After stroke, the phrase 'Time is an illusion, lunchtime doubly so", as attributed to the beloved author, Douglas Adams, became a truism for me. Like @EmeraldEyes, early on I was bereft of a good night’s sleep. I’d often, finally, doze off at about 4 am. As previously having had earned my allowance by writing, I didn’t have any set time rules as such and never wore a watch. It was only after stroke that I bought one. I suddenly became time fixated, but that was more to do with the concept mentioned a few times by @Pds in his keeping an hourglass handy for setting activity limits and, therefore, managing fatigue. As for sleep, I tend to get eight hours worth these days at the time my mood and motivation for being upright expires. The first year post stroke, I slept on and off all throughout the day, this was because for the first six months I was bed bound, so it wasn’t sleep, it was just unconscious escapism from the disquiet of stroke symptoms. As things settled a little, I found myself sleeping about eleven hours, I think, sometimes fourteen. As with @EmeraldEyes, I can rise at the crack of a snail’s fart when I need to but by choice I like to ease into the morning at about 9:30 am because it takes me some time to comprehend my mass of matter and its place in the scope of the universe. At the moment, I mark 10:30 pm as my time to extinguish the day for no other reason than that it takes me a good couple of hours to begin to fall asleep. If I go to bed earlier then that, I will wake up at 3 am and, by default, go through a ridiculous routine, for about fifteen minutes, in preparation for the start of a new day before realising it is 3 am and having to put my head to rest again.
The thing is, sleep isn’t the kind of rest for a stroke survivor’s brain that it should be. The brain is, in fact, more activate during sleep than it is during the day. That is why a stroke survivor can sleep and not feel rested at all. The difference between me as a stroke survivor and me before stroke, is that now it makes little difference if I get one hour’s sleep or twelve hour’s sleep, my symptoms are exactly the same. The key for me, is the brain blanking time I commit to before sleep and the brain blanking time I commit to in the morning. This is what I believe provides a satisfactorily beneficial sleep for me each night. But we all are individuals with our individual brain, so what is effective for one person may not be effective for another.
Hi
I agree with you about sleep, returned to my midnight bed time last night, slept well one loo visit about 4.30 back to sleep and awoke naturally at 8am do not feel so tired today but still rubbish as always, so will not go back to an earlier bedtime again waste of time, you are totally correct when you say no matter how much sleep you have you never feel rested at all, i tend to feel at my best between 10pm and midnight which annoys me a lot. still sleep a bit during the day but try to avoid it unless my feeble brain tells me to. Raining again so no gardening will walk later whilst my wife watches yet another episode of James Bloody Martin cooking somewhere on the planet will get wet if i have to. Mucked up up my postal voting forms today, well actually did not, but put the completed forms inside the wrong envelope to post back.
as you can probably gather not having best of days, so very frustrated with everything , on plus side got my beloved Arsenal to watch tonight against Chelsea, still a member though no more trips to the emirates for me, with my son yes I know yet more negative thoughts, cannot escape them today no matter how hard I try.
So please message me people let me know how you are feeling, and how your day is going, well i hope.
Good vibes one and all
Wattsy
One of those days aye? I am on the third day of yet another cruddy symptom glut, so will hobble and wobble to the shops, buy a couple of beers and lock myself to the screen for a gaming session after tea time. Some days, I consider to be a write-off. I’ve never really been keen on James Martin, I do like the Hairy Bikers and was saddened when Dave Myers passed away this year. I also like Andi Oliver and find her spirit uplifting.
Hi @wattsy
Sun is shining, the birds are narrating the day with constant comment, Lea (MrsH) and I are sat in the sun with coffee
It’s the first day that’s been suitable. I’ve uprooted one popup garden bag of sticky willy and ground elder.
It took till 11am to get the motivation to get off my arse - I’m glad I did. I’ve some sense of achievement from both moving and then getting on with it
the bluebells and stones of the path both look better for clearing the undesirables. When the sun goes in the breeze has an artic icey edge that bites.
I think crap-mood/ days have a carry over to the next so breaking the cycle helps with the next day and so on. Clearing the weeds is mainly a one armed undertaking & 100% one handed - I try to support leaning with the affected side and that’s my step towards rehab - so I’ve told myself it’s at least 4 wins: I’m active, there is less to be done next time, the compost is building up (although I’m concerned the ground elder sprouts will grow in it because no way do I get 65°!), I’m done some ATM improvement…
All in all is about how you can see the day. Sometimes it’s a lost cause in which case roll with it, sometime you can choose the best light to see the same events in
NIce one sounds like a really pleasant day, been for my walk and passed a front garden design that will really suit mine when we get it done, just need approval from my wife, hope she really likes it because i do a lot, and it will be almost maintenance free, which is essential for her.
It will get warmer at some point i suppose
I don’t really know, I can’t make any medical judgements as I am not qualified but I do know that alcohol can react with medication, and can reduce the efficacy of some pharmaceuticals, most leaflets explain how alcohol interacts with the medication taken and if it is unwise. I, however, can have two beers over a decent stretch of time (fours hours, sometimes), ranging from 3-5% and so have made the decision in my post stroke world that if my life expectancy was now, potentially, reduced, I wasn’t going to deprive myself of the few pleasures I have in order to stretch that expectancy out any longer than it needs be.
There are some quite decent zero alcohol beverages too which are worth investigating.
Was told recently there’s a very good A/free Guinness. Have the odd bottle of Doom Bar, once a week, occasion glass of wine and thimble full of a good malt whiskey once a month. It’s just common sense I feel. Had a tooth out today was a good distraction, cost me £130 . Got home to zombie land , could not sleep now eight hours on , coming up for air to suffer the Archers The flipping Archers.
But tomorrow know I’m up for anything life throws down on me.
the Guinness is very good, love your common sense on the odd beer wine and whisky, like it so much may well follow your example.
Hope you recover well and have good day tomorrow as for the Archers that is simply out of order
@Barney2
If only someone could tell us when the fatigue will lift. I’m 1 year since stroke and fatigue is still bad.
However you do start to manage it after time passes, also it’s so long since I felt normal that you start to forget and get used to the new tired normal.
Try to remain positive that it will improve it’s just soooo slow.
Acceptance is difficult. Grieving for old self.
did a spot of garden work this morning helping a friend out just transferring a big bag of cuttings from the bag into the wheelie bin, did about 40 mins, absolutely shattered me very dispiriting to say the least, want to get back into the gym, for treadmill and static bike but after today think its just a pipe dream.
Forgive me but I can’t remember when you had your stroke but I want to congratulate you on helping your friend with some gardening work. You should be proud of what you’ve done. Getting back to the gym is a very achievable goal for many & it sounds like it will be for you too. Stroke recovery needs patience & learning to manage fatigue is really important. Factor in rest, find a level of activity you can do & stick to it for a while then push it a bit further & do the same again.
I suffer a lot of fatigue but can manage a short stint on a static bike. I can’t dp treadmill but that’s an issue with my left leg not my fatigue.
Try not to be so hard on yourself. Small goals will become bigger goals. You’re doing great.
Thank you very much, having had time to reflect on the issue, think part of the problem may be to do with food intake and at what time it is eaten, currently have overnight oats as breakfast with all sorts of fruit added in , much as I love it, it does not on its own give my morning a kick start or an energy boost, so may have to look at what I eat in conjunction with what i am, doing during my day, and at what time so if gardening at 10.30 take on fuel 9.30 in readiness and have a protean bar ready for afterwards, which may mean having meals at odd times where I would normally do so, think that all makes sense. I used to tend my friends garden pre stroke and I now go round and we potter together, have a cuppa and some lunch, and chat for a while therapy for me and it keeps the garden looking nice.
Had my stroke in early february this year so not long into recovery.
Many thanks for your lovely reply and hope you continue to make good progress.
Wow, if you only had your stroke in February you are doing amazingly well. That’s not even two months yet. I could barely get out the chair at that point.
Nutritiin can definitely play a part in fatigue levels & it may be you need to adjust your diet & meal times. You’ll work that out as you go & find the optimum for you.
Fresh air, vitamin D & seeing your mate are all good for your mental & physical health.
