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PaulNash

Advice need on how to hold a conversation

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Quick update.  We've started using the "give me a minute" cue, and it definitely helps, albeit not all the time.  And occasionally the minutes stretches on, and on, and on,   a n d    o n ...

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worst case when that happens you both end up laughing at yourselves 🙂

 

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Heather I think you are so right! 🙂 You know it has/is difficult getting just me to the place I am now...I can only imagine if I had a loving spouse. I think it very natural for us as a spouse to do...believe...have determination...and work hard to help the person we love to get better. That really must feel defeating at times. Not saying you won't have anymore improvement...but if I am honest with myself (I think you understand) I am not going to miraculously be fixed at this point (no matter how hard I work at it). I have to accept (trust me I re-accept almost daily) who I am today and live my best life for today. One day I may be celebrating a new milestone...if it isn't today then that is ok. I still love myself, look forward, aspire, want to be aware of the positive in the world and myself no matter how I am today. Paul I think you and I both know how difficult it is to get over that bump. When I wake up to a new day and I accept...I am so much happier, settled, a better me. I'm so glad your speech therapy has given you some tools for you and your wife to use. Heather I can wholly laugh at myself now...that is a freeing feeling. I also love when I can laugh with someone...even if it was about my inability to get out anything but I I I that day. LOL that's an inside joke...about a year after my stroke when I was still with Adrian he could defuse my anxiety when I got stuck. So when I got stuck on I I I...he would say dunna, dunna, dunna and then I would say I I I (I think it's the beginning of an Ozzy Ozbourne song). Whatever it was I knew the tune and it cracked me up so much. I was truly thankful he could help me like that even if he did do a bad boyfriend thing and we are now not together. The point I'm trying to make is laughter is great medicine and a real feel good thing. I hope you guys can enjoy those moments! (((HUGS)))

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Hi Tracy

 

A lot of this message is just me trying to figure out what is going on, so don't feel worried or that you need to respond.  It's a whole lot easier to explain to someone than to explain to myself.  So no need to read or reply ...

 

Thanks for the encouragement.  I'm not sure what is going on with me right now (apart from a scrambled brain).  Felt generally OK yesterday, woke around 4am today, feeling like the bottom had fallen out of my world.  Could not get back to sleep, just lay there feeling worse and worse, until I finally got up.

 

I'm in one of those "it would have been better for everyone if the stroke had been fatal" moods.  I know objectively that that is not true, bit I've been sitting here crying and feeling totally miserable for the last hour or so.  Reading you message has lifted he mood somewhat.  Thank you.  Much needed and timeous.

 

Right now I feel generally that I am quite useless, a drag on the family and un-loveable.  I know objectively that this is not the case (although our finances would look a lot healthier with a big life insurance payout :-)).  And I'm not going to do anything stupid; I a friend who's mother killed herself.  40 years later she is still not completely over it, and I would not do that to anyone I love.  It's just that some days (like today) I wake up at 3am, feeling terrible, cannot get back to sleep, and it's downhill from there.  The silver lining is that the stroke damaged my memory quite severely, so in a couple of hours I will have forgotten the incident.

 

I guess part of what I need to do is accept that there is a whole pile of stuff that I can no longer do, or have to do differently.  Work always used to be a major part of my self-image, and that is becoming more and more difficult as I try to do more things.  

 

I have spent the last three weeks trying to get a simple automated report together for Linda, pulling some basic information from a database and presenting it as a table showing trends.  Not rocket science; the sort of stuff that a 10th-grader could probably do with a couple of hours of reading tutorials.  Every time I look at it, I get confused about what was working and what not, cannot understand my notes, and get different results each time I do anything.  This increases both frustration and despair, makes Linda frustrated about whether she will ever get this report and increases her doubt about whether I can do anything at all.  One part of me is desperate to get it working so that I can prove to both Linda and myself that I am still capable of doing quite simple stuff, another part just wants to run away and hide or just disappear.   As far as I can tell, this is a symptom, not a cause; I'm still struggling to figure out the boundaries of what I can do, and struggling even more to accept them and remember what they are.

 

Long, self-pitying rant.  But it has made me feel calmer and less desperate and despairing.  I guess three years isn't that long (the stroke feels like yesterday), but I also think that I should get over it already and face reality, rather than wallowing in self-pity. 

 

This board (and especially the people on it) is a real life-saver!

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Paul I know you said you don't need an answer but I do want to say I read this and I hear you. Some days it's much harder than others and as Tracey said acceptance is sometimes a daily decision.  Do try to remember that you get your disability payment because you can't work. So pushing yourself to do something you can't do is going to have a negative affect on your mood, and that will also affect your sleep patterns.  I recommend meditation for those horrible mornings when you wake at crazy o'clock and you head is so busy trying to solve the world that you can't get back to sleep.

 

So I do hope you sort out the spreadsheet/program or outsource it to one of your kids? (sorry I don't remember their ages)

And either way hugs :hug:and hang in there you can do this.

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Well, the REALLY GOOD NEWS is that yesterday I sat down with a clean sheet of paper (well, a clean Bbedit window), though this whole thing through slowly and carefully, and a couple of hours later had about 100 lines of Perl to read the SQL output and give the summary numbers.  Another hour to get the layout to match Linda's spreadsheet (so that she can just copy/paste a single block from the report to the spreadsheet).

 

Voila!  It works!  And I did not crash and burn, I managed to keep my thoughts well-organized on several sheets of paper (and lots of comments in the code).

 

Everyone happy, especially SWAMBO.   I needed a couple of hours of sleep to let my brain recover, but that 's fine.

 

Then we went to see a combination of Second City and the Toronto Symphony, which was hilarious!  The afternoon sleep helped a lot; I was able to stay awake and alert until we got home.

 

footnote:  If you did not read H. Ryder Haggard as a kid, SWAMBO is a character from "King Solomon's Mines" -- She Who Always Must Be Obeyed
 

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Paul what I have begun to realize is that I can get something specific, difficult, needs a lot of attention done. The key for me is plan, plan, plan. Not to give myself any stress from deadlines. Remove all stimulus that might DistRact me (umm everything lol). Plan, plan, plan...I can't emphasize that enough. Hold myself accountable...for me that is color coding progress - I like pretty colors! Listen to my body and do what I need instead of waiting. Get more rest after and before because again that is included in the plan. After making a habit of many of these things...I see improvement in my success. Great work...evaluating and accepting what really helped you. 🙂

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Oh and for me writing it down. That's why I always use a paper planner now. I need paper and pen. Sorry trees. 😳

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Thanks for all the feedback.  I've started incorporating the various ideas into how I interact with Linda and also how I plan my life.  And I can see some benefits already, both in how much I manage to get done in a day, and (especially) in how I relate to Linda (and how she reacts to me).

 

That you all!  So far, the results are very positive, I'll report back on any further developments (ideas and reactions, and whether this progress holds)

 

       paul

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Awesome news Paul!

Looking forward to what I'm sure will be positive updates.

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That's great news!!! :happy:

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WOW!!!! terrific especially on getting that program done!  Looking forward to more updates. 

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I need paper and pen. Sorry trees.

 

I work much the same way.  I think and make copious notes on paper as I work, and then transcribe onto my laptop as a text file.  It's starting to pay dividends, as I can now see a history of what I did, and when, or what am supposed to do, or what I have forgotten to do.

 

I guess that this is that way that the big boys have done it all along, with change management systems and the like, but for me it is a new experience.

 

Day-to-day life is still a blizzard of Post-It notes all over the house reminding me to do this, that or the next thing.

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I'm not sure why, but something I just read in this thread reminded me of a Twenty One Pilots concert I went to with Carrah in December. 

She loved it. So did I, but spent a lot of the time with my eyes closed due to the lighting effects and believe it or not the noise.

She still talks about it, but I seriously can't remember much of the night at all.

 

Don't want to hijack your thread Paul. Sorry.

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Sensory overstimulation...it is my daily life Janelle. A concert with loud music and lights 😵 just knock me out now! I know exactly what you mean.

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Sensory overstimulation/overload   ... emotional flooding...all 5 senses can get this. Touch, hearing, smelling, seeing, tasting...a very sharp cutting feel, rain sounding like bullets, smelling smells that no one can detect but you over and over and over...siren lights, flashing lights, a camera flash, a large open space like Costco, people moving around you...tasting familiar food but it is too spicy, sour, sweet, bitter, too fishy (😫 🐟 my tuna fish today), too cold, too everything. It all leads to emotional flooding, panic attack, fear, nausea, dizziness, clumsiness, all out fatigue.

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Hey Janelle, hijacking is fine, just so long as it's not at gun-point :-).  And this is *much* more interesting that my whingeing and whining.

 

I also get the sensory over-stimulation thing, and find watching TV (for example) to be exhausting.  Just closing my eyes and listening works fine, but gets me into trouble at big family gatherings.  Linda gets seriously upset if I'm at a table with 20 other people with my eyes closed, but that's the only way that I can keep track of a conversation among all the noise.  The alternative is to sit with my eyes open and let the conversations turn into noise that just sort of washes over me, which *beep* her off just as much.  

 

The *real* solution is not to go, but that's a total non-starter.

 

Interesting, I can cope with symphony concerts with no problem (other than finding my way back to my seat after interval), while movies exhaust me.  At least no-one notices that I've go my eyes closed because it is dark 🙂


And I share Tracy's abhorrence of large crowded spaces.  I avoid them where possible, and have a technique for our local supermarket that works quite well for me:  I park my trolley somewhere where it does not block an aisle, choose on or two items on my list, go and find them, bring them back to the trolley, cross them off the list, the choose another one or two.  Lather, rinse, repeat.  When I'm feeling fresh, I may try to remember 3 items, but that often means that I end up forgetting all of them :-(.  I also try to shop REALLY early on a Saturday or Sunday, when everyone else is sleeping in, or in church or synagog, or something, and the place is a little bit quieter.

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Yes Paul....same here. Though i'm guilty of riding on the cart (my PT said stop a long time ago...which I did but haven't had PT in 2 years). Easy way out, sorta. I find it interesting when I suddenly stop because there are 2-3 people coming my way (even though I know by now they won't run over me) I let them pass first. I wonder what they think lol. Oh btw music is interesting when it comes to brain damage...it can be positive. It is processed by a different part of the brain. The brain is fascinating. It's like cursing lol...I can get mad and curse easily with no stuttering or problems. Cursing is also processed by a different part of your brain than regular speech. I am not a big curser but on occasion it has happened. LOL so it's best to not make me too mad (no one knows that though...I used to be horrible about sticking up for myself...I guess this is one way to do it...Tacky but sometimes works).

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Picking times to shop makes such a difference. 

 

Also I know what you mean about shutting your eyes means it's easier to follow a conversation.  Too much for the brain to try and focus on otherwise. 

 

It's funny that you say it's easier to not go to things as well.

 

Wayne is 50 next year, and even though it's ages away (he's not even 49 yet!!) I'm thinking all the usual:

 

Do we have a party?

Do we have it at home?

How many do we invite?

 

There are so many negatives for me regarding all of this, as I keep thinking of all the overstimulation involved. 

 

But it's his birthday,  not mine. Should that make a difference?

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I think a calmer, quieter get together type "party" would be just fine Janelle. Maybe after his male friends can take him out on the town if he likes. A close few friends, finger food, a nice cake and lots of areas to gather in small groupings. Have at home where you are comfortable or wherever you are comfortable. Set a time limit i.e. 1-2 or 3-4 whatever is your good time especially if you are like me and at night I'm a dud (sunlight would be a must). Keep it intimate...relaxed. Then if you guys think it's a good idea plan the "guys" after party. You can rest and he can whoop it up a little. 🙂 Just some ideas.

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I agree with Tracy.  A party is good, but try to see it low-key so that he doesn't get totally worn out.  If there are different groups of people, try to space them out to allow recovery/nap time between them.

 

It is clear that you care enormously and have quite a good handle on his limits, so I'm sure that you'll do a wonderful job and he will enjoy it.

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Oops.  Yet Another Brain Fart -- I forgot who has the stroke :-(.

 

Same basic idea, though:  Keep it low-key so that you can cope, give yourself breaks to recover.  And I agree with Tracy about sending him off somewhere with his friends, so that they can have an energetic and noisy time while you have a rest and get back on your feet.

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Yes, Tracy,  very good idea.

I actually really like the sound of him and his mates doing something. 

 

Paul that's hilarious...at first I was thinking you were mindful of him being 50!! He may need a few nana naps on the day!!

 

Thanks for the responses.

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Nothing clever on my side, just a generic brain-fart.  I'm slowly getting used to it 🙂.  Family not so much ...

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Paul, I can’t even begin to imagine what the family go through. I don’t want to know, to be honest. I have my own demons to deal with.

 

sometimes, I think way too much time is spent making everyone else feel better about our situation, and not enough time trying to accept it for ourselves.

 

If I were to go back to the beginning of this thread, and answer you today, right now, for the first time, my response would be quite different.

 

Today I say sort yourself out first.  Learn to love yourself again. Accept who you are today, don’t wish for old you. This is who you are. Deal with it world;  old you...gone.

 

Today, I’m going to suggest hijacking Linda. Take her to the doctor with you and when asked ‘what can I do for you today?’ tell your doctor that as a couple, you are having trouble finding the same road forward. Tell him about your angst, in front of her. She may get the guilts. So be it. We can’t change anything without treading on toes. We all know and relate to that.

 

Bugger Linda’s immediate feelings. It’s long term feelings you are trying to access.

 

Sometimes we need to make it about ourselves in order to make it about others.

 

I So wish I had a magic wand.

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