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I Don't Know Who To Talk To

young stroke

17 replies to this topic

#1 gabbyjose

 

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Posted 15 September 2013 - 09:08 PM

I was 19 when I had my stroke, in February 2013. I was at college. My parents came up and friends came to visit me in the hospital and it felt like it was going to be okay. I gained enough strength to walk relatively easily. I could still talk. I only needed to take a couple months off of school. I thought I was good to go.

But I'm still sensitive to lights and sounds. I have chronic migraines that medication won't fix. I get tired easily, but I also can't sleep at night, and my migraines get worse the less I sleep. I have partial seizures and my doctors haven't found the right combination of meds yet. What's worse is that right now, they're telling me I'll have to wait a bit and see how things go.

I try to do what all my friends do. I stay up late and hang out and sometimes it feels okay. But other times, I go to sleep too late and wake up the next morning with a migraine that keeps me in bed all day. I have tremors sometimes and body ticks. I try to keep up with my school work but sometimes it's too much, and I feel like I'm not trying hard enough or I'm letting people down. I have trouble reading and concentrating sometimes and it's hard being an English major. I don't have the energy to run a lot, even though I used to run 35-40 miles a week. It's hard having difficulty doing something I used to love.

Sometimes, I don't feel like myself. I don't recognize my past life or sometimes I don't recognize myself when I look in a mirror. I don't always recognize people that I know. I barely talk about this because it makes me feel like I'm crazy. But it's like I'm always having an out of body experience, and it's hard to engage in the world when I feel like that.

At first I had a blog about what happened to me because everyone wanted to know how I was doing. I made it funny so people wouldn't worry. Even when people ask me about it now, I make jokes because laughing about it is easier than telling the truth, and I figure that talking about it a bit will keep people from asking more.

I see a therapist, but for some reason, I'm scared to talk to her about certain things. She says I have trouble opening up to people and now I hide even more because I have all of this new baggage. My family tries to be there but they don't understand and often times they stress me out more than help me.

I'm talking about my issues less and less. Everything I suffer through no, no one else can see it, which makes it easier to hide. But it's also incredibly frustrating because no one can tell that it's actually really hard for me just to do simply, daily things.

There are no support groups in my area. I wish I had someone to talk to who could kind of understand what it feels like. I'm scared to think that my doctors can't figure out how to help me with the migraines and the seizures and my issues with familiarity. I don't talk about my worries with my family or my friends or my therapist. I try writing about it but it isn't enough. I wish I had another person nearby that knew how to help me.


#2 Ethyl17

 

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Posted 15 September 2013 - 10:04 PM

Gabby: you are way to early in this recovery and way too young to have had a stroke. That being said, you have to deal with what was handed to you. Honey, you don't write about family, but right now you need help. You don't just have a stroke and wake up and everything is back to normal.

I understand the age issue. Your friends have no concept of this and you don't want to be the "downer". But, honey, you suffered a major trauma and you need time and space to recover. I do hope you have a best friend at school that you can share with. Someone who has your back. You may have to cut back on courses for a year or so and no, you can no longer party all night. You don't have to make a big deal, just at 10pm, time to go!

No matter the age, we all stress rest. The brain heals best with sleep, second best with rest-true time out. Unfortunately you have to plan this in to your day and NOT apologize for it.

We have several here in your age group who hopefully will chime in to help. In the meantime, with school work (my Bruce was an English major-I know exactly the work load you are trying to carry), exercise, good nutrition and naps and bed early. Those are your priorities. And you don't have to explain yourself to anyone. Open up to your therapist - he/she is there for only you, does not judge. That is your safe place. Debbie


#3 thejule1

 

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Posted 15 September 2013 - 10:15 PM

Gabbyjoes welcome. So sorry you are having all those health issues. I hope you can get more help soon. Meanwhile come back to this board and talk, blog or go to one of the chats. You will find a lot of support and help here.

Julie


#4 mcdube

 

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Posted 15 September 2013 - 11:15 PM

Hi Gabbyjose, welcome to the site. Debbie gave you good advice, do talk to your therapist or you will crack. Its not easy to go through a stroke alone as you have no one who understands. You dont have to try to keep up with your friends. True friends will understand your limitations and respect that now, you have to think of you and say bye bye when you are tired. You must take care of your health and respect that you do need more rest now. Its really sad that at such a young age you have to refrain from overdoing it. All the best to you. Here are some links to some good information and do come back and share with us, good or bad. We can help and support you.

mc

A survivor's Bill of Rights

http://www.strokeboa...?showtopic=2094

The Five Stages of Grief

http://www.strokeboa...p?showtopic=857

A Letter From Your Brain

http://www.strokeboa...hp?showtopic=83

Classic Postings and Advice

http://www.strokeboa...hp?showforum=23

misc. info

http://www.ehealthmd...e_recovery.html


Caregivers’ Bill of Rights

http://www.strokeboa...p?showtopic=781

Caregivers’ handbook

http://www.strokecar...g/handbook.htm.


#5 Ksmith

 

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Posted 16 September 2013 - 11:47 AM

First off welcome
Secondly, you are still recovering from your stroke in February whether you understand that or not. Your brain has been through an attack. As with any form of attack, your body has to heal. The same goes with the brain Just because you don't see a problem doesn't mean that one does not exist.


I can relate to your sensitivity of light and sound. I have to wear my sunglasses inside most places I go. My uncle had the same form of sensitivities that you explain, and he went to go see a neural ophthalmologist. After some therapies he was almost completely cured after his TBI.

Being young it's hard enough when you don't have a stroke, I cannot imagine how difficult it must be for you. I think it will be very beneficial for you to open up with their therapist. You have to acknowledge and own your concerns to deal with them better.
It looks like you found the answer to why you were always tired and with migraines. Staying out late. Try to curb going out just until the doctor can regulate your medicines, and you have sought help with your eyes.


I was just recently diagnosed the form of amnesia. I can understand what you mean by not recognizing yourself in hard time trying to remember what was. One thing that I found out over the course of my recovery was, don't focus on what was only what will be. I lost the first 34 years of my life but you know what I can never get it back and that's okay because I put a focus on the next 34 years of my life instead. You and I, as well as other people, call it a blessing or curse, have the gift of not being able to compare ourselves to what we are now. You might see that as be a nightmare, but trust me when I tell you it makes life a lot easier.


#6 englishlady

 

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Posted 16 September 2013 - 01:29 PM

Welcome Gabby, My heart goes out to you. So young, but Gabby it happens so lets move forward.
Like Debbie said, please go and talk to the therapist, You need to unload, keeping it inside is not good for your health. I know you at college, and it is a wonderful experience, away from home, lots of things happening, my son at college, but like I tell him not everything that is jumping off, do you need to be jumping. My dear, you need rest, the stroke is a speed bump in your journey of life. Life goes on ,but you need to slow down. The doctors have told you that it takes time to find the correct combination of meds, again it takes time. I know you want answers now!.
So Gabby, go talk to the therapist, and this web site is a good place to vent, and get things of your chest. Also chat rooms, that you can join.
Keep us posted Gabby.

Yvonne


#7 becky1

 

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Posted 16 September 2013 - 05:17 PM

Gabby, Your brain is trying to talk to you, and youmust learn to listen to it. I can't explaion all that is happening to you, but I know this: Every minute that you are awake, your brain is working. You are seeding things hearing , tasting, smelling, or touching things, walking, talkimg, and processing info. No matter what kind, where, or how bad your stroke, your brain may have trouble doing one of them, or all of them, Like a good trouper, it will try to comply with your wishes, But, when it says it's tired, listen to it, and, give it time to rest. When you are asleep, and you're not talking, walking, etc., its' energy can turn towards dealing with the damage done by the stroke. And, Gabby, please tell a doctor all that's going on, because they can't help if they don't know. Likewise with your therapist. If you do not feel comfortable sharing with him or her, then find one you feel comfortable with. Please keep coming to SN. We may not undrstand all of the time, but we're good listenrers and cheerleders. Becky


#8 susanmarshall

 

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Posted 17 September 2013 - 04:21 AM

Hi Gabby,
When I was in rehab I thought everything would go back to "normal." Not one person. physician or otherwise, told me that it wouldn't - I had to slowly learn that on my own.
One of the major things I lost was the ability to drive. Dealing with that loss was HUGE for me, but got me to search the internet for support, and I found this site. It's the best I've found for me.
It's a relief to write and chat with people who "get it." People who haven't experienced stroke may have the best of intentions, it's not the same though. So please use this site, pick our brains, vent - whatever!

Susan :console:


#9 gabbyjose

 

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Posted 20 September 2013 - 09:35 PM

Thank you
This is the first time I've found people to talk to because there's no one I know of in the area.
It's not always bad days. A lot of the times, I can do the things I used to do and enjoy. But some nights it gets hard. Like every college student, my friend groups are always in flux and some nights I feel like I have no good friends to hang out with because they may be busy or doing something else. And I'm experiencing partial seizures which, for whatever reason, make me panic. They haven't been getting better and my doctor says there's nothing to do now but wait and see how the medication works.
I'm sitting alone in my room now, waiting to see if my friends respond to me, and I had a partial seizure and while physically I'm fine, they terrify me. They make me feel alone. It helps calm me down if I'm with people but often times, like now, I just have to wait it out. And these make me feel so much more alone than I already feel when friend things go wrong.
I don't know what to do. My seizures aren't bad enough to merit a trip to the ER but it feels terrible right now. I don't know if it's the seizures or being alone, but this is the hardest part sometimes.


#10 fking

 

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Posted 21 September 2013 - 12:03 PM

Welcome Gabby to this support group and we will help and talk to and with you all we can on ANY subject. Chances are good that a member here has been through the same thing you wish to talk about in your case! The hospital I was treated in gave me the name and phone numbers to contact a local support group and one of the guys gave me this site to join and I been right here for all those years.

Perhaps many of the questions you have and the things you wish to discuss for more understandings can be done right here! I learned so much by being on this site from all those ahead of me. Take a look at all the different Forums and start asking questions the answers will come quickly I know 24/7!!

Take care, and you can chat too daily check the schedules!!


#11 follys

 

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Posted 21 September 2013 - 01:21 PM

hi gabby. let me also welcome you to this site. the people here I have found are understanding in a deep sense - they have all had there life disrupted by a stroke. but you, I and the others have another thing in common. we are all survivors. that's important. i'm at the other end of life (age 70) but can still remember being 19 and how difficult this must be for you.

you do need friends gabby and your first friend should be your therapist. for him/her to be your friend he needs to understand you and what your fears, concerns are. I think from your posts above that you are a reasonably honest person and should really have no problem sharing your life with your therapist.
your second friend(s) are all of the people that are in this group. there is not a judgmental bone in any of our bodies, and in fact quite the opposite. we want to understand and can help you simply by saying we understand. it has been a good help to me over the last several months since my stroke.

as fred has said above, start a topic that is of concern to you. you will find both the understanding that we all need and insight into your concerns that many people will offer. best wishes gabby! do stay in touch!

david


#12 englishlady

 

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Posted 21 September 2013 - 08:31 PM

Hi Gabby, just read your post about your seizures. Please mention to your doctor what is going on. Of course you are scared, nothing to be ashamed of. It is hard been by yourself and not knowng what is happen to your body. You are a brave young lady, but let the doctors and the therapist help you.

God bless, keep on posting.

Yvonne


#13 Ethyl17

 

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Posted 22 September 2013 - 09:32 PM

Except Gabby - you do know exactly what to do, just need to push yourself. You pick up your books and head out to the common area and find someone to study with.

Your friends are not going to recognize this or necessarily respond to it. You have to figure out what you need and then go for it. If you are tired after your seizure, lay down and have a nap. If you are anxious and no one is in the common room, go for a walk. Head over to the dining area and get a snack. Head to the library and find a study group there. Take a shower and relax a bit with a cup of nice herb tea. Until you take charge of your recovery, you will continue to feel alone and abandoned. Even if you just go over to the gym and watch a pick up game of basketball. Debbie


#14 DaveO

 

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Posted 22 September 2013 - 10:20 PM

Welcome Gabby!

Hang in there! From my experience, it gets better with time. Hopefully your doctors can get your medication figured out soon. I have a 19 year old daughter so I understand a little bit about the importance of your friends. I hope your friends understand. If they don’t, they don’t. We tell our daughter that most of the friends she has now will likely not be her close friends when she is done with school.

I didn’t have a support group I could attend either. There were some available, but for me I made a choice to go back to work. The support groups met during work hours. I’m fortunate that around this site, it is always available.

Another way to find someone you can talk with in person is to find a local non-profit organization for stroke survivors. I found the Minnesota Stroke Association. I’ve meet some really good people there. They formed the Act FAST running team. We are running our first race as a team in two weeks during the Twin Cities Marathon weekend. The team is made up of stroke survivors, their caregivers, and friends. I’m running in the 10 mile event. I met one caregiver who is running the full marathon. I read in your post that you ARE a runner. Don’t ever give up, ever!

Dave.


#15 gabbyjose

 

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Posted 26 September 2013 - 08:28 PM

Thank you all. You don't know how much these responses mean to me. It's nice feeling that there are people who understand what it's like and understand that certain things that look simple are really hard to do for me. I'm still trying to figure out how to talk about it to people around me.
Do you have any tips on how to share with others who don't quite understand?


#16 fking

 

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Posted 26 September 2013 - 08:34 PM



Just remember we will pull you up with us and will never pull you down, you had enough of that already on your own before you found us on this site!! We are all here to learn and support each other as best we can and know how!


#17 Ethyl17

 

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Posted 26 September 2013 - 08:53 PM

Gabby: one of Bruce's college roommates and dearest friends had a daughter who recently stroked during childbirth. She is 30. Her Dad says to this day, he is so thankful he took such an active role in Bruce's recovery even tho he is cross country from us. He had to get his daughter through this, her husband and family. Grandma had to tend to the baby who suffered no ill-effects at all and her older brother.

As difficult as this is for you, you have become a Stroke Advocate. When friends ask and are concerned, you explain. You don't have to go into gory details. Just say you stroked and there are side effects that will be with you in the long haul. You are working towards recovery. You need their strength and help because you tire easily, can not party and have to see to your studies and your recovery. Those are your goals right now. You hope they can accept that and not judge you. And any help is welcome.

Gabby, I am a Nurse. I deal with stroke every day in my job. But nothing prepared me for it happening in my own life - my husband. To have to deal with it every single day, all day. And yes, everyone here will tell you when people realize how long this recovery takes, they will bail on you. People can help in the short term, but when they see that this is years - not weeks, they step away. You accept. It is not personal. People have their own lives and goals. But for those who are in it for the long haul: you embrace, share. It is important for them to know what is going on with you, what is working, what is not. Try to be as open as you can and honest. "I am really tired right now and need some time out. Can we meet up later and finish this project?"

Its a learning process. You will know who you can trust to share with and who just has to accept and either support you or bail. Just takes time honey. Please go easy. See to yourself and the rest will come. Debbie


#18 bigrob2945

 

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Posted 11 October 2013 - 11:14 AM

nice to meet u Gabby, im sry to hear u r having trouble coping with your newfound life. I also had a stroke while in college, due to a freak sports accident though my symptoms r wholly different than yours. when u say its tough for people to understand what u r dealing with because u look normal, I am exact opposite. the totality of my issues are physical so everyone who sees me knows something happened to me. in many ways I feel im lucky for that, because upfront people kno im handicapped. u say that your nemesis now is talking to people about your plight, ive found mine is having too much idle time where my mind wanders to things like what if. our issues might b different, some solutions might prove similar. ive found if I cant rely on others for help, I can rely on myself so I try to set new goals I can accomplish so I still feel a sense of worth. at the moment I am working on my ph.d., so that keeps me busy. I live in rural Arkansas, so like u there r no support groups within a 3hr drive for me to attend so many of my issues remain unheard. look for ward to getting to kno u Gabby, keep battling, hope dies last.






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