The SAH Paradox

[amexdm]

Hello good friends:

This ought to be Chapter 8 in the SAH guidebook for any survivor. The SAH Paradox. I'll include the definition at the bottom. But why is it just when you start to feel good, you feel like rubbish. Why is it when you think you've reached the end and you can't go through another day of fatigue, you have have a good day. Is this some cruel trick the SAH gods are playing on us? Why is it so up and down. It defies logic. Therefore it is a paradox. And circular. (Hows that Macca?)

Specifically, Tuesday I felt like I could run a marathon. 90%. Yesterday, I felt extremely tired but got through. Last nite I had shooting pains and tingling in my head that were a 9. Today woke up tired and exhausted, felt like I should be in a hospital. All of this in 24-48 hours? Now I know if I have a good day, that I'm not cured. But if I have a good day, do I want to feel like I'm making progress? Darn Skippy I do, yes! If I have a bad day, it's NOT the end of the world but to have a 3 day after a 9 defies logic.

Some may say just roll with the punches, I do. But if I have a good day, I think well what did I do right? Eat, sleep etc. Lets fix this, yeah. Same for bad day.

My conclusion: Most of us are just well enough to get on with some aspects of our daily life. But we are not well enough to do things we want to do when we want to. Or any guarantee of feeling well doing them. Or knowing how I'm going to feel tomorrow. Or in some cases at 6pm tonight.

Well, maybe after 1 year and 3 days we have Acceptance.

def: A paradox is a statement or group of statements that leads to a contradiction or a situation which (if true) defies logic or reason, similar to circular reasoning.

Any thoughts from my friends?

Kind regards,

David

[Winb143]

David

Keep that chin up Pal, do what you can do and no more or less. We can beat it I know we can. We have been really ill

to say the least. There have been days when we have cried, screamed and talked to ourselves saying "Why Me" but it was us..

Grrrrr she says..but I have seen a good change in you - more laughter and your wit has returned - sometimes xx

We all know it was serious but I have a dream as MLKing said. We will get better xx keep the faith even when really on a low.

We have BTG. Be Well and Be Happy, as when I see all on here coping I know we were brought back for a reason -laughter is one of them xx

Keep trying David and I will also xx

Be Well Pal

WinB143 xx

Edited August 29, 2012 by Skippy

[Sandi K]

It is a roller coaster, up and down, good and bad. The worst part is how unpredictable it is. You can plan as best you can for an event like going to a restaurant by having a quiet day leading up to it and planning quiet time the day after but sometimes there's a surprise and you need a few days to bounce back. If at least we could plan for our symptoms we could work with the recovery and feel like we have some control.

It really doesn't make sense, it seems so illogical.

Sandi K.

[Carl]

Well said and great observation David.

As I was reading the thread I saw "it's NOT the end of the world but to have a 3 day after a 9 defies logic. "

I got an urge to sing Troopers 3 dressed up as a 9!

I find more than ever, emotionally physically and mentally my life ebbs and flows. There are days where I almost strut. saying to myself "I beat a brain hemorrhage!" and I am proud of that. Then there are days where I think to myself, " why cant people understand what I am going through" Many nights when I can't sleep the most mundane things keep repeating in my head destroying the thought process and the sleep.

Part of me wants to pack everything up in a bag, toss it aside and get on with my life.

Part of me doesnt understand what I really want and I cant make a decision at all.

Perhaps if the thoughts would stay within the boundaries they used to, I would be more like my old self. It seems like my brain was in a flood and now, with all the new paths that the thoughts can follow I have a hard time keeping up with them. It gets tiring. Sometimes I need a friend to call and say, "We are doing this and you are coming along" Then, 99 percent of the time, I have a great time.

A Paradox , that is the perfect word for our state. like someone threw logic and emotion in a blender and made a martini.

I am just a 3 dressed up as a 98)

[goldfish.girl]

David, it is massively frustrating, even 4 years on (for me). I hate not being able to make plans for the days ahead because I have no idea if I will wake up bouncing with excitement or just bouncing off the walls with tiredness & headache........

But, you're right - eventually we come to accept that things are how they are and we just have to keep hope that a change might happen xx

[Gill C]

Great thread David, I do find my days are fairly flat, as in not much difference between them generally but then I don't work so haven't pushed myself on a daily basis like you have. I do struggle with planning stuff & not knowing if I will be able to make what I have planned. Even with fairly flat days I get the odd bad one during which I want to crawl under the duvet & sleep.

Over the weekend I did some housework & felt ok but the next day I felt achy & sore like I'd run a marathon

It certainly is a roller coaster ride & I think we all do it in the dark too so that the drops & twists take our breath away & we can't see them coming!!

[MaryB]

David, I have lived the up and down life with fibromyalgia for the past 17 years. Up one day down 7…….. I use to think I was cured all the time. I think that means I am an optimistic person. I know that is why I can cope with my deficits better than most because I have done it for so long and accepted it many years ago. It is not the same as given in and giving up but it is acceptance. I was reading Karen stages of grief the other night and I think I went from SHOCK to Acceptance and nothing in the middle. I never really had fear as I think the SAH or one of the strokes broke my fear response – just now starting to get a few minor panic attacks which is good because that part of my brain must be healing ( compare to being seconds away from a head on collision and not even raising my heart rate one bit).

I still think what exactly did I do to feel great. I live for those feeling great days and people will say I do too much during them but it is the only time I get to have the normal back in my life. It is soul food to be able to feel good and work somewhat like Mary from the past.

I do find diet helps me with plenty of fresh fruits and vegetables but I have the other ………being autoimmune and eating well for one thing is bad for another. I swear that bothers me more than anything – I cannot eat an apple as the cross pollen in the apple will swell my tongue up and dry my throat out. Even while I am on large doses of allergy medication I still have the reaction. I HATE that worse of all.

Would it not be great if our life had instructions and Doctor that understood we need them??

I discovered my 4 beer Corona night got rid of my headache at 6 months so I keep thinking beer cured me. Of course I cannot take anything for pain as everything makes me itch!!!!!!!!!!!!! Not to one up you or anyone but I cannot even go here on this subject with most people – because maybe ONLY a handful “get it”.

def: A paradox is a statement or group of statements that leads to a contradiction or a situation which (if true) defies logic or reason, similar to circular reasoning.

[lisac]

Hi David, You're timing with this thread is perfect. I've been so frustrated lately with this issue. About two weeks ago, I ran my first race post SAH.

It was 5 miles and I beat my time from 2 years ago. I was feeling so good and thought I had "beat" this aneurysm thing. Then the fatigue and muscle weakness hit and hasn't left. I tried mountain biking tonight and had little energy and no strength in my legs. I had to quit after about a half an hour - it was miserable. I just can't seem to shake the fatigue and it has been over 2 weeks since the race. I've been resting, sleeping a lot, etc., but it's not doing the trick.

This has happened many times before also. Like you, I rack my brain trying to figure out if there was something I did or didn't do that brought on the good and bad days. It's so frustrating because we don't always know what brings it on makes it go away. It's been 6 months for me and I'm having a hard time rolling with the punches. I want to "fix" it somehow.

[kpaggett]

David,

I'm totally there too. I'm even wondering how long do I see my neuropsychologist for this? Is it helping? Some days it does and others I feel like I can handle it on my own. I came to realize for me now that I am stronger than my memory of the SAH that almost killed me. I'm here so I'm a trooper. However, if I forget it, then won't I be the one minimizing it? and it was SO monumental. To get better or not. It is such a convoluted thing and hard to deal with at times because it involves physical limitations, emotional responses, and mental processes. What other condition asks you to heal ALL of these areas? We are so unlucky and lucky to go through this. If this doesn't give us maximum empathy for others in their healing quests, I don't know what would.

Lets all hang in there together through the ups and downs and help others wile we're at it too.

~Kris

[MaryB]

While I live the SAH paradox, as does 99% of the other survivors. I can't help to wonder if waiting for answers or help is worth it.

I will see my neuro testing results and new neurologist etc within the next few weeks. I think the answer will be "It is what it is" as he looks at me with a blank face.

I think we will all strive to get better but we will never get the answers we want. I am not mineralizing our SAH but really how different is my life next to my friend with breast cancer/ Epstein Barr / and major failing knee surgeries every summer for 5 years in a row- along with the worse insomnia ever? Or the person struggling with the life they did not dream of?

At 53 I see more people disappointed and surprised at where they are now instead of the dream of health. Which I think we all take for granted until we are hit in the head with a baseball bat. I am in no way making light of our SAH but I assume most of never said why me? Why anyone?

I am maybe feeling a bit less self absorbed with my problems this week with the upcoming anniversary of my brother in laws accident which killed his great granddaughter in a pile up accident last year. I think how a retired fire chief can cope with the memory of being paralyzed in a burning car handle the memory of seeing his great granddaughter trapped in her car seat. He said he knew she died on impact but the thought of not being able to remove her from the burning car seems to be a memory that haunts me. I look at my BIL Tedd and see how well he has had to carry on- he cries, he does not “NOT deal with it, he has permanent injuries from the accident etc. He was cheated as well. I do not want to be the black rain cloud but for me I think of what could be so much worse to live with. I may be doing what stuck with me from my kid’s neighborhood friend’s mom. When she lost her son in a stupid ATV accident and I knew that day it could have been any of our children that day. She said that they only way she gets by when she thinks of a worse situation that has happened to someone else.

Ps When I typed “little black rain cloud” in words I heard “thunder” come out of my computer speakers. Just to freak me out. What is up with that?

Maryb

Edited August 29, 2012 by Skippy

[MaryB]

One other thing as I have worked my first week of reduced easier hours - It has left me completely exhausted. I just feel awful, zero engery........ I was really hoping to have more energy for my home life but it has left me more time to rest. Friday I worked 7:30-5:00 and slept from 6:00 until 8:30 before I went to bed. I did not same today work untill 11:00 slept from noon till 2:30. Hopefully tomorrow I will be a bit more caught up. Just can't win some days, weeks.....

mb

[Carl]

David,

I'm totally there too....... To get better or not. It is such a convoluted thing and hard to deal with at times because it involves physical limitations, emotional responses, and mental processes. What other condition asks you to heal ALL of these areas? We are so unlucky and lucky to go through this..........

Lets all hang in there together through the ups and downs and help others wile we're at it too.

~Kris

Wow Kris you are tripping through my mind. I ask myself the same questions every day! Yes I want to get better, I sure don't want to minimize what happened in my life, when others do that it ticks me off LOL. It seems like the physical, emotional and mental processes are all out of sync. One is good and the others are bad.

We do need to hang in there together. Very well said

[Macca]

David and everyone,

This is so accurate and relative to what we have all experienced. I find that my mind and my body are separate entities when they want to be but are inextricably linked at the most inappropriate times. My dictionary describes a paradox as an absurdity, an anomaly, contradiction and a puzzle. My condition is all of those things My mind tells me I am as fit as a butcher's dog but my body tells me I am decrepit. My body tells me I am in great nick and my brain tells me to 'sit down you've had enough.' Rarely do they act together, in unison, and when they do I regret it because I am usually so surprised by it I overdo things and then regret it severely later in the day. There just is no consistency, a paradox in itself.

David, you've hit the nail on the head and it didn't even hurt - but I've no doubt it will tomorrow. Great post, many thanks for this. Perspective is a great tool to help us understand.

Macca