When I ask my wife, have I changed at all after my stroke, she says yes you have changed abit but your still the same person I know...why don't I feel that same person..
When I try to explain how I feel and that I don't know how to feel emotionally or I don't understand the emotion I'm meant to feel..
I know this makes no sense..sorry...
Hello Itsracin
Thank you for reaching out to EnableMe and I am sorry to hear how you’ve been feeling. It is good that you are wanting to talk about these types of feelings as they can be very common for many younger people who have experienced a stroke.
You should never apologise, and I think you will find that many others will have similar feelings and experiences, and that what you are going through most certainly does make sense.
Often after a stroke, many people experience hidden disabilities, ones that others cannot see quite as easily, or do not always exactly understand. These can be difficult to describe to others, or even sometimes to yourself. Putting into words the changes you are noticing in your emotions, or in the way you respond differently to certain situations can be difficult. Finding the new normal can be very challenging and frightening. It can also take time, so be kind to yourself and make sure you keep talking to those around you. It is good you are talking to your wife about what you are going through. If you’d like to hear from others who may have experienced similar feelings, the Young Stroke Website here has some great topics on hidden disabilities and being your own champion.
There is no right or wrong way you should be feeling. It may help to remember that every stroke is different, and everyone will experience their stroke, and their recovery in a different way. What is good to remember is that many others may also be having the same thoughts and worries, so reaching out for support can help. There is a great podcast on EnableMe here on finding the new normal which might also be helpful.
I am sure there will be others who will have some great thoughts and insights into what you are going through and will reach out here on your blog. In the meantime, have you had contact with your treating team, if you are still accessing some rehabilitation, and told them how you are feeling? If not, this might be a good idea. They may be able to link you into the psychologist on your team. If you do not have a current rehab treating team, perhaps talking to your GP about how you are feeling and asking for a Mental Health Care Plan. This can provide a number of subsidised sessions with a psychologist or counsellor, so you can talk through how you are feeling, and perhaps looks at some strategies to help you manage these changes in your emotions.
What you are going through is difficult, challenging and can be very isolating. There is support out here, so do reach out if we can help.
You can contact us here on StrokeLine by giving us a call on Ph 1800 787 653 or email us at strokeline@strokefoundation.org.au. We are open Monday to Friday 9am to 5pm. Keep posting on EnableMe and keep sharing your feelings.
Warm regards
Siobhan (StrokeLine)
Hi Itsracin,
Here are some comments from the community for you.
Samdee - 21/6/24 was my 3rd year post stroke
I am not the same person physically nor emotionally. I was accused early on of using my stroke as an excuse to “ conveniently “ forget certain things by even those closest to me . It hurt .
No one who has not been through stroke or other tbi understands & it’s difficult to explain .
Unfortunately as humans we are in the main visual beings - we are more inclined to believe what we can see such as physical restrictions- brain changes are hidden .
I explained who I now am and in turn accepted I’ve changed - if others can’t I can’t force them to and have focused on moving ahead with my life as best I can as it just frustrated & upset me too much .
The main priority is to be kind to yourself- & it’s hard sometimes.
It took me a long time to be able to get to where I am - I’m definitely not the same person I was pre stroke but I have a much better appreciation of what’s happened to me what and how I can control my emotional physical and mental changes and make the most of them . I can live an independent life with very little limitations- others can’t .I survived- others didn’t . I’m proud of myself you be proud too . Hopefully those closest to you will come around and realise changes in your personality for example are part of stroke survival and must be acknowledged as such . All the best & take care xx
Meg - Hi Chad for me personally. I also have struggled with this. But ultimately it’s because I struggled with the fact that I’m not the same person. And felt like I had to justify myself for not having the same stamina, and for listening to my body , and prioritising my kids and family first. It’s a constant roller coaster. I think if you just keep saying it, the people who love you will start to understand. It’s a new adjustment for everyone. And they can only accept what you can offer. They can’t truely understand how you feel, but can respect what you say and learn from/ with you. I found it helpful sharing information from the internet about stroke fatigue. But I do still need to remind people when I feel pressure or expectations. But I’m becoming more comfortable in my skin while I accept my new limitations and expectations of myself. I have been able to recognise silver linings too. I was doing way too much and spreading myself way too thin. Be kind to yourself and patient with your people. But don’t stop advocating and educating them when you need to.
Traylo - Hi. I’m 6yrs out and i@ still struggling. It’s sooooo much better but i still refer back to “ the old me” which is so wrong. Pre stroke me was very different. I’m young and still angry about the things i cannot do like I did before . But the huge difference now is I’m confident enough to tell people this now . I don’t care what anyone says this is my body . We only have one so stand up for it. Advocate for yourself and you tell people what you need and how you need it. It feels good! This is the new you and acceptance is A HUGE part of healing and moving forward. Be positive. Reach out to support groups and be thankful good luck and his bless!
Kooky - We all have to be compassionate & patient for those who have had the impact of stroke. It’s such an ongoing journey for all. For those of us who have the privilege of walking beside those who have had a stroke- keep educating ourselves, check in regularly, and do justice to the journeys. We owe it to you. Seek to understand. All the best on your journey Chad.
Nanny - You summed up how I feel beautifully it is so difficult.
Hi Char,
I know that you have already seen these comments, but I thought that they may help other people too.
Linda Tait
I’m on he other end, at 55 my husband suffered a stroke. Physically it was his balance affected and touch down his right side . He can not tell the difference between dull / sharpe or hot / cold still in his right arm and to him it is constantly aching and feeling cold. He is walking normally on ok days. Biggest factor is fatigue, even sitting in the car on a trip he gets tried . Friends and family don’t see it or understand. He was a man that would start work at 6.30am now he sleeps till 8am . We live in a small country town so to head anywhere we have min 1.5hrs in the car .
People do not understand it is a brain injury you can’t patch it and it heals but never returns to full strength. As a partner I’m constantly thinking ahead and adjusting how we do every day task . Example hubby can’t hang out washing anymore on his own , looking up too much he looses balance. He can’t bring in a wheel barrow of wood for the fire ( well he can BUT looking down and picking up the wood than pushing weigh of the barrow ) he would be struggling due to balance .
Can’t ask him to do anything like take the rubbish bins out if it’s after dark as he struggle to walk in torch light . We where told everyone walks with the feeling in their feet he know walks with sight .
It is a very hard thing and people do not understand because yes on the outside as people say his a lucky one because visually he looks how he has always looked . We attended an outside funeral and I was conscious the whole time the amount of time we were standing for . We didn’t take one of the rare seats because of judgment example 55 year old man sitting and taking a seat from a 80 year old lady .
Not sure what can be said to make Chat feel better in himself .
It’s bloody tough and you’re not the only one . You can’t explain it to friends / family . All I say is you have to remember he has a brain injury and brain is very complicated and something that needs a lot of rest to be able to function 100% even when it’s not injured .
Sorry for the long essay, your not alone
Belinda Gibson
I tried explaining for years that things weren't the same for me anymore. They never really understood what I was saying though, so in the end I just told them that things are different for me now and I'm okay with that. If they can't handle it or have difficulty coming to terms with no longer being the older version of me, then that's their problem. Love them all deeply, but I can't be someone who's not there any more just to keep them happy.
Yvonne Denehey
Hi Chad. My story about becoming version 2 & losing friends is a long one. But I will tell you what I’ve learnt from it.
-Some people do not have the ability or the want to understand the after effects of stroke.
- I wasted too much energy & time trying to explain my new world accurately.
- I have come to really like version 2 of me & that is most important for my mental health.
- I put less time into trying to make “others”understand me & more time learning new things about “me version 2”
- what people think no longer matters as much to me. I am who I am.. take me or leave me.
you will work your way through this, it’s unfortunately part of our journey. All the best.
Jessica D'Lima
This is a tough one. My husband works in IT, when he had his stroke 10 years ago I would tell people he was Dominic 2.0 to help explain or give a relatable context to the changes. It’s like when you update your phone or computer software and there are some bugs that need to be ironed out over time. Hope this helps Chad. You are a survivor…congratulations
Caitlyn Grzmil
I emphasise with you. This is my current experience. All my 'obvious' deficits have resolved which (don't get me wrong) I am eternally grateful of. It's all the stuff you can't see that bothers me day in and day out. I don't feel like I have any words of advice other then there are others, like me, out there who understand what you are experiencing. We hear you.