Pacing

[SunnyInside]

Hi all,

Am at a bit of a standstill (excuse the pun), with my pacing.

My daytime pacing has been reasonably stable for quite a few months, have been quite happy with how its been working out.

Have been doing really well, but fallen off baseline a few times and not quite back where I was in August.
My pacing includes no social life in evenings, I have a meal at 6pm then the sofa, bath and bed to sleep.
Waking refreshed naturally in mornings hasnt been a problem until these last few weeks. I am dreaming a lot and quite restless, waking a bit tired, and then feel sad as I 'm not refreshed.

If I did anything in the evenings, a long lay in til lunch time would generally be sufficient, followed by a quiet afternoon and evening.

However, recently I went out for two and a half hours, was home and in bed for 10.45pm, slept all night but ws exhausted the next day, and the next. In fact it pretty much took me two and half days to recover.

I am on no regular medication, i sometimes have a non droswy antihistamine when going to bed, which just helps me relax a bit, if for some reason I am not relaxed.

Theres no caffiene or artificial sugars in my diet, lots of healthy foods, and gluten free where possible.

The only thing which I think is different is the daylight hours which have discreetly changed over the past few weeks.

I feel too close to what is happening to myself and wondered if you lovely people have any suggestions, please?

 

[Gavman]

If you are frustrated, be frustrated. Learn to talk to yourself, let go and forgive yourself and others. Its no solution but adding in more self comfort helps the nervous system.

 

[ukxmrv]

It sounds as if you may be going through one of those "change in seasons" down periods. Were you the same at this time last year?

PWME and CFS can find themselves going downhill as we move seasons. Sometimes it something obvious like trying to adapt to daylight saving clock changes (I find this hard) or even the lack of sunlight.

 

[SunnyInside]

Gavman thanks, good choice of words, I totally understand. I think I am just cross with myself for a crash happening when i try hard to keep on baseline. Maybe I am trying too hard? Will put an hour of meditation into today and be kind to myself.

Ukxmrc thankyou as well, I have been thinking for sometime now about the seasons changing and adapting. Have you tried one of those lights which wake us up slowly in the morning? I havent used mine for 8months as have been waking at a pleasant time on my own. I tried it again this morning, but had it set at 7.30am which is an hour after my usual naturally waking up time, so dozed in bed until it came on and enjoyed it for half an hour. I found I was ready to be awake at 7.45am which, today was, sunrise. .

I wonder if being aware of sunrise and sunset times would help in the readjustment, without becoming paranoid?

This time last year I was up and out in first light, walking my dogs and riding my pony, back home and showered ready for work at 9am. (I had however also had flu like symptoms the week before). I was only diagnosed this March when I had chest pains and was admitted to hospital in the Feb.

Thanks for your help both, its good to listen to people who are on the outside looking in.

 

[ukxmrv]

It's a hard one Sunnyside to guess. My experience has been that the light boxes and light alarm clocks made my physical condiiton make worse (low cortisol in the mornings). They didn't help my sleep patterns or the awful morning symptoms I have. Not had a pleasant morning waking for nearly 30 years.

Really don't know what would cause such a big difference between the 2 years at the same time.Unless there are more allergens around this year (autumn pollens?)or less light or more things like mould. Have you had your Vit D levels taken (many of us didn't get much sun this summer)?

 

[SunnyInside]

Gosh Ukxmrv thats 30yrs too long! Thinking of you.
Think I will have my vitD levels done, docs not forthcoming with help as he says i am doing really well. I have been given an address of a recommended company so will get it done myself. Just have been putting it off as not sure what tests to have done etc. Will look into it again.

 

[taniaaust1]

Waking refreshed naturally in mornings hasnt been a problem until these last few weeks. I am dreaming a lot and quite restless, waking a bit tired, and then feel sad as I 'm not refreshed.

SunnyInside.. sounds you need to just experiment and keep trying to work it out. Its really hard from what you said to know what could help you.

Thou you are waking up tired.. are you finding that you are picking up later in the day?

I also wonder seeing you havent had this illness long... whether you've just had a bit of a symptom change (or as you said.. it may be the daylight hour changes your body is still trying to adjust too). Ive found that the symptoms of this illness can reallly change over time... it isnt unusual for it to affect ones brain waves states and that I think may lead to some waking up tired due to not getting into good amounts of certain sleep states during the night. Unfortunately if it is that.. I dont know what you could do about it. If its that.. that symptom sometime may just go again.

Can you work out more on why you are restless? Are you getting a bit of restless leg syndrome? aching? or something else making you restless? I at times get restless due to my legs (RLS or just aches) and in which case sleeping with them up on pillow helps (it does surprise me of how just a very slight discomfort in my legs can cause me me toss and turn all night if I dont have my legs raised at such times).

I suggest if you can.. to see if you can work out more on what exactly is causing you to feel restless .. body thing? or is it a brain thing eg anxiety? high adrenaline? or something else making you restless. If you work out more on what your restlessness is.. it may help you to find something eg a supplement or something else, to help it.

Sounds like you have your pacing sorted fairly well..and know now not to go out till the time you did. Guess that showed you well what you are avoiding by your earlier bedtime etc. so showing just how benefical your pacing is actually being to you. Harsh lesson a couple of days in bed for a 2 hr outting at night. Try to stick to the routines you know work for you with whatever seems to work best for your body.

-I know you said you werent taking meds except antihistamines... but from that wasnt sure if you were taking any supplements or not either. Be aware that some supplements may make people restless at night or even make one to have more dreams eg B12 can do those things
-Also any light in the bedroom (even moonlight or a street light a little bit coming in or the lights on electric thing displays can disturb our sleep).
- My electric blanket being on when I got into bed was affecting my sleep, so consider things like this too. It made me more restless at night and it took me ages to work out it was doing that.