What Do You All Do To Cope With DSPS? Please Help!

by Naïssa
(Belgium, Europe)

(First of all, English is not my mother tongue, not even second language, so bear with me, please)

I have been reading several of the stories written on this great website. It's such a relief for me to read that there are people like me. Your stories are all so familiar! Thank you for sharing.

I have been struggling for years, wondering what was wrong with me that I could not function like other people. Recently I was diagnosed with DSPS. I'm 37, I also have had these problems since I was 7, but it has not always been a problem that prevented me to work and live normally. I just slept a little after work and slept the whole weekend. Until that was not enough to balance me out and the fatigue just took over.

The professor who finally diagnosed me with DSPS knew very little about it (OMG, if yet another doctor would had told me that "I was just suffering from a depression", I would have kicked him!) and told me there was nothing that could be done to cure it. It could only be shifted a little bit.

During the 7 last years I have taken a lot of medication... benzos, sleeping pills, pills against depression or neuroleptic diseases to help me sleep at night and (prescribed) amphetamine or ritalin in the morning to help me to stay awake... (BTW, apart from the prescribed medication I do not take drugs) That along with meditation, hypnosis, yoga, building up sleep debt in order to sleep... Name it, I have tried it. Nothing helped and nothing is helping. Things just got worse and worse. For the last 9 months I haven't able to go to work, I became isolated from friends, got fybromyalgie and chronic fatigue due to the deprivation of sleep, got cancer because I was totally exhausted...

Is this all happening to you too? Is DSPS dominating your life too?

It's been 3 months now that I know I have DSPS. I take Provigil in the morning and Melatonine in the evening. It does not help me in that way that I can go to work from 9AM to 5PM.

I have a special LED light and I try chronotherapy, but nothing helps! I'm going crazy. When I finally sleep (from 5AM to 14AM), I sleep like I'm in a coma... I barely hear the alarmclock at 7AM. Or I am too tired to even open my eyes and look into the bright LED light. (I also have sleep paralysis with terrible hallucinations and really bad nightmares - does anybody recognize this???)

My doctors are advising me to ask for invalidity, stop trying and stop torturing myself. After 7 years battling, has it come to this? I have a good degree in law, I love working and I'm supposed to become a vegetable because I can't sleep between normal hours?

I read in a comment about stopping with all the nonsense of treatments and just accept who we are... It sounds like a relief... But then what?

Finding a job to work at night? I applied for a job at a hotel to work as a nightreceptionst, they looked at my degrees and they laughed at me! Am I supposed to lie about my education to find a job? What do you all do? Not working and living in poverty? Keep on trying to work normal hours and destroy myself even more? Suicide? I'm not the type to commit suicide, but for the last week it has started to cross my mind... Me, I survived cancer, I'm so grateful for life and now these thougts are beginning to penetrate my mind. I don't recognize myself anymore.

This hell has been going on for 7 years and it's getting worse every day! I have lost jobs, friends, partners, I have become poor, I'm in fear to lose my house, I have lost my health and now I'm starting to lose my sanity.

What do you all do? Please help! I cannot take it anymore.