Coping With New Memory Loss Symptoms After Living With Chronic Illness
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.
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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.
I have dealt with pain for 16 years already, passing the half-my-life-with-pain mark now being 28. It started with me being born with twisted leg bones followed by discovering this at the age of 13 after pain in my knees from my twisted bones grinding on them. 2 years later I had waist down reconstruction surgery. The left surgery went well. The right surgery did NOT. Epidural didn’t work (later finding out it was because of my Ehlers Danlos Syndrome) and my nerves were rewired from the extreme pain via my bones being broken and twisted to straighten them. I was diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS) which was full body-extremely rare. I learned to ignore the pain so I could try and live a normal life, but it got so bad my hands no longer would work from the excruciating pain. I barely made it to graduation, failing my last quarter of school. Luckily my ranking was 4th so I still graduated with extreme pain and with help from others who had to write for me. Pretty quickly I was bed-bound and dreaming of hospitalization so I could have strong medication to ease my molecular deep ache. Flash forward to 3 years later when I was miraculously healed over-night. I thought I was free and worked on gaining back all my muscles that were atrophied. But then my pain came back and began rising ever higher. I joined this site for freedom to express my struggle held deep inside for so long with a smile on my face and not even my family knowing what I went through. I never realized how glorious it was to be open and now I refuse to go back. My sense of peace demands to no longer have a fake smile on my face. I am now diagnosed with EDS, AMPS, Fibromyalgia, Hypothyroidism, Severe Insomnia, Asthma, Chronic Fatigue, and recently diagnosed with Lupus as well with a promise that I will soon cross the line and be diagnosed with Juvenile Arthritis. It is SO freeing to know that the reason for all of my pain is because of my many overlapping diagnoses. I am currently working on filing for disability and have lost my dream of Interior Design to keep me warm. Also dealing with blisters covering my scalp and making it ridiculously tender with serious GERD and acid reflux problems due to the EDS. Constantly focusing on not throwing up each second is my new normal. Swallowing 10 times per first swallow is becoming habit. Psoriasis and Eczema now are hitting me harder than ever. My pain jumps higher and higher and no doctor has had the gumption to stick with me and my severely deteriorating health. I walk like a 96yr old woman and hurt so much worse. Technically Miserable but still I will fight on, savoring each moment and smiling at each thing that lifts my burden a little. Life should be cherished, no matter how pain-filled. And with The Mighty at my ruined and failing finger-tips, I will carefully walk into the world with my shoulders back, face to the sun, and hope in my heart with a wish to lift a few fellow down-trodden. We got this!!!!
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