I am using the tool to fix the tool that is broken

What I have gleaned so far from this smiting. This advice may only suit people with more chronic affects of stroke. I have ten points so far, I have more but I am too tired now to formulate them into a cohesive list.

I am KNACKERED. I am worn out, dismantled, shattered, thrown against the winds, backed up by the seas, chopped up, regurgitated, strewn across the landscape, battered, bruised, drained and scrubbed raw of all my resources … yet I go on. I have survived a fate worse than death. I say that, because for the first time in my life, a few weeks ago, I thought if I were to go now, I’d be in peace. That’s not me. I don’t usually think that way, but the thought snuck in, and I repelled it as soon as I sniffed at its bitter sweetness.

In the past, I had survived all manner of things in my youth I probably shouldn’t have but, I did, and I have once again come up … smiling? Well, sort of, but not quite, come up for air, as George Orwell coined as a popular phrase. Stroke has taught me a lot about myself, other people, and the general way of the world. That, aforementioned, thought is not a negative. It’s actually, for my age, a calm way of accepting entropy and mortality in many respects. Something, I wouldn’t have accepted before stroke. So, what have a learnt so far in my recovery …

  1. Degree of damage is subjective to the personality of the survivor. Someone with little symptoms may suffer enormous anxiety, someone with major symptoms may suffer little anxiety. Everything is relative to the survivor. Nothing is predictable, yet there are predictable symptoms.

  2. Test your limits. No one knows the starting point to recovery until they have tested their limits. That’s the work-board, that’s the time to think about what one wants to do in order to improve things for oneself. Recovery requires grading, it requires measurement. Otherwise, it’s like building a dry stone wall without a plan.

  3. Improvement. One person’s improvement is not another person’s improvement. A smile is just as an achievement as getting behind the wheel. A walk across the floor is just as triumphant as returning to work. A proper cleansing breath is just as celebratory as a day at the supermarket. Improvement is relative to circumstance and the person involved. It can’t be more than that. If my aim is to grow a flower and another’s to climb Mount Snowden, we have both made an improvement to our lives as we see it. There is no universal mark for success, there shouldn’t be anyway, and post-stroke there mostly certainly should not be.

  4. Other people. Other people who have not had strokes, have not had strokes. They are painlessly unaware of what it is like to have the seat of one’s consciousness disrupted in such a way. That’s because the damage has happened to the very thing that we use to think about everything else, they are using an undamaged brain to try and comprehend a damaged brain. How can they? (There are millions of us, and billions of them … it’s a sobering thought). They can be annoying, rude, self-righteous, and impossible. I said to a group of stroke survivors recently, that the most empowering thing about stroke is this; we now have empathy for anyone else suffering from brain deterioration or genetic brain impairment. We can give empathy because we know what it is like. We can make a positive difference to other people who may need it, that’s got to be a tick on our humanity as survivors. We can help others with kindness, empathy, advice, and support because we can. When people say to me, ‘You’re too young to have a stroke’, I reply, ‘I thought I’d get it out of the way, so I can look after you lot.’. That’s just a quip, but I am earnest.

  5. Practice. The brain needs practice. It needs practice in a safe environment. The reason for this is because it expels too much energy in an active environment for the brain to be able to organise itself efficiently enough to log progress. An artificial environment, when I say that, it means doing the same thing over and over again, well past its interest expiry date, until those neuro-transmitters are ready to tackle the real thing. Nothing is easy if your stroke damage is severe, it’s just tiring, infuriating but rewarding graft. At the end of the day, if I don’t do my exercises, I’m doing nothing or barely the minimal. Only if I hate doing my exercises does the whole routine crumble. If I like my exercises, what have I got to lose? Either that, or I do nothing. Stagnate, which I think, personally, is counterproductive. I don’t mean run a marathon, but every concerted effort, over time, produces something. It’s the old cause and effect.

  6. Think ahead. I have been doing this and it has been improving fatigue phenomenally. Imagine what you are going to do. Walk through it visually in your mind, step by step. This will activate neuro-transmitters and thus muscles very gently, but it prepares the brain to use less energy when doing the task or activity. In the morning, I run through my day (in my head), visually imaging what I am doing. So far, it has made things a bit easier. I have mentioned this before when investigating preconceived scenarios. The brain is geared for response, it relies on experiences it is familiar with in order to use less energy. Less energy equals less fatigue.

  7. Push yourself to uncomfortableness and then pull back. Each time is like signalling the brain that it can go further but it has to be incremental otherwise you’ll fall into the boom-bust cycle. A child only learns by doing. A child tries to walk and then falls over, tries again, falls over, tries again and cries. Maybe holds onto something, steadies itself, and then by increments gets going. We are the same. We will cry (internally through fear, panic or lack of motivation) because we thought we knew how to do this and suddenly can’t. But that doesn’t mean we can’t, we have to go through the “crying and falling” phase (not literally) again. Pick ourselves up, and try again.

  8. CBT, if you have anxiety, try a little CBT with an open mind. It can only help. So too with mindfulness, these aren’t foolproof but they can only be of benefit and no harm done. The mind is in a conversation with itself, not always affable. Over the years, we have established, possibly, counterintuitive ways of existing. Now, these ways must be challenged because they are being filtered through disrupted synapses, and not comfortably pocketed in the same way as before stroke. Some enlightenment has to occur in order to reshuffle the deck we have played time and time again over the years prior to having a stroke.

  9. Watch people doing what you want to do. I have mentioned this on the forum before, but when you observe someone else doing what you want or need to do, it lights up those neuro-transmitters ever so slightly, but enough to encourage progress. Also, it’s a good excuse to watch programmes that interest you. Athletes and artists all imagine, visually, in their mind what they are going to do, this is why they win medals and receive standing ovations. It’s just science, nothing mystical. It’s possibly the best starting point to recovery because it requires the least effort.

  10. Accept the down days, the withdrawn days, the bed days, the rest days … don’t fight it. There’s no contract that has been signed in life that something has to be done every day. We, generally, spend a lot of time sleeping anyway. Most people do things for other reasons most days that they would rather be doing something else, and the only reason other people are doing something every day is because their brains are fixed to do that as part of their daily routine. Most people get up and spend their day doing something they may rather not be doing but they are doing that because it’s been hardwired into their brains. True, one doesn’t earn money from being supine but subtracting that from the argument, a day in bed is no worse than a day toiling for something else. I keep pigs, lovely animals, spend most of their day sleeping and eating, highly intelligent, no lesser than any other sentient creature on this planet. If I need to rest, I rest. If Julius Cesar needed to rest, no doubt he did. I am no different from Julius Cesar, apart from the obvious.

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Thanks, Rups :slightly_smiling_face:. I really enjoyed reading this. These are 10 Great Points!. Very, very useful and helpful. :heart:Jeanne

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Glad Jeanne @axnr911, the whole stroke malarky just blows my mind at how complex it all is.

Hi Rups, what a great piece you’ve written, I can relate to a number of your points quite easily. It almost like a handbook of what you need to know following a stroke so thank you for this. I know others will feel the same.
Ann

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@Rups morning Rups, what an amazing read. So very beautifully written. You touched a few of my nerves in quite a few of your 10 points. Thank you for taking the time to write your post and share with us all. I think we all can relate and take something away with us. Many thanks and keep smiling :blush: Loraine

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Morning @Rups . Wow. You help me see sense in the chaos. Just thank you for taking the time and energy in putting this down. Julia.

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Thanks Rups, you have put everything into perspective, did so enjoy reading it and relating to it.
Best wishes, Jane.

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Good morning Rups. I really admire the way you think this whole stroke phenomena through and I choose the word deliberately because no other words describe it adequately! Good thoughts. Lilian

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Rups I really enjoyed this piece of writing which although my stroke is only recent I can relate to all you say.You are an excellent writer too - maybe a new career beckons as a writer.

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Hi Rups, great piece. Empathy, for others, feel I have always, been in touch with my feminine side, grew up with my 3 sisters . Now, yes absolutely more so , feel I can connect more with my daughter & step daughter, both with mental health problems. Good speaking David.

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Rups. Thank you for a well written account of your stroke experience. Much of what you say chimes with my own experiences. I liked especially the section on other people. I think you’ve hit the nail on the head. Those who haven’t had strokes really don’t understand them and don’t have ability to recognise how a stroke impacts. The other day someone new to my exercise classes asked was there something wrong with my left side. I said stroke affected and she said ‘oh’…end of conversation.

Conversely, I’m not too keen on people saying how marvellous I am or what a long way I’ve come. I’m not marvellous, just dogged.

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@Rups really enjoyed reading your post thank you. Some of that chimes with me and makes a lot of sense. Each and every persons stroke journey is different and your post encapsulates this well. Thank you

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Hi Rups an inspiring piece , the sooner you write (joking aside) ‘ The Stroke Survivors Handbook ‘ the better. A while back you mentioned you had to get back to earning a living and your partner suggested getting back into honey production. Gardening in my day was never well paid and I relied on selling honey, unusual plants rustic Christmas decorations, wreaths ( I like to think I invented the hydrangea wreath in the 1980’s which I sold for shillings, ten years later a customer showed me one of those fancy country living magazines where they were selling them for £30 :confounded:. Got rid of all my beekeeping equipment when I returned home in a moment of madness thought my restricted vision would make my beekeeping more exciting than normal. Have been peppered a few times. Now like Sherlock Holmes on his retirement will keep bees near the South Downs. Not joking about Handbook ! Poor sods like us are being stroked all over world every few minutes writing that book is your destiny. Managed to dig up a wheelbarrow full of the wild daffodils that were under threat to plant on our wildflower meadow. Went at it like bull in china shop and suffered consequences. Learning the hard way. Pds

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Well said Rups, positive points for us all to take onboard :grinning:

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Thankyou @Rups for sharing your thoughts and for doing so, so eloquently. I feel like your 10 points are something I could reflect on every day, there’s something in each of them that to me, make sense of the things that many times don’t and, of all those things I get frustrated with or frustrated at myself with.
Plus I’m always happy and grateful to have more “tools” to enable me to progress, improve, understand and reflect. :relieved:
Agree also, that your writings could be those of a book or handout for SS or those needing more insight into stroke.

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Grateful for your words and insight. All the best to you, thank you

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Diolch @axnr911, Jeanne, I find it helps to organise my thoughts, and this forum is the perfect venue for that, and it means I can also look back at stages and steps in recovery. Hope you are well.

Diolch @mum2two (Ann), the whole forum is a wonderful pool of perspectives, I gain a lot from it.

Diolch @Loshy (Loraine), I laugh more than I smile to be honest, and when I smile I tend to do with my eyes but it is there, all inside. :grin:

Diolch @JuliaH, and chaos it is. Sometimes, I don’t know whether I am coming or going. I can only see what’s in front of my nose, fail to recognise patterns or see the whole picture now, or perhaps too exhausting.