally got a referral to a Specialist Scleroderma Unit and awaiting an appointment. It may be
that I haven’t got Scleroderma but reading your article Lisa and the comments I can understand everything you are all saying. My life feels as if it is rapidly going downhill, all the signs and symptoms are there.
I do feel hopeful that with a diagnosis I will receive the support that is sadly lacking now.
I'm so happy to hear that you can see the specialist soon. That made a big difference for me. Wishing you the best.
I have reynauds disease, i am positive for the lupus coagulant , have antiphospolipid syndrome, which basically overlaps with the lupus antibodies , and now, scleroderma for a year ..my hands feel like stone and sometimes things fall and I have trouble picking them up ... it’s so frustrating.. I also have ulcers on my knuckles & cuts on my fingers caused by the scleroderma
I have good days/bad days .. sometimes I cry in my room cause I feel my life has changed so much because of these autoimmune diseases.. thank god I have a loving husband who helps me greatly and never complains and 2 wonderful children who help out
I also have a very strong faith which keeps me going! I refuse to give up , even on bad days
Lastly,,I have a good support system with my parents actively involved in me and my families life and for that I am very appreciative !!
Nene, thank you for sharing. You sound like an incredibly strong person. We can all learn a lot from your strength. Best wishes to you.
I'm sorry your having a bad day.
I have Limited Scleroderma please know you are not alone .I promise you will have a better day.
Thank you, Robin. I love your words of encouragement. We all need positivity in our lives.
I just want to thank everyone for sharing their stories and information. After what was first diagnosed by a dermatologist for more than 4 months I diagnosed last month by two doctors, including the UAB Kirklin Clinic in Birmingham, with diffuse systemic scleroderma. Needless to say it’s a huge learning curve and I’m trying to educate and inform myself basically on a daily basis. It’s still just settling in.
John, I am so sorry you’ve been diagnosed with scleroderma. This certainly is not an easy disease to navigate alone. We are all here for you. Keep finding ways to stay positive I remember it is an individual disease. That means it will affect everyone differently. You’re going to be okay!
Scleroderma is an insidious disease that most people don't understand (including many doctors I think!). Lisa, thanks for being so honest about how terrible it makes you feel. Your frank admission makes others feel that it's ok to acknowledge their pain. And I'm beginning to think that's half the battle!
Hi Bonnie, this disease is awful and we did not do anything to deserve it. Living with it is hard enough. Don't hide the pain, shine through it. Be open and honest with yourself and others. The right people will support you. I truly feel that if we try to hide what we are going through, we give more power to our illness. Best wishes to you!
The fact that you were even able to find words to describe it is amazing! I try to explain and make others understand and I can't even put into words.
Every weekend I plan to get so much done in my personal life, Each day I plan to tackle tasks for work and most times none of it comes to be because I hurt and I am tired. Then I beat myself up for it. I constantly feel like there are a million balls in the air and I am usually dropping most of them. Always disappointing and letting somebody down.
Thank you for putting how I feel into words.
Chrystie, you did a great job sharing your thoughts in your comment. Sometimes it's easier than others. I love your analogy- I too feel like I'm dropping most of the balls I'm juggling! It is a frustrating feeling. I'm trying to learn how to meditate. There's a documentary on Netflix that teaches you that meditation is learning to be okay with your thoughts. I really need that! Try not to be hard on yourself. This is not an easy disease. Stay strong and keep fighting!
Two weeks ago I ended up in ER with a twisted small intestine and having emergency surgery. I was in hospital for 6 days since my intestines took five days to start working since I also have gastroparesis.
I don’t know if that caused a flare but I just can’t seem to get up and going. I feel useless and like I’m being lazy. I just want to sleep all the time. Barely can eat but trying to stay hydrated.
Mary, you have been through so much! Be patient with yourself while you heal. It will take longer for your body to catch up. You are not lazy! You're a fighter that just survived a huge battle! Best wishes to you!
Hi Lisa. Thank you so much for your words. I was diagnosed 8 weeks ago and all my world turns around.
I'm from Quito- Ecuador and there is not much information. They just said it is a rare desease but I found great doctors that are trying to help. Thank God for my family support and caring. I just can say that to take one day at a time with hope and faith, it's helping to go trhough.
Rosita, the beginning is mentally exhausting. The unknowns and lack of information is difficult. I'm glad you have support. Lean on them! You will find your way. Be patient (with yourself as well). You've got this!
I have not made any comments for a long time because I listened to all of you and my heart breaks. My Crest disease is progressing and there is not much I can do. As all of you know this disease does not forgive and only we can relate to how this changes our lives. But we can only like Lisa said wake up and do what you can and what makes you happy. Not funny but only you and I can relate my insurance company denied me for my secondary disability benefits. They say I can work in hospitality and food service with my 4 amputated fingers and i can be a clerk or insurance clerk and I could be a Greeter. I at first laughed and then cried for 2 days. How could anyone understand how we manage the little things at home and then push and push to get through the day. We all enjoy and cherish the good days and with gods blessing get through the worst days. Needed to share this. My heart is with all of you. Lorraine Jones
Thank you for sharing your thoughtful and important feelings, Lorraine. I wish this disease was all we had to deal with, since it's already too much to handle. Insurance companies and judges just don't understand. This is not a world that is friendly to disbilities like ours. But I do believe it's changing. We just need to keep showing them what is not invisible to us. I'm praying for you!
My prayer back to you Lisa.
Thank you for everyone in our group to tell a story a bad or good one. We are the only small group that has to go through these challenges. I have a thought, how about we all tell a good story about a small thing that made our day great!!! My heart is with all of you. Lorraine Jones
I am going to start with a good day. The weather is getting warmer in North Carolina so sitting in the sunshine as we all know with Raynauds feels great. My disease is starting to affect my feet so just recieved a new pair of sneakers with memory foam that feels great. My little Corgy named BOBO always senses when I do not feel well and has made we laugh when he surrounds me with his stuffed animals and balls. Hope everyone had a small thing today that made them smile. Blessings to all of you,Lorraine
Susan K Wendling
Thank you everyone, as a newly diagnosed scleroderma patient, I appreciate all information. Just so confusing! Looking for something to relieve the skin stiffness, any recommendations appreciated.
Hi Susan, I find so many helpful ideas from reading blogs, columns on here and by joining Facebook support groups. I hope you find relief soon!
Susan K Wendling
Yep, i love furniture painting, etc. but can't seem to find the strength most days. Think I will purchase a mechanics chair so I can sit/and roll around the pieces I want to paint. Maybe that will help.
That sounds like a great idea, Susan! Being creative is the best way to keep pushing through this disease!