Mine is first thing in the morning when I wake
Same with me. Feel groggy all morning and takes me ages to get going. Never really feel alert until after lunch. Have started eating lunch early which helps then I feel like have a bit energy between 12 and 3 when I try and do things then it's gone again and have to rest/sleep. Weirdly my mind seems to be more alert later when I should be getting ready for bed!!
Me too! When I awake I feel like I have been drugged. It takes till the afternoon to shake that feeling off and be able to walk properly (safely) and actually do anything without hurting myself. I do feel mor alert in the evening but unfortunately the energy reserves are very low so it does take a lot out of me to do anything. People just don't understand how bad it can be - or why it is like that at all. It is so difficult to just live, if you know what I mean.
I am exactly the same as you Elaine. Terrible in a morning, best times between about 12-2 then tired at teatime but active mind at bedtime. I never plan anything for a morning and friends know not to call me until after 10am x
Hi Elaine. Once I get up sometimes groggy, shower, have some breakfast I am ok. Mid Afternoon I run out of energy, Seems to effect my eyes more than anything else. So the pattern is very similar.
Just remember we will beat this thing
Hi there,
I seem to be much worse than most... I can never get out of bed until 1:30ish. At best I can scan emails like this from bed. Any sooner and my head feels terrible and I have no energy at all.
If I am washed and dressed by 4pm I am having a good day.
If I'm going to get any energy in the day it'll be around 4pm, but that's not saying much... It is usually around this time I feel at my best too...
This crap is just so weird and am fed up trying to explain it to people who all seem to have the attitude I should justify and explain my situation to them as if they are medically qualified to understand it - bloody cheek really. I bet they wouldn't like me making them explain and justify any part of their life! Excuse the wee rant!
Mine's when I wake after my afternoon sleep; I feel a lot worse then than when I wake up in the mornings. An occupational therapist explained it that it's because in the afternoon it's not as full and deep a sleep.
Do you sleep through the night?
That's a really good way of explaining it haziej, why should we have to justify ourselves just because the medical profession doesn't understand our diease yet!
Hi Georgia
Only just recently managed to sleep through the night. I take one 10mg Amitriptyline tablet. I also think its the state of mind when I go to bed.
I may have said this before but I take Valerian before I go to sleep at night and I usually sleep through till morning, and that's when I have the most energy.
Rant on if you need to. Yes you are far worse than I am. It has worried me that was not at the bottom of the pit. I am glad to say I have been fealing a little better over the last few days so perhaps I have reached the bottom and has started coming back.
I'm still a morning person, despite the M.E.. I tend always to wake up early, about six o'clock and as long as I start fairly gently I'm at my best through the morning till about 11.30 - 12.00 when things usually start to go downhill.
I invariably have a half-hour doze at about twelve, which definitely helps, and then make sure I take the rest of the day very easy indeed. Any jobs that need doing, including as many of my health appointments as possible, I try to arrange for the mornings but if that's not possible and they have to be done in the afternoon then I know I'll pay the price for a few days....
I think that conserving as much energy as possible and planning days well in advance, makes the ME/CFS as good as it can, be but as we know, life isn't always that easy and things always come out of the blue to mess up the plans...
I think that it's important to let people know when you're best times of day are, so that they don't intrude any more than necessary at times that are tiring and difficult to cope with.
Good tip Mike! Everyone knows not to phone me in the afternoons when I have a 2 hour sleep.
Also terrible on waking, feel as if l,m fighting to wake up and not go back to sleep, heavy, groggy, dress sitting on side of bed, wait, shuffle into kitchen for tea and biscuit from then on its at bet an hour to come round, sometimes 2-3 hrs, to functioning, Sometimes in aft or eve just sit back on sofa and away l go, barely aware till l wake up 30min to 2hrs later, and times passed by.Yesterday slept 2hrs aft, woke groggy thought it was 6am, felt my clothes on and wondered why, finally shook it off enough to realise 6pm. and tuesday, Like you Shreddie l feel as if l,m drugged, and not fit for anything, tried to make a simple meal, disjointed then didnt want it. Evenings a bit better and yes come bedtime dont sleep well, perverse. Can just about remember waking up and feeling bright alert and raring to go, good few years since, Shreddie l think we know what you mean, every natural thing is harder to do, more of a challenge and battle. Fine weather a help, sunny without being hot.
It shouldn't make a difference even if the medical profession did understand M.E. I bet people would still expect us to justify our situation to them.
Like you can explain anything as complex and far reaching to anyone in 2 short sentences. You cannot relate this nonsense to anyone because it is like nothing else in the world that they will have experienced. And for this reason they doubt it can be that bad like they've experienced everything awful you can experience!
Action For ME did a poster a long time ago which went something like this -
"You have the 'flu and
You have the worst hangover ever
And you just ran a marathon - how do you feel?" - Like someone with M.E."
That's as close as you can get really....
Sorry it's a day of rants!
Mornings but also nights when I cannot sleep no matter what I do and when I do sleep I can't get good deep sleep just really vivid dreams like watching television for hours and hours.
Do you watch TV right up until you go to bed.
Worst time for me is morning. Here's the strange part. In the middle of the night, maybe midnight and after, my symptoms get better. So lately, my husband and I have been going out to an all-night coffe shop for pancakes at that time. Otherwise, I'm homebound.
l also feel a bit better in late evening. Making the best of your ok time sounds good to me, great your husband supports you and you enjoy the most posative times together, sounds like fun enjoying late night treats.
Rant away! I have my rants believe me!
If the medical profession took ME seriously so would the public. I doubt that people with MS or Cancer feel the need to explain their ailments, no, because the doctors take their conditions seriously so does everyone else.
And people don't know how they feel either.