I can't take this
 

It's been forever since I posted. (I feel like this is confession) I hate not working, I just had stroke number 5 2 weeks ago, my wife hasn't wanted to be intimate for 6 years now (I think she's afraid I'll stroke out, and she has some issues of her own) I had to retire from fencing. Arrgh.

I'm so tired of this, some of the volunteer places either have things I can't do or don't take me for another reason.

I'm tired of sitting in the house and I'm entertaining other options. I got a camera to stay in touch with my friends around the world and have used it three times in two years. Thanks for letting me rant.

Oh, and I forgot one. Because we pulled money out of retirement money to buy and remodel this place we have a tax bill that we will be paying for the next 6 years.

I am sorry to hear you had another stroke just two weeks ago and I hope it did not do any damage.

Five strokes!?
Are any of your health care professionals giving you any idea why this keeps happening?

What a frightening ordeal it must be to have a stroke.
WOuld you mind explaining what it feels like when you have a stroke and what is done for you medically when it happens?
If it takes too much time and effort, don't worry about it. Just thought it could be a learning experience for all of us. I know about TIA's and I know about strokes that cause paralysis/brain damage but apparently there are strokes that fall along a continuum of severity between those two extremes.

Wishing you a complete and speedy recovery.
Diandra

Well, I blame my Mom. No, seriously, her Dad and brother died from cerebral incidents. Each stroke I have seems to strike a new area. Typically, for me, my speech get slurry, I have trouble with balance and just moving in general. I can fall over just standing there. The prognosis way back after the big brain surgery was I most likely would continue to have strokes and just plateau a little lower each time. My right hand is a claw and virtually useless.(good thing I'm left handed) The problem is that as cliché as it sounds unless you've
had a stroke you really have no idea what happens. Oh you can explain it medically but try it from this side.

I was a division 1 basketball player in College, a decent chair fencer, But now I can't even do that. I'm coaching my grandsons basketball team. I just got certified and licensed through USA Basketball as a youth development coach. Coaching 9 year olds is like herding cats. I asked the league director if the coach's book comes with a bottle of Xanax. Not having a useful right hand and no balance I can't demonstrate things.

My quality of life sucks and I'm tired of it. It would just be easier for folks if I wasn't around.

Fence, for what it is worth, life will not be easier for your loved ones if you were not around. I watched a Tv show today, in it, a psych said to her patient; do something different today, something that will bring you happiness, something you would not normally contemplate doing and tell me of it next time we meet. It struck a chord with me, don't know why; but I'm going to try and do something different today for sure.

Pam,
That sounds like a good plan for all of us. Now you have me thinking......what should I try/do today????


Gerry

Fence,
If you got this far with coaching 9 year olds; I'm pretty sure you will figure out a way to demonstrate on their terms.
Please don't give up to something that will bring you joy and pride in your accomplishment. Also, they will probably enjoy what novelty ideas you come up with.


Gerry

Thanks for the explanation.
I am sorry to hear about your really shixxty prognosis.
I can't imagine what it is like to live with always waiting for the other shoe to drop.

It doesn't sound cliche at all to say you need to experience it to get it.
I've had seizures and migraines and some brain damage from an infection, that affected executive function, and it is hard for people to understand those three things, let alone the effects of them. I certainly did not understand a migraine or a seizure before I had them. The lost of executive function after the brain infection...well forget trying to get people to understand that😏

You described physical issues like poor balance, slurry speech, claw hand from your strokes.
Does it also affect your cognitively? Do you have trouble with memory or thinking clearly, figuring things out? I hope not.

As far as things being better if you weren't around, I'd venture a guess that you are the only one who thinks that way. If you are a grandfather who is loving enough to want to coach 9 years olds, I bet you are are a pretty special guy.

Let yourself be down for a bit and do what you have to, to indulge that awful feeling of thinking the world is better off without you. Go to a therapist or a support group(or just keep coming back here) and work it out. Then do exactly what you have been doing, go for the joy in life, no matter how limited it may be. I have no kids or grandkids so the thought of coaching my 9 year old grandchild sounds heavenly to me...even if they are like herding cats.
If you get tired of that, be a big brother for the big brother/big sister foundation.
There are also volunteer jobs that are phone based(reassurance programs for people who are alone and stuck at home). I don't know if this it is still around but I used to work with the R U O K program. Calling the same person every day to checkin and have a chat. I called the same person for 5 years and we had a lovely relationship.

As many of us were brought up to understand, there is ALWAYS someone worse off than us who need our help. When I lost my job to disability after Lyme Disease/brain infection, etc...I walked down the street to the local hospital, told them my honest limitations and asked if there were any volunteer jobs I could do. I only worked 3 hrs each week in the ICU dept but, it was one of the best jobs I ever had. Life is quite real and in your face in an ICU. I learned a lot the few years I was there. One night, a man my age came in with his wife. He said,
"she just kept saying all day long, I have a bad headache". Turns out, she had a brain anyerysm(sp?) and ended up completely incapacitated and had to be placed in a nursing home, for life, and she was in her 40's.

That day I said to myself, no matter what, I am going to push myself every day to do what I can, no matter how hard it is. This gentleman and his wife were close in age to me and my husband and our life circumstances were almost identical. I just kept thinking, that could have been us.

Please keep coming back and talking....you are not alone.
My best, Diandra

Hi SDFencer

Although I've not had a stroke I do have some cognitive dysfunction (poor memory, concentration, etc). I also have some physical limitations due to chronic illness and injury.

It is a struggle each day to do the things I want to do but if I strive to do something that I think I'm unable to do and I actually achieve it that feeling of success outweighs the frustration of the failures so I keep trying.

I'm not by nature someone who suffers from depression but I have found that different medications have an effect on whether I feel depressed or not - this is something you may want to look into if you are on any meds. You can research meds. individually but also look at interactions between meds. Others here may be able to help with their experiences.

Diandra - If you want an insight into what it's like to experience a stroke there is an amazing TedTalk by Jill Bolte Taylor - a neuro scientist who had a major stroke.

The most popular talks of all time | Playlist | TED.com

Hi, I just want to cry all the time and I miss working like crazy. Before all this crap happened I was the General Counsel and Board Secretary for a company out here.

I do have some short term issues occasionally, but I've learned work arounds. I had worked as an expatriate in 13 countries and at that time I was doing stuff in 3 countries outside the US.

I still stay current on things and people still call me occasionally for help.

The whole thing they tell me is quality of life, I feel no quality, except when I'm around the twins (9year olds and the granddaughter a) But of course I can't see them all the time since they don't live with us any more.

People always tell me, "well, it beats the alternative." (how do they know?) or there are others worse off, etc. I feel for these people but this is me.

I'm about to explode.

Dear SDFencer
 

Debi, thank you for sharing, and yes I read your whole post. Sharing is sometimes cathartic don't you think. I cried reading it, for you, for your loss and for your love. My DB is home ill today and yesterday. I'm going up to the front room right now just to hug him.

As for intimacy, I think many of us face that challenge - including those who are not suffering with chronic pain and or depression. I don't believe it's a conscious choice, it's like you wake up one day and think wow, when was the last time! You make a pact with yourself to make more of an effort and then wonder when the energy to make the effort will come from! At least I do anyway. I'm off for that hug now, no shades of grey though!!!!

Debi,
Please don't ever feel sharing is anything buy a course in life. It's life with the ups and downs and hurts, as well as regrets. Your reminders are well taken. There are always some undertones that makes one really think.....choices, should haves, would haves, etc.

I hope Fencer will realized what he means to his loved ones; especially the grandchildren. He will give them memories that will remain with them their lifetime.

We are all on this journey together.


Gerry

Pam,
You made me, as well as probably others, smile. I could visualize you heading off to give DB a "hug"; hope you got one right back. He's fortunate to have you at his side; especially when he needs someone to lean on.

Intimacy is in a look, holding hands, caring and sharing; much more lasting than any pact could ever replace. Thankfully Debi had those few months to have all the emotions that needed to be shared and experienced.


Gerry

Fencer,
I wish I could put in words something the would help give you the "push" you need. The only thing I can think of is "been there". I can understand you wanting to explode.

Dealing with the 24/7 pain, I like you, found it difficult to even do things that I still could do. I finally realized I was not only bringing my self down; but was pulling my husband down who didn't deserve this.

Not saying that over night there was a big difference; but I started moving around a bit more; joking which can some times be contagious. He enjoys going to lunch; so I do try to push myself to go with him for an hour or two once a week.

Your grandchildren will remember times they spent with you long after they are grown. It appears you have really spend some quality time with them.

You really sound like you still have some "ump" left in you; just need the "push" to get yourself up and about.

Really do appreciate your coming here to give us updates; whether good or not so good. You are putting an effort in sharing.


Gerry

This weekend "we" were cleaning out the storage unit. Since I cannot do that kind of stuff I stayed home. My wife, son-in-law and the grandkids were about to leave when the four year old says she's worried Papa will get lonely. So we ask he if she wants to stay with me. She says, "No" and goes skipping out the door. Forget that car when you're 16 kid.

Today I went through some of the boxes and found all my old international reference material, corporate governance material, office knickknacks. Geeze I miss that stuff so much. I should still be doing it. Cripes, I'm only 60. (61 in 2 days so you still have time to shop.)

I can't do anything that requires standing for more than 4-5 minutes and phone work is no good because I still garble stuff. I know, I'm the only one to whom stuff like this has ever happened.

It's just so much easier to curse the darkness.

hi sd. i'm so sorry you feel so isolated. i understand how much smaller the world feels when diagnosed with a chronic illness. i went from an active and social person to a homebound person who relies on others to help me get out to dr appts and the occasional dinner at the local diner. it has taken me some time to adjust (going on five years now) but i am trying to make the most of what i can do and what i have. i have two rescue pets that give me a reason to get up. and my family does their best to make me feel less alone. having my friends here at NT has helped me feel less alone too. life isn't the same but i have embraced it and am learning to enjoy the little things each day like the flowers and wildlife. i hope that you can find some joy in the little things too and know that you have found an awesome forum here at NT. the friendships and support i have gotten from this site have helped me to feel like i am still a part of this beautiful world we live in. you are not alone. i am here if you ever need a friend to talk to. soft hugs.