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So tempting to retire but I can't access my super until I'm 65, unless I can prove hardship, and I'm not disabled enough to get a pension and who would want to live on that little money.  If I retired now I couldn't do something indulgent like I did today. It's a public holiday today (for a horse race!)  I took myself to a gold class movie and had wine and a fancy lunch during the movie followed by a burger for dinner (broke so many food and budget "rules" today) but I really enjoyed it so it was money well spent. and not something I could even contemplate if I stopped working.  I'm not good at mornings any more. thankfully my work doesn't need me to be there at a fixed time every day and they cope very well with "Heather hours" when I'm in the office I usually get in between 11 and 11:30 am and leave about 6:30 pm. I also work from home 2 days a week so that I can still go to outpatient therapy sessions. So long as the work gets done and I get to customer meetings on time I can have my lazy mornings, without anyone at work minding.  Weekend mornings I tend to stay in bed until midday, unless there's something urgent to do.  The days of being on a boat before dawn on a Saturday morning are gone, as are the 6:30 am gym sessions, that were a large part of my pre stroke routine.

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I sympathize with the loss of pre-stroke routine.  Sounds like you've built yourself a pretty solid post-stroke routine, though, which is something that you can be proud of.

 

And occasional luxuries are always a good things!

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Thanks Paul, yes post stroke routine works very well most of the time. Problems have usually been self created where I try to do too much and the fatigue build up gets me. If I stick to the routine I can actually do a lot of stuff, but when you push limits they have a tendency to bite back. The trouble is I'm not one to just accept limits.

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Yes, I know. I don't have a very solid routine or definite limits (never been that sort of person), but I have episodes when things are going really well, so I allow myself to push a bit harder, and a bit longer, and then the whole edifice of my life collapses into a pile of rubble.  I end up crawling out from under the debris, feeling battered and bruised, lick my wounds and start all over again.

 

Maybe One day I'll learn, but I somehow doubt it. 

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Janelle, I hope your doing well this day. It's a good day to have made it through to another, better or for worse we're still in this journey together and you have my support and thoughts on this day..

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I just had one of those "episodes" PaulNash on Tuesday. I was feeling pretty good and got a few small chores done. I was walking around thinking "wow if this keeps up maybe. there is a chance I could ski again" Knowing at the same time it's a foolish thought. I was actually kind of cherishing walking around the house if there was something I needed from another room. Then came Wednesday. BOOM on the couch stretached out all day, dreading the need to get up and use the restroom or go get a cup of coffee from the kitchen. That is so confusing but I guess our energy is used up and now takes much longer to return than pre-stroke. I try to remind myself of that and give my brain and body the rest it craves when it does crave it. Not an easy thing to do without some guilt from time to time.

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Will, I had no idea that you had those kinds of physical limitations, walking about the home or getting up to get a coffee, etc. Honestly I've never mentioned those issues before to anybody except my wife, and only her because she sees me each day. Additionally there is a part of me that doesn't even want to admit it. In my own mind I'll often run a scenario that can accomplish several tasks on one run, if it's into the garage, or the kitchen, or even taking out the garbage. I have a 3-legged stool placed in the shower for shower routines. When I shop for groceries, I use Walmart online, order, drive to the designated parking and they come out and load me up and drive home. Once at home I've purchased one of those upright basket carts that have those 3-wheel rear configurations for maneuvering up steps into the house. I try and purchase a manageable amount of groceries that will accommodate as few trips to the car/kitchen as I can stretch and sit at the table on some runs between the car and kitchen.

 

See, thats how great and informative this forum is, I hardly ever mention these home strategies because I didn't want to come off as being too helpless and admitting that things sometimes can be this difficult. I'll always strive to strengthen my body, to stave off further physical decline but sometimes I'll rationalize to myself it's ok to sit in my room when the fatigue hits hard. Here, I thought I was alone but, being among stroke friends I'm discovering that these issues are probably more commonplace than imagined. 

 

We are truly a part of one another, and can be open to our difficulties without shame or embarrassment. I wish you well my friend, and thanks for your honest and open post. Kinda makes me wish we all lived in a housing community together where we could all share our strengths and weaknesses to help each other without embarrassment asking for any help when things get difficult. 

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Hey Will, I keep doing the same sort of thing myself.  My energy budget is probably higher than yours, but seems to vary from day to day.  There are days when I start out feeling fresh, decide to tackle some significant task (like tidying/sorting/thowing-out stuff in the basement).  An hour or two later I wonder why I feel miserable, have difficulty getting up the stairs, and have no idea what day to the week it is.

 

Spoon theory is great, but I have to remember to use it *and* I have to have a reasonable idea of how many spoons a given task will take.  I'm usually over-optimistic, as with the basement cleanup), in which case it doesn't actually work very well.

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4 hours ago, PaulNash said:

Hey Will, I keep doing the same sort of thing myself.  My energy budget is probably higher than yours, but seems to vary from day to day.  There are days when I start out feeling fresh, decide to tackle some significant task (like tidying/sorting/thowing-out stuff in the basement).  An hour or two later I wonder why I feel miserable, have difficulty getting up the stairs, and have no idea what day to the week it is.

 

Spoon theory is great, but I have to remember to use it *and* I have to have a reasonable idea of how many spoons a given task will take.  I'm usually over-optimistic, as with the basement cleanup), in which case it doesn't actually work very well.

Hi Paul, yea I remember that a post by a female who described that spoon theory in the past. I'll have to go back and do a re-read. I do remember that it did relate to energy expended for daily tasks I think if my limited memory serves. 

 

Currently, usually the best time I feel refreshed or energetic is after a decent amount of straight sleep, 3 or 4hrs at the most. At some of those odd days I've looked around my room and with that newly discovered energy I try to take on smaller tasks myself. A much needed drawer clean out, or cleaning off a dresser top from my debris field. In the past pre-stroke, I've always been on top of clean up and organization but it almost gets to the point these days I've actually toyed at paying somebody I trust come in and giving me an extra hand and discarding or removal of unused items. If I were to have the wife help she wouldn't toss out hardly anything, just stash it somewhere else, she's like that always have been. She thinks that it may be of use in the future at some point so don't throw it away for God sakes! She's Russian born and raised, so everything has a use or can be used, so nothing is wasted. Me, I'm the opposite, if it sits and is gathering dust, give it away or sell it to somebody that could still get some use from those items.

 

My smaller tasks I've mentally invented my "physical economy plan" whereas if I have to do something, I'll preconceive a plan to do additional tasks along the same physical route. I know, silly right! But for those low energy days it helps. If I have to toss some bags of recyclable plastic stuff out, on my route to the outside recycle bin, I can go through the garage, remove something from my car or access the washer/dryer, maybe pick up a fallen palm branch on the lawn and toss into the regular bin. Stuff like that. Funny how the mind can work in the survivors mode. I'll often bring a chair into the kitchen to get small cooking jobs (microwave king) done or making coffee etc. Thats what interested me in those walkers with the wheels and portable seats for resting. I needed to recently stand in line at an auto tag agency to get my handicap tag and at this agency they always had lines of people and no chairs. I had plans to purchase one of these walkers specifically for these kinds of tasks to increase my sense of independence, but I caved and just had the wife do it instead. I just couldn't justify the expense of something that I know I'd be more reluctant to use in public..don't like to say it but my ego still hasn't caught up to my disability acceptance yet. It will at some point though, it's an inevitable truth. I'm a work in progress.

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Will, Interesting being able to compare other people's lives with my own. My wife is also a hoarder and does the same as yours by creating a piling system. When I get annoyed by the height of it she merely moves it to another room. Last week she stunned me by showing a friend some baby clothes knitted by her mother for the new baby when she was pregnant. We had a boy, followed by two other boys and the clothes meant for a girl were never used. She has been hoarding this stuff when at times space was at a premium in our life when it could have been passed to other needy people.........the son had his 59th birthday last week! and I never knew she ever had the stuff!.....amazing!

The spoon theory is very useful, I plan to do jobs over a long period rather than the dash in and do it routine. It can be quite infuriating leaving a job till tomorrow when you are a 'do it now' adherent, but it does make living a lot more comfortable.

In haste I must add that my wife as a carer is second to none and I really don't know how I could possibly cope without her.

Regards    Deigh 
 

 

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Will.           Oh to have a decent memory again....I started that last message to tell you that the walking frame with seat is very common over here, At least five of my neighbours have them and they are plentiful in all small townships in NZ and I wonder if you live in a bigger community where they are not so plentiful. Thanks to my short attention span I lost the thread somewhere and ended up talking about other stuff!

Deigh

 

 

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Have to agree Deigh those walkers with the seat and/or basket under the seat the most common variety around here  and I live big city Melbourne. Maybe its the area I live in but they don't rate a second glance around here.

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Thank you Heather and Deigh for the advice. My BIL's Mom is in her 90's and recently purchased one of those and they were recommending it also. I just recently purchased two quad canes to see if those can even the odds a bit. Any additional support really comes in handy and I'm sure that one of those type seat equipped walkers are in my future. At this point, other than doctors visits my activities are fairly limited so I've created plans that mostly involve using my car and doing tasks that limit physical mobility, unless unavoidable. I'm very lucky that my primary care doctors office complex is set up such as the handicap parking is directly across from the entrance doors and from there, straight into the elevator to his office floor. Him and his brother share this whole medical center complex themselves. He's also a good friend of my family so it's a big win all the way around with easy access.

 

Paul, I did a quick web search on "Spoon Theory" and though I read thru several articles I understand the theory completely. Many of the stories I've read here on the forum describe this same theory just using their own experiences. The one article that used a battery life indicator was interesting too. Though in the several articles I read about the spoon theory, they related it to chronic illnesses, many showed charts of various chronic illnesses. The unusual thing was that in the 4-5 articles I read, strokes were not included in the chronic illness categories..multiple sclerosis, lupus, fibromyalgia, arthritis, depression, leukemia, autism, anxiety, endometriosis, crps, and even PTSD were listed. Stroke, didn't even get an honorable mention?? I guess stroke being a neurological event doesn't fall into a chronic condition.

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On 10/13/2019 at 7:43 AM, PaulNash said:

Sounds like you need comfort and affirmation rather than encouragement.  I guess we all do.

 

So here are a pile of virtual hugs in the hopes that they will help.   And a virtual shoulder to cry on.

 

Having a stroke is really shitty.  Period.

 

So true, at my gym I see the same people who will ask how I'm doing. I say getting there but slowly, truth is this sucks and I am holding on until it's better, no matter how long it takes. 

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On 11/9/2019 at 9:44 AM, will2 said:

The unusual thing was that in the 4-5 articles I read, strokes were not included in the chronic illness categories..multiple sclerosis, lupus, fibromyalgia, arthritis, depression, leukemia, autism, anxiety, endometriosis, crps, and even PTSD were listed. Stroke, didn't even get an honorable mention?? I guess stroke being a neurological event doesn't fall into a chronic condition.

That is interesting, most of the government benefits I receive are related to my "chronic medical condition"  also known as my stroke deficits.  So I guess it depends on who is writing the article.

 

Stroke is certainly recognised here as a chronic condition with neuro fatigue one of the main factors. The link to the original spoon theory is here. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ and note is was a way to explain to outsiders how having a chronic illness affects your life, in her case Lupus, but it was such a strong explanation that it went viral and was adopted by lots of other suffers of many types of chronic conditions.

 

"Chronic disease: A disease that persists for a long time. A chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear. Eighty-eight percent of Americans over 65 years of age have at least one chronic health condition (as of 1998). "

 

 

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On 11/10/2019 at 5:35 PM, heathber said:

That is interesting, most of the government benefits I receive are related to my "chronic medical condition"  also known as my stroke deficits.  So I guess it depends on who is writing the article.

 

Stroke is certainly recognised here as a chronic condition with neuro fatigue one of the main factors. The link to the original spoon theory is here. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ and note is was a way to explain to outsiders how having a chronic illness affects your life, in her case Lupus, but it was such a strong explanation that it went viral and was adopted by lots of other suffers of many types of chronic conditions.

 

"Chronic disease: A disease that persists for a long time. A chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear. Eighty-eight percent of Americans over 65 years of age have at least one chronic health condition (as of 1998). "

 

 

Couldn't agree more Heather about the chronic condition of strokes. The four articles I read were listed from my particular search engine Duck Duck Go. Google topics may be different. No matter, my condition is without a doubt chronic, especially the neuro-pain. I've never had a problem with Social Security Disability status, however they do administer evaluation testing prior to the  granting the disability status. The only time I had any kind of trouble was my meager attempt to try and return to work, mostly out of fear of losing my job, I ended up going on long term disability and that was a royal pain in the butt. I even had my case worker tell me at one point I was lying because I told her I could no longer perform at acceptable levels. I should never have had a release from my doctor. My return was really premature. My release from the doctor was a premise for her argument. My mistake. Anyway..water under the bridge it was so long ago.

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Heather, here's a list from one of the articles I was reading from the spoon chronic disease diagrams..

p3701087233-3.jpg

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yep hardly a comprehensive list is it.

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I don't mind hearing that and I think it's because of a quote I read in a stroke group I was in way back. It read: "You can't see numb." True. To see a lot of us sitting or standing and not moving we do look ok. Then we move and the cat's outta the bag. So I understand that statement "you look good."  What I don't like is the question "How are you doing?"

 I was 86ed from that group back then for even breeching the subject of alternative medicines.:no-way: 

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On 11/6/2019 at 9:08 PM, will2 said:

Janelle, I hope your doing well this day. It's a good day to have made it through to another, better or for worse we're still in this journey together and you have my support and thoughts on this day..

Thank you so much will2, I really appreciate your kind thoughts.

 

On that particular day, I was very happy.  We went to Singapore for 6 nights. We've just arrived home. Had 3 nights in perth; 1 before the trip and two after due to flight times and fatigue. 

Lovely trip, but so awesome to be home.

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