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Coping With New Memory Loss Symptoms After Living With Chronic Illness

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I have fibromyalgia, so I have dealt with “fibro fog,” but I have memory loss now, which is different. I would explain “fibro fog” as feeling like a cloud that descends over your mind. My thinking is slow and sleepy. Movements are harder and more exhausting because I have to push through that thick fog.

It is not always thick, and sometimes I only struggle a small amount, but other times, it can be so hard. It sometimes feels easier to not move and to just sleep instead since my exhausted body requires so much work to get things done. “Brain fog” can also come from pain medications or sedatives.

I have always been able to fight through medication-induced fog to do things, so I can focus on helping my pain. “Fibro fog,” however, is harder for me to fight through and takes more out of me, but it can be done. Forgetting where I am or even forgetting my name, age, or birthdate is common.

But these two types of “fogs” are not like the memory struggles I am now experiencing. With my new memory struggles, there is no “fighting through” anything. It feels like a brick wall — blocking off memories, knowledge, and even core personality traits.

Fear follows my memory challenges. I fear what else I could forget or if I’ll end up forgetting something at a pivotal moment. I worry that I’ll forget that food is in the oven, or that I’ll forget to take my medicine.

It has taken me two hours to take my bedtime medicine before because my memory relapse would last 20 minutes, and I would think “I need to take my medicine.” Suddenly, 20 more minutes had gone by. I also forget conversations and big events that happened. My family has to tell me things at least eight times before I can remember a bit of any of what they said. My room is covered in notepads so I can write everything down. The trouble is remembering to read the things I have written down.

By far the scariest part was when I forgot my name. I drew an absolute blank, and there was no getting through the “memory loss wall.” I had to scour my room looking for something with my name on it before I could remember my name.

If someone you know has new, severe memory struggles, the best thing you can do is be patient. So many squabbles can come up in my family because I forgot to do this or that — though I am disabled, so my saintly mom takes care of all the chores. Be patient with your loved one and be prepared. Set things up so that someone can always double-check on what your loved one was supposed to do in case they forget. The things that disappear in our memory are not always predictable — which can make us fearful.

With this fear can come anger. We may lash out or yell or get angry over what seems like nothing. Still, be gentle — we may be losing things that no one is prepared to lose. We may have anger at ourselves, others, fate, the universe, or God, but no matter who or what makes us angry, there will likely be anger.

Fear is no easy thing to overcome. It took me months to recognize what was going on with my memory and that it was getting severe. Getting up the nerve to tell my family about my new struggle wasn’t easy either. I have had many humbling moments with my memory loss, and I apologize at least once a day for my reaction to the effects of my memory loss.

Learning to go with the flow and be OK with the trouble memory loss brings is no small feat, and it may take more than one person to help with it.

If you notice your loved ones struggling or reacting in anger when they normally wouldn’t,  recognize they may be forgetting important things they would have easily remembered before their memory loss. Please reach out to them if they need you.

Of all my health struggles, my memory loss is the one thing that has helped me realize I need much more help than just my own. We all do, so be patient, be gentle, be kind, be prepared, and be forgiving. As I often say now, “Please, give me some grace. I am just doing the best I can.”

Getty image by Tatiana Dvoretskaya.

Originally published: June 13, 2022
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