My husband had a hemorrhagic stroke four weeks ago. The main problem it caused was a loss of peripheral vision on one side. He also suffered with a flashing light for a few days along with headaches. At the moment he is feeling very tired and also very worried and panicky. Obviously the big fear is of another stroke. We did go back to A&E last week when his sight got worse, his blood pressure went up and he started having hallucinations, which have since subsided. My main problem is trying to calm him down and keep him positive. He resents feeling so fatigied and thinks that this is all he has to look forward to. I would welcome some simple suggestions as to what to do and say to help him.
Hi Dot, Welcome to the forum. You will get lots of support on here, so ask anything you like. I had a hemorrhagic Stroke two years ago. He is in very early days and fear is a natural reaction. This will ease with time, but the fatigue may not. I still need an hour in bed every day. That said, the fatigue becomes more manageable over time. You must just encourage him to listen to his body and rest when necessary. I also had headaches, but took that to be my brain re-wiring. They also ease with time. Similarly, I lost a little peripheral vision on my weak side. My blood pressure medication was changed slightly and is under control.
Tell him there are things to look forward to. I had support at hospital and later, at home, from the Community Stroke Team. They got me walking, moving round the house safely and taught me how to get up and down stairs correctly. I began with a walking frame, but now use a stick outdoors, but not indoors. I have been on several weekend breaks and, with support, can go shopping. My first time in a supermarket terrified me, but I remind myself I have as much right to be there as anyone else. I also have had to learn patience and to do things slowly and step by step. I can even do one or two bits of ironing (no more) and change a duvet cover.
Everything takes longer than expected nowadays, but I live with that. However, if things go slightly wrong I swear like a trooper, although I have also learnt to laugh at myself. I can cook, bake and also make jam. At 74, I have come a long way and hope to improve further. Anything he can do to utilise his weak arm and hand, if he has a weakness will help. I also go to three exercise classes a week. It may help him to join a local stroke support group. The ones round here organise a range of trips and activities.
I hope all goes well for you both. You might find a local carers group helpful too, because we survivors can get angry and emotional in the early days, even with those we love. Tai Chi can also be a help, as can meditation groups. Wishing you both all the best!
Sorry to hear of your husbands stroke. Many of us have an irrational fear of a second stroke. This awful feeling fades away over a month or two. Personally I think its the brain deciding it doesnt want a second attack and doing anything to scare us into behaving ourselves.
Maybe when he begins to learn what has happened to his brain and he also realizes that despite the attack, he is surviving, then the worry will ease.
I had hallucinations and was advised this is rare. I enjoyed the hallucinations. They included seeing imaginary people and so I tried guessing who they were. The doctor with the tea ladys head and so on. I also got lovely flowery patterns. So instead of the bland hospital ceiling, I had patterns and colours.
His brain is busy. It is trying to repair and rescue some of the less damaged bits and it is also rewiring itself to work around the dead bits. So no wonder he is tired whilst the brain is doing that. Get rest, drink lots of extra water (imagine how the brain is overheating) and be assured by fellow contributor John and me, things do improve.
I too get bad fatigue. But I can have some good life. I just need extra sleep each night and also I need to rest a lot. This is a lot better than being dead, which was one of the alternatives. I assume he is troubled with some paralysis. Well its the most marvellous thrill when, for instance, you step over a threshold. Or your ankles come back in to action.
Now I wont insult your intelligence Dot, so do pick out what you feel you want to pass on and in what way. Maybe he doesnt want to know a lot at the moment. So just cherry pick and take it slow. Recovery is slow. But recovery does come.
Hello Dot - you have had some high quality advice from Colin and John, as stroke survivors they are the backbone of this site. They, and others just like them, will be here to give you lots of support and encouragement. Their main message is to get plenty of rest in between any periods of activity - progress will be slightly different for every one, but some features of stroke recovery are common to all, and that is the balance of fatigue and adequate rest.
I don't really describe myself as a carer, but I am the main support for my husband. It has been a scary journey and I have had to keep my wits about me whilst learning new techniques for managing this life changing event. I've shared the highs and lows and it's quite exhausting, and I haven't had a stroke, so must be so much worse for him. Things improve, and I drew lots of inspiration from regular contributors to this site, they helped me get things in perspective, and I have used their experiences to navigate this new life.
Take heart, take rest, take good care of yourself, be prepared to move forward gradually, best of luck xx
Thank you Colin. I try to be realistic, but also realise that stroke affects those closest to the survivor just as much. It is also, in its own way, a great teacher. It told me that I was not immortal and that the bodily movements I took for granted and thought I controlled were actually controlled by my brain. You were the first person to say in plain English that some of my brain had died , but that it can still work round those dead bits.
What disappointed me the most was what I learnt about some ‘friends’. There were those who would not acknowledge it; those who seemed to quite like me ‘ill’ and those who never visited and have never asked me about my progress. As soon as I was able to return to some sort of ‘normality’ there were those who expect me to take on volunteering roles or resume the ones I had already.
On the other hand there was a great deal of love shown to me and people who visited and cheered me up. I realised that we are closer to fewer people than we think, but those we are close to love us unconditionally. But that is life....it goes on even without us.
The greatest thing I learnt was to live in the present moment and to enjoy ‘the small things of every day’. Tomorrow is not guaranteed.
We make a decent team to help others on this site. I am beginning to forget what it was like in the early days and so my help for others is diminishing.
What we both do ( rather well in my boastful mode) is that we consider our partners. And our partners have stuck with us. Many do not stay together.
Yes indeed, our brain controls movement. I can now tell when it is a stroke related pain as opposed to an "i am just getting old" pain. It is the tendons and bones that creak from the former and the muscles that groan from the latter. I can also tell when memory loss is stroke related as opposed to old age.
I have a new theory this morning. Needs a lot of testing. I think that I no longer turn over in my sleep. Being unable to turn was the first thing that truly hit home on day two. But I had forgotten that . Most mornings I ache so much I can cry. Once I have stood up and moved then then ache subsides. Also I wake up every two hours.
Short of installing CCTV not sure how I test this new theory.
I am so grateful that I have become mobile enough to be concerned about such theories.
Time to go off to Church. After Church Rose will cook the roast and then we do nothing, just have a lovely lazy day. Watch TV. Use my PC. Read.
How is your mobility ? How far do you walk with comfort and can you do most things ? And the things you can do, are they harder when you are tired with SF ?
Thank you. My mobility is all right, but I tend to be a bit lazy. In the morning, I can do half a mile with my FES machine on, but on familiar territory and aided by my stick. I can do many things and can just about wipe my left leg foot. My exercise classes have helped my strength and balance enormously.
My weak arm and hand are more controlled now, but can jerk. I still cannot use a fork with it, but it has the ability to steady an apple or potato for peeling. I can use it to wash my face and lately it has resumed its role in taking a coat on and off. I can use it when I fold things like towels or to hold the one side of my shirt to button it. Seated Tai Chi has really done wonders for it.
The fatigue is my big bugbear. As you have said may times, it is hard to describe. It comes on midday and I feel as if I have a fog in my head. I last out till one o’clock, then get into bed. I usually nod off. After that, I can stay up to 11pm or midnight. Very occasionally, I can have a good day and am okay on a car journey of up to 100 miles. I find walking on unfamiliar territory stressful and having long conversations with three or four people is also tiring.
I do stay hydrated though and have a glass of water by the bedside all night. I can sleep on both sides, but favour my right side. I also ache on my weak side in the morning, but that does go. I always ache after exercise. My memory is good. There was some concern in the beginning about my short term memory, but there is nothing wrong with it now. My long term memory kicks in just before sleep and my mind roams here there and everywhere. In the recent hot weather I have slept well but have vivid dreams, all odd, but no nightmares.
It is indeed a fascinating subject. I get the impression that very little is known about how our brains actually work.
I have rotten SF but good mobility. I feel that you have been landed with both the physical disabilty and the fatigue. Lets hope they both go away together !
Several SS have mentioned they are OK up till lunch and then exhausted afternoons. I did manage three hours of physical activity on friday. Barrowing and stacking logs. It wasnt heavy work and it didnt involve any thinking. After just a few minutes I was reeling. But I sat for just ten minutes then carried on. I got some elation from the task.
I need a rest within an hour of getting up. I skipped the rest this morning and was very bad with the dizziness and fog. Got home and zonked out for a long deep sleep and all is well again.
I did have very realistic night mares and even night terrors. Eased a lot now. Whatever do our brains think about.
If we can help the newcomers then its worth the effort.
The only answer I can give is that we all have gone through a similiar phase in our early days of grappling with the complexities of our own personal strokes. Only time passing will replace the fear with confidence in recovery.
The odds on having another stroke are pretty low, I did read them recently and seem to remember that it is less than one in ten chances of it happening.
Thank you for taking the time to reply. I have shown Chris all the replies and I can see that they have helped. He does seem a lot calmer now and realises he has to take time to get better or to be a lot better than he is.
Thank you for your reply it has been a great help. Chris has read your reply and now feels a lot more calm. It is going to be a long haul to cope with the fatigue and vision problems. We have both found the web site a great help.
Thank you for your reply it has been a great help. Chris has read your reply and now feels a lot more calm. It is going to be a long haul to cope with the fatigue and vision problems. We have both found the web site a great help.
Thank you for your reply it has been a great help. Chris has read your reply and now feels a lot more calm. It is going to be a long haul to cope with the fatigue and vision problems. We have both found the web site a great help.
Look after yourself Dot, it's 3 months since my dad's major stroke now he has come from having no congnictive functions to now nearly 80%...it's still very hard taken him out for lunch today which is a achievement as it takes him so long to make a decision and eat his food...tells me off now for eating to quick.... have a day a week for you, even if it's to go for a coffee xx
You are welcome Dot. It is along haul and certainly has its ups and downs. Fatigue is something I live with now. The odd thing, to me, is that it does not stop me sleeping at night. That has improved too. In the early days I would wake every few hours or so. I think that was my way of checking I was still alive. That eased and I now only wake once or twice. As for vision, my cataract ops have helped but I still have no urge to read. I also use sun glasses more now to help protect my eyes. I also accept that I am now old and just make sure I exercise sufficiently, eat a healthy diet and drink more water and less alcohol.
Thats so good to hear, that Chris is reading this forum. Thats a mamoth step forward. It is a long haul.
Lots of us on this forum are happy to help a newcomer if we can. I had "angels" who helped me. They transformed my life by just gently telling me things that Doctors dare not say.
I have just dug over the strawberry bed. Sounds dull, but its all part of my recovery journey. My wife is off to London tomorrow and I will fend for myself for four days. Chris will get to this stage in time. Belief is important. He can get better. Positive thinking brings positive recovery. Smile a lot. Minimum 4 times a day. Think on what Chris can do and not on what he cant do (yet).
Never ever think of giving up. Our amazing brains can and will recover. And some of the recovery is wonderful.