Making the world a better place for future SAH'ers

[amexdm]

Hello All:

I was thinking while at the doctors yesterday. I've been to so many and none seem to get SAH very well. You tell them you have horrible fatigue and they give you that "whatever" look. So what I have started doing when I go to the doctor is I tell them I have fatigue. They give me a blank look. I say no really the fatigue is really "debilitating" and on a scale of 1 to 10 is about 100.

Then they sort of seem to get it. Now that I have their attention I tell them that the fatigue is horrible and when the next person comes in and tels them fatigue is horrible to PLEASE BELIEVE THEM. Maybe if enough of us tell them and to treat the next person with concern and respect that future SAH'ers will have it better.

This make sense or have I lost all the marbles I have left?

Thanks,

David

[Gill C]

It makes perfect sense to us all I am sure though some people take a hell of a lot of telling before they believe!

A friend of mine has seen me shut down & exhausted but still doesn't get it!!

[amexdm]

Hi Gill,

It's funny you mention that because I just had that same conversation with a friend of mine yesterday. I was mentioning my leg pain and going to the doctor's and my friend said that they would be "more independent" than me. I asked what they meant and they said well they would have overcome it by now with their mind. I was rather offended.

I think we all just discussed that trying to overcome SAH with willpower is like trying to overcome blindness with your mind. I know some people "dont get it". I have tried numerous times to explain this to my friend. But unfortunately I don't have time for haters or doubters in my life. That person is no longer my friend.

David

[Winb143]

Passes David his marbles back..no see you have not lost them...My Mum always said for a Doc to take notice "Lay it on thick"

We should not have to... but if it gets the ball rolling..well !! ....But in the meantime I had a lovely lunch at Frankie n Bennys ...my

Al calls it Ben n Jerrys..lol...told ya he's been around me too much lol xx

Love to All and

Smile though your heart is aching...Smile even though its breaking

Although a tear maybe ever so near...That's the time you must keep on laughing

Smile..whats the use of crying..you'll see the sun come shining thru if you just smileeeeeeeeeee..

I Love that song so much xxxx

WinB143 xxx Love to All and be happy xx xx if possible xxx

Edited June 8, 2012 by Winb143

[Sandi K]

David, the book that Carl and I recommended explains in the beginning that trying to heal a brain injury with self determination is like trying to see when you are blind or hear when are deaf through self determination. I'd like to see your 'friend' in your shoes for a few days!

Sandi K.

[MaryB]

When I was so fatigued last summer BEFORE my SAH I could not sit up in the chair waiting for the Dr to come in room and I had to lay on table while I waited. My husband gets what fatigue means as he sees it every day or at least 3 days a week. I iwsh I could lay down right now ........maybe I will b4 I head back to work. later guys & gals.

[DawnS]

It's amazing that getting across to people what we mean by fatigue is so difficult! No, I'm not a wee bit tired or downright lazy thank you, I feel like I've been ran over with a steam roller a few times, or have had a round in an iron maiden. My nana, who many of you are 'familiar' with is always saying things like 'I don't know how you can sit still or lie down all the time. I'm 83 and I could never sit down as much as you do'. Then the very next day, she'll tell me that I do too much and 'no wonder' I'm tired.

Even the staff at Headway seem to have no idea what I'm talking about. If I say I'm tired they will say, come and play scrabble - have a rest. To be fair, I don't suppose they see many sah'ers! Thankfully, Andy gets it and I guess that's all I really need. I have never actually discussed it with my GP because this last 10 days or so is the first time the fatigue has taken over and affected my quality of life for months and months.

[Jilly]

Hi David, I know exactly what you mean, my doctors experience of SAH and aneurysms is limited so I don't think they have much experience on how to deal with us, what is our "normal", I have no outward signs of my SAH or coiled and stented second aneurysm so people and I include my friends in this don't really understand when I say I am tired, have a pain, cannot do what I did before, I look normal, should behave normal, it would be lovely if we could educate the health professionals on how to deal with us so that we don't find ourselves putting back our recovery by doing to much pushing ourselves to hard, thanks again for this post, I have to see my GP on Monday I will do my best to make the point. Have a great day, Jill xx

[Carl]

I wonder if we should take the brain injury symptom hand outs in to the doctors when we visit.

after all We are the specialists. There is no one who knows the condition quite as well as the SAH survivor.

With the struggle I am having at work the employer is playing a semantics game. The letter the doc gave states I have fatigue brought on by the way my brain now processes the every day tasks, this makes me tired and I need rest.

These are facts. The employer sees only that I am tired and need rest therefore I am not sick.

If I were to deprive the employers of oxygen for several minutes, just as my haemorrhage did to my brain, I wonder if they would be fatigued, tired, or just need rest. Naw I could never do that.... there are those pesky laws.

David I agree we need to get the word out. 50 years ago people made no concessions for people with diabetes.

This is one of the easiest lists to follow that I have ever found

http://www.bcbraininjuryassociation.com/livingwith.php

I think we need to print it off and take it with us when we need to educate

[Gill C]

Great list Carl. I reckon I could still show it to my friend & she would say oh yes I'm tired too!!!:lol:

Its the bone weariness & total inability to process anything more that is so difficult to explain. I rarely get that bad these days cos I see the signs coming on but when they happen people can see the fatigue but still don't understand its cause & effect!!

[Winb143]

Thanks for list Carl...sent it to hubby n daughter......hubbty said "I'll send yo my list later Win " ..arghh

List should be put in Docs surgery I might sneak one in lol. anyway thanks Carl x

Love

WinB143 xxxx Hi Keith GG SL Sandi Sarah David xx And All of You xxxxxxxxxxx be well xx

[sallym25]

Carl,

Thank you for posting that link. I have printed it off for my doctor. I'm concerned she will disregard it. On my last visit she informed me that because my haemorrhage was not caused by a blow to the head or a RTA it is not classed as "traumatic".

[Gill C]

Sally that is shocking although technically she may be right. I think Headway always refer to ABI (aquired brain injury) for annies & strokes but even so having a trauma to the head (which is what an anni is) has the same affect. I was suprised to learn all the similarities of ALL types of brain injury however aquired!!

I'd ask her if she thinks undergoing a craniotomy isn't traumatic & hard to recover from!! Such ignorance

[goldfish.girl]

Good list Carl - I may highlight the last thing on it for my Dr (Well, the one who said it was maybe in my head, well, yep, but not the way she meant or learned behaviour )

Sally, I think the list applies any any brain injury, whether traumatic or acquired, the brain has been injured & the results are the same. I have seen an almost identical list referring to acquired brain injury but can't remember where at the moment. If I find it I will let you know.

Michelle xx

[Carl]

Sally you could be right with your doctor. The heading of the page does say TBI

The page is found in the ABI section of the site though and here is another quote

Acquired Brain Injury Definition:

The World Health Organization’s definition of acquired brain injury has been adopted in British Columbia: Damage to the brain, which occurs after birth and is not related to a congenital or a degenerative disease. These impairments may be temporary or permanent and cause partial or functional disability or psychosocial maladjustment (Geneva 1996)

I am sure if there were checkboxes on the list I could fill in my fair share

Yet another link YAL:lol:

http://www.braininjurynetwork.org/thesurvivorsviewpoint/definitionofabiandtbi.html worth a read.

P.S, that is something else I like about my SAH I am stubborn and will search the net for hours trying to find what I need. Unfortunately the searches should only take minutes because I get side tracked but I did that before anyway

[amexdm]

Hello,

Carl, you are a genius. What a great list. It is so extensive. Unfortunately almost ALL of them apply to me I will print it and show it to my neuro today and highlight the biggest ones. Although neuros are kind of arrogant so not sure what he'll think of it from little old lay person me.

I will say that lately when I go to the doc I am very firm. Like Windy said "lay it on thick". I tell them that my fatigue is "debilitating" and I give them the snake eye or as my wife calls it the stink eye. That means dismiss me as whining and I'm coming across this operating table and stab you with your scalpel! Well no but you get the picture.

Thanks all,

David

[Carl]

I was giving this more thought while I drove my wife to work this morning.

We are the patient.... these are the symptoms...I do not think that doctors should dismiss any of them they are symptoms.

As for people and doctors who say these symptoms are in our heads,,,,, where the heck do you think symptoms of brain issues are:lol:

The brain runs the body, if the brain is mixed up doesn't it stand to reason the the symptoms of the injury will permeate the body?

Yes some of the symptoms may be caused by other issues. Like some joint pain could be caused by arthritis. I didn't notice the joint pain before the SAH so that may be a clue:lol:.

Funny my hypertension and diabetes were there before SAH.... possibly an underlying cause.... those are not symptoms of the SAH yet controlling my blood pressure has reduced my headaches.

We are complex beings. our whole body interacts with the trauma of the brain injury.

Something else the doctors and other people should be aware of is the definition of trauma in a psychological point of view.

The American Psychological Association defines trauma as.

Trauma is an emotional response to a terrible event like an accident, rape or natural disaster. Immediately after the event, shock and denial are typical. Longer term reactions include unpredictable emotions, flashbacks, strained relationships and even physical symptoms like headaches or nausea. While these feelings are normal, some people have difficulty moving on with their lives. Psychologists can help these individuals find constructive ways of managing their emotions.

Add to this the physical damage caused by the brain haemorrhage and you have a recipe for all of the symptoms listed in the handout.

To me that means that we need to address the symptoms both on a physical and a psychological level. Whether the symptoms need to be controlled with medication or therapy is where the professionals need to step in.

The main thing to remember is the underlying cause is the brain haemorrhage.

OK that was too much thinking for me these days. time for a rest.... too early for a beer!

P.S. all this being said look at the last symptom on that list..... Possible misdiagnosis as, for example, psychiatric illness or malingering.

Edited June 8, 2012 by Carl

[goldfish.girl]

I rang the brain injury support worker today about Sally's comment.....she confirmed that the only difference between TBI and ABI is the initial cause (i.e an external event versus an internal one). Other than that, the end result is the same, although differing in severity in each person. Sally, maybe you could point that out to your doctor next time - you have an acquired brain injury but the symptoms are identical to a traumatic brain injury. Hope this helps xx

[sallym25]

Carl and Michelle,

Thank you both so much for going out of your way to help me define the differences here. I have lots of ammunition to present next time I see 'Mrs Know It All' at the local surgery now.

Unfortunately, it's all too much to take in personally, so I plan to print lots of sheets to take with me in the hope she will make some easy reading of it. I should be nice and point out that before she made that comment she did read the sheet I gave her regarding the 'T'BI. I will test her commitment when I give her the next 6 papers and let you know how she scores!

Thank you again

Sally. x

[goldfish.girl]

Sally (and everyone else following this thread) I'm happy to help with my limited knowledge Also, I hope that Dr will surprise you next time. My own experience has been - that when I saw THAT Dr about 5 weeks ago, having taken someone with me to explain how the fatigue hits after even a 2 hr walk - she was the one who said it was in my head od a learned behaviour - I kept my cool & insisted it wasn't by trying to explain further , she did say she would 'have a think' while waiting for my blood test results. I'd like to think she did something really strenuous like googling the long term effects of a brain injury......I had also explained to her that I am desperate to be able to go back to work and have a 'normal' life again but I need to stop the pain & fatigue to be able to do so (the cognitive issues seem a minor barrier in comparison although I accept I won't be able to do 'mental work' again).......The outcome was that I had to ring her a week or so ago to ask for another ESA sick note - total turn around!!!! Asking how I am, saying just ring again if you need another sick note, it's no problem etc :confused:

I like to think that maybe she did google 'brain injury' & maybe found BTG in the process I'm glad she is trying to understand & I hope that her next brain patient gets a more empathetic hearing. It is pants that we have to fight so hard, I often think there must have been so many SAH/Stroke patients in my town, how can the Dr's not get it - we must all be saying similar things????? However, if one Dr has had a re-think, there's hope for the rest......

Michelle xx

[kpaggett]

Great thread and good extra reading!

I also noted that when I was discharged from the hospital, I was given a sheet of things that I should sign up for: Outpatient physical therapy, Occupational therapy, Speech therapy all 3X week and neuropsychological testing. I did all of them thinking that this was the prescription to a better me. No where did they include counseling which I think should be a part of it too (Also considering that I almost died in the ER - PTS anyone?), or added a weight restriction. But even the medical profession has an issue when it comes to the mind or the brain for that matter...anything head related. Yet more and more brain research is being done, but it's not trickling down to the direct health care providers. They know nothing unless they've actually kept up with research papers in this field and even then, the research is all about the acute syndrome and not a whole lot on recovery after surgery/hospital. My Occupational therapist was having me lift weights even though my joints would crack. Even she didn't know what she was doing for my specific condition SAH not a typical Right sided ischemic stroke.

I'm lucky, My GP took it very seriously and asked me all sorts of questions and I could tell, the next time I saw her, she had done some reading up on it. I think many doctors will listen and read if they have the time and aren't spread too thin at their clinic. It can be a profession for very caring individuals who love to learn new stuff.

If anyone has a doctor that's not listening, fire them from your care and find one that will.

~Kris

[Macca]

Sorry I haven't posted for a couple of days. i'm back at work now and I'm absolutely knackered. Got to go to Birmingham tomorrow - that's 100 miles there and 100 back - and a 6hour meeting in between. Kris, you are so right though! David, I think we fall between two stools with this understanding business - we understand, they don't. let them walk in your shoes, they'd understand in a nano second!! I slept twelve hours last night and the night before - I'm like a walking talking zombie at the moment. Roll on the weekend so i can sleep.

Thank good ness for the songs - keep em coming, girl!!

Hope everyone is well

Macca

[MaryB]

Carl, Thanks for posting those links, very interesting. Mary

[Winb143]

I went to the shops and aquired some food for Tea

I came home and while cooking said Tea I had ABI

Hmmm wonder if I inquire about next one ( hope it never happens)

Will it be an IBI

Abi Abi Abi my boy what are ya waiting for nowwww.........see a song about ABI's

You promised to marry me one day in June....etc etc

Love to All

WinB143 xx xx