How to find a new normal?

Sorry in advance for the long post, just need to get it all out.
My husband had an eye stroke just over a month ago, he is only 41. He has no vision in one eye and has post stroke fatigue so can only do things for about 15 minutes and then needs to rest for half an hour or more. He is now on medication for blood pressure, cholesterol and blood thinners so I feel reassured he is safe. He has no medical conditions, or family history of strokes and leads a mostly health lifestyle (could do more exercise and lose a little bit of weight) The last month has been a whirlwind of hospital visits, tests, doctors visits etc as they are trying to find the cause and also trying to look at the damage done to the eye. There are more coming up and also still waiting on results of others. My husband I don’t think has taken this all in and possibly may be in denial as he hasn’t cried or showed any emotions and just says he feels like a fraud as if people look at him he looks fine. I have told him he is not fine and it doesn’t matter what people think, he needs to look after himself and focus on getting better. I am being strong for him and our little one and doing more to help him and around the house and trying to have as much normal for our son. I’m working full time in a management job which is quite stressful and this week I had to take time off work sick as I feel overwhelmed with everything, I feel we have no control of anything, we have no real answers and need to wait not only on test results but things like his eye and the fatigue (we have been told both may go away but give it months and time will tell.) There is the worry of another stroke in his other eye as he is now at more risk as well as being at more risk of a stroke in general. We don’t know when he goes back to work if he will be able to cope with it or will need to change career too. I just feel everything has been turned upside down and don’t know how to find out new normal or what our new normal is. I feel work wise for me I don’t want to go back and be responsible for everything I don’t want or need the stress of this and I don’t know if I can manage the stress of the job and the unknown at home. I just want a job I can go to and do my job and leave at the end of the day and not think about work I til my next shift. (I can’t take more time off work as I don’t get paid when I am off sick so can’t afford it) Is this all normal feelings to have?

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I think there are a few posters on here who have had eye strokes. I can’t comment on the particulars of the stroke itself, how much damage is neurological and how much damage may be oculomotor. I can say, however, that fatigue may drag on for years, and that it seems something that needs to be managed by techniques of resetting or blanking the brain as opposed to having a long catnap. I would say, for your husband to not feel like a fraud, he needs to be kind to himself and his change in circumstances. I was gaslighted and browbeaten by someone who was deluded in thinking I had not had a stroke because I didn’t show the classic physical symptoms of a cerebral stroke (mine was cerebellar), and to me, a stroke is a stroke. Being kind to oneself is key, he knows the pain and anguish of his symptoms and needn’t need to prove it to anyone. If a person suffers from depression, we don’t expect them to walk around with a grim, soured mouth and hunched shoulders, bleakly dragging their feet and bemoaning, “Oh woe is me”. We don’t judge a book by its cover, although in the literary sense, unfortunately, many people do. There is an illustration someone has shared on the forum, previously, of two figures, the first shows a person as we may see them, and the second displays the internal workings all higgledy-piggledy.

A month is early nanoseconds in stroke rehabilitation, and it is worthwhile encouraging him to heal for at least six months, with gentle and repetitive rehabilitation exercises to do. Don’t overdo things, avoid the boom-bust cycle where progress implodes from too much enthusiasm. There is also the balance of giving yourself time, on the stroke forum there is the Carer’s Cafe, worth joining to get some tips and tricks in managing your own time and helping your husband.

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Thank you for your post and I will pass this on to my husband.

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Yes, they are all normal feelings after a stroke. I can relate to everything you describe, not least because 2 years before my main stroke I also had a stroke in my eye. Luckily that eye still works, though the vision (in the lower half exactly) is very poor. A month is very soon, and the fatigue is normal at this stage. With time it will likely improve. You mention exercise, and this is vital. Exercise = life.
I suspect (my opinion only) the cause is high Blood pressure.
An overall ripple of stress will be felt across the family, unfortunately.
Stay united, stay close, explore all avenues, and have faith in his recovery.
But, be aware, you must always be mindful. Get him to lie down, on the ground and start some gentle core exercises. Plenty of water, and celery is great for high BP. A bit of research into good foods for hypertension will go a long way…

very best to you & family,
ciao, Roland

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@purplerainbow1980, hi there very sorry this has happened to your husband, I had a stroke at 41 ischemic and then a hemorrhagic stroke a year later, the first affected my vision. It’s difficult when people cannot see your husband s issues because they are hidden from the rest of the world but you and your son will know. My children were little when I had mine and it was very difficult to explain to them as it wasn’t visible but I was different. My husband and children have been been a massive support to me and still are. I tried to get as much info as I could about sight loss and found RNIB really helpful. Also maybe try behavioural optomistrist, perhaps they could help with glasses, prisms or Pele lenses if suitable. I also used Nova vision light therapy for a while. But I would say, trying as much as possible to continue with family life really helps, but also rest when he needs to. Having young children means you have to carry on and get on with your life and adapt to the situation as it is for now, stay strong as he recovers and improves. X

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Thank you for your reply and advice. It’s good to know what I’m feeling is normal too

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Thank you for your reply I will look into the things you recommended. Thanks again

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it’s as much a trauma to you as your husband ; you are one and the same
my wife went through it.
good luck, Roland

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@purplerainbow1980 hi & welcome to the forum. Sorry to hear of your husbands stroke. Everything you describe is very normal and felt by most of us I think. 1 month is very early in recovery terms & recovery is most definitely a marathon not a sprint. Stroke also impacts everyone atound the person who has had a stroke so it will take time for you both to come to terms with it.

Fatigue can be a big issue but in time you’ll learn how to manage it better. I kept a diary so I could easily see my triggers…it might be worth doing that too.

His vision might start to improve over time & that’s something you just have to be patient with. In the meantime your husband will hopefully get used to his vision issues & adapt accordingly. Ask his consultant if there are any exercises he can do to help with his vision. You may need to wait on them finding out the level of damage first.

As for what other people think in time yoy’ll learn to ignore that or just learn to smile sweetly at them. You could look at getting a sunflower lanyard though that will indicate to others that he has an invisible disability.

Wishing you both all the best & i hope you get some answers soon.

Best wishes

Ann

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Hi @purplerainbow1980 welcome to the forum. I’m sorry you had to join us but you’ve come to the right place, you are not alone! :people_hugging:

We have all been through this and we are all either finding or have found our new norm in this new world of stroke. You will adapt in time the same as you would adapt to a new house in a location. And your little one will adapt far quicker than you, that’s just nature. Just be sure to keep all floors clear of toys and obstacles whilst your husband adapts and learns to navigate with one good eye :wink:

As for emotions, yes, he could still be in shock by it all. But is he normally a cryer? Did he cry when your child was born? We don’t all react the same in crisis or trauma, some handle it better than others, that’s just their nature. I cried the first night of my stroke; not because I’d had a stroke, but because I was stuck in hospital, unable to communicate and we weren’t allowed visitors because of the lockdowns.

Your husband is now on blood pressure tablets and that combined with the infernal fatigue, is probably keeping him emotionally numb, as it did for me, and that’s a good thing! Because his brain needs quiet and calm, no stress and nothing to over tax his brain. So keeping life simple stupid is the order of day for the next six months while his brain concentrates on healing and recovery. His brain is charge now, controlling what he can and can’t do and for how long.

The fatigue is his brain forcing him to take frequent breaks whether he wants to or not! You can’t fight it without paying a price, but it will get easier over time and more manageable if it doesn’t go completely. You will both learn to manage that.

You worrying over further strokes only runs the risk of you yourself getting ill and that really is pointless.
The future hasn’t been written yet, we can only live in the here and now.

Your husband is now on preventative medications, combined with a good diet, exercise and a loving, happy family, he’s just as at risk as everyone else on the planet of having another stroke.

I’m 3yrs post stroke so now I’m at greater risk of another one. On the other hand I could be run over by a bus or struck by lightening in morning, so what’s the point of me worrying myself sick over the fact that I might have another stroke. It’s not like I can do anything more to prevent it! Or I might have another stroke 30 years from now by which time I’d be 92. Or I could wind up with Alzheimer’s in the meantime as that also runs in the family.

You husband is alive and recovering, celebrate that life and live a happy life because no one knows what the future has instore for us. And don’t forget, there are many more people out there, recovered completely or sufficiently enough from strokes and getting on with their lives. We don’t hear from them as they have no need to seek out forums like this for help.

Keep calm, stay focused on a good recovery for your husband and keep a positive outlook on life and don’t borrow trouble :wink: :people_hugging:

Oh, and @BakersBunny will probably come on later to let you know when the next Carer’s Café will be on if you’re interested :slightly_smiling_face:

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Hi @purplerainbow1980

I shall add my welcome to those you’ve already received. None of us would have chosen to join - All the people active on here have found it a source of comfort from the support they get from others, the sharing of what is normal and what is not.

First of as others have said your emotions and experiences are pretty normal. So too those of your husband. If I speak for myself acceptance doesn’t require crying. But acceptance is normally necessary for progress. There is an acronym Sarah shock anger resistance acceptance healing. It applies significantly to the emotional journey that he and you are both on separately and on together.

A stroke is often a life altering event but not always. The path forwards will be unclear until the extent of fatigue and other emotional impacts are known and evolve over the coming months. The physical gets talked about such as the loss of mobility dexterity vision taste balance etc but the invisible is significant to. Perhaps more so.

You’re right too question whether decisions about the path you are currently on are still valid but making any long-term changes at the moment maybe premature - obviously pragmatic adjustments will be very necessary for all of you.

Don’t overlook or underestimate your susceptibility to PTSD as well as his. Also potentially your need to be the fulcrum around which all other activity pivots (and do not import inappropriate feelings of guilt!

You might find this three or four minutes of video speaks to you.

The next carers cafe is the 17th May at 15:00 on https://bit.ly/StrokeCarersCafe

You will be able to access the experiences of others more directly if you experiment with the magnifying glass above to search. The search matches are fuzzy - you don’t have to match exactly- & you can search individuals contributions by putting an @ and then their name inside your search

Might also find

the welcome post

Touches on a collection of topics that will be relevant to you both

There are some good materials for children on the different strokes website there is also the stuff on many other aspects such as benefits that can be claimed on DS and on the Stroke Association sites. Has mentioned the RNIB, the stroke association, and many other sources exist

On the subject of medication and tests: the medications received are a knee-jerk reaction by the medical profession; everybody gets some variation on the cocktail of Statins, BP, stomach protector, antiplatelet/ blood thinner intervention.

Some of us get alsorts of tests. Sometimes they result in an explanation but not always. It would be sensible to rulle out a hole in the heart (surprisingly common 25% of the population), arterial fibrillation, hypertension, blocked cardioid arteries etc but stroke as a consequence of an unexplained phenomena is common - that can be a source of anxiety (back to the emotional impacts) - but shouldn’t be because as @EmeraldEyes said the red bus or cancer or any other million things could be around the corner and we don’t/ can’t spend our time worrying about them all.

I wish you well on our shared journey

Caio
Simon

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Hello,
I am sorry to hear that your husband had a stroke. My husband had a stroke on 12 March and just came home on 1 May. I fully understand how you feel about work and my hear goes out to you. I had started my dream job on 4 March which I then had to resign from. It is a stressful time for you and this feeling of everything resting on your shoulders will be making things worse. Do you have anyone who can maybe help you out at home with your son and the housework? Please take care of yourself. Happy to chat out of this forum if this helps. I am based in London and I am 55. Best wishes to you and your husband. Marie

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@Marie123 @purplerainbow1980
You might both like the carer’s zoom cafe on alternate Friday’s at 15 :00 next one is on 17th April run be @BakersBunny on the link

bit.ly/StrokeCarersCafe

Caio
Simon

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Thanks Marie, my mum takes my son when we have hospital or doctors appointments out with nursery hours and on the 1 day I work late so that helps. House wise I’m just doing what I can and I get to it when I can.

I’m sorry to hear about your husband and also your job too. Life can be so unfair sometimes and it’s unbelievable how it can change so quickly.

Happy to chat any time

Karen

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