Three years today

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dear all

today marks exactly three years since I was confirmed as having had a significant stroke. I thought I would post a few reflections. firstly I want to say thanks to other longer term stroke survivors with whom I have corresponded on this forum.you have helped me to keep hopeful when nothing much seemed to be improving. it has been encouraging to know how you have  rebuilt your lives. 

I suppose my first year was survival year. returning home after a ten week spell in hospital was exhausting and disorienting. I did not yet know myself as a disabled man at that time and was probably in shock for much of the time. I did manage to engage with my employer, about which more later. I agreed what was supposed to be a  slow phased return but in reality was everything but, and it all went horribly wrong later. Still that was part of the survival journey  I was able, I don't know how to navigate a very difficult, and as I discovered later hostile work environment, and bring in a regular albeit small paycheque.  I was diligent with my recovery exercises and solved a serious pain issue in my shoulder. things improved cognitively and I began to discover a renewed capacity for reading, much to my joy 

years twoand three I would mostly like to forget. I would say for me the latter part was the hardest part of the survival journey. workwise I discovered that things were not well and my relationship with my employer deteriorated. I experienced disablism especially last year , which was cold and shocking. in the end we came to an agreement and I stepped down. it was a very difficult time for me and my family, I am still coming to terms with it. 

however  I was pleased to discover a bit of determination in me and got my OT to refer me to a driveability centre so I could relearn to drive. I spent a lot of time   last year and some money care of PIP on lessons and by the end of the year had a positive assessment and advice on getting my car adapted. so while I am nowhere near how I was pre stroke, I have overcome some major challenges. I have had a lot of help both from my family especially my wife who has carried a heavy load, and from friends who have been great. last year I celebrated my 60th birthday, and was fit enough to have a few people come round to join me for a celebration. So life goes on. last year also saw a significant change in how I understood what had happened to me. I wrote a while ago about becoming disabled. this was a turning point for me. it might sound defeatist but it does not deny efforts that I will still make towards recovery. what I mean is that I began to understand and accept myself as a disabled person, and found this curiously liberating. many people on this site talk about how different things are after a stroke and warn that the old you isn't coming back. there is certainly a great deal of grief in this experience.  it is only by living with it that you, well

 

I at l

 

came to understand how different things are now. it cant be rushed and theres no therapy I know of that makes it a happy experience. the love of friends and family makes it liveable though.

so year one survival 

years two and three:endurance 

year four :) well grateful to be able to start year 4

 the outlook in my third anniversary is a hopeful one. I am clear about some things I want to try to do. I am grateful for being given another day, and I hope another year. it has been incredibly hard, especially the last two years but I feel I have emerged into what feels like a brighter day. I lost my job but I also let go of a lot of stress associated with it. I am very fortunate to have got a reasonable financial settlement so I am not thrown into another crisis. so I am grateful for that. there is much emotional recovery yet to do from that experience, but I have the time to do it now. I plan to get back to cooking and gardening this year. I don't know if I will be able to get another paid job or not. I am fortunate not to be under too much pressure to do that, but it may become necessary, I expect it will. I am not yet at retirement age but there will be all kinds of barriers to overcome to start earning again. but for now I can take my time. I have a mountain of books to read and my car to practise driving. and a fair sized urban garden to play with. so all in all year 3 begins to look hopeful. I intend to live as fully as I can. the stroke didn't kill me  so I have another bite at the cherry. maybe this year I can improve my walke, which was always a great joy for me but is now laboured and exhausting. and maybe I will get some function back in my left hand which is still not working. and if not, I will find ways to live as a disabled man.

 I'll be interested to hear any gardening tips from hemiplegic gardners. and as ever stories from long term survivors are always encouraging. 

So Happy Easter everyone.  an appropriate time to celebrate new beginnings I think. 

thanks for reading, it is a long post but its been a long three years. I fear I have got my sequence mixed up but you can get the drift 

 

with best wishes 

Tony 

 

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Thanks Tony - I very much enjoyed reading your post.  From previous posts, I remember what a terrible time you've been through particularly with work, so really pleased to hear your positive outlook for the coming year.  I wish you all the best and hoping you will achieve your targets, as long as you can reach a happy place it will be a successful year.  

All good wishes Nic xx

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Tony, Many thanks for an honest, heartwarming post. As you know I am three years post stroke as well and, although not working, my experience mirrored yours. My first year was only memorable for its struggles to get back on my feet and do simple tasks. I also had to accept that I am now a disabled man and that was actually difficult. I feel that I have only just accepted this, but feel better for it. I don’t drive or garden, so cooking has been my life saver. It also makes me use my weak arm and hand and these continue to get more stable. Falls, fortunately, have been infrequent, but I have had plenty of near misses. My exercise classes have really help my strength and balance, but I have also learnt how to adapt to my disability. My partner has been a rock, but friends have been very variable in their response, ranging from a little too much concern to downright indifference.

But, as you point out, life goes on. I can walk better, albeit slowly and with a stick and there are still things to look forward to. I alsogive more attention to the small world outside my window and take joy in quite simple everyday sights and sounds. I am most pleased with the current progress in my left arm and hand. Control and ability do come back, but you need constant repetitive exercise to get there.

Good luck on your continuing journey.

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Dear Tony

Thank you for troubling to write down a bit of your story. I really did enjy reading your letter. Its so nice to communicate with someone else who does have a clue what we are going through. As you enter year four there is a lot still to come. I am four months ahead of you. To release yourself from employment is very good news.

Driving gave me a big boost in independence but I cant drive far because my concentration fails. I first drove one month post stroke and I am surprised I cant go much further now. 

I spend a lot of time in the garden. I have a long garden. So my exercise is up and down the garden rather than out to the village shops etc.

The first thing I did was to work out ways of getting up if I fell down. I have a kneeling seat which is good. otherwise I have a fork shoved hard into the ground to help me. I did stumble once, and sort of slid under the gooseberry bush. So I couldnt get up due to the wicked thorns. Eventually I rolled away then heaved myself up.

I have left sided weakness and it affects me more than I imagine. Mainly, my right side is overburdned and gives in rather too easily.

I like the way you describe yourself as disabled. I do that a lot  and it does help in discussions etc.

I get bad stroke fatigue and I cant shift it. Maybe one day that will drift away, but I am not holding my breath.

I plan gardenning to a tee. I grow seedlings on benches/window ledges so that can be done without back ache. I converted a store shed to a potting shed. So again everything is well off the ground. Planning ahead is essential to get seeds, potting compost and water at the right height. I use a lot of troughs and pots as they are easier to access and easier to weed. Geraniums, biz liz, petunias, azalias and geraniums for the toughs etc.

I have a big area which has three veg patches, a fruit cage and an asparagus bed.

Raised beds are good but I cant manage to build big versions. I am so weak its annoying. 

Tonight we had the first asparagus and it is true that it always tastes better from your own garden. My favourite is sweet corn. I gow a lot of that. Eating within an hour of picking is bliss. I do live in sunny Essex which is very dry, easy sandy soil and a warmer climate than most of England. We are by "Constable Country" which is not like the Essex most people think about.

I cant get the whole garden under control, I just get too fatigued. But I have a good go and i think the exercise must be good.

Sharp tools are even more important when we are weakened by disability. And  a good lawn mower. I have a 19" petrol rotary roller and its a bit too much for me to handle. But the amount of grass needs a big machine. Ride ons are not appropriate . The latest battery powered mowers are good. They wont cope with my grass but if I had less lawn then the battery type would be purchased. 

Time for my supper

Colin

 

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thank you 

I really appreciate that 

Tony 

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I find the easiest way to garden one-handed is at ground level.I sit and use hand tools.all then shuffle on my backside, so I get through a lot of trousers. A friend mows the grass and carries anything heavy. It is I important to pace yourself. Take time to sit with a drink and appreciate your garden.

Good luck and good gardening.

 

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thanks, will try at kow level thoughI struggle to get up from ground level as my left side is so weak but maybe I don't need to get down that far. I will experiment. I am happy to get dirty and wear ou clothes. so I guess I will just dive in and see what happens. looking forward to it 

Tony 

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I am looking forward to exchanging gardening stories as the year progresses. I similarly have left sided weakness and am worried about getting up from a low position. I have only had one fall. I am fortunate to live opposite some woodland rare in urban London, oxleas woods in South London. I was out on my own and tripped over a  tree root. with a bit of ingenuity, and the offending tree I managed to get myself up again and back home safely. so I guess I can do it again if I have done it once. a well placed garden fork could be just the thing. 

 I grew some salad veg in pots a few years ago which was quite successful so will try that again. I have a nice south facing strip. so great for tomatoes and cucumbers. 

happy gardening 

Tony 

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thanks so much for the reply. Great to hear that you are making progress with your hand. that is very encouraging. I do get dispirited with that. but the last three years have taught me endurance and perseverance. I am so glad to be away from the bad situation of my former job. I still have some emotional recovery to do from that as it was a very bruising experience. I was never a great cook but it was always my role in the family. I used to cook all the meals. I am not aiming to resume that rol but rather to  let it evol into something new. I have a very small kitchen which I am aiming to fix up so it works well for a hemiplegic cook. we will also invest in a new cooker that I can handle properly. I have an old gas oven  that doesn't work so well now. so cooking will be an important part of my next chapter. 

good to hear from you 

with best wishes 

Tony 

 

 

 

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Today I tended to the Asparagus bed. First time we have had proper pickings of asparagus as they need 2+ years to get to this stage. I didnt grasp that I was supposed to draw soil over the crowns and give them growmore, so I did that today, with a lot of weeding. I knelt on my kneeling chair and used a hooked weeder. The chair allows me to get up. Using my arms more than my legs in order to get up. I am careful not to kneel in one place for many minutes as then I do get pretty much stuck. I still havent fathomed why my legs and back ache so much. No idea really. I also watered the bed using my sprinkler. 

I am in a spell of bad days so I next sowed runner bean seeds and popped them in my window sill proporgator. And I pricked out nine courgettes in to 4" pots.

That was me for the day. These bad spells are so hard to handle. I worked very hard for years to get some recovery and getting relapses in my fourth year is not what I expected. I keep thinking something else is wrong but cant account for anything. I faild to make it to our internet (social) cafe and thats a big miss for me. I nearly always get to that, but today was just too much. Bad chest pains. Painkillers needed, which I generally avoid. Only paracetomol.

Salad leaves are one of the best things to grow. So fast. And useful. My wife doesnt care for salads so I havent done any yet. I have seeds so I ought to try again. I think they can go in my greenhouse. Anything that you have particular joy with ? 

I am growing on plug plants. The petunias are climbing out the flower pots, but its not warm enough for them to go out. Frost will kill them.

This is so nice to talk about something non essential that we both manage to do.

Cheers

Colin

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Yay, it's like Gardener's World - it's very informative!!  Years ago I used to help collect seaweed from the beach to put on a neighbour's asparagus bed - she swore by it!!  

I hope your mood-clouds lift soon Colin, it looks as though the w/end will be really sunny, so we're hoping to spend some time on a friend's boat, messing about on the river, (well the Norfolk Broads actually).  Catch you on the flip-side, hopefully feeling much brighter - best wishes, Nic  ?

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I had some success with tomatoes and cucumber a few years ago  so planning to do that again. I had an allotment pre stroke but have had to give it up. I didn't get very far with it mostly losing the war with slugs that ate everything before it had a chance. grew some pumpkins successfully one year and have previously had some joy with courgettes

might try those again this year. I have a small front garden which I want to flood with summer flowers, an might make a bigger herbaceous border in the back  I have a good bit of tree maintenance to get done at some stage, but I will take my time with that as last time I arranged something I got a bunch of cowboys who nearly ripped me off and insulted my neighbour so that didn't go well at all. my wife is keen on the garden project so that helps, and I have various young adults in the household who with appropriate bribes will do the heavy lifting. I can manage seed planting and nurturing I think. we have a local garden centre which is very good so I am planning a trip over there soon. I am taking a break from driving as I am only just recovering from a nasty cold which has amplified the fatigue levels. like you I get periodic episodes. I won't drive while fatigued. 

I hope you get through the current bad spell soon and the pains pass.  sounds like you are still managing to get a lot done. so you deserve to enjoy the fruits of your labours. 

  I'm currently poleaxed from a visit to the dentist today. physio Monday, PIP review yesterday, which actually was conducted very courteously,, and dentist today. thats enough of assessments for me for the time being so I am really looking forward to my new gardening project. just the right time of year to get it started!

hope you feel better soon. 

take care 

Tony 

 

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I have heard that seaweed is one of the best fertilisers you can get. if I manage to get to the south coast for some days out I will  experiment with harvesting some  though it will probably stink the car out.  well, maybe. I'll tell the story if I try it. 

all the best 

Tony 

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Now getting seaweed in the car is really keen gardenning. Our little beach has very little as it is the mouth of a river. Clacton and Brightlingsea dont have much either. And Frinton doesnt allow seaweed.

I guess my garden has its own built in allotment. 

I lived and still have a house in Harrow. Clay soil and a million slugs. Better here in rural essex. Eltham is one of the few London areas I am not familiar with. The Oxleas woods sound magnificent. What a great thing to have as a back garden. I worked a little in Maze Hill and the journey took me all day. But I liked the people there and have happy memories of that.

I mainly have summer flowers by buying plugs. They come in the post (even fit thru the letterbox) then I have to grow them on in 3" pots which sit in my conservatory. Showing off picture attached, they dont usually look quite that good !

Bushes are a great idea. They dont need weeding and can be green all year round. And if you have muscles in the family then biushes are even better. I struggle to cut them back and I have no help available at all.

Sowed runner beans yesterday. I get White flowered beans which do not attract the birds. Less troublesome. Today (thursday) is watering time. Mondays and Thursdays. Thats usually the greenhouse and conservatory but its been so dry it will be some outside palnts. I did the asparagus yesterday and will do the Azaleas today.

I flatly efuse to drive as soon as the fatigue starts. I plan journeys carefully to avoid being stranded. SF brings a lack of concentration. You are very wise.

I know exactly what you mean about dentist/physio/HM visits and so on. At your stage I thought I would never get a day to myself. Endless medical issues in the bain of us SS life. I keep puting off visits that I ought to make. Even deferring the dentist. I must do better and get on with it.

I am old so PIP is not an option. But AA is and, in my former life, I have completed AA forms for about thirty elderlies. I was an unofficial expert. But new me cant do it. I couldnt get through the form. Age concern rescued me, filled the form with me and I now get the allowance.

I also specialized in personal tax returns. So easy for me in those days. I had done my own returns for 50 years without a hitch. Then the first one post stroke....well I made an error and got investigated. I couldnt explain myself to the inspectors. To my amazement they were incredibly understanding. I had left out £1,000 of government  bond income so they had to treat it seriusly. What they didnt grasp, and I was hopeless at explaining, was that I hadnt left it out , I had put it in the wrong section. So I had underpaid some £400 tax.

At the outset I said I was less than fully capable and that I might need to get someone else to help me. That seemed the magic words. Whether they checked the validity of my disability I dont know for sure, probably they did.And of course I paid the tax immediately. But me getting a basic tax return wrong , I couldnt believe it. I did a few voluntary returns and those "clients" could not accept that I wouldnt do their returns. A few of them tried to force me into dealing with them, even delaying until the last minute when they had no options. That taught me a valuable story. Old Colin is not the new Colin.

Thank you for your kind words. Yes this is a bad spell but I am convinced this will blow over and I will get an improvement soon. The chest pains are indistinguishable from a heart attack. Twice I was blued and twoed and taken straight to resus. No A&E waiting thank goodness. And no heart attack. So now I keep quiet and wait for the pains to ease. I believe it is acid reflux or hiatus hernia. No more lawn mowing for a week or so.

To nicabella..enjoy the broads.

to both of you...keep smiling be positive and thank you for the comapny

Colin

 

 

 

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The attched picture didnt attach. Might try next time

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Hi Colin - as a child I was so fortunate to live about a 5minute bike ride from a beautiful beach, looking out towards the Isle of Wight.  The seaweed was a feature of the beach back in the 60s, but probably isn't allowed these days.  My neighbour used to let me ride her horse and donkey in exchange for harvesting the seaweed from the beach for her asparagus beds - a fair barter for a horse-mad 10 year old!!  Here in Norfolk we have delicious asparagus but it's not quite in season yet - straight out of the field, can't beat it.  

I'm planning to retire at the end of the school year, and trying to sort out pension etc is something that I'm not looking forward to, as I have no aptitude for figures, but it's so important to get it right, as I only get the one chance!!  It's something that my husband would have helped me with pre-stroke, as he's good with figures and had an analytical brain.  I'm trying to convince myself that we can live on fresh air!!  I hope you have fun with your garden, you sound very organised, I'm sure you'll have good results.

Have a good easter w/end, don't let the easter bunny nibble your tender plants ? ?? Nic x

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Hi Colin - as a child I was so fortunate to live about a 5minute bike ride from a beautiful beach, looking out towards the Isle of Wight.  The seaweed was a feature of the beach back in the 60s, but probably isn't allowed these days.  My neighbour used to let me ride her horse and donkey in exchange for harvesting the seaweed from the beach for her asparagus beds - a fair barter for a horse-mad 10 year old!!  Here in Norfolk we have delicious asparagus but it's not quite in season yet - straight out of the field, can't beat it.  

I'm planning to retire at the end of the school year, and trying to sort out pension etc is something that I'm not looking forward to, as I have no aptitude for figures, but it's so important to get it right, as I only get the one chance!!  It's something that my husband would have helped me with pre-stroke, as he's good with figures and had an analytical brain.  I'm trying to convince myself that we can live on fresh air!!  I hope you have fun with your garden, you sound very organised, I'm sure you'll have good results.

Have a good easter w/end, don't let the easter bunny nibble your tender plants ? ?? Nic x

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We rent a flat in East Wittering, right on the sea front and with a good view of the IoW. I really miss our weeks there. I get no better at travel so the three hour journey is not a likely event any time soon.

As a child we had two holidays at Selsey Bill. Year one (1952 and crornation ice lollies) was spoilt because the beach was covered in seaweed. So we went back a couple years later. And the seweed had followed us. It was about a foot thick.

In East Wittering there are several houses that were originally railway carriages. Apparently they went down the Selsey tramway and then a farmer took them by barge, driving his tractor along the beach. There is a windmill somewhere near there.

Maybe I will look out for seaweed. There must be plenty along this coastline.

In the meantime I am enjoying asparagus and the second picking is just about ready. The weather today is a transformation. Summer has sudenly arrived. 

Enjoy your hols.

Colin

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Dear Nic

If I were in your shoes I would first ensure that I have bought my full basic state pension. If you consider additioinal bits of state pension, like K2, additional pens, extra pens,SERPs and goodness knows what else, then check whether or not it will rise each year. Basic pension rises but most of the other bits do not. Not a lot of people know that.

Next, you are entitled to take some of your work pension tax free, lump sum. Once upon a time that was best thing to do, get as much tax free and invest it. But not any more. Just work out what you would get lump sum and how much you would get with that dosh invested. And that income taxed. Compare it with pension foregone and wheter that forgone pension will be increased each yera.

There endeth the lesson. Given by somone who once knew what he was doing but is now brain damaged and likely to forget stuff...so just use it as a starter as to what you look into.

best wishes

Colin

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Ha, thanks for that Colin, I spoke to a FA back in January, but we didn't really go into too much detail, as it was more of an exploratory exercise.  There are some options with teachers' pensions but it will be quite tight whichever one I opt for!!  Maybe I'll sell a kidney ?.  I will be retiring a year early, at 59 + 2 months!! I just don't have it in me to complete my final year, too many stresses . Seriously, thank you for signposting, I can at least ask some questions and hopefully sort out the best deal - I'm not really a risk taker (unlike my very rich - retired at 52 - brother!!)  I may well find some part-time work, just to tick-over - we shall see.  

It's really hot now, I'm melting, hope it stays like this for the w/end ?? many thanks - Nic