Thanks Sandy good ideas. Yes everyone is well meaning I know and yes some are just curious I suppose x
Thanks Colin lots of food for thought and I will mull it all over. Really useful thanks. Ps My vote would be for a Greek island though ?
Sounds good, a Greek Island no less. Was that The Durrels that I enjoyed on TV ?
Colin
Very wise words. You have done so well in such a short space of time. This site is full of generous and supportive people, it helps so many sometimes just by knowing we're not alone.
Best wishes for a healthy new year xx
It is amazing how we all react badly to the good intended expression "You look well!". It isn't as if we had discussed it among ourselves previously, it is just something inside us takes it as an insult that our faces are not showing what is going on inside us.
Fortunately people are much more informed about the long term affects of a stroke, I had several people asking if I was better after a few months but most people my age have had friends and relatives had the same problem so they have an idea what goes on.
Deigh
Good evening Deigh.
The "you look well" that bugs me is when it is a part of a conversation about stroke or our general well being. It is so often a veiled put down. You and I are far along the recovery trail and yes, I can accept the compliment of how well I look. But fast backwards to when we were one yera in. We were trying to recover and I certainly couldnt imagine being unwell for years. I always assumed a recovery would arrive after a few months. Now I know better and the "you look well" isnt bothering me.
Regret that I dont mix with people who understand a stroke. Perhaps the cultures are different. I believe there are SS in the region of one million plus inthe UK. Where are they hiding? Perhaps they did all go to the Isle of Wiight and didnt tell me !
ttfn
Colin
Hi - I have tried to be more mindful about comments I make to anyone who has suffered an illness or 'event'. It is almost an instinctive urge to tell someone they look well, in order to be positive and encouraging - if only we could all remember how infuriating it can be !! (As a child I always had rosy cheeks, so no-one ever believed me if I said I felt ill!!)
However, it's true that stroke needs to have a higher profile focussing on the period afterwards that is so troublesome, with many diverse problems lingering maybe for years. The FAST campaign has certainly helped to raise awareness of the actual event,and need for medical intervention, but it's having to deal with the daily impairments, fatigue, changes, emotions etc that is so traumatic at times. I'm sure people tell Andrew Marr he looks well, (I think he's done an amazing job post-stroke), and I'd be really interested to know how he feels about these comments?
There isn't a "one-size fits all" solution to this; SSs generally find their own coping strategies and responses, each stroke is different and so are our friends and families, all we can do is listen to the suggestions of those who've been there/done that.
Sorry, I've rambled on, but I'm going to continue to try to phrase my comments differently and not assume that if someone looks well, they must be feeling well. Maybe be more aware of subtle body language clues?
Best wishes to you all - however you feel today, tomorrow is another day to look forward to, remember Colin's advice ? xx
Mo, We all know what you mean. I also get ‘you’re doing well’ despite everything being an ongoing effort. We are just back from a Christmas break and on that break someone asked, ‘What’s the matter with your leg?’ Probably because my speech is normal and my hand and arm part function. On a more positive note, I met a woman in her early 70s who was with her husbandand because of her disability I asked if she had had a stroke. Her reply was, ‘Fifty one years ago, but at least I’m still walking’. That’s a long time to cope.
It's a tough road stay in there xxx come on here vent talk whatever you need to
Hi Colin, I know quite a few stroke victims locally, we usually meet whilst out walking and exchange "You are looking wells"! New Zealand appears to be a much easier place in which to live if one is handicapped. It is not unusual for me wanting to cross a road to have cars recognising my situation,stopping and waving me on!
Mind you, I live in a small town, I think you might have less tolerance in a large city like Auckland, but people are much less demanding and 'pushy' over here and I only carry a stick when I'm in big crowds just to make people aware that I need space.
Deigh
I think, Mo some just don’t know what to say as they don’t want to offend (British trait of embarrassment) and they genuinely care for our wellbeing. there is no way they are going to understand how it feels for us until they are in the same position.
I was always a cheerful person, full of energy. At home and at work. Rarely a cross word and a really positive outlook on life. I was reasonably fit, a little overweight, high blood pressure which my gp didn’t treat. Then this thing crept up and hit me hard. The thing is it messes with our being, it affects our limbs, sight, speech and it plays with our emotions. Sad days, depression, Fatigue and more.
Apparently someone close to me said I wasn’t Sandy anymore....inside I screamed I am Sandy.
That was the early days, some days were really dark.
now nearly 4 months later I’m getting better, I was lucky as my limbs were not affected. I exercise, gently. Swimming and walking doing more each week.
So when someone says you look so well, they are being caring and no they don’t understand how we are feeling they can’t do. Just thank them and take it a face value. They mean you look well take it as a well meaning compliment
Keep well everyone and keep fighting this horrible thing
S x
Thanks so much John Jeff, what a great story and I hope you had a nice break x
Thanks so much Sandy, wise words and I hope your recovery continues smoothly x
The "British way" doesnt do at all well for stroke victims. I dont know any fellow sufferers who in any way compare. My village is about 2,200 persons and the next towns have a lot more people. Yet I find no one.
We dont know how to deal with disability. Most people speak to the wheel chair pusher and not the occupant. I have always made a point of greeting those n wheelchairs and it is obviously a shock to them and the chaperone. Something to do with eye levels ?
Continues mild here. Broad beans, strawberry plants and daffodils have all popped their heads aboive the parapet. I keep telling them to duck down as winter is still to come, but they dont listen.
Colin
Hi Deigh - I have known a few kiwis over the years, and I have to say they were a very chilled bunch, so I think your comments are perceptive in recognising the differences in our cultures. Colin recommends moving to an island where SS could live happily, think he's considered IOW, Malta, Greek islands, but never NZ - time for a rethink ?
Happy New Year
Thanks for your perspective Sandy, it takes a lot to be that generous, good luck with your continued recovery, best wishes x
Good advice Wendy very helpful. Wishing you all the best x
Colin, My stroke has taught me a few things. I used to be scared of talking to people in wheelchairs. It may have been a leftover from an unfortunate occasion as a child. I never did pin it down, but having a stoke and very nearly having to spend the rest of my life in one made me change my attitude and now I quite happily socialise with them.
My township is about the same size as yours. There is one major industry a steel mill, and lots of small subsiduary businesses. We have an eclectic mix of races, brown, white, yellow and even a few black. ( Iv'e always wanted to use that word eclectic, even though i'm not quite sure what it means!).
My gardening is similiar to yours inasmuch as the plants do not respect me. New beans planted this year are refusing to do their job seriously but the ones left in over winter are racing up the trellis are producing beautifully edible runner beans. This may come as a suprise to you that over here one can leave the bean roots in the ground and they grow again the next year! It was certainly a suprise to me.
Have a great and rewarding New Year!
Deigh
There is one major difference over here. There is no class distinction so you end up making friends of people you like rather than those you should do. If there is a class distinction it is purely financial and if you have the money you can join the top clubs and associations without prove your worthiness of them.
One of the biggest problems is trying to explain to a Kiwi the common old expression "She married beneath her"!
The significance of it rather escapes them!
Deigh
Dear Deigh
Thank you for your interesting post. I will always try to speak to the wheelchair occupant rather than the chaperone. Come to think of it, I have three friends in wheelchairs and I enjoy their company. I qualified in December 2015 as a responsible person to chaperone adults with learning difficulties. I was on the rota from 1st January 2016. Stroke got me 13th December 2015 so that was blown out the water. I really thought I would be able to do the rota duties within three months. Gosh I was naive in those days.
My village used to rely on an apple factory for employment. There is a sand and ballst company employing perhaps twelve men. Colchester is an easy journey so thats where many villagers go for employment. Trains go direct to the city of London and a handful commute there. It is not practical as the journey is too tiring for most.
We are 99% white. In fact I am an outsider because I come from Middlesex and not Essex.
Over wintering runner beans, how nice. Australia does not have runner beans, too warm. England has runner beans but the winters are too cold for them to over winter. My little corner of England is dry and, generally mild. But rare for over wintering. Runner beans have quite extraordinary requirements of heat, cool, damp, sunny and of course the right type of bee. I do have trouble germinating the beans, as I do sweet corn.
Best wishes
Colin