Okay, so I want to know.. what helps you? What doesn’t?

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I’m so new to this I need all the tips and tricks I can get. 

About two weeks ago I found having a sleep routine saved my life and I had the most energy I could have .. 

two weeks later I’ve managed to lose that routine amongst other things and I’m sleeping 12+ hours with no light at the tunnel .. 

so what works for you? How do you feel even slightly normal? Do you give in to needing naps and extra sleep? Do you fight it? 

Looking forward to hearing your replies 

Meg x

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11 Replies

  • Posted

    You may need provigil? Helps you stay awake. For me, im the opposite. I need 8 hours to feel better but rarely get it. I seem to wake up at 6.5 hours and its upsetting. I take melatonin but doesnt always work. And the past 2 years i cannot for the life of me take a nap during the day! Just lay there and my mind won't shut off. Ugh. So take advantage. Maybe your body needs that sleep to repair?

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    • Posted

      No I haven't . But ive heard its good for keeping you awake. I cant even drink coffee or eat chocolate without it keeping me up. Ugh. I need more sleep. I do know a lady that tried this and said it didnt do a thing for her. Like Catherine said, this is a great forum to see what works for who. Its about all we have😣.

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    • Posted

      Thank you for your reply Tracy. I’m similar to you in the sense my brain doesn’t shut off.. as of now for example.. it’s 5am and I’ve not yet slept - doesn’t help that I got 12 hours sleep yesterday. But I’m umable to reset my pattern without exhausting myself sad

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    • Posted

      Yup thats me too. I sleep good one day, then i cant sleep the next . So when im sleep deprived , I sleep 8-10 hours that night, usually. Love it but it does throw off everything. I wish we had switches in our head we could just turn off and on. 8 hours every night! Lol. I really dont want to depend on sleeping pills. I try to do it naturally. Anxious to try holy basil.
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    • Posted

      Yeah I’m the same.. I’ve only really suffered with ME this past year but insomnia I’ve had for 7.. and I’ve never really liked depending on sleeping tablets.. much rather do it myself. I’ve found m&s to do a wonderful lavender sleep spray if you’re interested.. makes me instantly tired (if I’m not already) and I find it easier to drop off also x

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  • Posted

    If your doctor or specialist can work out (via blood tests)  the parts of your system that aren't working as they should, eg adrenals or thyroid, it may be easier to find either a natural remedy or a medication to help. Naps in the day can be good, as long as they are short. My ME daughter has better days if she is woken after 9 hours rather than allowed to sleep on, but you may actually need that sleep.  Forums like this are brilliant for finding out what works for others, hopefully something will work for you.

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    • Posted

      Thank you for your reply Catherine

      Ahh yes, but for that I need to actually have a specialist.. I’m awaiting a response from a specialist with the hope of a diagnosis .. I’ve been doing it alone so far. . 

      I figured out anything over 10 hours is too much sleep and I’m then tired for the rest of the day. Definitely need to sort out my sleeping pattern again.. it’s just the fear of doing so. ( I would normally go maybe all day without sleeping and sleep early the following night.. but with ME that’s easier said than done 😂😭wink 

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    • Posted

      I don't know about the UK but here in NZ diagnosis is by a process of elimination. It is what you are left with when you rule out everything else with similar symptoms.  Sounds like you have done that yourself.  I do very much hope you don't  have to wait long for more help though.    

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    • Posted

      Yeah is very much the same here and I have finally been referred to a specialist but there’s a waiting list so I’m yet to be seen or contacted by said specialist 😏 wouldn’t have even known about my condition if it weren’t for me researching my symptoms.. I knew I wasn’t making it up and it was something rather than nothing. Glad I did now.. or I’d still be at university making things a whole lot worse 

      X

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  • Posted

    So over the past few bedridden days I’ve definjtely found sleeping less relieves my symptoms .. feeling much better after having had 7hours sleep as opposed to having 12. Hope this helps x 
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