I Wish ‘Feeling Better’ Was Permanent

Lisa Weber avatar

by Lisa Weber |

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Cradled in my husband’s arms is one of my favorite places to be. His 6-foot-2 frame engulfs me in a blanket of warmth and safety. When I’m in pain, his cuddles calm me like a weighted blanket.

On rare occasions, I have the opposite of a flare-up: I’m sometimes gifted with days when I have limited discomfort and fatigue. Besides my shortness of breath, I almost feel as if I’m cured. I get to enjoy those days acting like my old self — embarrassingly silly and energetic.

On one particular morning, after a cluster of good days, I woke up wrapped in Ross’ arms. I closed my eyes to take in as much of the moment as I could; cuddles are even more magical when I feel comfortable in my body. I wanted that feeling of peace and stillness to never end. In a soft voice, Ross whispered in my ear, “I’m so happy you’re feeling better.”

Feeling better, but not free from disease

His words came crushing down on me like an anvil in an old cartoon. The happiness in his voice strangled my heart. Even in a moment of comfort and calm, I was reminded that scleroderma is entangled in every part of my life, including my marriage. The unfairness of this disease affects the “normal” parts of my life. “Feeling better” is so impermanent.

I’m literally tearing up again even after writing those words. That simple, innocent sentence bears an incredible weight that I wish no one had to carry. Despite my best efforts and the best doctors, I’m not always the person he chose to marry: full-of-life Lisa.

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Before my illness began, we used to spontaneously hop in the car and drive aimlessly until we found a city to explore. Being worry- and pain-free was exhilarating. It felt like nothing could stop us. We even had a quirky little saying, “Lisa and Ross against the world!”

When I do have good days, I’m able to clumsily dance around the kitchen, make Ross laugh, and embarrass my teenage girls singing ’90s rap songs. For a short time, we all get to forget that I have bad days. We get to forget about scleroderma.

Sadness can be difficult to manage

I know these wonderful days are a gift not everyone is lucky enough to receive. I certainly don’t take them for granted. But it’s hard not to be saddened by the reminder that my illness is not only destroying my body, but also robs my loved ones of a disease-free life.

Children should not have to worry because their mother has three doctor appointments every week or random hospital stays each year. Husbands should not have to hold their wives up when their coughing fits threaten a blackout. Families should not have to cancel plans routinely because Mommy can’t make it out of bed.

I want every day to be a good day. None of us deserves a life with an incurable disease.

But I cannot spend my time dwelling on the ways it affects all of us negatively. It simply won’t make life any better. During that moment of cuddling, when I was being crushed with sadness, I had a choice to make. I could continue to feel sad for us, or I could let that feeling go.

I choose joy

Emotions are so hard to navigate when your disease is a roller coaster, and I need a strong mind to live with a sick body. I’m constantly training my brain to pivot and adjust to my ever-changing needs. When I’m living through painful or terrifying experiences, I force myself to focus on the future. Knowing it will pass helps me stay grounded and fight through it.

But when I’m happy, I have to force myself to stay in the present so it doesn’t pass me by too quickly — to embrace joy whenever I can, because every smile is worth the battle.

Sickness is not a choice, but your feelings are

I hope no one living with a chronic illness forgets to try to make the best of every beautiful moment, and to remember not to blame themselves, because being sick is not a choice. Most importantly, I hope everyone remembers that a sick body can’t control our feelings if we refuse to let it happen.


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.

Comments

N. Forcier avatar

N. Forcier

Lisa, everything you wrote in your article is so true! I try to continue my life as if I wasn’t sick. I have rearrange my life to train every day, and use meditating apps to breath deeply and recenter. Training your brain to keep a strong mind is key, in as much as keeping good health habits (physical activities, good nutrition, getting enough sleep, avoiding stress-causing elements, etc.). It takes a lot of discipline, but it is within your control.

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Meri Logan avatar

Meri Logan

Your story except for the kids is the exactness of mine. Thoughts and all. I cook for my husband all the time. I sew and I built furniture. And pretty good at it all. I'm turning 70 this year and I stopped working 4 years ago. This disease has taken away from my looks that I intented to have all the way into an old lady like my mom. I head full of beautiful hair has turned into now a trip to great clips for a #5 cut with the clippers all over. Most of time my day consists of a trip to the P.O. to mail stuff Ive made my sister. And a trip to buy grocery. Some days roll around like you said where I dont even feel like I'm sick. But that day will come evidentually where I am throw down and put in my place. At least once a week. So sad to have to put it that way but I need the freedom to call it what I need to so people not be misled that I am not playing.
Overall....I still love life and still hope that whenever it ends it will be painless. I'm not promoting pain pills but I do take them and I could not have some of those functional days where life is good if I didn't take them.

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Erena Bruce avatar

Erena Bruce

Kia Ora Lisa (may you be well a greeting from New Zealand, Oceania
Like you I have two children 11 and 14 years. my husband and I decided to commit to parenting later in life so by 40 I had my first. Therefore we have before kids life and after kids. We did live life to fullest pushing boundaries physically, mentally, financially and with family (we all lived so far apart). Now life is a different adventure.
at times I cannot be sure if the pain I feel, the fatigue is really age related or scleroderma (systemic).
What I do know is in the last 3 1/2 years I have been fortunate enough to participate more in my children's sports, interact more with the children I work with (Early Childhood, 2 days a week). I am so so so grateful as there is no certainty when that may no longer be reality. Every year in reflection my body has been able to achieve more actively.
If there is an upside to the Covid change its been the change in routine and constant demand of keeping on top of everyone's timetable. Having down time allows the stress levels to manage and monitoring myself for triggers, also being conscious of physio work is work, and all the other jobs like house tidy, wardrobe clean outs, fridge clean outs, groceries, appointments its all work and needs to be factored into my day. Probably watching Netflix not always the ideal way to have down time....but for now it works.
I do think it is soo soo soo important to live the moments without over thinking it, feel the energy both ups and times when power naps are indeed a go. What ever happens there is something bigger than us, something we have no control over, its not bad, its not good...its different and it is what it is....Keep Well Lisa

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shellie young avatar

shellie young

Hi Lisa

I enjoy your articles so much. I feel less alone in this SSD world.
Your before and after is so familiar although my disease only gave us angel babies so we don’t have children. The pain of losing those babies is … well as bad as the pain of this disease can get to me.
Thank you for your understanding thoughtfulness and honesty when writing your articles. I wish upon you many more good days to dance and be goofy. All my best Shellie

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