I don't know if it is just me, but I have huge issues with staying focused. It's not that I can't focus at times, but I feel that my mind gets muggy and over crowded at times. Well a lot. Especially when I have a lot piled on me. Maybe it's because there is so much I want and need to do and when other's add things onto it, I feel like I'm racing with time because I don't know when my sleep is going to take over. Therefore, I get mentally frustrated and lose my focus. I don't know. Maybe I'm exaggerating. But I know when I get frustrated I get even more sleepy and then I don't get done what I need to get done because I'm sleeping. Maybe it's just the sleepiness that throws me off. Does this happen to anyone?
In answer to your question of whether I ever feel overwhelmed and unfocused -- the answer is "yes." One of the things I have learned about this illness is that you will have good days and bad days. When the bad days start to outnumber the good days, depression can set in hard. Like you and many others on this support site, we have many things pulling us in different directions so it is important to get your priorities straight. Ask yourself if given the chance to choose which ONE thing you wanted to accomplish in a day, would you choose IT or do something for someone else. It's tough to choose when you have children or a spouse or a big extended family or work duties, etc. Something has to give and you have to give yourself permission to choose what is BEST FOR YOU. It is the only way to get healthy enough emotionally to make a difference in life -- as you say you really want to do. I hope this helps a little. Regards, Coping
Thank you and I understand exactly what you are saying, but I don't know how I am suppose to do that. Just like my experience today.
I had to go over to my sister's late yesterday evening to help her complete her assignment for school that's due Sunday, but she has to leave Sunday for training (she is military). Well, I couldn't stay awake entirely. I was falling asleep at the computer. I got only about a little over 3.5 of sleep before I had to get up.
I had to rush back home to wake my son up (he has sleep apnea and mild imsomnia) so that he can get ready to go pick up his pay and get dropped off at the metro station. Before I left, my sister asked if I could take her 6 year old with me because she has to leave soon for an initiation which is in VA.
We headed to my house and my mother was going to be at the train station soon so I had to leave to pick her up. She is in town to take care of my youngest niece while her mother is away for a one week training. My son needed me back by 11 a.m. (Originally he said 12, but that changed). My niece and I picked up my mother and then came back to my place to pick my eldest niece up (both are sisters) to take her to work and to pick up my son. My son wasn't ready yet.
Since the youngest was hungry, my mom wanted to treat everyone to breakfast and she wanted to relax and eat. Couldn't do that because my niece had to be at work by 11:15 am and I had to get my son. So while my mother waited for the orders I drove my niece to work down the street, went back to the restaurant and picked my mom and my youngest niece up, dropped off my oldest niece's meal, took my mom and youngest niece to my sister's place, helped her with her luggage (my mom asked if I could get a couple of things from the store), drove back home to get my son (he text me and complained because I was late), drove him to pick up his pay, ran an errand for him, put gas in the tank and drove him to the metro station.
By the time I got back to my place I could not move. I was already barely staying awake on my way home. I could not remove myself from the car. I slept for a little over two hours under the wheel. I tried to wake myself a few times, but couldn't. When I was able to pry myself up, I went inside, still sleepy. Heated up my food, ate as fast as I could, brushed my teeth, washed my face and tidied my hair. As I was on my way out to go to the store for my mom, my son text me saying he needed me at the station in 20 minutes and he didn't want to stand in the rain long.
I told him I had fallen asleep and need to go to the store for his grandmother first. He said to hurry. I went to the store, dropped off the items, and proceded to pick up my son. Got him and had to go to the store to get his transmission fluid. He also needed to stop at another store. Took him home so he could rest to go back out to work. I left right back out thinking I was going to go relax with my mom at my sister's before picking my niece up only to get a call from her to pick her up now, because they let her off work early. Finally, I went back home.
I made a business call that I had waited all day to make. Opened my computer and checked my messages. Before I was about to start any work, I logged on to our site to respond to posts, got interrupted by my son to take him to meet up with his boss. It is now 11:42 and I am sitting in the car typing this.
I started a business and joined and partnered with some others to do some great things. I'm even trying to design my database. But this is how my life is going and all I can do is flow with the motions, cry and scream. I guarantee I will go inside, open my computer and fall right to sleep before anything gets accomplished. I tell them over and over again how when my time is thrown off, I can't get back on track, because I will be too sleepy to focus, but nothing ever changes. How do I choose one thing out of all this?
Okay -- now you are seriously making me nervous and afraid for your safety. You are driving around the entire family while being sleep-deprived. Sleep deprivation has been proven to be more dangerous to public safety than driving after two drinks. So, this is something that you MUST stop doing. It sounds like everyone relies on you to get the JOB DONE in every situation and you are a giving and loving person so you don't mind taking care of others. BUT, you are putting your life and everyone elses lives on the line every time you drive so sleepy. Your family is used to having their way and you accommodate them as they see fit. I recommend that you see a life coach or a counselor to explain what's going on in your life and how you are coping with it all. She/He may be able to provide tools for you, phrases you can say to yourself, personal mantras that give you strength when you are literally depleted of energy and your family doesn't understand what you are going through. best to you and your family, Coping
I apologize for taking so long to respond. I took niece to work this morning and went straight to sleep when I came home. At some time when my son came home I had logged on to reply, but I went right back to sleep with the computer still on.
Yes, I know how seriously dangerous my sleepiness can be. That is why I opt not to drive that often and I had gotten in an accident before because of falling to sleep at the wheel and I was almost home. I had gave my car up when I was living in NY for I had no choice at the time (the transmission was shot and I had no money to get a new one). It wasn't till recently that I started driving more. We had just moved again a few months ago and my son's car had been out of commission since before we moved. He just recently got it back from my father who worked on it. So until he gets his license cleared for driving, I'm the designated driver.
I had an issue driving back and forth to work when I first started working my last job driving from Baltimore to Silver Spring (within the Metropolitan area). Rush our was the worst with the stop and go! I almost quit. I then got approved for housing closer to my job and that made working a little easier.
But after the stress of barely making it, on the job issues, and family issues, I became severely depressed and my sleepiness increased. It was the first time this had ever happened to me and it was the longest job I had ever had. So although I have had chronic depression for like forever, it didn't impact my life to that level until then.
I tried keeping up with a therapist and psychologist, but after I lost my job I couldn't afford it anymore. Then it was an issue of not having a reliable way to get around. I really don't know what resources I can use to help in that area.
Yes, I understand. I’ve always fought sleep, to the point that I wasn’t getting enough rest. I tried going to bed early (hard to do) and it helped. I still sleep with 1/2 PJ’s, 1/2 day clothes, but I’m more comfy in bed than on the couch. Sleep happens fast. I don’t have many alert hours in a day, either. Moving and running around helps, but that is lots of energy just trying to stay awake. I keep trying for a balance. I read your profile, too, and I’m a lot like you: being sleepy is normal for me, and also disabling. I want things in life, too, but I can’t try to behave like a wakeful person all the time - it was so hard. I’m glad to have friends with narcolepsy now - you understand.
I’m trying a C-PAP machine and in my third week, hoping for good results.
PS: You mentioned a deep depression, and treating that must remain a priority. I had a episode that took a long time to recover from; it can be very tough. If you need access to transportation and medical, are you covered by social security and Medicare?
No I'm not. I have insurance through my former employer which is where I receive my disability retirement income from.
Yes, the first sleep specialist I had strongly recommended a sleep schedule. He said try to go to bed around the same time every evening. I told him if he knew my life that he would know that would be impossible. The evening time was the only time I could get anything done for me and that was after I was done running errands, unexpected family affairs, and the responsibility of taking care of my son. Usually, getting to me was last and sometimes never happened. I would just fall out to sleep and awake frustrated that I was not able to take care of anything I needed for me, but now I have to got to work and just hope I can do something that coming evening. Exercise sometimes would give me a boost, but not often. I had tended to get extra sleepy after exercise. Staying busy is the only thing that keeps me awake longer, but most of my work is on the computer. If I'm switching from screen to screen doing multiple things, I can stay stimulated a bit longer. If it is something that requires me to be on one screen to long, forget it. I'm sleeping at my computer. I agree with you. Behaving like a wakeful person all the time is so hard.
I thought the C-PAP was for those with sleep apnea? My son has sleep apnea and the doctor recommended the C-PAP for him, but said that it wouldn't work for me. If you have good results please let me know. I would really like to know if he was wrong. I'm glad to have friends with narcolepsy now also. It feels so wonderful. Feels like a revelation. I'm not alone in this anymore.
Carol said:
Yes, I understand. I've always fought sleep, to the point that I wasn't getting enough rest. I tried going to bed early (hard to do) and it helped. I still sleep with 1/2 PJ's, 1/2 day clothes, but I'm more comfy in bed than on the couch. Sleep happens fast. I don't have many alert hours in a day, either. Moving and running around helps, but that is lots of energy just trying to stay awake. I keep trying for a balance. I read your profile, too, and I'm a lot like you: being sleepy is normal for me, and also disabling. I want things in life, too, but I can't try to behave like a wakeful person all the time - it was so hard. I'm glad to have friends with narcolepsy now - you understand.
I'm trying a C-PAP machine and in my third week, hoping for good results.
I have minor sleep apnea, but also other conditions that some apnea patients have. It’s worth a try. I’m glad you have disability insurance through work - very important. If your town has Access vans, ask what qualifies you to have transportation, if necessary.
Thank you Carol. Now I understand your dilemma. As far as getting assistance for disability, I was thinking that I had to be getting disability from Social Security to get any assistance. That is definitely something for me to look into.
here's a link to the "spoon theory." http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
Many people with chronic illness use this story to illustrate how they must live their lives.