Fill in the blank: My most frustrating narcolepsy symptom is _____.
From excessive daytime sleepiness to vivid dreams, what is your most frustrating symptom of narcolepsy? Share in the comments below!
People not understanding an impossible social life
We hear you! It's can be difficult for people to understand what they can't see. Are those closest to you supportive and understanding? - Lori (Team Member)
Excessive daytime sleepiness and not wanting to do anything. I literally have no ambition to do anything, even clean my house.
ohhh yes, i forgot about the brain fog. I can't remember anything! Hi
. Is there anything that helps you on those days? It must make life awfully difficult. Warmly, Lori (Team Member)
I would have to say the lack of motivation. I just don't care about cleaning anymore or doing things, and I hate it. I'm just tired 24/7.
I owned my own cleaning business! And I was always zooming around.
My situation is kind of complex... In 2020 I had Covid pneumonia, and for the following 2yrs, my motivation, energy and stamina declined more and more.
I was first diagnosed with heart failure. It was only functioning at 35%. In the following 4 months, I was also diagnosed with N1 and eosiniphilic asthma. Plus I have copd.
Well, heart failure, copd, and narcolepsy all have the same symptom-- fatigue.
So I got a triple whammy. Sigh.... and add my lack of stamina and shortness of breath, and I can be functional for about 10 minutes before I have to rest. I rest for 5-10 minutes and I'm SO sleepy.
Sometimes I just am tired of fighting and I wonder if I will ever be able to enjoy anything ever again. All I want is to be functional!
I really really miss the old me. This is NOT who I amHi
. I responded to another post of yours without all this information. You have so very much to contend with. It's no wonder you feel unmotivated. Please talk with your doctor about how you feel, if you haven't already.
Movement/exercise is vital for people with COPD even if it's just a few minutes here and there. The less active you are, the greater the chance of progression. It can feed on itself, worsening lethargy and depression, but you have to be especially careful because of the heart failure and the challenges of narcolepsy. You might really benefit from a referral to a physical therapist who understands your boundaries and your state of mind. If you can get moving more, you might see improvements in your breathing, which should help you feel more energetic.
Has your doctor also checked your vitamin D and B vitamin levels? Low levels of both are common in people with chronic illnesses and can lead to fatigue/depression.
There are so many factors that might be contributing to your inability to enjoy life right now. If you can address even just a few of them, it might be enough to get you started. Please know we are here for you. Warmest of wishes. - Lori (Team Member)
It's has to be memory. I include automatic behaviors with that. I don't buy the sleeping explanation; I have looked over the study that started all that, and it's awful to say the least. I also have a lot of trouble trying to finish easy tasks. I end up standing there wondering what I'm doing. It comes and goes, but when I'm stressed it's terrible. It can happen so many times, so fast, that I become unable to complete anything.
