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Just found this site, was pointed in this direction from someone on the UK stroke guide. 2 and a half years post stroke, and still wondering where I fit into the world now. I cannot work as I used to but work part time from home which gives me a certain structure, but Im very isolated and feel my world is getting smaller and smaller by the month.

So, Ive joined and hope to become part of the strokenet community. 

 

Thank you for reading.

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Welcome to the most exclusive club, nobody wants to join.

but here we are.

My stroke was on 11-12-13, approaching my 5th anniversary.

I tried to return to work and failed miserably.  I wallowed in self pity for awhile, praying someone would stop by just so I could talk to someone.

I finally realized I needed to take control ( right how much control do we have as a stroke survivor.)

I needed a new routine, since I was no longer working.

I figured out the public transportation system, I found a new coffee house in town.  we now joke that the coffee house is my new office.

I volunteer at a local hospital; working with stroke survivors.

so rewarding for me, and gives me a purpose.

I have written a book of poetry "SURVIVAL:  Life after a stroke.

Poems of my journey.  Available on Amazon under my given name (John Allen Yurgens).

Take advantage of this sight, visit often share all you want.  the ups and downs, celebrate all your victories, small or large, we love to celebrate with our fellow survivors. We are the most Non-judgmental group.  We are all different, as is every, rehab and recovery.  But many of the issues we deal with are similar to others.  Of course, what works for may not work for anyone else.

Be strong.

Stay Positive

Keep a stiff upper lip.

Okay, I'm a smart alec.  Humor gets me through the day.

 

Keep us posted on your journey and always celebrate any milestone.

Jay Allen

 

 

 

 

 

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WELCOME! Come on in, and set awhile. We have lots here to share about our journey on the stroke recovery road. And different ways of sharing. We have the message board, which you are on now, chats, and blogs. you can ask any question you may have here;

blog about it, or go to a chat group and share your question with the chat group.  Your world may not seem to be shrinking anymore.   Becky

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Welcome Pete. Finding this site has been so wonderful for me. It was the first place after my stroke that I felt not alone. 🙂 The forums here are great, there is chat (scheduled), a photo gallery, you can start a blog, many ways to get information and the other members are really nice. Very nice to meet you. BTW I'm Tracy and had a bilateral cerebellar stroke 7/5/15.

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Hello Peter

 

I’m glad you found us.

 

No question is to silly.  Venting is allowed.

 

Looking forward to sharing the journey with you.

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Hello Peter.  Like you, I feel isolated. My stroke was May 3rd, of this year.  I'm trying to find my new self.  The old one seems gone now.  I am happy to have found others like myself.  My name is Lisa.  Thank you, for letting me join all of you!

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Hi Lisa and Peter, it's always nice to meet new people getting on with this journey, although the reason you end up here usually sucks. As Asha says it's "a bump in the road" it doesn't have to be the disaster it feels like at first.  Life is full of changes you pick yourself up dust yourself off and start again.

-Heather

 

 

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Lisa, We'll always be here for you as you travel this road of stroke recovery. We're all at different places along the road, but we all have the same purpose- to get back as much as we can of what was stolen from us. We learn from each other and we support each other. Feel free to share whatever you want, and if it's answers you need, we'll either have one, or try to steer you in the right direction to find the answer. If you just want to vent, or share an accomplishment, that's OK too. WELCOME!   Becky

 

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Hello Lisa........glad you found the site. I have mainly been reading through previous posts and getting some perspective, and there are some amazing posts and nuggets of golden information from people further down the road than I am. Im not sure I have much positivity to add, but hopefully in time, i will be able to contribute more and that positivity shown by others will rub of on me. 

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Peter and Lisa, 

 

welcome both of you to this site.   Like others have said before, we've traveled this road and are still on the journey so we , speaking for myself here, can understand your struggles. I've been on this journey for just about 10 years and still don't feel like I belong. Having said that, not every one feels the same way after stroke. Mindset is a huge part of recovery but not every stroke , nor every recovery, are the same. Depending on issues we have a result of stroke can create different outlooks. Like me, I have 'invisible' problems so when people first meet me , they wouldn't never know I had a stroke.  But what they don't see is how I see the world through my eyes.  Dizziness, double vision, fatigue, nystagmus( eye bouncing)  palette in my mouth jumps causing twitching on the right side of face ( not common after stroke but apparently I won that lottery 😕)  and many more cognitive struggles. I used to enjoy going out with people but now I would prefer to never leave my house. Social Anxiety now is my bane.

    

But having said all that, my point is we all understand, some more than others. Having people who have never had a stroke, nor know anyone who has, try to understand how we feel is akin to trying to explain quantum Physics to a pre schooler and have them teach a class. They may just look blankly at you, and so would I to be honest, and that is how many people who don't understand would.  They live in their own world which is a non stroke world. We all lived in that world as well but we have to embrace our world now. That is not an easy feat. https://psychcentral.com/lib/preparing-for-grief/  or https://www.webmd.com/balance/normal-grieving-and-stages-of-grief#1   Here is a short read about the stages of grief. We often hear about  the 'stages of grief' after a death. Having a stroke causes a death of our old life. There is no exact time line for grief nor is their an order for them. Meaning, you could be in the first stage for years then jump to stage three then jump to five and back to stage one again. There is no right or wrong way to grieve, so don't be to hard on yourself. We can only do what we can do so make the best of it.  When you may hear 'It does get better' I know it would make me so upset for I wanted to get back to my old life but now , looking back on it, I see it as my brain will work as best as it can to bring us some normalcy. Our brain and body have to find new ways of talking to each other, so they can work on the same page, so sometimes I like to say we are turtles walking through peanut butter. We can still do many of the things we did before, we just have to find alternatives.  Somethings may be harder than others but we aren't the only ones who have challenges out there, we just have to look. Sadly, depending on where we live, some areas aren't adapted to accommodate those people so why not be the catalyst to get the ball going. If you want to do something, see if you can.

 

Social Anxiety and sensory challenges can be a huge hurdle so my old cognitive therapist told me to start in small steps. Ten years later, I'm still only in the beginning steps. Example: Going to a mall ( I refuse hands down..ugh) if you can drive or go with someone and go to the parking lot and sit there. And leave. Do this as long as you need to. When you feel confident, get out of the car a and walk to the doors. And leave. The point is do it in steps. We are so worried how other perceive us that we are embarrassed to go out. I learned, from my therapist, while going to a restaurant and we walk in to our table everybody is looking at us. But those folks are so deep in their conversation and world, the look and go right back to what they were doing. I walk like I'm drunk so I was always afraid and I used to bring a cane to justify why I was walking funny.

 

Now.. I frankly don't care.

 

I still don't do everything I want to but I'm spreading my wings more and more because if I don't who will? this is my life and I was given a second chance so I'm going to do my best to enjoy it.  90% of folks with the kinda of stroke I had die so I'm living for them ,too.

 

(( I hope I made sense. That is another challenge I have)):huh:

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Kelli..........you make perfect sense and you obviously understand and you put things into words so well, much better than I ever could, your posts (aswell as posts from others), is an up-lifiting experience. Whereas non stroke people say "you look so well", or "I understand"...........and its just empty words and they think they are complimenting you or doing you a favour by understanding, but it means so much more from a fellow survivor, because you really do. 

 

Thank you.

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hi pete & lisa :

 

welcome to best online stroke support group. Kelli nailed it, reread her words of wisdom, we all have walked the path you  you two are just beginning to take now. Since we all have walked on it  you two just starting, can tell you one thing for sure, there is life after stroke & that too fulfilling, but we have to do our part too, & grab opportunity that come along our way. life after stroke is not good or bad its just different.  I have learned few things that has helped me in my post stroke journey which I will share with you.

 

1. having routine in life helps build positive mindset in life

2. 30 mins of exercise helps

3. chatting & blogging here on site also helps big time, you feel less alone in your journey

4. try to be as independent as you can be, more you do fir yourself better you will feel about life in general.

5. just enjoy life, we all survived for a reason, so have fun  & make a difference in people who are still in your life. life is too short to be wasted in unhappiness.

 

Asha

 

 

 

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Peter,     It was probably my mail on the UK site which lead you to here! I've been ranting on there for some time hoping to convince the authorities to revert to the previous format which was excellent. The experts in stroke do not seem to realise that victims don't want official names for their problems, they need contact with others so they can compare and read about other's tribulations and attempts to return to some sort of normality.

 

Anyway, welcome and please join in with advice or just questions!

 

Deigh

 

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On 10/31/2018 at 7:20 AM, huntspete said:

Just found this site, was pointed in this direction from someone on the UK stroke guide. 2 and a half years post stroke, and still wondering where I fit into the world now. I cannot work as I used to but work part time from home which gives me a certain structure, but Im very isolated and feel my world is getting smaller and smaller by the month.

So, Ive joined and hope to become part of the strokenet community. 

 

Thank you for reading.

 

Hi Pete, Welcome!

 

I volunteered on this site, twice, until my eyesight started turning crappy.  It helped with my feelings of isolation - a lot! (I lived in the boonies, and couldn't drive anymore)

 

I now live a lot closer to the city, (All 10K of us) and qualify for different state programs - one I use quite a bit is getting rides to appointments, etc. I'm also in a recovery group, and the interaction with others makes a huge difference.

 

When I am by myself in the house It doesn't feel bad anymore. I have a medical alert which I wear around my neck all the time; I chat with people online or on the phone, so it is better then it was.

 

There are great chats here every day; check out the chat schedule!

 

:smile:

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Hi Lisa and Welcome. I encourage you and Pete as well to read lots of threads and ask as many questions as you want, feel free to vent (we all know I do lol but lots of us do and this is a great place to let it out), start a blog, join a chat, and check out all of the articles and information about strokes. I'm a lot like Kelli, social butterfly turned to the epitome of anti-social. It's not because I don't like people I just can't handle the overstimulation or agitation I feel around certain things i.e. crowds, noise, dark, too much light, just simply being put on the spot. I also have felt very isolated...out of necessity. Joining this online stroke group really helped and joining my local stroke support group has been a real game changer. Imagine being in a room and the whole audience (about 20-30 in mine...we keep growing) all listen and validate you and truly understand. POW!!! Mind blowing! This is how I am coming back from isolation. It's me socializing again. These guys and my local stroke group are like part of my family. It's been a blessing for me and I hope you can feel that too you guys. 🙂

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On 11/9/2018 at 7:33 PM, huntspete said:

Im not sure I have much positivity to add, 

Hi Peter

 

Just want to let you know, you don’t have to be positive to talk here.  We are hear to listen, support and advise.  Being who you are, happy or sad, is who you can be with us all, always.

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2 hours ago, GreenQueen said:

Hi Peter

 

Just want to let you know, you don’t have to be positive to talk here.  We are hear to listen, support and advise.  Being who you are, happy or sad, is who you can be with us all, always.

 

 

Hi Peter, Welcome!

 

(What Janelle wrote!)

 

:smile:

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Love the support offered here. Terrific resource. Pleased to have found it.

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That's one thing (support) that all survivors seem to want/need, and something that we have here in abundance. Because surviving is so darn hard sometimes.   Becky

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