Hi my name is Steve and I am a first time stroke survivor, it’s not a membership I would recommend to this club, the fee is a bit on the high side, one stroke or two!?...i wanted to use “They call me MR Tibbs” as my user name but it was to much to type in each time I logged in , and I didn’t think anyone else would remember the film or the fact people might think my name WAS… tibbs!! I don’t do face book or any social media can’t stand the crap they come away with on there, people looking for pity when they broken a nail or something just as stupid,” sorry to hear that hun”!! Pish!!!Posh!!!...but this site is different, it’s sharing an experience with like minded folk who really can relate you to what you are saying, like all of you I have my gremlins , dark ones and grey ones and light grey ones, I find if I let enough of the greys out it helps keep the dark ones in their box. each week I find something new I can’t do, only yesterday (4 months since my shut down) I found if I lay on my back I can’t lift my left leg up or if my arm is laying at shoulder level palm up I can’t lift my arm Weird or what???, I’ve done some dopey things like put the tea pot in the bin instead of the teabag, put the peg bag in the freezer instead of the cupboard which is next to the freezer and I find myself saying “you tit!!” every time I do it, I find it better to laugh at it rather than worry about, up to now I haven’t done anything that would endanger me or the dog….or the wife !!! Carrying cuppa teas still a bit iffy, I spill more than I drink. I remember dating women like that , I started dreaming again which was weird because I hadn’t noticed that I had stopped till I started again, I used to dream all the time, usually I could dream a solution to a problem I was having, unfortunately my first dream was one of those dark gremlins I told you about, it was all about how I came to pay my membership fee, I had gone into hospital for a colonoscopy then an Gastroscopy (camera up camera down if your not sure what they are) I had the gastro first and I wasn’t properly knocked out, I felt the item being pushed down my throat and could hear the nurse telling me to relax and it would make it easier but I was struggling to breath and tried to move the tube with my hand only to feel the nurse push my hand away, so I did the only thing I could think of and push the tube to one side inside my mouth with my tongue, that may be why my mouth got affected and continues to tingle even 4 months on, I remember being stressed and not being able to say anything as my throat was in pain my mouth was in pain and was glad just to be breathing again and now they were ramming a camera up the other end, it wasn’t to bad to begin with but as they reach the top of my gut it was really sore it only lasted a few seconds but felt longer , I remember the camera being remove and someone cleaning me up back there and then I blacked out and that was my first dream! I woke up struggling to breath with my anxiety scale over the top panicking in case I was about to pay another membership fee (am a Scotsman we don’t like paying) once I realised I was at home and sheena made me a cuppa tea I managed to relax, the rest of the story was once I woke up in hospital told them about my hands foot and mouth all tingling and they said that it would just be the anaesthetic wearing off, I got dress struggling to use my left hand stood up and promptly fell over, they loosely tested me for a stroke without saying we’re testing you cause we think you have had a stroke, then sent me home to defrost from the anaesthetic, less than 12 hrs later I was sent back to the hospital by my doctor saying that I had had a stroke…..well that’s my story, don’t know if anyone can relay to it but, it was a good exercise just to tell it, that an other one off the bucket list!!
Hello Steve. Thank you for your post. As a fellow Scot, I chuckled at bits of this. I had my stoke 10 weeks ago now and still in recovery. Like you, there are MANY grey moments and I am finding recently, they are becoming worse. I hear that it’s normal so have started to embrace them (apparently having a meltdown in a restaurant in St Andrews isn’t acceptable!) I find letting the tears, screams or FFS’s out really help me (not so much those around me when it happens!) and I can get on with the day rather than stifling them and letting them build up which makes it worse. Keeping that Scottish humour will def help too.
Good luck with your continued recovery.
Thanks for your reply, like you say embracing the moments knocks the embarrassing feeling you get for not feeling as butch as you once were, and it helps reading about others even more knowing that your not the only one doing this, my big melt down was a few weeks ago at Edinburgh Airport.Having been on my own most of the time with just me and the dog then suddenly thousands of people surrounding you. And you have to push yourself through it Scared the crap out of me
Deep breath and keep paddling
Hi Steve, iv just read your post. It take time to ajust to what you have been through. Im almost 2yrs down the road and it is still very difficult at times, but im still here and i have my family who are great. Keep going you sound like your have it in you to over come some of the gremlins you talked about but remember we are all here if you ever need to talk.
Ps i cant stand facebook etc and im only 38. Ayisha.
Hi Steve, sometimes it's just good to tell your story because we're all different. I don't remember anything about my subarachnoid hemorrhage (bleed on the brain) or the following 4 weeks, I'm now 5 months in. I definitely would rather not be a paid up member of this club ( could've dealt with a broken leg instead quite easily). Reading your story made me quite glad I can't remember, yours sounds really scary! I hope you're feeling a bit better now, all the best.
Thanks for dropping by, while there are days I wish I wasn't able to remember there are days I think It make me stronger In my fight to what other problems I maybe encountering, my biggest fight is getting my wife to understand that it take me longer to figure things out and get the job done or get the courage to step outside, while I make it look easy, like am just stepping out I've already been fight several hours beforehand in my head knowing it was coming... more of those bloody gremlins!!.... Deep breath and keep padding or as they say in the theatre "break a leg"! ?
I do find that getting other people to understand is hard, keep saying to my husband not to give me too much information at once as I can't cope with it, I think he's finally understanding but I suppose it's difficult after having a very independent wife who was great at multitasking suddenly isn't, a lot of deep breaths and paddling.
I think the hardest part is trying to understand why they can't understand, am sure it's just as difficult for them, I don't ask much just let me do it at my own pace, I think my confidence to a hellafae knock, but little chats like these goes a long way
Deep breath keep padding ?
A little theory that I have developed is that most people can not cope with an illness that lasts for six weeks or more. I guess in days gone by we would not survive if ill for six weeks or more. Nevertheless it doent make it any easier for us to cope with all those people whp can not cope with us.
Solution is that we all move to the Isle of Wight and live as a mega community where SS are the norm.
Or Isle of Man
I totally agree with you Colin. I think that the memory and emotional issues we get are hard to deal with, although they do get easier as time go on, but can still happen when we least expect it.
I think these are the things people can’t deal with and don’t know how to react to. It puts me off socialising with friends which is not a good thing to do. The thing that I don’t understand is why I can be alright some days and then the next day I’m a total wreck, upset for no reason - it really gets me down at times.
I have to say that my memory does seem to be getting better, I think much clearer than I did, I’m now 20 months since the stroke so it gives me hope that my recovery may be good. I’m still frightened of having another but I try not to think about it too much.
I agree to us all moving to be together and vote for Malta, a lovely place with wonderful views.
Spot on. I keep a fairly meticulous stroke diary yet i can not fathom why I get bad days and good days. I have established that I need my full 7.5 hrs night sleep to give me any chance of decent days. I also nap for typically three naps a day totalling an hour.
I also dont know how to socialize with past friends and family. I dont think I can do the socializing and I am becoming quite isolated. I am much better with new friends as they are inclined to see me as I am now. Past friends and family expect me to react as I used to and I can not and do not. So much of this is very subtle.
Yes I too get down because of my erratic state of mind. The more improvement I get then the more I am upset at the downturns. I am sure we try to do too much, we still have a big chunk of old Ann/old Colin and I cant sit back and rest enough. I have to do things when my body allows and it is often too much.
Please be assured that improvement comes long after 20 months. Its so slow that I cant identify the improvements but I can identify the sudden bad days.
My bad days last about three days. One bad, then a day of a bit bad and then a poor day.
My memory works better now than it did on day one. But the deleted memory has not reappeared at all. I have read my diaries for the year up to stroke and so I now have some idea of where I am.
Reading my stroke diary does reveal how much recovery has been given to me. I had endless issues like toothache, acid reflux, upset tummy and so on. Last years speciality was sciatica. But they are all "phantom" and so endless GP visits is of no help to me. I sit tight and the issues do pass.
I particularly recognize "I think more clearly". Yet today it decided to revert and it comes as a surprise and gets me down.
I try to look at "new Colin" but it doesnt include reacting with anyone. I think we will have to do Malta.
I benefit from relax group and from yoga class. The yoga class is very very low key and is especially for disabled people. I am sleeping better (the night terrors are less common) and just this week I have been able to skip taking painkillers.
I crave the contact from fellow SS plus one or two special "carers" as these are the only ones who undersatnd. My wife was very good at first but she does not grasp what is happening right now. At least we have remained together.
You are unlikely to have another stroke. We take medication and we have such a slow pace of life.
If it is time for another stroke then I hope I will not wake up. I was so close the first time around. But I guess there is a reason why I was brought back from that final place.
Keep smiling. Be positive. You are not alone
I totally agree with you. I believe that in the modern world where illness or disability is " unusual " and coughs and colds can be fixed instantly we don't fit in.
Keep us informed about the perfect place for SS's and their essential supporters.
I went shopping for the first time since my stroke on Monday. Walked around Mark's and Spencer food hall and bought a few bits and pieces. It was tiring but I did it. Hooray! Husband now in love with Mark's food so back this coming Monday
Steve, Thank you for your story. I am four years post stroke and, like you, I still have my gremlins, mostly grey, but I will not let them get the better of me. What I identify with most is the way our bodies misbehave after we join the club. I swore very little in the past, but if my weak hand (or even my good one) throws something around or drops something on the floor, the air is blue. ‘You b.....’ is the most modest expletive.
Overall, I can do much more now than when I first came home and continue to fight to improve more. I don’t have melt downs but crowded places stress me out. I also still have post stroke fatigue, quite early in the day really, but after a quick nap at noon, I am okay till midnight.
A sense of humour in our club is invaluable. When people ask me how I am, my new response is ‘falling apart’, which, aged 75, is inevitable. Not ready to go yet though!
Can I put dubrovnik forward on the possible destination list? I like dubrovnik
Well done Kay. I recall my first supermarket shop quite clearly. A big sense of achievement.
I write a very specific list and try to write it in the order I would come to it in the Co op supermarket.
Now I am more flexible and can actually think a bit for myself. Even now I am tired after the shopping.
On about my tenth supermarket shop I realized I was tired but I got the stuff in my trolley and approached the check out. I didnt know how to proceed. Thank goodness it wasnt a sudden burst in to tears (man thing) and I just told the cashier I didnt know what to do. What a nice cashier. She had a packer with us in a millisecond and the cashier went through the process bit by bit. PAcker took me to the car. Asked if I wanted a taxi etc.
Next shopping trip I had hardly got in to the supermarket and the same cashier had left her station to rescue me. Shes not allowed to do that but she did. On this ocassion my son was with me so I didnt need any more help. The co op are disbled friendly.
Our emigration has one vote for IoW and one vote for Malta.
We initially thought we need an island. But if I remember rightly Dubrovnik is pretty well cut off with a long road from Split an airport and of course the sea.
Is that right ??
I am working on travel.
I can do up to an hour on a good day. So I will need a big effort to make Dubrovnik.
Hi Steve - such an engaging post, you have a great turn of phrase! I love "In the heat of the night", Sidney P, a-ma-zing!! It was recently on TV, sadly still so relevant today. This is indeed a friendly and supportive site, such a wide range of people with many different stories to share - it has been a lifeline for me, and I've gained so much from the contributors.
Love your photo, sadly we lost our dog shortly after my husband's stroke, so a double whammy for him as he is the "doggy" person, and I know that Moby would have really helped my husband's recovery, he would have been obliged to go out at least once a day whether he felt like it or not!!
Take good care, stay as positive as you can, and keep checking in with the site - we'll look forward to hearing you.
Good luck ?
Congratulations on your shopping trip Kay. Like Colin my hubby and I have a list which follows the layout of Asda for our weekly shop, infact my post stroke life seems to consist of lists or notes.
How are you getting on at work, hope it’s going ok. I used to work in the NHS so I’m curious how you’ve found it. I was a cardiac technician before I retired and know I couldn’t have coped with the department workload following the stroke. I had been retired 5 years before the stroke which put a stop to our retirement plans for now anyway. I greatly admire those who post about going back to work, I would have dreaded it.
Good to see you are doing well.
I had to except taking early retirement. I found the Trust unable to understand that what they thought was a reasonable adjustment was in fact the complete opposite. They kept changing their minds on what I needed to achieve in order to fulfill my role. Then my husband was admitted to hospital again so we decided that I needed to be there for him and not keeping chasing rainbows.
Hopefully the paperwork will be sorted by November.
I was a bit disappointed and sad. But one of my friends has made a plan that we meet once a week for coffee and a little retail therapy. Heaven. I need to work on my stamina and strength. Thank God for my walking frame and the seat going around the shops.
I love reading everyone's posts it gives me the inspiration and drive to keep trying.
Have a good weekend
Sorry to hear that but I’m not really surprised. At the end of the day your health is more important but it’s a pity they weren’t more supportive of you. As time goes on you’ll appreciate not working and will find something else to occupy your time. You’ll enjoy your weekly catchup I’m sure.
I did some volunteering for age uk before the stroke which was really good, I hope to get back sometime soon.
Hope your husband is better following his spell in hospital it must have been a worrying time for you. My hubby had an operation a few weeks back and our days have been spent mostly having dressings done at the GP surgery every other day. We are now down to doing them ourselves and visiting them once a week thank goodness. Will be glad to get back to normal soon I hope.