Duvet Days Gone Wild

[amexdm]

Hello,

Yes those crazy days in bed. I am a real party animal. I had a pretty good week last week, worked all week, wife was in California and I got up and made it to work every day. Saturday I felt ok and did chores. Sat night went to poker and was a little late and went to bed at 2am.

Woke up Sunday at noon and sure hit the wall. I had brekkie and got back in bed to watch TV. Around 2 I woke myself up snoring and thought what huh? So I turned over on my side and woke up ant it was 6pm. Does anyone else have this where they sleep all day? I dont do it much anymore but used to in early days of SAH.

Had dinner and back to bed. Feel bad because wasted a day. However,if I don't rest up, there ain't gonna be more days. Wife was gone all week on holiday. Guess how many meals I cooked?? NONE. Ate out every meal.

I just can't cook anymore. I cant be on my feet for that long. Sad becasue I love to cook. Eating seems to be a function now and not for enjoyment. Maybe some day.

David

[Sandi K]

David it's not a wasted day. Good for you for using the opportunity to give your brain a well needed rest. If your wife had been home I'll bet you would have felt obligated to spend time with her on Sunday and you wouldn't have rested as you needed to.

Sandi K.

[winter]

Funny how so many of us feel we've "wasted" a day, when we have used it to rest up and renew ourselves. I would always encourage it for others, knowing it's sooooo needed, but when I do it myself I still have that "old tape" running in my head, that I should be doing something.

I still have days where I sleep A LOT. Usually it comes after too much activity, a night on the town (few and far between, haha) or cognitive overload. I keep thinking that since I'm no longer working, I shouldn't experience the duvet days as often as I do. Since I'm not as active outside the home, as I used to be, I tire even easier than before! Does that make sense? Maybe it just seems that way because I think I shouldn't be so tired after doing very little!

A bit past the 3 year mark and I still "expect" more of myself than what I'm obviously capable of doing!

I think I've come to a fairly good acceptance of life as it is right now, but still have things to work on.

Might be time for me to re-read A Letter From Your Brain, again!

In my unpacking, I've come across several small boxes of silver spoons (were my grandmother's). Maybe I should find a silversmith/metal worker to make key chains, bracelets, pendants, whatever to remind myself to pace myself and also that the duvet days are "ok"

[Winb143]

David,

It isn't a wasted day, it is a do what you like day and s*d it.

I get up early and feel shattered by 9 am so I fall asleep in chair then it's 11 am and I have wasted a morning

to go out for a coffee etc etc/food. said like Homer Simpson "hmmm foooooood"

Go light on yourself or I will sing another barrow boy song and depress you lol

Be Well All of Us

WinB143 xx xx

[SarahLou]

Hey my Davie Bud,

Glad to hear you had a duvet day, your body and brain must have needed it.

I still can't quite believe I had a duvet day all week last week, I followed my doctors orders!

I've done as I was told, THUD!!

Actually I enjoyed being in my pjs all day, slept when I needed to and read lots, something I've really missed doing. I don't often have enough spoons to read much.

I know that things are a struggle for you hun, but please remember all that you've been through and all that you've achieved. It's great that you're out socialising, playing poker which I know you enjoy and are good at!

Don't be so tough on yourself, it wasn't a wasted day, I'm sure your lil re-arranged brain enjoyed its duvet day!

Take care and keep smiling,

SarahLou Xx

[kpaggett]

I see how I'm doing each day and then decide to rest or not. Usually I do in the late afternoon after I can't put myself off anymore. It's funny though how I don't WANT to need to rest and have to be told to do it sometimes by my husband. He can tell better than me. I too have the tape in my head that says I'm WASTING time. What is the waste? I can think about this all rationally, but living it...

That being said, I relish a day where I can actually dose off. I sleep very little not by choice or opportunity. I think it is all part of the PTSD for me. Falling asleep is so difficult for me now. Waking in the middle of the night only to never fall back to sleep. I chart it as a good day if I get more than 5hours. I tend to get either 3 or 4 sleep cycles. I wake to the minute at the end of one or the other. I used to get 5-6. Every once in a while, I've gotten some nights back so I do still see the potential.

I'd gladly sleep all day. It sounds like a joyful experience.

~Kris

[cathmat]

Hi everyone i have to agree i have no energy it has been 16 months since sah but only 4 weeks since ive had a placement of shunt . i called into work yesterday to see everyone then went shopping , got home had a headache , nausea and exhausted was in bed by 8.30. Im going back to work in 2 weeks just hope i ll be able to manage was doing 4 days before placement of shunt , i feel i need to get my life back now am i being too optimistic ? x

[Winb143]

You can do it Cath, take your time though xx

I am going to clean out bathroom cupboards today, mind you I said that yesterday lol

If you can work after shunt, I can clean my cupboards xx okay I'll be sitting down lol

Good luck from shunters united lol

Love

WinB143 xx xx

[DawnS]

David,

I'm wondering if you feel like you wasted a day because when you are at work full time there is so little energy, time or inclination to get the rest of your life done, so if you've slept a day away it seems like a waste even though you clearly needed it?

I don't know about you but I'm finding that since starting full-time hours there is no energy for visiting; going out; doing housework. So well done for getting out to a poker game! And as for cooking, I'm with you there. Andy has been doing most of the cooking since I went full time. When he is on lates, I usually have pre-packaged meals. As part of the drive to eat better, I have given ready meals up and this week I feel like I've done nothing but work and cook and tidy up the kitchen. Maybe I will return to the world of pre-packaged curry after all!

As for working full-time, there must be some other way to make money. Couldn't we all get together and come up with an sah-friendly corporation? We could all work from home with as many rest breaks as we like, on flexi-time so that if you finally have a night where sleep is not elusive, you can stay in bed and make the most of it. Perhaps we should club together and have a massive lottery syndicate?

[MaryB]

Ditto That Dawn!

I worked a half day today when I came home I crashed on sofa for 3 hours and I DO FEEL LIKE I AM WASTING my day! I know I am not but.........I feel I have so little or not time for the fun stuff when work takes so much out of me. I told someone the other day I am back to leaving the stove burner on or turning the wrong burner off or on ( something about RIGHT FRONT - I must not understand jeezzzzz), leaving the heating pad on all day and night etc.....

As hard as I have tried to do my job and only worry about myself this week I find we are short handed in every department and it will ultimately affect me in my postion. AUGH. In therapy this has been the plan for me to only worry about what I need to do. Sounds easy enough but ........you cannot go up to the reception desk and see a room full of people and not help you know??

Spring is coming though! maryb

[goldfish.girl]

Although I no longer officially 'work' I am non stop busy (although my new busy is different from my pre SAH busy) mentally, emotionally etc. I would have to say, David, that if you didn't need a duvet day, there is NO WAY you'd be able to lie there and do nothing for so long.You would be too bored to just lie there & sleep! Mine can last for a few days and they are by no means a life style choice. If you can do no more, you can do no more!!! The proof would be in that when you try, your words are messed up, muddled & wrong, you cause more mess than you try to clean up. You can't make sense of simple things or conversations & then have no recollection of them afterwards......definitely not a lazy way to waste a day but your body & brain saying 'nope, that's it' for a few hours.

You either listen & give in to it or you make it all worse for many more days to come.....

Michelle x

[Wem]

Hi

This subject is very close to my heart at the moment, so decided to try and open up the debate again!

I have been experiencing really good highs recently where I feel quite energetic and almost, dare I say it, 'normal' Sadly they are followed by deep lows, when even getting dressed is such a major effort.

I guess I need to learn to pace myself more, but how do you know you are over exerting yourself, when you feel good - until you crash the next day??

Any pearls of wisdom or just a knidly word would be most welcome right now,

Wem

[Sandi K]

Wem, this one is so tricky!!

Ever since I joined BTG members have kindly advised me to pace myself. I had no idea what that meant.

On rare days when I had energy I wanted to make the most of it. Especially when I was working. Carpe Diem! Use up that energy and try to catch up on the millions of things I was behind on! And if I still had energy once I came home I carried on doing stuff.

Then the crash would come and my duvet days were spent on the couch in the quiet feeling awful.

I'm still learning about pacing 2.5 years after SAH. I have a list of to do's everyday. Regardless of how I feel I try to get the basics done anyway but I don't push myself to the extreme. I can always carry things over to the next day. I plan my week so that my tasks are evenly paced out.

This seems to be working for me, more so than when I was using up all my energy on a good day. Now, when I'm having a good day I still make myself rest in quiet time. It might only be a 10 minute break and then off again to the to do list but then I'll have another break of perhaps an hour.

Doing this helps to extend my day. Will be interesting to hear from others about this as there must be other methods that work better for some.

Sandi K.

[Lin-lin]

What works for myself is to not look at the brain injury as something that comes and goes. I do not wake up one morning with less of a brain injury than on other days.

Its just that on some days, with careful management, I can acheive more than on other days. I do not consider myself having a fluctuating condition however. The brain injury is a constant, but with the appropriate rest and recovery, I can acheive more on some days.

I do not look upon my brain injury as having disappeared during the better cycles and neither do I consider it returning when I fatigue. It's always there, but I feel it in different ways at different times.

Pacing is something unique to us. My pace is what suits me, but it may be too much or too little for others.

I think it is something we learn over time. It is very important to evaluate our days and recognise the triggers for fatigue (and in my case anxeity) and try to off set the worst elements of it.

Having a baby in August has really thrown my old methods of managing fatigue. The constant demands of a baby are really difficult for me but I am working to improve how I manage things. Every night, I sit down with a pen and paper and go through everything I need to do the next day. I organise as much as possible the night before, to take away the need for multi-tasking and rushing. This morning I recognised how I became flustered when preparing breakfast for the baby and I couldn't find a bib for him. My memo to self, is to put some bibs next to his high chair from now on so I won't have to experience that fluster again.

Even though I am 3.5 years post SAH and had got to a stage where I was managing my fatigue pretty well; having a baby has changed the rules somewhat! I am now carefully evaluating every day, noticing what has a negative effect on me and trying to introduce little changes here and there to make the next day better.

[Winb143]

Wem,

When you are shattered just relax and go with the flow, sing, snore or do what you want to do.

Believe it or not sometimes I feel normal, Hey who laughed ! just kidding xx

Seriously I get up some mornings and want to dance with happiness then other mornings I fall asleep.

We will all get there xx eventually xx

Now smile xx

Love

WinB143 xx xx

[amexdm]

Hi Wem,

I think pacing is truly something we get better at over time. It used to drive me nuts that I would have a good day and then a bad one. I tried to figure it out and it was a waste.

just this weekend I way overdit it Saturday and paid dearly on Sunday and even today. Does anyone find sometimes the second day is worse?

Anyways Wem, you will find what works for you by trial and error. Do what you can on the good days but rest and do nothing on the bad days. Pushing thru the bad days will only set you back. Trust me, I have made that mistake.

I know many have said not to feel bad that you have "wasted" a day. I don't feel bad but I know many others think you've wasted a day if you sleep til noon. My father told me that for 40 years.

Hope you feel better Wem. Take care.

David

[Sandi K]

David I have definitely experienced the delayed reaction of a couple of days. I'll have thought 'I got away' with an especially busy day when I don't feel so badly the next day. But the day after that I can hit the wall.

It really is so unpredictable and I've also thought its such a waste for me to try and figure out a pattern. Looking for triggers as Lin Lin suggests is better way to try and manage it.

Sandi K.

[Wem]

All - Thanks for the words of advice and encouragement.

I have my daily/weekly plan in place and wake up every morning knowing what my priorities for the day are. The main challenge for me right now is trying to add new things into my routine, such as driving, shopping, visits to family, medical appointments etc.

I guess a little more self discipline is required in the planning of the additional activities to avoid the overwhelming fatigue.

Take care,

Wem

[MaryB]

I am finally after 5 days rested up after my 10 hour adventure to visit my son in a small city a couple of hours away. I was so proud and still am that I had this really big day by myself and everything was connecting so well. Also to know it is possible under the right circumstances that I can do it. But boy the fatigue has been overwhelming since.

Pacing, I have tried to pace for years and I wish someone with my conditions would really tell me how they do that. I also have great pain, real pain if I exercise in anyway shape or form for days similar the same degree of fatigue. Like a walk, or such. I have read for years that you must keep up an exercise routine as well and it will make you feel better. Still waiting to get over that hump. I certainly do not over do that exercise at all. I take it so easy on my muscles and joints yet I ache for days upon days like I really over did it.

This is the first time I connected the fatigue with the same feeling of pain from doing anything extra physically. Hum. Brilliant! Or maybe I forgot I have before???

Maryb

[goldfish.girl]

Hi Wem,

I can really relate to what you said. I sometimes have times when I feel like I'm better!! As it's been nearly 5 years, I think it's a reasonable expectation? I can do so much, go for days (sometimes even a couple of weeks) when I haven't needed to nap in the afternoon - and I think 'YAY! I think I've finally recovered'. Then I get smacked over the head with pain & fatigue for several days It makes me feel really depressed & hopeless with disappointment when this happens.

I'm starting to get better at dealing with it. Yes, it's always going to be disappointing to think your on a roll, then be hit hard hard with a reminder that you are not as great as you thought you were but now I try to keep in mind that the crash will pass & other good days will come along again soon.

As for pacing yourself......sigh.....I try really hard to do that. On good days I still try to have a rest even if it's not a nap. I also try to keep my afternoons free as that is my hardest part of the day. If I'm meeting friends or going to the beach etc I always do this in the morning. The problem starts when I have appointments in the afternoon or someone phones or turns up. This messes up my rest time & can affect me for days afterwards.

You'll find your own best way to pace yourself over time. We can't always control outside influences on this but having a pacing plan that you can stick to most days is a good starting point.

Hope you are feeling a little better again today.

Michelle xx

[DawnS]

I can relate to this too, unfortunately when you work full time pacing is not much of an option. I am extremely lucky in that my partner is more than willing to pick up the slack in the house where I fail. I'm sure I've mentioned more than once that he does the cooking, hoovering and the dusting as well as mowing the lawn (which is huge) and no doubt countless other things that I don't even know about. If I was alone or with someone who was not so thoughtful, I'd really be stuggling.

I rarely visit friends, I really have to factor in the thought of chatting for a few hours in one block. I also experience the whole 'getting the fatigue a couple of days later' thing. This weekend, my ringing group actually had nets up and caught birds for the first time this year. For actual catching we start early on Saturday and it meant that I woke up at 04:45. I stayed til the end at 13:00, but had to skip the glass of coke at the pub afterwards so that i could come home and 'sell' my old car to a complete time waster who stayed for an hour, but didn't take the car which i also found very tiring. On Sunday, I had already booked a falconry experince which meant standing practically still for 2 hours. I am still fatigued now, this was way, way too much in one weekend.

I cannot bear the thought of doing nothing with my week other than going to work and so I keep on pushing myself in my time off which only makes going to work harder. I try not to think about it too much as it gets me down. Andy is very helpful in his positive optimism. He points out that this is the pay-off for losing my fear of spiders and the dentist and gaining a love of peanuts and spicy food, which of course reminds me that not all the changes are bad. He's a good 'un that's for sure!

[MaryB]

Dawn, One of the treats for me is to go to my water aerobics class twice weekly. Otherwise I really have no social life. The water makes my body feel weightless and it is such a break from my normal pain. I would say 95% of the time I love my it when I am there. Even if I have a headache and a stiff neck I adapt and find a way to cope in the water.

I also will join the local outside pool again this summer where I can go for a 1/2 hour little dip a few times a week. I am going to try really hard to put together a yoga routine for the water and do it there. Yes, in front of everybody!

Once a week we use to go to dinner with neighbors but that is down to once or twice a month now.

I will after this week have a schedule change of instead of Monday, 1/2 day Wednesday and Friday plus weekend treatments go to Monday , Thurdays & fridays all days 7:30-5:00 with weekend treatments. MY 1/2 days wednesday is my worst day of the week as there are 2 dr.'s and extra staff - too much noise, talking etc,.... I come home from this 1/2 day and spend the rest of it under my blanket on the couch. I however can work really hard on Fridays with a less more compentent (SP) staff and feel better.

My husband does more around the house as well and is very understanding, our yard is huge and I have many flower beds, I was pleased with the drought last summer as weeds did not even grow. I have no idea how I will manage this summer, If I were to rake or pull weeds my hand would be as crippled as my mind is when I am work Wednesdays. I am thinking of doing 5 minutes a day to build up!

I am keeping my head up and planting less and hope I don't fall down the rabbit hole. Maryb

[SarahLou]

Dawn, I've lost my fear of spiders too! How weird is that!

I used to be petrified of them,I shook, felt sick etc etc.

Now.. Nothing.

I want to crawl under the duvet and hide. Not sure what hurts more, the persistent pains in my head or the aches from today's physio.

I think that tomorrow I shall stay under my duvet all day.

Take care,

SL Xx

[amexdm]

Hi All:

I had an "unscheduled" duvet evening last night. Had dinner and laid down at 6PM. Woke up at 10pm. The couldnt sleep so showered and up til 1AM. But it did help. Work was busy and irritating yesterday. My get up and go got up and went.

Wem- Keep plugging, it will get better

SL- Hope you find as much time under the duvet as you need tomorrow

Dawn- I agree whole heartedly. Wife does cooking and cleaning. I used to do 50/50 but cant now. She understands. I dont visit with friends at all, just no energy for that. Dont miss it at the mo.

Sandi- Glad I'm not the only one who get two day hangover. It is just so debilitating sometimes

GG- Pacing is a learned thing, but it seems we can do a great job of pacing and then something unexpected kicks us in the teeth and wipes it out doesnt it?

Mary- Have to try the water thing. Have NO social life. Dinner with wife once a week. Im ok with it for now. I would like to have a "driveway" beer this summer. But when you have a 24/7 headache the beer makes it worse and it's just not enjoyable. I do have neighbors that chill and I WILL join them this year even if it hurts.

Hoping to plant veggie garden this year. Done it for 10 years. Not last year cause SAH. May pay someone this year or do small one. It is one of the things I miss.

Be well all,

David

[MaryB]

That garden plan is really something I need to think about. I would need a fence to guard off the tomato stealing dogs of mine. I think I may try more containers this year?

I mentioned to my husband who I swear now is as tired as I am that I will be mowing with him this summer but I am using the riding lawn mower---- he says we have to get work done on deck first ...$$$$$$$$ the only time we use it at this house is to mow all the leaves in a circle in the fall.

I use to love spring but now I am more like it can hold out a little longer as I am not ready to do any yard work on top of what I already am not getting done!