Perceptions about recovery

Jennifer I admire you for working in a polling booth, I would find that strenuous both mentally  and physically I believe part of our recovery is pacing ourselves.  Stroke fatigue can be hard for non stroke people to understand.take as much rest as you need.stay well. Jenny

In hindsight working the Polling Booth was probably a mistake. I've spent more time in my PJs this week than ever before. I put my finances above my health. 

My medical costs have made finances a real struggle in recent months. The $$ from election day will take a bit of pressure off.

HI Feel for you that bang and bust cycle is so hard to break. Before my stroke I was very impulsive so I do this now to help.

I use my voice memos on my I pad to say what i am about to do for the next day, If it is something out of the ordinary, 

and then review if it is going to work or be too much for me. For me its about saying the words.

look after yourself 

Hi Jen - take a look at Facebook. Your question started a huge thread. Over 118 comments. 

Karen Michelle

Spoon theory is worth reading about.

I explain it like this... I can do almost everything I want/need to do, but I can't do everything simultaneously, on the same day, in the same week, in the same month. In other words, I need to make choices about how I allocate my 'spoons'.

I think for people like Jennifer's contact, if they see people living with stroke, doing some things, at some times, they presume we can do all things, at all times.

My best advice; stop trying to explain or justify, or be validated. State things as fact if/when people have a particular need to know. If you're after understanding, find your people!

Spoon theory

Letisha Living

I can completely relate to this, especially in the first few years.

I used to explain that my brain has sustained an injury, there is less matter for it to make my body function, and my body is healing from my stroke, which also requires more energy and sleep.

I find the “you look normal” part by others to be a bit condescending, like I shouldn’t be doing as well as I am after my stroke. It just gives me an idea of what their perception of stroke is…

I find crowded places with lots of noise tend to overwhelm my senses and bring on neurofatigue, even almost 10yrs later. But now I’m aware of what triggers my fatigue, I can plan ahead knowing I’ll be super tired after certain places, events

Belinda Jane

I call it neuro fatigue and explain that it’s brain fatigue, that my brain is like a battery , when the energy is used up , I need to stop, rest and recharge it.

My fatigue is very visible in my face , body and my functions , from speech to processing info to movements and my family and friends understand it very well and step in to help out when needed.

I’m 7 years on now, I have a good understanding of it and what causes it and I’m better at managing it than I was . It’s still a daily battle , but people understand that it’s just part of me now .

Ive written about it and made videos which have helped people to understand it .

Elisha Deegan

My stroke was nearly 13 years ago now. I still have fatigue and have to manage my energy wisely. One of the things that I also have is that my body gets heavier the more I use it/ as the day goes on. I liken it to being like wearing a cast on my arm and lower leg at the beginning of the day/ activity and then as I continue it becomes a full length cast, then a small child on each limb then a big kid on each limb. I think it gives people something tangible to imagine and a way for them to understand why I get so worn out from seemingly simple tasks

Jo Barron-Perry

I’m exactly the same but my stroke was 4 years ago. A friend put it like this - “ we all have a tank of petrol but my capacity any day is now only 80%.

Therefore depending on my surrounds like sensory overload - from noise, lights, talking, concentrating, without regular breaks, means my tank is reduced and the effort used means the next day may be a wipeout.”

Diane Windelborn Powell

Hmm, I don’t have an answer for your question Jennifer, but I do know that my family keep a close eye on my brother who had his stroke 12 years ago next Monday. I’ve noticed over that time he slurs his words when he gets tired and can’t concentrate and now and then sleeps a lot which worries me, cause I think is he having another stroke.

This is probably how it is for you to and I’m sorry I’m not much help to you, take care x

Linda Aitken

Can sympathise with u , same here .. The one suggestion that helps me a lot , was to get ear plugs .. Crazy as it sounds what it does for me is it , deadens down the noise levels , so my Brain doesn't have to work so hard .. Its the mental stimulation that makes yr Brain fatigued & the all the movement around u , it makes yr Brain overwork to keep up .. ..

Yes it does get easier to manage, but also l tend to avoid putting myself into situations that will overtax me if l can help it .. Stay Strong yr brain is an amazing thing . xx

Robyn Luxton

I had my major stroke 19 years ago and I still have "stroke days". The doctor explained to me that because my brain is damaged, I am using another part of it to constantly maintain my balance, get my leg to walk and get my speech to sound as normal as possible. People that know me know when I trip when I walk or my speech starts to slur, I'm getting tired. I've given up trying to explain it to others, I just say it's a "stroke day". Unless you've been through it, they'll never understand

Karen Jacobson

I explained it to someone like this I said when you break a bone it is weakened and somehow develops arthritis right they said yes I said well when you have a stroke part of the brain is broken for a while from them on like the bone it is a little weaker and gets tired

Tracey Troon

My husband had his stroke 6 years ago and he still suffers from fatigue. We don't have a bug circle of friends but they all understand as do family. Sorry, don't think that was helpful

Meliame Tauali'i - Fifita

It is hard when people don't understand. I had my stroke in 2016 and some people tell me I should be back to normal, little do they know people are different and people heal at different rates and not everyone is the same. Heads up and just keep moving forward even if it is only baby steps but it is better than nothing.

Ness Lee

My stroke was a little over 7 years ago. I have explained to my family and friends that my life will never be the same as it was before. Some get it some don’t. I still get tired a lot and listen to my body and my brain and do what it tells me I need. Some people will never understand no matter how much you explain it. Good luck with your road ahead x

John Jenny Max Wentworth

Listen to your whole body , I'm 5 yrs post stroke & 46 yrs old , even today I still get fatigue , my neuro in his words were 'your injured , tell people its like them having a knee reconstrution , but its a hidden injury to everyone else' , you need rehabilitation on your brain & ( maybe) body. Don't burn yourself out , take your time , I lost sight temporarily, function done my right side & couldn't complete a sentence for weeks. When your tired rest . Goodluck , with your recovery.

Celia Hall

I’m three years post my stroke with no visible disabilities and I still suffer from fatigue at times. When I get to this stage then my deficits are noticeable. I find that explaining the way you feel is hard for people to understand. They will come around. Just know your limitations and do what you feel can be done and rest when your body and brain are telling you.

Jen I still suffer from fatige , evev after 4.5 years , yes you can have post fatige for may years unfortunately , if you call suddenly sleeping in the afternoon or headaches 4 times a day , its just your dfriend is iognoralt to the post results , fatige is a way to tell your body to takle it easy .