I’m Not Losing My Mind, but It Sure Feels Like It
The scleroderma fog has struck again! My entire brain is floating inside a haze, and nothing is clear. I’ve been sitting in front of my computer for hours, writing and rewriting this column. I now have four different columns started, but as I write this, none are close to finished. No joke, I’ve written about 5,000 words, but none have formed into anything coherent.
It has been one of those weeks. Just days ago, I asked my husband what time it was. Over and over again. I really did try to stay focused each time he told me. But as soon as he finished speaking, I had absolutely no clue what time it was, and I had to ask again. After repeating himself at least three times, he firmly declared, “You have to do better!” Luckily, he’s easygoing and laughed with me as soon as I started giggling at the craziness of the situation.
Am I losing my mind?
That same day, I was at a home improvement store and asked the store clerk where I could find caulk, which I need to fix up the baseboards in my home before I paint them.
“Aisle 18,” the gentleman said. I thanked him and began walking away. I had only taken two steps when I realized I had no idea what he had just said. I spun around and apologized with a pitiful look on my face and asked the same question again. Like Groundhog Day, he repeated himself and I thanked him once more. After about five steps, I turned back to him and said, “I’m so sorry …” This time, my husband cut me off and shouted, “Aisle 18, Lisa!”
I didn’t laugh that time, but I know the busy employee was grateful I had a personal guide to save him.
My mind simply shuts down
I could go on and on with examples just like these. I playfully refer to it as being short-term crazy. I wish I could say that I’m thinking about too many things at once, but it’s the exact opposite. I’m not thinking at all! Completely blank. I hear things, but they are just sounds without meaning. It’s like I’m working on a dial-up modem from 1990 — erratic beeps and strange buzzing noises that last for minutes before a connection is made.
I go through bouts of these brain breaks. I know in time my mind will return to its usual working order. I just have to be patient and work on sorting out what’s weighing my thoughts down. Sometimes, it’s caused by excessive pain, and other times, it’s my emotional response to living with a chronic illness. I haven’t figured out what my current issue is yet. Most likely, it’s all of the above.
Rebooting the brain
To get my mind to plug back in, I’ll write down everything that’s bothering me. The list will include physical and emotional stressors, as well as everyday tasks that have stacked up on my plate. Once I am able to see how much I am trying to manage, I can more clearly identify what I have to prioritize, then determine what I can handle and what I need help with.
The brain is amazing, but it sometimes takes a personal day (or month) off without our permission. Just like the rest of the body, the mind needs time to rest and heal. That’s why we shouldn’t panic if we can’t find the cellphone that we put in the fridge. (Done that.) We’re not losing it!
When our mind starts glitching, we can’t ignore it. We must work on nurturing it back to good health. This might be as simple as prioritizing our daily tasks. Or, we might need to consult with our doctor to see if any of our medications could be causing brain fog. Our brains — and husbands and store clerks — will thank us!
In the meantime, I know I’ll finish all these columns once I can get my thoughts focused. I’ve got so many important things to write about — tricks for dealing with medical bills, what I wish people would say to me, how to save money on medications. Just give me some time to steady myself. I promise to share the valuable information I’ve gained from living my chronically sick life.
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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.
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Comments
Patti Gilligan
So nice to hear that I'm not crazy! I retired from my job and this was the main factor...I would catch myself staring at my computer and not know how to start a procedure that I had done hundreds of times before. Eventually, (maybe days later) I would look at it and have no problem. I even asked my Rheumatologist if the placques growing on my scalp (and making me lose my hair!) could be affecting my brain but he assured me that couldn't happen. Thanks for sharing your stories. They help me a lot!
Mari Gray
Hi Lisa, Ive just read your article & was trying to find out if Brain Fog/Cognitive Impairment affects people with Linear, Coup de Sabre, Morphea & Localised Scleroderma. The results so far have been unhelpful. I believe I have read in the past that it only affects Limited & Diffuse Systemic Sclerosis.If thats that category you were referring to,would it not be better to specify it as that rather than the umbrella term Scleroderma which covers all the other forms? I find it very confusing when what I have is called Sclero rather than LSSc. Just saying.Regards Mari
Lisa Weber
Good point, Mari! Brain fog isn’t an official symptom of any disease. I apologize if I confused anyone. By scleroderma fog, I was trying to explain that everything I go through that’s related to my diagnosis has contributed to my state of mind. Best wishes to you!
Mary Batson
Thank you for all you share, Lisa, and for being willing to be so authentic and vulnerable on such an open and often unforgiving channel. Brain fog or no, you shine so bright! <3
JULIE A KOLANKOWSKI KOLANKOWSKI
i have limited scleroderma and brain fog there are days i can not do simple things like write a grocery, go get my meds, do my art work , put things away i decided to take a break go for a walk or even try a nap. the doctor said brain fog can happen it will pass. it frustrated me stanford said to me nothing was wrong and made me feel li ws crazy. i went back to my doctor and the diagnosis (esophagael scleroderma and lupus) i felt relieved at last and i am managing brain fog by just pacing myself and not taking on too much at one time. great article proud of you warrior.
Elfriede Lappe
Thank you so much for your article! I’m 75 years old and I thought my mental health was going downhill. Your article helped me realize that it’s the systematic sclerosis! It truly helped me a lot! I have lots of good days too but the days where I seem to forget the answer to a question so quickly made me truly question my sanity! Thank you!
Jeannie rice
Is brain fog common with limited schleraderma?
Lisa Weber
Hi Jeannie, brain fog is a symptom, not a diagnosis. It hasn’t officially been listed as a symptom of scleroderma (any form) and it seems to be a hot topic debated by scientists and doctors. I’ve also learned that the types of scleroderma diagnosis can change too. As symptoms develop, your diagnosis can change. It’s best to focus on today, your symptoms and be sure the right doctors are monitoring you for changes. Best wishes to you!
Kimberly
Thank you Lisa for sharing your experiences with scleroderma. I was diagnosed with Systemic Sclerosis/Scleroderma last Spring. One of the worst symptoms happening to me currently is serious brain fog. And, when my pain level is high the 'fog' is at the highest. Your column has eased my mind. Keep writing.
Kim Wright
Great article once again Lisa. I have Scleroderma and have reached a position where I'm very lucky at the moment (fingers crossed it stays like that). I've been through so much and empathise greatly with what you are experiencing. The reason I feel so lucky is a lot of my symptoms have disappeared or have been reduced greatly and I can't believe I'm exercising and have gained so much fitness. I do intermittent fasting and fasting now and again but with algaes otherwise you will feel depleted and ill a lot. Autophagy from fasting does actually work. The exercise takes years and a lot of gritting teeth pain to get over some stiffness. The fatigue I thought I'd have for the rest of my life. I was like a zombie sometimes too tired to eat. Now I have lots of energy. I'm in a semi-denial state not accepting what Scleroderma wants to do to me and with a lot of effort holding on to being normal rather than the new Scleroderma normal. I know this doesn't work for all. However, I feel for those that are suffering because it's no joke and it's very scary, especially if you don't have the support mechanism and dealing with it internally alone. I wish you all the best and look forward to some more of your articles. I hope your hubby can go a further mile with patience as you can't do anything about the fog when it comes on. However, he does sound like great support and you are very lucky there. My sympathies to all with this disease in all its entirety. Life is hard with Scleroderma, it's a battle second of the day.
Shelley
Hi, I have been having a dry mouth and my lips are so tight when I get up in the morning, I can't smile and my "smile" looks demented. It relaxes a bit by late afternoon, but starts all over again when I wake up the next morning. I have not been diagnosed yet, but have had two positive tests (ANA and speckled pattern) and am going to the rheumatologist in February for further investigation. I am suddenly very scared after reading that my symptoms are indeed scleroderma symptoms. Is there anything you can tell me that would be helpful in any regard? Thank you very much. I am a woman, 64 years old and in good physical shape. I am very healthy but I do have hypothyroiditism and Raynauds.
Linda Sue GUTTERUD
OMG I'm so glad I found your page. I too have that I feel like I have lost my mind. I'm waiting for my CT Scan to come back to see if I have diffuse scleroderma or limited but I have told my rheumatologist several times that I have brain fog that comes and goes. He states that this is not a symptom of scleroderma so I feel that I am going crazy. Late in the afternoon it feels as if a curtain falling over me. Before this, in September 2021, I was playing pickle ball and bowling 4 times a week, but I quit because I didn't understand what was happening with me. Loss of balance and brain fog and I went to urgent care. They acted like there was no such thing as brain fog. My sister who has Lupus said ask your doctor to test you for autoimmune disease. My labs came back with a high ANA and my rheumatologist said you have scleroderma. What the hell, only 100,000 people in the US have this disease, mainly blacks and native americans, age group 30-50 and I am none of those. Right now my only symptom is Raynaulds and brain fog constantly. However my diffusing capacity stated moderate restriction with reduced Total Lung Capacity so they are testing me for lung disease. Crossing my fingers on that one because that is bad, really bad. Right now its the brain fog that is bothering me. Before September, 2021 I wasn't on any medication and I'm 69.