Control (how do you gain it)

[adchill]

I feel like I am losing control. I try to talk to someone but all they see is that I can talk and walk so what do I have something to complain about (Part of me knows that is right) but then the other is. Then I get so angry because I am trying to communicate and live but how. :Tantrum:

 

I am told just pull your self up, put on some makeup, wear a dress. I don

[dstraugh]

Amy,

I can understand how you feel "jumbled" inside. There are days when I still feel jumbled - Our brains experienced a trauma which will take time to heal (who knows for how long as we). There are good days and bad - sometimes it seems like the bad ones overrule the good. We here, as survivors and caregivers can understand that. Others we have contact with may not have a clue. They don't mean to be mean, they just don't get it. Or, in their minds, they're maintaining a positive mindset that one day the survivor will be back to prestroke self. For us, this is our reality. For me, I look at my life now as a second chance at living. I have much to be thankful for. I survived this stroke as I have survived other horrible things in my life. Of course the stroke has left me with physical disabilities for now - there are things I must do differently, if at all. I try, too, to have patience and educate those who don't have a clue (like family

members - which can be the most difficult as they can be in total denial. Well, I'll get off my :Soapbox: for now. If I can be of further help, you can always PM me. Take care.

[2ndChance]

You can feel in control again if you make your life small. I miss the old me too - but she is dead and she's never coming back, so I decided to stop daydreaming about the old me.

[kanderson]

amy, i do understand what you are saying, i too sometimes feel that way, all confused and jumbled. our brains have taken a direct hit by stroke and all i can do is relax take some deep breaths, to try and clear my head and calm down, sometimes it works and others not. i also take my meds the same time every day. i hope you start to feel better soon. kimmie

[bajie57]

Amy I've a suport group and it is helping me to get out and talk to people in the same boat.

good luck we cair

baji57

[cam1960]

Hi Amy,

I wish I had a 'cure' for you, but I do understand how you feel. People give me that look too, like what's wrong with me? I'm walking (a bit crooked). They can't grasp that my brain isn't working up to par. I speak a little slower and search for words that used to come easily.

I struggle daily with mood swings, and trying to accept myself as I am, even as I try to regain what I can.

We may not be perfect, but we are survivors.

Hope you get a good nights sleep and have a better day tomorrow.

:hug:

Carol

 

[bstockman]

I think we all (here) the jumbled up feeling.. We try so hard ... yes we can walk and talk, and yes we are thankful to be alive. But we do miss our old selves. One thing I have learned is to slow down.. my mind raced so fast and I couldn't keep up, thoughts wondered from one thing to another.

 

I did start with some simple compter games .. so I could learn to focus and concentrate again.

 

I will never be " who I was totally" there are some changes.. but I still have my humor, my grandchildre, things to make me smile and happy to be alive. Yes life is different, but it is still good. It takes time to adjust and also to learn how to do things differently now. It has taken some explaining to family. Not that I want to be coddled or treated different, but just have some patience ... and understand there are some differences and that I get tired easily.

 

It does get better, it is just sooo slow.. and people don't understand .... it is not an easy thing to go through.. but in time things get easier and people get used to the "new you"

 

[jwatrous]

Amy -

No amount of medicine will change your stroke, but if you are too depressed, maybe something light from your doctor "might" help -

I am 21 years post stroke, and you are right, people will stare and unless you have had a stroke, you do not understand, but it is an awful thing to go through, but the alternative is worse -

So, hang in there and try to focus more on what you CAN DO

June, from CT

[slmstrokeangel]

I had all those same feelings after I stroked in 2003. I assure you it does get better and I don't miss the old Sharon at all any more.

[lisas]

HI AMY,

 

I CAN ONLY SPEAK FOR MY DAUGHTER, AS SHE IS THE ONE THAT HAD THE STROKE. RACHEL IS 23, STROKING LAST YEAR AT 22. SHE DOES TAKE A LOW DOSE OF CELEXA-ANTI-DEPRESSANT ALONG WITH HER MANY OTHER MEDS. IT DOES HELP HER. WE TRIED TO TKE HER OFF, BUT MADE MATTERS WORSE, CRIED A LOT.

 

SHE 2 IS UPSET, WANTING 2 B HER OLD SELF AT TIMES. SHE LOVED TO SWIM, RUN AROUND WITH FRIENDS, BE NORMAL. SHE STILL LOVES GOING TO THE SHOW, SHOPPING, BUT TIRES VERY EASILY.

 

RACHEL IS DOING MUCH BETTER THEN SHE WAS A YEAR AGO, BUT CAN BE DIFFICULT AT TIMES. HANG IN THERE. COME HERE AND VISIT OFTEN FOR SUPPORT AND WISDOM. I DO. TAKE CARE :hug:

[scrappier]

:friends: :friends: I'm not sure how long its been since your stroke?

 

But finally after 4 years, I feel like I'm at least less anxious. I know what you mean about control. For a bit at first, I had to start small. I used to be organized (before stroke)but it took me a while to have my brain feel less scattered and was able to start with a sock drawer and work on up...

 

It really does get better with time and you will settle down in your mind. I still have things I get anxious about, like driving at night, and a worse fear of heights now, and still have trouble regulating my body temperature in the cold.

 

Just keep trying to do whatever makes you anxious (think be brave!)and you'll become better to it. We've all been there but it levels out, your brain will reorganize itself...and some of the old you may shine through or meld with the new.. :beer:

[rdittman]

Hi,

 

As a stroke survivor, nine months now, I can relate very much to what you say.

 

I started out wondering whether I was going to have another stroke, and being very anxious about everything, to tackling small tasks, to accomplishing bigger tasks, and so on. I have my good and bad days still, but now know that my real limiter at times is myself. I need to keep my brain mentally active, if I can't be physically active, as I was pre-stroke. As time goes on, I see more and more of the future, albeit a bit different, but certainly more bright than 9 months ago.

 

A for what others think and say about you; take it with a grain of salt. They may see you and see the pre-stroke you. Often people don't know what to say. Give yourself time to adjust, and give others time to adjust too. Time, time, time...

 

I wish you the best in your recovery.

 

Bob

[kaizach]

Hi Amy,

 

I definately understand what you are feeling. I had a stroke in May 2005 at the age of 32. My life was going great being married, mother of 2 and great job. Almost 2yrs later and I'm still fighting to find myself. In the beginning I was paralyzed, could not speak and my right side was affected. The stroke has left me visually impaired (i am legally blind) and my memory (short term mostly) was affected. Although now I can for the most part care for myself (dressing, bathing, ect..) the reality is I am a shell of who I used to be. It is true that people say be happy your alive and life goes on. I say to those easier said than done. I found that I had to stop living in the past and wanting the old me back. I had to grieve and mourn for the me that use to be and learn to love and accept the me that is now. I will not lie it is not easy, I am still a work in progress (LOL). I realize that sometimes people whether it be family or friends are just as afraid as you or me to say goodbye to old person and embrace the new individual before them. They do not know what to say or do or maybe even how to feel. Sometimes this becomes very overwhelming and frustrating because we want them to see our frustration and understand it, when in fact we are still trying to understand it ourselves. I myself have struggled with depression since my stroke. I feel that I have earned the right to be depressed, angry even bitter. I don't know if you have gone for any counceling but it has helped me to speak to someone who is not family or friend just a third party who will not judge or criticize. Someone to just hear me vent. Having a stroke is life changing experience not only for the survivor but for the family as well. It is important that you communicate and let others know how you feel. Don't hold back just to please others that is only sacrficing your well being and recovery. I learned that recovery is not only physical but psycological and emotional as well, all being equally as important. I wish you well and hope to hear from you soon.

 

Dee

[suebee2]

Amy, we all are going through similar things in our lives. I had a left side stroke that left me with a lot of difficulties. I look fine, the brain is oatmeal. I tire very easily and at inconvient times. My short term memory so bad I don't read books anymore. I never understood why anyone wouldn't love to read. Now I know you have to be able to remember what you read yesterday, last week, an hour ago. I read the newpaper, but the next day I can't remember one thing I read about. A lot of us have disiabilities that aren't as obvious but the are just as real as one that can be readly seen. No one can say who wins as the best-worst survivor. Often people around us want us back as much as we want to be back. They may think if you just tried harder..... They don't see how hard you are trying. I don't always manage, but I try to forgive people who have not walked in my shoes and truly wish they never do. Also I'm almost always up to see the Sun come up. I have never looked at it and thought "This could be a better Sun rise." Good Luck.

[SURVIVOR112261]

Amy: I'm taking alot of meds. also, had 3 brain aneurysms, almost a 2 year stroke survivor. Don't let anyone depress you. You're a survivor and don't have to impress anyone but yourself. I had my husband walk out 3 weeks ago, but I'm still here. My doctor put me on one pill per night, and it helps. I was one of those people that thought people who went on nerve pills were crazy. It has helped me sleep at night. I didn't take that pill for him, I take it for me. My husband was my caregiver. Imagine that... I need help bathing and dressing, lucky you... God Bless... Be thankful for what you can do, and don't try to live in the past. The past will never come again, but thats okay, "I am here". Even without my husband I still have hope. Never give up hope. Just live in the present...

[Dickons]

Hi Amy,

 

I understand the jumbled feeling and the assumptions of others. I miss pre-stroke me too. No one can walk a mile in your shoes so can only give advice from their shoes. Do what you need to do, create your new life, give yourself milestones based on your expectations, no-one elses.

 

It is what it is, we hold the key to our own satisfaction. Don't allow others ideas to get you down. (I know that's way easier said but done but...)

 

Take care of yourself and you will find your own peace.

 

Kind regards,

Dickons

[Guest hostmel]

Hi lady -

 

As we've talked offline - I want to reassure you again here - crying is okay - mandatory for most of us. /it's okay to feel confused and feel like you just stepped out of a tornado and found out that your best friend (the other side of your brain) passed away. Recovering from stroke is a grieving process - just because someone gets over things differently/faster/slower than you does NOT mean that you are doing anything wrong.

 

As a fellow survivor, I think you will find that if your life was very busy pre-stroke, the hardest part is to really quell that urge to be busy and enjoy the slowness. Also the veil that held back your true emotions about things may be gone and you may no longer b able to keep your opinions and emotions held back or at least in check - sometimes I feel like a four yr old when I blurt out things.

 

And as a fellow former programmer, I know that the other item weighing you down is "what am i going to do with the rest of my life?" " Okay great I went through all that advanced schoolng for this? Now I can't even add???" You may feel useless - but you are NOT!!!!! There is a reason for everything - if for nothing else, it brought you here to us :blush: You are already loved just for who you are and for reaching out here in our community - in your new community :cheer:

 

Keep coming back. You are six months out - in another six months you'll be even better than you are now and we will still be glad to have you around

 

Much love, soothing thoghts, and comfort coming your way.....

[Phyllis4732]

Amy, I'm not trying to say that when people don't understand, they are "terrible. They just haven't had the experience and have no way to know how you really feel. Even if you tell them, there is no way they can even imagine it. Just think, before your stroke, what you would have thought. This is what I am saying.

 

Unfortunately, it will never be any different. It's like having children......If you don't have any, you really don't know anything about the experience. Unfortunately, we just can't push a button and experience things.

 

As for meditation, I was the same way when I had my first stroke. Then I became involved in Reiki and there is an RN who is a Reiki Master, who can get me all the time. I guess something in her voice quality does it. I's suggest going to a Reiki Circle if there is one in your area. It is usually free or there may be a "love basket" but you aren't forced to put anything in. There are several people and the lights are low, there may be soft music and it is a very quiet peaceful time. A meditation is given and then you receive Reiki. Don't be afraid, just enjoy and "go" where the meditation suggests. I have a beginning of a meditation. Perhaps I can send the link to you. It is by a Reiki Master where I used to go, Hit my PM or send me an email and I will send it to you. It will give you some idea.

 

Phyllis

[nurse Dianne]

 

 

I can relate to how you feel- I guess most all of us do. I had such an instant response of support and validation of what I was feeling from all of the great friends I made on this site when I stroked 2 years ago.

 

I knew I was hearing all the things I need from everyone here and I am so grateful for that.

If you are having problems with depression- I would suggest talking to your MD or someone who can assist you in getting that evaluated. Sometimes medication is appropriate-but counseling- short term or long term-depending on your need- might be beneficial also. None of us can diagnosis you over the internet- but you will get some understanding advice from people on this site.

 

Take care.

Dianne

 

 

[shakeyleg]

Hi Amy

I know how you feel I have some family members that are sick,and my older sister thinks that I should be looking after them :wicked: Just because I don't have any deficits don't mean that I am my old self.Some people don't understand what goes on in a stroke survivors mind.I'm post-stroke 2 r's this june had mine at 37.I still have days when i just want to cry and have someone tell me why this happened to me,but until then I try to carry on and I hope you can do the same.It does get better with time.

 

Take care Kelly a.k.a.shakeyleg

[GeorgeLesley]

Amy,

 

You are learning one of the sad thruths of this world. That is people do not have a clue how to deal with those of us that have a major medical problem. I saw the same thing when my first wife was dying of cancer. No one wanted to hear of the sleepless nights, constant sickness from chemo, etc. All they wanted to hear was that she was "getting better". After she died my phone number was apparently lost by all. Same thing now with me. The only thing I know you can do is follow the wonderful advice you are getting here by others far smarter than I. Read and reread the wonderful posts here. Please try to start setting simple, achievable goals for yourself. Start inventing the new you. The "old" you is gone. Recover and rebuild what you can, discard that which wasn't too good anyway, look forward not backward.