I'm just so tired

I've read bits and pieces of your posts in this thread so apologies if I've missed some details.

Can you give us some detail on the following?

You mentioned eating fast food.. What is your average diet like? I'd recommend cleaning this up.. focus on simple whole foods.. Lean meat, vegetables, and fruit. Lay off the grains and starches. Stop drinking caffeine.

You mentioned falling asleep in meditation.. When I started using the cpap I did some breathing techniques to help me fall asleep.. I focused on deep breathing.. basically enjoying all the air that was being pumped into me.. Deep breaths in deep breaths out.. I have become "addicted" the the volume of air i get.. I love it now. My pressure is at 15.

Avoid napping during the day.

Get some daily exercise.. simply walk a mile or two..

stop using tv, computers and electronics 2 or 3 hours before bed.. Let your mind rest. Read a book.. Build a plan for tomorrow so you wake up with a purpose as opposed to stressing about it all night.

Drop all the non essential drugs/sleepaids.. I got the feeling you were chasing symptoms as opposed to fixing the root cause of the issues.. The CPAP can only fix so much..

Take a shower before bed.. I cant stand getting into bed if I am at all icky.. Sometimes in the summer when it's hot and I feel a little sticky when I get in bed I have trouble getting comfortable and I'll go take a cool shower and get back in bed and fall right asleep.

I guess what I am getting at is that the CPAP can only solve the problem with breathing while sleeping. You need to focus on taking care of all aspects of YOU.

Hope some of this helps..

Cheers,
spirtwalker

I'm sorry spirit walker but in another time and place your response would be heartily welcomed but NOT NOW. Did you not even read my last post!?!?!???!!??!!? I'm on the edge. As in jumping out a window. I do not i repeat do not need fixing. NO FZiXIING!!!!!!!!!!!!!!!!

Seriously. Was I not clear in my last four or five posts? I need support understanding compassion.

No, I had not read your last post.. I was typing my reply while you posted that so I did not see it in time to withhold my attempt to help you out.. my bad.. My post, as others are compassionate. People are trying to help get you to a better place.. I dont host pity parties and when presented with a problem I try to produce solutions.. Take it for what it's worth and good luck.

I just sent you two PMS.

49er

Okay, help us help you. In the context of limitations of this board, what does support, understanding and compassion look like? What do you need?

jjmahern wrote:I'm sorry spirit walker but in another time and place your response would be heartily welcomed but NOT NOW. Did you not even read my last post!?!?!???!!??!!? I'm on the edge. As in jumping out a window. I do not i repeat do not need fixing. NO FZiXIING!!!!!!!!!!!!!!!!

Seriously. Was I not clear in my last four or five posts? I need support understanding compassion.

ughwhatname wrote:Okay, help us help you. In the context of limitations of this board, what does support, understanding and compassion look like? What do you need?

jjmahern wrote:I'm sorry spirit walker but in another time and place your response would be heartily welcomed but NOT NOW. Did you not even read my last post!?!?!???!!??!!? I'm on the edge. As in jumping out a window. I do not i repeat do not need fixing. NO FZiXIING!!!!!!!!!!!!!!!!

Seriously. Was I not clear in my last four or five posts? I need support understanding compassion.

Just want to say that your post was so kind and caring, and worded so well. I think people respond to posts like yours more than, "tough love" posts.

Thank you. As we're all in the same boat with SA, I think the understanding is there, and I'm glad jj has found this resource. Its certainly true that those who don't deal with these issues would have trouble understanding, though they may be sympathetic.

I hope that jj is willing and able to articulate how best we can be of assistance.

ems wrote:

ughwhatname wrote:Okay, help us help you. In the context of limitations of this board, what does support, understanding and compassion look like? What do you need?

jjmahern wrote:I'm sorry spirit walker but in another time and place your response would be heartily welcomed but NOT NOW. Did you not even read my last post!?!?!???!!??!!? I'm on the edge. As in jumping out a window. I do not i repeat do not need fixing. NO FZiXIING!!!!!!!!!!!!!!!!

Seriously. Was I not clear in my last four or five posts? I need support understanding compassion.

Just want to say that your post was so kind and caring, and worded so well. I think people respond to posts like yours more than, "tough love" posts.

jjmahern wrote:But I had been able to easily fall asleep with the mask on the prior last two weeks or so. I understand that it takes time but it has been just about a month now and when I started this I was already significantly sleep deprived. I keep fighting and doing everything I can to make it work but to be honest, I am not sure how much leeway I have in terms of sleep deprivation. For a month now I have had a few days that were better than before I started and most all the other days are worse than when I started. I am more exhausted, more emotional, more hopeless. I am not sure if I am explaining how bad it is. I am so tired that I have not taken a shower in seven days. I am too tired to cook so I eat fast food or convenience food and due to that I am consistently over budget and scraping to make ends meet. I live alone and haven't got a partner to lean on if I lose my job. I work as a contract worker in an office and don't get paid when I am too tired to work, or have to go to the doctor or the DMEs, which never seem to be open evenings or weekends. The only bright spot is my buddhist community that are supportive of me emotionally. I also have meditation that I try to do everyday but since I started the CPAP has been really difficult to do because I just keep falling asleep every time I meditate. I do not want to kill myself or anything like that and yet I cannot see how I can live like this for much longer. People here say they have been dealing with this for months and years and I'll be honest, if I thought I would have to live like this for months and years, I might think about options. I can't look for a full time job because I am so exhausted that I can hardly think straight most days and am forgetful. My contract is set to end in December and I have no idea what is going to happen then. My insurance pays for very little of my medical bills as it is insurance I got from a temp agency before and now it is on Cobra and to be honest I am not sure how much longer that will last. I am currently racking up bills that I am not even sure how I will paid as I am barely making ends meet now. I am also fairly sure I have an underlying insomnia issue as well. I am supposed to be getting a call from another dr to help with that, which I most likely won't be able to afford either.

I am not trying to say that no one else has problems or issues, I am simply trying to make people understand the difficulties I am having. I am doing everything in my power to get used to the machine. I have been wearing it for hours every night before bed, I am going to bed earlier so I have at least an hour or more to fall asleep, I am making my apt dark for hours before I go to bed, I am not having any caffeine after noon, I am drinking sleepy time tea and taking melatonin, trying not to take ambien too much although that seems not to even helped last two nights because I have been barely able to keep my eyes open and yet couldn't fall asleep as the mask felt like I couldn't breathe (even if I could it felt intolerable). I tried when i felt that way to concentrate on my breathing as I do in meditation sometimes and yet the feeling doesn't seem to subside.

I reason I asked for no suggestions is first because I really just need to be heard by someone who has an inkling of what I am going through because my friends and family seem like they want to help and understand but they just have no idea. they keep asking me if I am exercising which makes me so annoyed. If I could exercise, don't you think I would be taking regular showers, cooking, cleaning my apt and so on. If I don't have enough energy to do normal everyday tasks, how the hell am I going to exercise. It feels like tremendous exercise to me to get up and get to work. To walk to and from the bus. To work for 8 hours. To come home and feed my cats and feed myself. The second reason is because the readers are only getting a partial view of what I have or haven't tried or done, I keep getting suggestions that I know are meant to be helpful but just annoy me like the exercise comment from my friends and family. and then not only do I get annoyed but have to type in again how I have already tried that or I can't afford that and so on.

I don't need fixing (at least I don't need others attempting to help me fix things cause it just makes it feel worse), I just need understanding and compassion. Support and encouragement. I am trying so so incredibly hard to keep my chin up and to keep trying and to stay on track and sometimes it is just all too much.

I am sorry I am going on and on and I certainly don't mean to offend anyone or make anyone feel bad for trying to help. I am simply trying to be clear about what I need in terms of help and support at the moment. You guys are the only ones who really know what I am going through. You are the only ones who know what it is like to be so utterly tired and exhausted all the time. Who know what it feels like to want to give up or to simply go to sleep and not wake up because you just can't face another day of not enough sleep. I have been looking this morning to try and find a local support group here in Seattle and I can find nothing but meetings at a hospital every six weeks but those are presentations on new equipment and so on, not real support group and apparently there are only one or two of them.

jjmahern, as hard as it is for you to feel like you're adequately conveying in words what you're going through, it is equally hard for me to convey in words how deeply I understand and can relate to your experience. You could change only a few minor details of your above post and it would be my story line by line. So please feel free to send me a private message and know that I (and others) don't see you as asking us for commiseration or a "pity party." The need for empathy and compassion is as real and legitimate as the need for practical information and advice. Right now you're asking for the former and not the latter. I get it, and I know at least a few other people here who get it. Call on us and don't give up.

Re the need for more support groups, I agree. Knowing as I do now how difficult both the condition and its treatment can be, and the impact it can have on one's physical, social, emotional and financial well-being, I'm surprised more support groups aren't active and accessible. Sleep apnea does not occur in a vacuum, it happens in the larger context of our lives and the need for the kind of support you're seeking is great for some of us.

Keep fighting the good fight and asking for what you need.

Pugsy - the amitriptylline incidents I was talking about happened 30 years ago, but for some reason 'stuck' (along with a lot of other interesting stuff) and I wasn't suggesting that anyone either not take it because of that, or that everyone would have similar results by a long shot... I just wanted to share another side to things. And certainly taking it to help sleep issues did not come up at all way back.

"Nothing I do seems to help. Seems pointless."
"It sometimes seems so hopeless."
"I'm on the edge. As in jumping out a window. "

These are quotes from your posts. These are similar to statements that people with untreated depression make. Just an observation, that's all. Depression can make everything exponentially harder to get through.

My depression is not untreated. I am on wellbutrin and have been for the last ten years

jjmahern wrote:My depression is not untreated. I am on wellbutrin and have been for the last ten years

You may or may not know but insomnia is a very common side effect of this medication. Could that possibly be the reason for your difficulties?

49er

I have been having issues with insomnia for last 4 months but been on wellutrin for ten years so I am not sure there is a connection and tbh I am not sure there would be anything I could do cause I can't go off it (if I want to live or keep my job that is). I did have trouble sleeping a bit when I first started and took it after 1PM. I have since moved to taking the XR and taking it at 6AM right when I wake up.

But before starting the cpap I had gotten somewhat of a handle on sleeping issues. I never had trouble going to sleep (until I got on CPAP). It was always just waking several times in the night (not sure if from apnea or night terrors that I had gotten to a minimum) and I had trained myself after waking to go right back to sleep most times. So yes I know I am dealing with sleep issues as well, but not anything to do about it but wait for the psych sleep doc who my reg sleep doctor referred me to to call about making an appt which I am sure I won't be able to get in for at least a month.

johnthomasmacdonald wrote:I'm pretty much in the same boat as you are - so at least don't feel that you are the only one who can't seem to get this thing to work. I'm amazed that i'm able to function at all. For the first time in my life, i dread the night.

For those of you having trouble getting CPAP to work....

Another thing to check out - Be sure that you are not having central apnea problems where we stop breathing due to lack of signals from the brain. A CPAP machine can make centrals worse, even though they may help treat obstructive breathing problems.

I have mixed apnea - both centrals and obstructive. A top of the line ResMed S9 CPAP machine made the centrals so bad I couldn't fall asleep without a panic. When I tried the ASV Adapt designed for centrals and obstruction both, it worked like a charm. Back to excellent health. If I had stayed on a standard CPAP, I'd be writing the same stuff as the quote above.

Look into this possibility with your doctor. Maybe the centrals didn't show up until recently or maybe they didn't show up on the sleep study as a big problem. Transistional centrals (when falling asleep) are usually discounted by the doctor, but let me tell you - they are hell to get thru when falling asleep. Some of us stop breathing for up to 1-2 minutes at a time and wake up in a panic. I used to dread the night for that reason. Now I enjoy sleeping knowing the ASV machine will pace my breathing when needed. It's a miracle machine to those of us who need it.

Tom