The "you look well" syndrome is very common. One idea is to say thank you, but you cant see the inside.
I get organized. My meals for the next four days are pencilled in to my diary. Shopping just has to be listed and then ut in to the order that the shops will be visited. Being male I dont take any notice of what to wear, but I do ensure I have clothes to hand. I have a weather station that tells me exactly what the weather is doing.
Now I tell you this, not because I am boasting/know it all but because it means I can use all my battery power on other things.
The word "tiredness" is silly isnt it. Its not sleepy tiredness but it is stroke related and "Fatigue" is nearer the mark. Or as I say "SF". Quite frankly other peoples view of us does not improve at all. As they get used to us they just assume more and more.
I have a regime that involves getting up, dressing, make bed (that is a problem), shave, eat breakfast and then I sit down and rest for twenty minutes. I often fall asleep but whatever, I have that 20 minutes minimum. If I dont do this or its not a good rest, then I do not get through the day. If I do have a good 20 minutes then I am calm, my energy level is decent and I can quietly go about my day. I wont go back to bed. I always get up and dressed, however bad the SF might be. I will lie on the settee or slouch in the conservatory but I wont go back to bed.
I have suggested we all go and live on the Isle of Wight/Malta etc then we will understand each other.
My ears have been difficult. At first an echo would slaughter me. Now I get a form of tinnitus, mainly at bed time. What is it about our hearing ?
A friend who has full blown tinnitus uses sound cancelling headphones. They are amazing. And she can fly (inside a plane!) travel and get through the day a lot better.
DO please rant whenever you want. Lots of us are here and we are all on your side. We might fail to find your posts (I cant unerstand howthis site works) but we are all willing to share our experiences.
Hi Colin, we're just back from a walk, approx a mile and a half 'around the block'. It's been absolutely gorgeous and I just wish I could achieve this every day. I know that if I go out, my husband will come with me, but during the week I don't get home until nearly 6pm, and then all I want to do is flop on the sofa. We discussed reasons why he doesn't go out on his own every day, as he works from home, but he finds the cognitive exertion leaves him so fatigued he doesn't have the energy. I've generously offered to retire so that I can drag him out every day!! Heyho, I'm just pleased he's ok because he's not been too well this week, but hoping he's out of the woods.
Early during my recovery I was walking a mile. Yes it was nice to be out in the countryside. However, my cognitive side then took some pretty awful steps backwards and I concluded that I had to use my available enrgy more carefully. No idea if thats the right thing to do, but at the time it felt necessary. So yes I can grasp why hubby doesnt do the cognitive stuff and then the physical stuff.
Do have in mind that you can not make your husband better. Only he can progress his recovery. Your support is an enormous boost but only he can make the recovery.
I went to the dentist yesterday. It was good that he understood the jawbone pain. He reckons some heart attacks are preceeded by jaw ache.
I have gout, just to add to the mess, and its flared up. The interaction with SF is orrible. I must obey my own mantra and deal with the gout then get back to the stroke stuff.
Oooh sorry to hear that Colin, incredibly painful. You can only deal with one thing at a time, you are very good at devising a strategy for coping, so I'm sure you have a plan in mind. Take care, I hope you will be feeling better soon, thinking of you ? snuggle up with Oscar.
Be careful not to try and do too much too soon. I did and felt the repercussions - post stroke fatigue and depression is (apparantly) quite "normal" - don't fight it - I tried and lost! I am pacing myself a lot more (10 months since stroke).
Welcome aboard, everyone has said it all, no one stroke is the same, we all get angry especially when people say you look well!! when they havn't got a clue. I find it easier to tell those you see alot of or work with how you feel and how the stroke effects you inwardly and outwardly. Explain that stroke fatigue is not like being tired its total exhaustion. I too get very angry my husband says he has never heard me swear so much as I do now. I was in the garden on Sunday trying to do some things that never bothered me before, transplanting a plant, even tying a plant to trellis was almost impossible, and I got everso cross. So you are not alone. I eventually gave in and sat down to watch my husband and son doing what was needed. Each stroke survivor goes on a different journed to recovery, but some things are similar in all of us.
We are all hear so have a rant whenever you need to!
Colin totally smashed it on the head about 'new friends'. I learnt on this journey who are/were my friends. Some friends were either oblivious regarding my stroke or simply couldn't handle it. I have an amazing circle of true friends and family. My freezer is full from the kindness of friends/family who bring groceries and cooked food until I'm seizure free.
I am not scared to ask for help from friends as the 'true ones' are readily available. In the meantime I educate them of how my day has been and lay it down blatantly so they realise that if I've had a good day that's for that period of time. Another irritating phrase is, 'Have a speedy recovery'. HELLO!!! I then say, 'A stroke is not like having the flu' which will disappear after a few days or so. As my friend said, 'They're not listening'.
I have only just now seen your posting. This site is not easy to navigate.
Now there are always the rare exceptions, but I am fairly sure you had a full stroke. Not aTIA. Maybe you had both (?). But TIAs will always have a quick or very quick recovery. Otherwise it would not be Transient Ischemic Attack, it would be a damaging attack. And the fact you have an infarct also indicates it wasnt just a TIA.
I hope you still have your original diagnosis, written when you were discharged from hospital. As I say, there is always that slight chance of being the exception but I really dont think that is you.
Does anyone know if there is anything I cou,d use to help with ears other than ear plugs, I use these but I can’t hear anything, I feel like I need something just to soften the noise? It’s not tinnitus, since my second full stroke 2.5 yrs ago and a mini stroke about a about ago, my hearing has become more uncomfortable around noise laying the cutlery on the table is even uncomfortable. I’m struggling to get through a day, traffic noise for example, sirens, motorbikes are incredibly painful. I’ve had a hearing test and no problem there so it’s the brain that causing this problem...
Evening everyone & hello to those of you who have replied to me several times. THANK YOU.
I'm doing OK. Today is 6 months + 5 days after my AVM. My stroke. My Brain Incident. I still can't really believe it happened. I still can't remember that entire week. I'm still angry about it for everything it took away from me... but I'm so grateful that I'm alive & I can walk & talk.
Being allowed back to work was a godsend. I have the best colleagues. I've not screwed anything up (yet). I'm amazed at how much I can remember. I'm annoyed at how long it takes me to do anything but I'm pleased that it's correct when I've done it. I'm even more pleased that I'll be able to go for a Christmas lunch.
So I'm not ignoring you all. I'm just so pleased to be able to live my life almost normally. At the moment I want to ignore that whole May event & focus on the future.
Thank you again to everyone who replied to me with anything at all. I will most probably need your advice and support again. I hope you have a good autumn till then...
Hi, so glad you've begun to rebuild and reboot! It's not at all easy to accept and come to terms with life post-stroke. As Colin says, you're a survivor, you are meant to be here, so now you're finding out what you can still do, and it sounds as though things are going well. Hopefully life will turn out better than you thought, you never know what's around the corner, and it sounds as though you're up for the challenge!!
Don't forget to allow yourself time to rest, you will appreciate that in the long term, but enjoy your job, and thanks for the update. Take good care ?
Thank you Colin it was a brain stem ifarct I had in my brain stem still having problems now with feeling dizzy past out for 4 mins about 3 weeks ago got admitted to hospital said I was cardio bradocardia not sure what that means they tested my heart hopefully my doc can get me a brain scan hoping it's nothing bad but passing out for that long is bad in its self hope your ok ja
The bradocardia is a lowering of your heart rate. I had lots of trouble with this and yes I passed out, collapsed, blues and twos a few times.And intense chest pain, very very intense.
But I am still here ! It seems that if my BP goes up then my pulse rate falls.
A typical person will reckon to have a pulse at 60 bpm or more. Mine lurked at around 52 to 54. Then it would sometimes drop and once it gets to 40 something I need medical attention.
I am pleased to say it has slowly eased and last weeks was 66bpm which for me is spot on. And I feel far less ill generally.
Strangely, when I sugested having a pacemaker the doctors invaraibly said no. And they were right, its corrected itself .
So much goes wonky after a stroke. I just take each issue one at a time. If I try to look at everything then it addles my brain. I can cope with one thing at a time. I do find that adequate sleep as a key issue. Took me months and months to work out how much sleep I need (7.5 hours) and then ages to reorganize things so I got that sleep. It paid dividends.
Hospital will probably ask you to have all the cardio routine tests. Dont panic ! They are just making sure they havent missed anything.
Not sure how a scan will help. Maybe the hand held scan on your neck will be sensible but a full MRi is a bit like looking for a needle in a haystack. Still, it doesnt hurt and if it reassures you then all well and good.
My hospital were brilliant with the cardio tests. Seen on time. Painless test, took about 45 minutes, then I went home on the bus.
Things really do get better. So slow that you wont notice, unless you can recall what things were like a year ago. But the improvements are amazingly good.