Some Days R Good. I Feel Almost 'normal'.

Wow. Thanks 4 writing about yr experiences. Unfortunately, it is apparent that there is not much that can b done 4 those of us who do not gain much from the meds. :-( Each day I weigh up the pros & cons of living this life. It is really that hard. I am such a happy person through to my core that the consequences of not being able to 'live' my life are devastating. I literally experience nausea from being so tired and I have severe muscle & bk pain from trying to stay awake throughout the day. (the body tenses to assist in keeping you awake). I am forever making excuses to friends, family & work and am consumed w feelings of guilt due to cancellations & 'letting ppl down'. It takes SO MUCH ENERGY to act normally, ie. Up-beat, around ppl that I crash & burn later. I can't take a perm job b/c I call in sick too much & I can not wrk more than a cpl days a week. I stress about paying the bills & the amount of times I have balled my eyes out b4 a shift b/c I am just so tired that I cld not possibly go on, is countless. I feel like the black sheep of the family as I never go to functions or help out w baby-sitting, etc. They know about my condition but who could really understand??
The amount of specialists & drugs I have tried!...Each time I get hope that this cld b it...
But there is not much help out there actually. If the drugs don't work, well, tough cookies! I have people who love me. I so wish that I was alone sometimes. - Then I wouldn't have to consider anyone else or feel guilt for being the blimp on their radar. I would b free to go & leave this place. If I had the choice of living this existence or not being born at all, Id choose the latter. As is stands, I am bound by the guilt I feel 4 others and I am stuck here in this body & place. I have moments of pure bliss. But it seems to make it all the more painful when 20mins later I must go straight to bed b/c I am too tired to continue. I love those short moments when I feel normal and hopeful that I could function with awake/alert energy. I love it so much that it makes me feel like crying when the uncontrollable urge to sleep comes so quickly. The tabs only last an hr at most & sometimes I am so tired that they don't work at all. Going to the supermarket is both a big outing and ordeal 4 me on most days. I often have to go back to bed 2-3 times in the morning & once in the afternoon. The usual scenario is to wake up with excitement that the day will b good, have breakfast & then get so tired I must go bk to bed. Then wake up 1-2hrs later with excitement that I can do some things. I have a shower and dry my hair, then BANG - so tired I must go bk to bed. I start to feel down but I listen to meditation music & fall asleep. I wake up again & must decide b/w going to the pharmacy & supermarket; doing some dishes & vacuuming the floor; or making a phone call (from the back-log of calls I wS too tired to answer last week when the friend/family member called). Then it is night & I feel as if I have done nothing & I'm too tired to do anything but eat and stare at the TV. I'm sure there is some dribbling whilst I stare into space & then it's time 4 my 12hr sleep b4 wrk 2moro. But I feel so stressed b/c I'm really not well enough to go 2moro and I am so tired and not rested from the day I just had - b/c to me, it was exhausting! So I sleep & wake up w hope again, only to have it crushed by the constant reminder of how much of my life is disappearing into this ever-consuming slumber.
I'm sorry to bring others down w this msg. I am just so tired. So so tired.
Dayisnight Dayisnight
31-35, F
4 Responses Dec 20, 2011

Join the Idiopathic Hypersomnia facebook group. It is full of friendly and helpful people who are in the same boat as you and you can have tons of valuable information at your fingertips!

I absolutely loved your posts. I feel like a drug addict and sleep is my addiction. My life is ruled by my terrible need to sleep and how I can fit my life around the need to sleep. I have never told anyone this, (so of cause the Internet is the perfect place) but often on the way to work I fantasize about having a car accident so I can have an excuse to sleep. I like to think about myself as having all the sleeping without the beauty! If I could sleep with my eyes open, staff meeting would be great. Someone suggested I get those glasses with the drawn on open eyes. I loved your posts because I feel like I have to keep my sleeping a secret. I dread my mobile because of all the missed calls and unanswered messages. What was I doing? Sleeping of cause. I loved reading about your daily routine. On the days I don't work I get up, take the kids to school. Crawl back into bed, sleep, sleep, get up, pick the kids up, have a shower, and on a bad day go back to bed. Get up, make dinner, pretend I have a life, pretend I haven't sleep for 7 hrs, hang on by my finger nails until the kids go to bed, listen to my husband complain that he never sees me (I'm asleep), nod tiredly and crawl back into bed. Rinse, repeat.

Your words were comforting/ as I read them it was like you knew exactly how I feel ! I have often used the words "all my energy is used up for now". I often get finished with simple tasks and find myself lying back on the bed. I comment to my co-workers when I arrive @ work " if you only knew how much work it is for me to just get to work----I'm already tired !" but none of them really "get it " and understand how seriously exhausted I am.

I can relate so much to everything you've written..All the guilt, all the let downs.. People never understanding. I am too a very energetic personality, and people never notice that I'm tired. Unless they are very close to me. But still they don't understand, they get hurt.<br />
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I am blessed with an amazing boyfriend, reading my every sign of fatigue, being there for me when I cry, when I'm dramatic. <br />
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But we have to keep on living, there's no choice, cause we have those moments of bliss. I don't know, I know that when I feel like nothing is helping, I just try to go "outside" myself. Not identifying myself to what's happening with me. <br />
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I know that we experience different things, we all do, I don't know your exact situation.. i guess I've been lucky with a lot of my life around me. I can say that cbt has helped me the most. Learning to live with my diagnosis.<br />
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Take care and a lot of hugs<br />
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/ida