Hi Ceri, this is very hard on you indeed. Stroke is unexpected, frightening and affects the individual in different ways and to different degrees. I was a fit 72 year old when I had my stroke two years ago. I could not walk or use my left arm and hand. Fortunately, like Colin, I have recovered reasonably well.i cannot do a lot of what I did, but I can walk so far with a stick outdoors and I walk without a stick indoors. I can cook, bake, make jam and do a little ironing. Unfortunately, I do get post stroke fatigue and need an hour’s bed rest every day.
For me, exercise has been a life saver. From day one I did everything the physios asked of me. The early exercises were repetitive and ongoing, but I did them. It is a case of use it or lose it. When I came home from hospital my left side looked withered and my left calf was skin and bone. Now it is plump and muscular (not that it would win a beauty contest). I have had a few falls but have been taught how to get up by myself. I have not yet injured myself thank goodness.
Encourage dad all you can to do what he can. Is there any way he can get physio at home? Progress can be painfully slow but it can be made. Fortunately, I am a determined old and hope to improve further. My thoughts are with you.
I have had a good day today. My wife and I do not do much on a Sunday, as its our day of rest. Its also turned much colder and is very wet. I have not worked out if I am better in the cold or better in the hot.
The fatigue is a right pain isnt it. I am struggling with my tiny little voluntary job. I always have a "fog" so it is difficult to deal with people. I am a chartered accountant and used to dealing with people easily. Well thats all gone and now I am a chartered accountant (retired). The institute insist I keep the letters after my name, which is a nice touch. They have also given me free lifetime membership, which is a good financial saving.
Sooty Oscarthemagnificent was so miserable this morning. He didnt eat his breakfast. He is an outdoor cat and so breakfast is the end of his busy hours. No idea what was wrong but so relieved he is now much perkier. Having said that, he is snoozing on "his" armchair. I am not used to pets. Do they always pick the most expensive chairs ?
The lengthy name arose because wife wanted to call him Oscar. I got used to that. Then he needed to go to the vet (grief I even cried when I took him to the vet) and the vet said he was healthy and a truly magnificent cat. I then said he ought to be sooty as he is black. Wife loved the name Sooty. Well back at the vets they said we had to choose one name only. The receptionist called us to one side and she said they could put any name on their records. We arranged to have him "chipped" and so the magnificent part had to go on. Hence Sooty Oscarthemagnificent. He ignores all the names equally. When wife goes off to stay with relatives, about once a month, it is very nice to have a living thing in the house. I confess that I utterly adore him. He is part of my new person life.
The "you look well" syndrome is not good. Especially bad in respect of employment. Isnt it disgraceful that people think we are faking, when what we are doing is fighting so hard not to overcome disability. But only another SS understands.
I have a theory that people can not think of you as unwell if you look OK. I reckon its an instinct. Yet those with various permanent deficiences are usually treated OK. In December 2015 I completed a course and then got clearance as an appropriate person to supervise adults with learning difficulties. I was befriending residents at a local home and would now be able to chaperone them. On the rota from 1st January 2016. Well stroke wiped that out didnt it. And I let down all the others on the rota.
Hi Colin - it's lovely to hear about Oscar, he found you at just the right time. Cats accept humans on their own terms, they wrap them around their furry little paws!! We never get to 'own' a cat, they just let us think we do!! Not sure whether I'll have another cat, my previously quiet, rural road has become quite busy, and a few years ago a cat was killed right outside my house and I don't think I could cope with the heart-break if that happened.
We've had a quiet day too - my husband has been tired and a bit wobbly today, so we haven't even ventured outside. He loves to spend time with his plants in the conservatory - it's his man-cave - he's converted a range of plants from soil culture to hydro-culture, and it's his happy place.
It's a shame that you didn't get to work on the appropriate adult scheme, it's something I've thought about doing, as sadly, some of my ex-pupils have been in need of that service. You have given lots of attention to SS and family through your work on this site, many have benefitted from that, although it's not something you would have chosen you have turned the situation around and found a different outlet for your efforts.
You are 100% right about cats. Sooty Oscarthemagnificent adopted us amd nott he other way round. The only way we "own" him is on the chip where I am shown as his Keeper.
Very early on, a black cat was run over outside our bungalow and, for a few horrific moments I thought it was Sooty. It turned out it was his girl friend from next door. The upset for me would be unimagineable if Sooty got killed. Our previously fairly quiet road is getting busier by the week. Our lovely village is being destroyed by eight developments. The biggest is 200 new homes. Sooty does listen for vehicles before crossing but it is still a big danger. Cars go past at 50mph or more despite it being a 30mph zone.
Very impressed with your husbands hydro culture. I am quite new to gardening and hydro culture for me is remembering to water them.
I too use the conservatory for raising the seedlings. I have a modest greenhouse but spend little time in there. When I have the energy then I am inclined to weed, prune and mow. So the greenhouse is woefully under used. And its a long way down the garden.
I know today is not going to be good. So I am getting down the garden for a few minutes before my batteries completely expire.
It is great to hear you are slowly returning to work and that you've received such a warm welcome back by email!
It may be an idea to send round an email to your colleagues prior to your return, with some explanation of stroke, or you could even send them a link to this leaflet - A complete guide to stroke for employers - https://www.stroke.org.uk/resources/complete-guide-stroke-employers
The leaflet explains the basic information on stroke, but also how they can support you and understand what you're going through.
Good luck for your return to the office, try not to overdo things though as I'm sure you aware, many stroke survivors struggle with fatigue.
Hope today wasn't too bad, it's a shame when you already know it's not a great day before you start Thanks for the photo - one day when I'm not so tired, I'll tell you more about the connection my husband has with plants (probably bone-numbingly boring for anyone else !!)
Hi I had a tia still suffering now 6 years weakness right side of body leg gives way arm doesn't work proply all the time facial spasms speach problems toilet problems especially when anxious or tiered ,people say tia full recovery I haven't found this I had a brain stem infarct left side which effected my right side maybe I was miss diagnosed or people like me don't visit this site I've come a long way from dragging my self across the floor I hope things get better for you ,and if you add me as a friend ,I could suggest some things that helped me j.
Thank you for your message - that is a good idea. Although since I've been back, so many people have told me their own family stroke stories... even someone told me that his wife, who is younger than I am, had a stroke last December. Her story very similar to mine. She is also back to work now, part time. I'm really, really loving being able to work again, even just a few hours every other day. Fingers crossed, touch wood and all that, going well so far. I'm sure I'll have a grumpy day soon as I've been cheerful for a whole week now!
I had my stroke in October 2015, at the same time I discovered that I had a large brain aneurysm which apparently I had had for at least 10 years. I agree with the comments. I also get confused and I get frustrated when I am trying to say something and can't get the words out. As a lot of people have already said, I do get fed up with people saying you look well, but my biggest frustration is when people who haven't had a stroke or any personal dealings with a stroke say they know how I feel. I mean how can they?
Together with groups like this we will improve. It's not going to be easy but with the support here we will get through this.
I actually do have a scan of my brain and the scaring as I struggled to forgive myself when I said things wrong or couldn’t spell the simplest of words, maybe it would help you to deal with your colleagues.
Did you have to ask for your doc/hospital for the picture? I've never really even seen one of the scans properly, I would like one. I do have many scar photos though, weirdly proud of them!
I totally get you Stuart about the 'you look well'. I spell it out to people and once I explain the symptoms of how the stroke hit me after discharge from hospital and how it debilitates the survivor, people then wake up. I just constantly educate people about the differnt types of strokes and before you know it they listen on a different level.
One of my lines is, 'a stroke is a brain injury'. I recently attended a stroke group for the first time and I was sharing that because people can't see what's happening they find it difficult to understand that we have suffered a brain injury that is very serious.
This forum is great as mentioned. Let's not be afraid to share. One thing I have learnt is that everyones stroke is different. I have learnt so much about other survivors experience of a stroke and its impact on them .
I heard about Acces to Work Grant through my occupational therapist. I hope to use this for return to work. This is good information to put out as I had never heard of it.
What I have learnt is some people actually do not know what to say ( you might quietly think, 'be quiet then').
I remember reading literature about post fatigue and that it can present itself for many years in fact. Surviving a stroke is a 'long and unknown process'. Remember we are left with emotional and physical scars.
We only ever had one meeting with a stroke consultant and I just asked to see the MRI scan. He was happy to talk us through it, and explained everything. I asked for a print-out of the scan, which he did for us there and then. (If they can't print you a copy, you could take a photo of the screen - this worked well when I had a knee replacement, just did with my phone).
Well said Stuart. I have sometimes said "I have brain damage".
I think humans are wired to see another human "looking well" and then can not accept they are not.
I do have a problem that, if I explain how I am today, then its different two days later ! In act it can be quite different two hours later.
My conclusion is that only another SS understands.
This afternoon I had a group therapy session with people who do have some good info on brain damage. But it is apparent that no one really knows much about brain damage. As for asphasia, I might as well talk to a brick wall.
Nevertheless the group therapy was very helpful. I am still perplexed that my left side is weaker than the right but as my brain compensates I cant do a lot to sort this out. I also hear that aphasia is more likely left side brain damage. My damage is right lacuna.
I am also not sure about how much to rest and how much to push. Trial and error is very hard and takes too long. And I cant fathom what action has produced which result.
I got bitten December 2015 so we are time wise at similar stages.
It’s so lovely to hear your stories, I also feel so frustrated when people tell me I look well. Il bump into someone at the local shop and they tell me I look amazing... blah blah blah! They don’t realise it’s taken me hours to get myself organised to get out of the house.
I also have family members around me who think just because I have energy on a Monday how can I be wiped out on the tues?
Well it’s because they will never understand an SS daily routine, the battles we go through each day, I fight with my head everyday, what to wear, is it cold or not? what to eat, am I even hungry etc.... all this brain stimulation will often shut me down and put me back to bed. But to have someone around me that says oh yes I’m so tired too, etc... is furiating, our definition of tired is totally different to there’s, but try explaining that to them. My ears are so sensitive today, i turned the tv off and sat there in total quiet, out because I wanted to but because I needed to...
Thanks for the photo - one day when I'm not so tired, I'll tell you more about the connection my husband has with plants (probably bone-numbingly boring for anyone else !!)