Rest rest and more rest. Slow slow slow. The necessary recovery mantras. How you manage a days work I dont know. I cant get close to that sort of effort.
Given the main diagnosis "post stroke tiredness" is somewhat mis leading. For many, including me, its utter fatigue together with dizzy spells. And loss of memory. perhpas we should be diagnosed as part of brain is AWOL.
Colin
I find therapy and relaxation a boost and a boon. Hypnotherapy. And stroke specialist counsellor are high on my priority list. I had PTSS and would not have identified that. I thought it was for soldiers and others exposed to extremes. But no, it is the shock of the stroking that can plague us. Yet which of us even mentions stroking ? Bless the NHS counsellor who got to me in the early days.
Colin
Hi Colin - I really believe that all the discharge teams - OTs, physios, nurses etc - should make more of SF. No-one mentioned it when my husband was discharged, I was so ill-informed, ignorant and unprepared - my husband is very stubborn, BUT if he's told something by a medical professional he will take it on-board, but when I try to tell him he tends to fight against it!! It would have been so helpful for the early discharge team to reinforce the importance of rest and more rest, and then further rest!! Thank goodness that so many SS on this site promote lots of rest - whenever and however you can manage it.
Have a good evening, Nic x
I know sleep is very important and I have found that I need at least 7.5 hrs as well. Lately I find I am falling asleep during the evening which doesn’t help. I go to bed about 11:30 but wake about 1am and then I seem to doze on and off till it’s time to get up about 7:30. So I think I need to stay awake in the evening if I can.
I might try a small drink because you’re so right your brain starts going at 100 mph for no reason. I still have horrible tinnitus which gets worse when I’m anxious or muddled, it’s a right pain.
I think I’m getting better at coping with the anxiety because of the advice on this site and also realising so many of us have the same emotional as well as physical problems from the stroke. I’ve noticed I’m getting more clumsy, I’ve got funny tingling in my fingers, and loosing my balance occasionally which I presume is another symptom of stroke. I do worry about having another stroke though.
Anyway I feel things are generally settling down and am trying to stay positive.
Thanks for all you advice Colin it helps so much.
Ann.
I do keep it to a small drink. Whisky works for me but it can do the opposite for many. Sherry is soporific, but I dont like it watered down.
I had completely overlooked the whistling in the ears. That is less notieable if sitting in front of TV> I dont have full blown tinnitus, but I do get endless whistling/humming and it keeps me awake.
So we are both 7.5hrs !
I found that I get tired at about 11.20 so I retire at 11.15 and tru to catch the sleepy spell!
I can clearly tell the difference between stroke tired and sleepy tired.
If I lack sleepy sleep then lots of things go to pot. And the SF worsens. Yes, trip over things, cabt get the words and forget what I am doing. So sleepy sleep is essential. I also love stroke sleep. So deep, no nasty dreams and awake refreshed.
Colin
Dear Nic
My diagnosis says post stroke tiredness and left sided weakness. Which I guess tells me what I am suffering. The term SF has in fact originated from me, not the medical profession.
So I get a kick out of so many of us using the term. The data showed 65% suffer post stroke triedness but all the regulation type strokes seem to have it. So I dont know where the 35% have gone.
On the old forum I instigated a section "what does your SF feel like" and we all described slightly different things. My favourite was "feels like my head is in the washing machine". Many suggested fog, mist or stickyness.
I do get concerned that I give loads of "advice" which is purely my experience. I have no medical qualification at all. And I dont like to overwhelm SS with all that might follow when they need to get through the early stages first. Then there is a separate consideration for the carers. Again, I dont want to overwhelm with tales of possible woe, yet some forewarning is probably helpful.
On the old forum nearly all were the actual survivors and very few were carers or family. I fear that the new forum is just too much for recent SS to handle. No way could I deal with this site in my first year, had it been in operation.
With the huge incidence of ME sufferers maybe SF will start to be considered.
I went through years of concern as to whether I should deal with my physical disability or my mental disability. I couldnt cope with both at once. And I now wonder if my attention to my own SF is in fact part of the problem. There is so much to learn.
The follow up for us SS is hopeless. The NHS is being squweezed so hard and the requirements of an SS are so lengthy.
I do often think we are the poor relations. Then again, I have escaped quite lightly (well I think I have).
I can tell sleepy tired from stroke tired. I can also tell what is memory loss from stroke as opposed to ageing. Havent had anyone else who can feel the difference. I struggle so much with SF. How do others cope when its mixed in with sleepy tired.
I have enjoyed a few precious hours when the SF lifted. There is something in my head thats not right. I want to get my hands inside my bain and lift the fog. Still hoping it will lift sometime.
Another massive decision is when or if we stop looking for medical treatment and start living the best we can with what we have got. I have opted to live the best I can. Not at all convinced I am right. But thats what I have chosen. Its surprising how much discomfort can be pushed to the back of ones mind.
Today is a poor day and I have had a long dental session. That was hard. The drive was hard and being sensible for the dentist/nurse was hard. I had only recently visited the dentis, three years after the last appointment. I couldnt travel so I have a new dentist. Its all hassle when I just want to crawl away and rest.
So much to learn. Should the medical staff add the impossible SF added to it ??
Best wshes
Colin
Didn't sleep that well last night. Back downstairs at 2am. Watching rubbish on TV. Back upstairs about 3.30am listening to my audio books managed to sleep for about 2 and half hours at a time. Got up a 8.30 am.
Been tearful on and off today. No idea why! !!!
Lots of positive news my husband got awarded his PIP. My nurse re-registration and revalidation sorted Insurance company agreed for me use my own car for refresher driving lessons.
The deep joy of stroke recovery. Made sure I smiled went for a short walk and looked back at my daily diary of every day things completed. In the beginning about 10 - 12 separate tasks achieved each day. Now 18 - 22. I caught myself thinking that my hand doesn't do this or that very well. Then a quick memo to self there was a time not so ago when my hand in fact my right side didn't move. Bottom line celebrate what you've achieved and accept the bumps in the recovery road. As you have all reminded me there's always someone worse off than me. Thanks for the common sense xx
I am about to shower (9.30pm) I sleep better after a shower (or bath!).
I record programs I like to watch and then play them during the night, if I am not sleeping.
Getting enough sleep is essential. If we fail to get the sleepy sleep then SF etc gets rampant, so all our efforts are wasted if we dont get our quota.
At the moment I am in a spell of ten bad days. I thought I had gotten over the worst, now I am reeling. I read my stroke diary and at exactly this week last year I had a bad time. And the year before. And yes I am verging on the tears, which hasnt happened for many months. Poor sleep, bad days = much going backward.
I am looking forward to better days soon.
I think you are doing too many tasks. A lot too many. Rest rest and more rest. SLow slow slow. And keep those smiles coming.
Colin
Thanks for the advice. I'd love to do less. But if I don't do it it doesn't get done. My husband is disabled and not able to get off his bed. He has carers twice a day to do the essentials for him. But cooking, washing, ironing etc.etc gets done by me. Looking forward to when he gets his new prosthetic leg and can walk but until then I will keep smiling and doing what I have to do. Sorry to hear you're having such a rubbish time. But in a totally selfish way it helps me know that I'm not mad it's just stroke recovery at it's best! !!!! ????? xx
Oh Kay, How do you manage ? You are so strong.
You must be crawling on your knees. No wonder sleep is hard.
Circumstances do not change your need to do less, it is "just" stopping you from the rest and steady recovery that you might otherwise aspire to.
Then again, I often wonder what would happen if I ignored the fatigue and went ahead . Maybe I would recover quicker ? In the first year, doing too much did put me back in an ambulance more than once. I guess we are all different and all floundering around whilst trying to do our best.
At least a smile will work for all of us.
Bless you Kay
Colin
Not crawling on my knees thank goodness. I'd never get back up. I'll keep in mind your cautionary tale.
Hi Kay - you are in a very tricky situation, and certainly not 'mad'! I have a friend of a friend in a very similar situation to yourself, a SS who has resumed her role as her hubby's carer, (he has dementia), I'm always worried that she is going to overdo things, and that she doesn't have enough time to concentrate on her own recovery, (stroke was May 2018). I'm basically a very lazy person, an absolute genius at finding short cuts in terms of housework, cooking, laundry etc and I think this has worked in my favour, because I've had to prioritise so much during this last year. So hopefully you will find your own short cuts, or I can write a self-help book about how to avoid doing stuff and send that to you ... ? (I rarely do any ironing - my wardrobe consists almost exclusively of items that just hang up to dry then go straight into the wardrobe without ever seeing the sight of an iron).
I've rambled on here -ha, all mouth - but think I'm trying to say, go easy on yourself, I realise there's lots to do, but you need to think of yourself and be well enough to enjoy time with your husband when he is mobile again - I hope that's soon.
I'm awarding you an evening on the sofa, with a tipple of your choice, leave all the jobs and snuggle up! xx
Thanks for the message Colin. I know you always take care to stress that you are stroke survivor and not a medic, but your words have become gospel for me!! I genuinely didn't realise that you had coined the phrase SF - that's surprising - it should be a medical term because it's such a feature of post-stroke life.
Hope you're feeling better after the stress of the dental work ? take care
I accept the award. I have a lovely cleaner who comes once a week. I do the daily stuff. In my dreams Mike will be able to make me a coffee by January next year. xx
I've awarded myself a sofa evening as well, just to keep you company ?. When you get that coffee it will be the best ever, it's the simple things that mean so much. I felt really overwhelmed the first time my husband made a meal post-stroke, it represented so much at many levels, so make sure you enjoy that coffee!! Wishing your dreams will come true, wishing really hard xx
Thanks for your kind words. Almost three years for me now. When I was in the early stages, people on this site were so helpful. They were my angels. All I do is observe and repeat. I noted the way we talked about being tired whereas we all felt, well cream crackered. So I talked with others and we came up with stroke fatigue. Which then became SF. Nothing really is my own coining. I do think SF decribes our problemmuch better than "post stroke tiredeness".
Each and every one of us has different symptoms. Maybe similar but no two will ever be identical. There are trillions of cells in our head. And each persons cells lay in slightly differeing places. We then get a million cells zapped by stroke. The chances of the same location for a million zapped cells is infinite. And even then we probaly "use" the cells differently.
Had an hour chat with a Mum whos daughter has ME. So many similar symptoms. But the end story is no one knows how to treat it nor how long we will suffer. It is up to you, me and a small gang on here, to help each other along.
Best wishes
Colin
Thanks! It's good to have a spot of solidarity for us girls. Falling victims to sofa glue oh how bad is that? ???
I'm sure you'll be right about the coffee. Any coffee you don't have to make always tastes better. Tomorrow I'm awarding a Strictly evening to those of us who are interested. ??? xx
Ha, I refuse to be a victim, I voluntarily sit on my sofa ? glueless ?
So many good celebs in this year's Strictly, I love Kevin and Stacey ???
Hoping that my husband is going to make coffee and walnut cake tomorrow ? that sounds like a great w/end to me!!
sleep well hope the hypno works xx
I’ll join the Strictly evening, can we have wine tomorrow?
Absolutely we can have vino. It would be rude not to, dahling - bottoms up ? xx