5 replies to this topic

[exanimo]

I just wanted to throw something out there that I've struggled with. Every since my EDS began (which was probably around late elementary school) I have always felt embarrassed about sleeping. I would wake up really late in the day, maybe 1 pm, and my parents would always crack jokes or say "oh look who decided to get up!" Or falling asleep in classes, if someone would nudge me, I would try to pretend like I hadn't been sleeping.

I think it's gotten better since I was diagnosed, because I guess I feel as if there is a real reason, and one that I can't control. I'm not just lazy! But I still have times where I feel embarrassed about falling asleep, sleeping in late, or napping.

I also feel horrible because I tend to be late to everything. It's even worse because I'm usually upset with people if they are late, too. As hard as I try to get up on time and leave on time, I just never do. Same thing with my college classes, I just always manage to miss class or not finish an assignment on time. (It doesn't help that I'm a procrastinator!) The other thing that goes with this, is I feel really frustrated. Most people juggle many things in life; work, kids, marriage, school, community involvement, etc. However, I feel like I have sleep to juggle as well, and it affects everything else. It is so hard to predict when I might get tired or whether I'll really be able to make that party on Friday because I work all day and may very well just come home and sleep the evening away. And this means that I have to prioritize my life accordingly. I often neglect pitching in around the house because I feel like I just want to be awake and relax for a few hours. Or I want to go out with friends, but the problem is that between work, school, and sleep I just never have enough time. So I end up cutting something else short (like school work) or ignoring things completely.

Anyone else notice this? Did it get better when you were diagnosed? What other feelings have you struggled with when dealing with N?

[SleepyRaffie]

At times I feel embarrassed about needing to sleep. I do not remember a time when I was not sleepy. I was often told I was "wasting my life," "lazy" or some other negative thing. Even though I know it is not correct, a lot of that negative association is still there. It is definitely a process to change it.

I find that when I am more awake I arrive on time and keep things cleaner and when I am not everything tends to fall to the side. Cleaning is the last thing I want to do with what little energy I have. I actually get so foggy I will not process that there is a need to clean.

I have had a myriad of emotions from relief to fear to joy and sadness. In some ways, I believe I am grieving. I am grieving what can never be. At the same time I am in a process of discovering what life with knowledge and treatment can and will be. That is exciting.

[exanimo]

At times I feel embarrassed about needing to sleep. I do not remember a time when I was not sleepy. I was often told I was "wasting my life," "lazy" or some other negative thing. Even though I know it is not correct, a lot of that negative association is still there. It is definitely a process to change it.

I find that when I am more awake I arrive on time and keep things cleaner and when I am not everything tends to fall to the side. Cleaning is the last thing I want to do with what little energy I have. I actually get so foggy I will not process that there is a need to clean.

I have had a myriad of emotions from relief to fear to joy and sadness. In some ways, I believe I am grieving. I am grieving what can never be. At the same time I am in a process of discovering what life with knowledge and treatment can and will be. That is exciting.

You pin pointed what I was trying to say about cleaning being the last thing you want to do with the little energy you have. That's exactly how I feel. I put things off because that's exactly it, I just don't want to spend the two hours I might be 'awake' to do things that need to get done or should be done. They obviously will eventually get done. Just not when it should be.

Thanks for your reply! It's just nice to know that I'm not the only one who feels so frustrated sometimes. And I can totally understand the grieving. I feel like that sometimes, but I am also very excited to have the help that I need to do better in life. To be more awake and focused, is truly a blessing and even if it's never going to be normal, it's much better than without the help from medication and support from people who understand, or those who might not but can support me anyway.

[SleepyRaffie]

The support makes a world of difference. I always new I was a "tired person," but I had been told for so long that it was something I was doing wrong that I was totally convinced that if I just exercised more, ate better, had better sleep hygiene, took more iron, got counseling or whatever the newest idea was, that I would feel just like everyone else. Reading others' stories and seeing how much we have in common really helps me. I would not wish this on anyone, but it is nice to know I am not alone.

[Shive]

Of course, it is quite embarrissing for some time to get out of such situations, when you realyy feel lazy and fall into a sleep during some activity among other peoples. And i think insuch situations no other person could tackle well except ourselves. As, we could better manage such situations and could get out of it by getting some knowledge about it from others, gathering some symptoms and remidies to work on it.

[Elli of Nod]

Did automatic behavior get any of you in trouble when you were a child? I didn't really get in trouble, but I know there would be periods in class where I was asleep but I guess I was dreaming or something. I'd raise my hand to answer a question, and when the teacher called on me....we wouldn't be on the subject I was dreaming. It got really confusing when I was dreaming of doing math and we were on social studies or something. I'd get really embarrassed and I'd duck my head and say, "I forgot what I was going to say."

After dealing with that for an entire school year and thinking that there was something really wrong with me when my teacher brought it up to my parents (it happened that often that year), I started doing different things to try and keep me present. It didn't always work, but I never again raised my hand and not know where we were again.