Daily...and I still fight

Diverdown1, Bless you. I empathize.

I feel like I do not even function until 1 p.m. every day since COVID x2 ramped up all my other issues. It's a
daily battle, BUT, I am reminded of those much worse off than me and I also trust the Lord to get me through
each day. No, we are not alone and we are connected. Isn't that encouraging?

I am praying for you right now. Blessings & Prayers.....

Yeah, "Ground Hog Day", good metaphor.
(Except I STILL can't play piano much!)
We just really have to "pace" ourselves, and rest as required, but try to take advantage of those spells when we feel we have more energy.
In my case those spells generally follow within half an hour after a cappuccino!
Since I don't really want to have ten of them in a day, I've been considering Vyvanse, but you are already on that, and it's not helping all that much?

Meanwhile, don't overblow your own expectations, and keep in mind that you you WILL feel better at some point; it truly isn't a life sentence!

Appreciated your sharing...

So true. I have to remember to make all my Dr appointments in the afternoon because I am not able to get enough strength to get up and get dressed until I’ve been up for two or three hours. I have stopped doing anything except going to doctors and getting down stairs to eat a few times a day. I’m hoping to wake up one day feeling better. I’m lucky that I don’t have some of the symptoms of others here. I can’t taste anything and that drives me crazy

Vyvanse helps during the day, I usually wake up feeling terrible malaise and fatigue. I actually slept 10 hours last night and woke up today ok. I am always grateful for those days. It takes the Vyvanse about an hour to start working. It helps me function as well as my racing thoughts. I try very hard to stay in the moment. This weekend, I woke up feeling TERRIBLE, as I shared. It isn't always to that extreme and I did not do anything strenuous. It is just this LC. I know that I have to keep on going. I am so grateful for all of you who share on here. Thank you.

I understand that although in the last 3 years, I will admit I am better than I was in the first year. I was disabled, daily. I still have no sense of taste or smell when I wake up and through the morning. I also sometimes feel no temperature, another crazy symptoms. I also feel grateful knowing that I could be a lot worse and have been. I wrote an email to a doctor at Harvard who did research on LC and Chronic Fatigue and PEM. I will let you all know if he replies.

Here is an article that might be helpful. Next time I am at the doctor I am going to share it.

I dunk my head in the shower, take my pills, then lie down with a VR Headset on. I still can't be very productive, but it's been very helpful for keeping my mind busy when I'm stuck in bed.

It feels incredibly affirming to read that someone else is going through this. My doctors' intake people sometimes act like I'm being difficult when I say the appointment needs to be in the afternoon or as late as possible, and some people get a bit surprised when I say that leaving the house 2 days in a row is a major struggle, but that is the nature of the disability. We don't have the start-up speed or stamina to get up in the morning and go out all day anymore.

I understand and I also appreciate everyone who posts here. I woke up feeling awful again today. After 3 years of this, I do the same thing every morning. I remember that I have to keep going. I have a brother with a mental illness that is living with my mother who has dementia. I feel overloaded and sometimes I can get that hopeless feeling, but I MAKE myself get up. I have 2 dogs and 3 cats and I have to get up and feed them and let the dogs out. I am living off of student loans as I am in an online program for my Master's degree in social work (online, thank goodness)...so, I must take the medicine that helps me function, first thing, sit quiet, ask the Universe to help me, read the updates on this page to see what is new or who is new and hope that it passes for a little while. It does. I take that and try not to think, "well, tomorrow is going to be like this too." That is difficult, but I know I am not guaranteed tomorrow. I must keep going. I have gratitude (even if for a second) that I know I could be in worse shape. It is a mind thing I do, but I do get so tired of feeling like this. Hope is important, at least for today. I appreciate all of you so much.

Wow, you have a lot on your plate. I hope you can find some comfort in this community.