Hi, quick question I am trying to find ways to conserve energy to try and avoid having crashes and episodes of stroke like symptoms. With waiting lists so long and seemingly no answers to whats happening to me I am trying in the meantime to help myself while I am waiting.
Has anyone tried loop earplugs and what do you think?
Also any tips on pacing activity, I dont seem to be very good at it?
Hoping everyone is coping enjoying some long awaited sunshine.
Thanks
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Avoiding what they call a boom-bust cycle, I am led to believe, is a way to manage fatigue and allow the brain to attempt pathways without them being cut short by exhaustion, thus, making rehabilitation a longer and drawn out process. I think I was a bit silly in the early months, post stroke, and pushed through times when I should have set myself limits. I never wore a watch pre-stroke, but adopted one after so I could set time limits on how much I would participate in one particular activity. @Pds would use an egg timer. There are also ways to reset the brain using mind blanking techniques, this is where a person might count or sing, or use a part of the brain that isnât involved in processing logical rhythms, and meditation and mindfulness can assist with this. Managing neurological fatigue will come down to what kind of activities you do, what kind of thoughts pervade your daily life, and what external stimuli affects you. From that point, you kind of have to work out what works best for you under your given circumstances. Plenty of people here on the forum have their own techniques and, will willingly share them with you to try for yourself.
I have never worn loop earplugs, I do have auditory overload but, personally, I want my ears to become accustomed to the range of sounds around me. I donât want non-use to affect my everyday as I go about my business, however, I do shut my eyes and close off one sense when auditory overload or tinnitus is severe in order to let my brain work on the problem without being overloaded by a major sense such as sight.
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hi
fatigue
i suffer daily terrible fatigue. i am on a 5 minute rule - do a task for 5 minutes then rest, then carry on for 5 mins. etc. There is also the 10 spoon routine - if you think of each spoon as energy to do a task - so getting up, washed and changed how many spoons. I use up 2 doing this activity. you quickly see how soon your energy is used up in the morning and nothing for the afternoon. So rest. i find lying down resting better.
loop ear plugs
i tried them and found them of no use, it was the same as wearing normal ear plugs. but other people find them usual.
i cannot cope with lots of people talking so avoid or try to switch off and only listen to who i am talking to
rest. i know people on a 10 minute rule then rest. i just have a sit for a couple of minutes and carry on. i fin my legs tell me when it is time to sit and rest
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Hi A/c. Just ordered another box of caterpillars, lovely presents for children. We get them back as recipients go on holiday and see them fly. Being a gardener always had caterpillars in net cages to protect them from mini- wasps that lay their eggs in them. Comma, tortoiseshell, red admiral and peacock. Often found beautiful caterpillars of moths which took some research to find their food plant. Then easy/peasy computers arrived.
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Yes Simon had a funny five minutes a.Clare71 told me you could buy Painted Lady caterpillars on line to keep at home and release as they hatch. We have bought them as birthday presents for children , been a big success. Hope thatâs cleared up my muddled thinking
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Thank you everyone for your suggestions and opinions. It hard trying to manage the fatigue and have some kind of life isnt it. Im finding that as soon as I try to do anything more than the bare minimum I am having decompensations. Like @Rups I tried to do too much in the first six months post stroke and have caused myself more ongoing problems. @SimonInEdinburgh I have started keeping a diary and there is a pattern. I think maybe what I think I can do and can actually do are two very different things. @a.clare71 I will try and put more rest breaks in and see if it helps. I have had a year of regular decompensations and lack of energy, its all so depressing.
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@Ktrean60 fatigue is difficult to manage and it can take a while to work out your limits. If you are having regular decompensations then it aounds like you are doing far more than you have capacity for. Maybe you need to go back to the beginning again and start building up slowly. As an example if you clean one room today then find you are fatigued then that suggests thatâs too much so tou need to do less. Youâll find your limit and then stick to thar for a while then try increasing it and see how you get on. Regular breaks throughout the day are a must. And you need to switch the brain off completely to rest so watching TV or reading or music us stimulation for the brain and means you arenât resting.
I have loop earplugs. They do different ones for different situations. If worn in the right situation they helped me.
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Thank you for some good advice. I think I try to move on too quickly as you say and need to stay at the same level for longer. I wasnt aware that tv and reading added to fatigue, that may be one of the problems for me, as I do read alot. I need to re assess how I am resting.
I have been to hospital several times but they say that I am medically fine, bp, bloods etc and the help stops there. I am trying to help myself but its all so frustrating.
I am going to think about the loops as there seems to be mixed opinions about them. I guess its another âif it works for youâ aid.
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Itâs difficult to imagine that reading & watching TV arenât resting as thatâs stuff weâve done for years without giving it a thought. It stimulates the brain yhough. I try & spend at least 30 mins to an hour each day just sat with my eye closed doing nothing.
Have you thought about an Occupational therapist referral? They can help with pacing etc.
Good luck with reassessing things and really hope you find the right balance for you.
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Why donât you give us a rundown of a typical day, include rehab exercise, computer/tv/phone time, shopping/walks/housework/etc.
This might help to pin point out, not only where to take rest breaks, but also give an idea of how much might be too much just yet.
For months after my stroke I basically took breaks after every single thing I did; 5mins here, 10mins there, an hour somewhere else, depending on the activity Iâd just done.
And there was absolutely now way I could have pushed through and overdo anything. My brain just shut down when it had enough, sometimes I just barely made it to a chairđ
And when you do take a break, shut your eyes too when you can, even if its only for 5mins, to completely block out visual stimulation as well.
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I was reading @EmeraldEyes reply about fatigue, and then I started reading your reply, and when I read that garlic spray works, I momentarily thought to myself, well thatâs a new one. Until I read the last line and it then registered that you were responding to something altogether different. 
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I know, me too!! Glad it wasnt just me
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Hi, initially after my stroke I didnt have the energy to lift for a couple of months. I started to improve but this started 6 months after. Im thinking from yours and other replies on here that I was expecting too much too soon and have just set myself back. Im going to try your frequent rest advice instead of one or two longer rests. Thank you everyone⊠watch this space
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Nor, I am any good at it. I lack enough nerves that give me feedback as to whether Iâm asking to much or too little. I just canât feel enough. I have to wait 48 hours (for some strange reason) to see if any DOMS is going on, so anything new is done very gradually to ease into it.
Iâm 21 months past stroke, and this morning stood still, upright, feet together and eyes closed for 2 whole minutes without support. That is a big deal for me. Presumably you have nerves and proprioceptors / balance wired up and ready to go. So you have to be mindful and aware of what your body is telling you, and pace yourself accordingly. In time you will become an expert at managing your exercises & activity. Trust your instincts⊠nobody knows your body better than you.
Exercise, Qigong, meditation, research, good quality food, good water, fresh air, a joyful heart, and a willingness to work calmly is my recipe for success. Even so, I still get the mix wrong every so often⊠but in that case, my body tells me, and just shuts down for a couple of days⊠Then it perks up again, and the cycle continues
good luck, Roland
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Nah, I canât afford the impurity of chocolate or ice cream ⊠yet. (Yet unofficially, I will have a glass of wine and a chockie in front of a movie if itâs the weekend.) Today I feel like a reward for passing 2 minute proprioception test (much more stringent than the 20 second Romberg test). Also, today I can feel the weight of my foot for the first time. More capability means more refinement of movement.
My reward for today is a extra session of Qigong before teaching,
(wait until next year for a night out at the disco)
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You still needs to take longer rests too. For instance, if you were going to spend 2hrs gardening, take a 5min break here and there.
But then take a 30-60min rest period before doing the next task in hand.
If you go for a long walk, you take an hourâs break after it.
If doing any rehab exercises, be it mental or physical, take a 5-15min break between each one.
And whenever you feel you really canât do something, you havenât either the mental or physical capacity, then donât do it!
Give yourself an hour to see how you feel then.
But donât ever force it, donât try to push on through, because thatâs your brain telling you itâs had enough and to rest. It needs to process and decompress. And you can pay the price for days to come because youâre no good for anything then.
When youâre ready for more in a day, then just add in one more activity to see how that goesâŠand so on.
Gradually, over the few years, you build up your
Thatâs what pacing is all about and everyone needs to workout their own level of pace. Because we are all different and so are our stroke and levels of capacity. You only go at a pace thatâs suited to you now! Not how you were before your stroke, or how others expect you to beâŠtheyâve never had a stroke so havenât a clue 
Donât get frustrated, donât get impatient donât get despondent with yourself, thereâs no point, it is what it is. The brain is a stubborn bugger and just refuses to recover by any other timeline than its ownđ
And for those reasons you donât even try to compete, and certainly not with fellow stroke survivorsđ
Just keep going, onwards and upwardsđ«
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@EmeraldEyes great advice, thank you 
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