Why can't I be ******?

[Teechur]

I was on a support board on Facebook the other night and they were posting the stages of grief, which I appreciated because I think we all go through that. With me I went through things a bit bass ackwards because I didn't get it at first and kind of accepted it very early on as just this 'little thing' that happened to me and I was going to breeze through and handspring out of, sticking a perfect 10 point landing ta-da!

So right now I'm kind of in the anger "I hate my life stage". Not all the time, of course. I tend towards being that annoying Pollyanna type who generally looks on the bright side, but I never dreamed it would take this long, or I'd have an 18 week headache, or be looking into summer still with major limitations on exercise (which for me is huge as I'm a fitness trainer and coach and has resulted in having to cancel my summer classes). We've changed vacation plans because Disneyland (favorite place) sounds painful, flying sounds excruciating, etc. Not allowed to run, bike (balance), swim (balance, vertigo), kayak (exertion), trail run, bootcamp, etc. my summer IS all those things and more. But I digress.

Anyhow, so I share on this site that I'm in the anger phase and I'm frustrated that my old life is temporarily gone and from the (moderator) I get a well intentioned "what we lose sight of is that we are still alive."

You know what? I get that. I know that. I understand I am blessed to be alive. You think I haven't read the stats? Do you think I haven't prayed thanksgiving numerous times? Haven't felt guilt because I am angry? But at the same time grieving a loss is a process. Why does everyone tell me to slow down and not rush my physical healing, but damned if they don't want my emotional healing to be done right now. Everyone I have dealt with (a good friend recently suffered a skull fracture and is dealing with very similar symptoms) I have said, "it is okay to be mad. It's not fair. We have the right to be angry. We don't want to wallow in it for the rest of our lives because that's miserable, but feel free to cry when you need to, laugh when you want to, and just feel whatever you need to feel at any given time. This isn't easy and trying to deal with brain injury and please others with your emotions is just way too much!"

I know others on here had a worse SAH and I do have guilt because I am angry right now, but I left the hospital with, 'go back to work next week, no exercise for a few weeks, you'll be fine.' When I was still having headaches 8 weeks out my neurosurgeon was perplexed as if that never happens! Made me feel like I was wrong or hypochondriacal. I had to ask my new neuro (who at least was NOT surprised I still had them at 8 weeks) for medication at 12 weeks and he doesn't want me taking pain pills despite pain every day. Holy god people! I'm going insane and I think I have the right to be ******!

[goldfish.girl]

Hi Teechur,

Nothing you are feeling is unexpected. This is a process you need to go through at your pace, not at the time scales others think are right. For you, personally, your summer is not going to be the way you enjoy summer. That's a huge thing to be forced to accept and why would you feel 'happy' about that? Yes, we are all lucky to be here and not be any worse off than we are BUT parts of us have got lost or been damaged and that alone is something we need to deal with and work through the emotions it causes. Of course we get really angry, cry our eyes out etc, etc - we didn't want this and it isn't fair that it happened to us - you be as ...... as you like!!!

We have to go through all the stages to come out the other side, understanding & grudgingly accepting how we are now.

Michelle xx

[DawnS]

Hi Teechur,

well if that is what you were told on leaving hospital then no wonder you are angry at the things you cannot do. Not only have you discovered lots of limitations, but they are unexpected limitations too. I find it very annoying when people say that you should be glad to be alive. Well of course we are glad to be alive but in a way it's not us who survived, it's someone else. Someone slow and tired and physically weak. This is just my view of course. I have never been physically fit - I'm a little fatty, but my old coping mechanism was running (or is that wobbling?). That's how I got a bad day at work out of my system. I'd go to the gym and run as hard as I could for as long as I could and if that failed, I'd go home and drink a bottle of red wine. I can no longer run and I can't touch a drop of wine. On the plus side, I did try riding my bike a few weeks ago. Because my balance is bad I didn't think I'd manage it. People looked at me strangely and said 'you never forget how to ride a bike'. Honestly, get lost with your clichés! But, it turned out to be true, I did manage to balance and the first time I got 6 miles out of it and the second time, ten. I felt so much better afterwards. It's not as effective as running, but I certainly felt more calm. The reason I'm rambling on about this, is I wondered if it's worth you giving the bike another go? I don't know how you are finding things, but what I am capable of changes on a monthly basis pretty much. I went through the angry stage for a few months recently, I seem to have come through the other side reasonably intact, there are a few dents on the freezer though! I have no idea what stage I'm in right now. It seems to be a 'panic cos there's only 8 weeks left on my sicknote' stage. What I'm trying to say is that it does change and progress, but things will improve at their own rate and we can't work to anyone elses agenda.

Dawn x

[MaryB]

Teechur,

It is ok to be angry (sometimes) as long as it does not hold us back from going forward. I do not think Dr.s know HOW we will turn out or what to do with us for the most part. Medical world has not caught up yet. I feel that that say everything will be fine because they don't want to disscourage us. I think if they "knew" us or say "me" they would know I can take it but be truthful so I don't feel like I am crazy when I am still struggling. I can see I am moving forward but geez..........treat me like I am an adult. I think that they have to be positive because so many people would just give up. I feel I can adapt but I do not have the physical limitations that you and Dawn have either. I do know I have never sent more time reflecting on my life and it's purpose. I am sure you inspire so many Teechur as you have a great spirit.

[Sandi K]

I do think it's more frustrating when we are told we will be fine in a few short weeks and then we're not. The same thing happened to me. It was never clearly laid out but after asking questions and through different medical people I was told not to drive for 4 weeks, no swimming or hot baths during that time, and no weight lifting for a year. When I said I still felt weird after a month I was told by the neurosurgeon to take another 2 weeks off. So that would be 6 weeks off work.

As a result I assumed I should be fine and couldn't figure out why I still felt the way I did. I made bad decisions for my health based on the direction given by the 'expert'. Returning to work that early was the worst thing I could have done and I can't help but think it hurt my recovery.

The next 'expert', a neurologist told me at 3 months that what I was feeling was normal and to expect to feel that way for 6 months. So that's what I did. I expected to feel that way for 6 months. And then I went back to work too early again. How about this for an idea: how about suggesting that come back and see you in 6 months for a check up first? How about suggesting I get some rehab? How about giving me the full picture instead of just the rosy side which through self-determination I would be a picture of but have found you can't fix this with self-determination.

I've decided the experts don't know what to tell us. They discharge us and there is no follow up so they have little or no idea what's happening to us. Through insurance at work I have rehab therapy and thank goodness!!! She knows that what I'm experiencing is normal. She tells me that all of her brain injured clients have similar issues. She puts no time limit on recovery and there are no expectations. I needed her more than the 'experts' in the early days to tell me what could happen.

It's such a let down when we aren't all better when the medical professional says we will be. I've gone through anger and sadness, round and round. I really would have preferred to know the full picture and if I healed quickly I would have celebrated and said 'oh what do they know?!'. It's almost as if we've been lied too. Like a dirty trick. Set up for failure.

You have every right to be angry and I would say you need to feel it. You have to express it somewhere. It's hard for people to understand it. They see us as looking like we used to look and they can't understand why we're different. You are still recovering and it is still early days for you and anything is possible. This summer is one summer in your life of possibly 100 summers. It's a good investment of time to use it doing stuff for you and your recovery. Be angry about Disneyland and the lost income but look for replacements. Things that you can be excited about, something new that you can do while recovering.

Sorry for rambling on so long!

Sandi K. Xoxoox

Edited June 14, 2012 by Sandi K

[Winb143]

As Mary GG Dawn n Sandi have already said it all...not much that I can add...well okay just a little xx lol

just keep up the good fight......and never give up xx chin up

You are on a downer Teech ....try and do what you like doing....things that make you content/Happy xx

Keep your chin up Pal xx and dont let the B's get you down ....now cheer up and ignore Whoever got you sad/angry....

Say after me........Ready?

Who do you think you are you stupid person I laugh in your face...see feel better???? please say yes xxx lol

Love

WinB143 xx xx

[Teechur]

LOL I know all ya'all would understand. Why can't the doctors just say "We don't know how long it will take for you to feel normal again, so don't put a time limit on it. Let's see each other again in xx weeks and lets evaluate where you are and take it slow because we want to see slow and steady progress."?? Is that so hard?

Actually that is what my PT says. He's not a doctor, but of course he works closer and more often with patients. My last doctor's appointment I got topamax and "come see me in two months. That should be enough time to see if this will work." Yikes! Two months? I moved the appointment up, though, because the headaches are still debilitating. I only have five days of school left, yet I'm home sick AGAIN today.

Oh well. It is what it is. Still looking forward to summer. We did get a tandem kayak so we'll do that (make the man work harder this year, normally even in a tandem I'm captain).

[Winb143]

Yeahhhh Teech thats the way all positives at end of your message.....WTG xxxxx

Enjoy kyaking xxxxx

Love

WinB143 xx xx

[Macca]

Teechur,

I'm just back off holiday and have just read this thread. In a way I'm glad you are angry 'cos that shows that you have the fight in you to combat this thing!! you are right about doctors though. It's about them being honest in admitting their limitations - not many of them do - that's arrogance in my opinion.

As for exercise, do what you can - you've just had to lower the bar for a while - maybe it can go back up soon, maybe start with yoga - yes yoga not Yogi - or pilates or something.

On the tandem - get on the back and when you get off tell your partner you did all the peddling!! You'll convince him you did!!

Seriously, keep ranting and raving - the fight's still there and we love to see it!!

best wishes

Macca

[Sandi K]

Teechur, I take topomax and find it to be quite effective. It took at least 3 weeks to kick in and during that 3 weeks I was very irritable and cranky. After that my constant headache eased up. I've been taking it for about a year now and am just about to drop to half my dosage (per the doctor) to see if the headache comes back.

Good luck, I hope it works for you.

Sandi K.

[cathmat]

Its been six months for me and i was told to enjoy time off and make most of it , easier said than done when u feel so ill and no energy . I think the anger must be normal . im in a hate my life mood at the mo .Im jealous of all my freinds who are healthy and seem to be getting on with their lives while mine is staying still , or rather come to a stop . All of us are 40 this year so lots of celebrations that i m not well enough to attend , i spent my 40 th vomiting .I know i neeed to cheer up but its hard when you feel so low. Keep your chin up x

[Teechur]

Teechur, I take topomax and find it to be quite effective. It took at least 3 weeks to kick in and during that 3 weeks I was very irritable and cranky. After that my constant headache eased up. I've been taking it for about a year now and am just about to drop to half my dosage (per the doctor) to see if the headache comes back.

Good luck, I hope it works for you.

Sandi K.

I'm on week five now and so far no love, but I'll see my doctor in two more weeks, so that will have been seven weeks and I think that should be enough time to evaluate it. Today's headache started out very light and I was doing the happy dance, but now it's back up to a six. I'm still happy because I took my student to Gameworks (video games) and tonight we're here until midnight (in my classroom...fortunately I have the quiet room) so I am not surprised it has boiled up a bit. So glad it wasn't like yesterday (all day in bed...what do you call it? A duvet day?)

A "friend" had the audacity on FB to give "It could have been SO much worse, Tory! Geez!" get over it comment yesterday. Fortunately one of my rabid real friends chewed her up and spit her out, then ran over her with a truck, threw her in reverse and ran over her again. (Not that I condone that sort of thing, mind you.) But that's kind of the thing that irks me. Yeah, I know. I get that. Yup! Could have been and you're right. I should be skipping around (holding my painful head, picking myself up off the ground every third skip because I'm such a klutzy little nut), and tossing rose petals over my shoulder singing the Hallelujah Chorus no matter HOW I feel! What is the MATTER with me!? The nerve!

Good things today...no sunglasses indoors, lower headaches, actually had an appetite (Topamax takes it away and I've eaten less than 600 calories a day the last two days, which isn't great) and enjoyed pizza and a sandwich, kids had a great time, ran into a friend in Seattle out of the blue (we live nowhere near each other, but are both athletes and "run" in the same circles so we never run into each other randomly in "real" clothes), and Dot (dog in picture with me) is here with me tonight along with my husband until midnight hanging out.

[Teechur]

Its been six months for me and i was told to enjoy time off and make most of it , easier said than done when u feel so ill and no energy . I think the anger must be normal . im in a hate my life mood at the mo .Im jealous of all my freinds who are healthy and seem to be getting on with their lives while mine is staying still , or rather come to a stop . All of us are 40 this year so lots of celebrations that i m not well enough to attend , i spent my 40 th vomiting .I know i neeed to cheer up but its hard when you feel so low. Keep your chin up x

Well personally, Cat, I think it's okay to be ticked off because it's not fair. I'm a little older than you (47) but really in the best health of my life. I used to run about 50 miles a week and in a split second all that stopped so I TOTALLY feel your pain.

I wish I'd had the opportunity to take more time off. I think that would have helped with the healing because when my second neurologist saw I went back to work a week after getting out of the hospital (so four weeks after) he literally said "What don't you get that your BRAIN BLED?!?!" and made me take two more weeks off. I didn't know! My first doc said "You want to go back Monday?" on my discharge day (Thursday) and I'm like "Uh, okay!" Well one day out and I knew that wasn't happening so took another week on my own (called her sobbing) "I can't go back...so tired...can't do it..." I was freaking FALLING DOWN multiple times a day! Not in the hospital because I was IN BED and when I walked I had an IV pole and someone's arm to take. Okay I'm getting worked up. (calmblueocean calmbllueocean happy place happy place).

Anyhow, I know that on days I'm stuck inside I do get a bit (okay, more than a bit) depressed watching my athletic friends post about their races and their workouts knowing that if I am having a good day I'm limited to a two mile walk, using a jog stroller (and honestly, I love it). But on good days that doesn't depress me because it's a GOOD DAY. On bad days I don't WANT to be out there because I feel like .

We'll all get a do-over, I pray. And I know we'll never take another good day for granted. We get this blessing of knowing how much people care. But right now, it's okay to feel whatever we need to feel at any given time and if someone else doesn't like it, that's THEIR problem, not ours.

[marycharisa]

Hi. I just found this site and really can identify with how you feel. I suffered a SAH on May 22nd, and like you was very active, running 35 miles a week, loving 1/2 marathons, 5ks etc. Find the highest mountain...I want to climb it! I turned 50 this year, and this was my present? A SAH? Yuck. I like you and all of us is glad to be alive, thankful for all I have and have always been. I am also so so sick of EVERYONE saying "it could have been so much worse, or be grateful, and blah blah blah..." It is wonderful to hear these little sayings when my head and neck are throbbing, loud noises put me into a panic, and I cry for no reason. Not the way I used to be, I like you want my old life back, the one with no headaches, limitations,brain fuzz, anxiety, weekly paycheck, no medical bills. etc. I have been a pediatric ER nurse for 18 years and would never speak to my patients and their families the way others have spoken to me! I feel you pain and have really had it...to the point of not wanting to even go out anymore, but I know that is not the answer. It is strange the amount of care in the ICU and then....BAM....Nothing! I have always known that any type of brain injury can cause problems with emotions, but there are no referrals let alone acknowledgement given to address psychosocial issues. Sometimes I feel like a complete "Hot Mess", but I know there is a very serious reason for this, but being that there was a SAH, should there not be more support?

[Louise]

Hi Mary, warm welcome to the site, glad you found us.

I turned 40 when I got that present too honey, yes I think there should be a LOT more support than there is after all this is the most complex organ the brain it seems to be universal wherever in the country/world the aftercare is non existant....

but just to say what your feeling right now is all quite normal...

take care

[kpaggett]

Teech, I'm glad you're back!

I was told that I'd be in the ICU for a week and then be back to normal. LOL

I've also come to realize that the culture of the hospital/doctors drives the attitude of saying you'll be fine when they really know nothing about it...they just see you when you're in the hospital or when you need surgery and that's all. They should say things like you're stable enough to transfer you from the ER to the ICU or from the ICU to the stroke unit etc. Semantics matter when it's the biggest trauma in your life.

And Just a little poem to leave you all with on this subject which I have been contemplating for some time now:

The lottery ticket

I place my bet, I choose the numbers.

Loss. How jarring, even as hope reflected expectations.

Last year a bet was placed on my behalf – the choice of that deficiency stolen.

Inadequately, I left the hotel for an endless parking lot.

I know the elusive casino exists somewhere, but I can’t sense it.

I recite my numbers repetitively as if transfixed.

What were they again?

Maybe they’ll come up another time and death will embrace me fully.

The lucky ones die of their SAH and take no deficits with them.

~Kpaggett (June 2012)

[Carl]

That is a very moving poem.

Heartfelt words for sure.

Ironically I bought a lotto ticket after I survived.

That ticket wasnt a winner.

I know we sidestepped the grim reaper. I like to think it was for a purpose.

If nothing else the purpose was to find each other here, and share, and help and care for each other.

Perhaps it is to help others, who may be more fortunate than we are , to understand that each and every one of us is different.

When I first came to the forum I used to think to myself, why am I here, others are much worse off than me.

Then I realized that each one of us is unique. none of us are the same, yet we are all alike. A common thread.

I am so glad that I have friends here who understand, and dont mind me repeating myself. Or the fact I forget.

I love the way you can express yourself through your poetry. I used to be able to do that but since SAH that is one of my deficits.

Not sure if I will ever get it back. But I am glad I can share your words.

[Teechur]

I've felt that way, Carl. I think I've had guilt because mine "wasn't that bad" but, to me, it's been catastrophic (at times). I am feeling positive in lots of ways, don't get me wrong. I do appreciate that I'm not dead (although I could be running some wicked marathons in heaven and wouldn't be sitting here with a blistering headache).

I think for the most part my anger is fading, but I don't think the depression is completely gone. I know I had two really great days (Sunday/Monday) and today started good but didn't end well...I still feel pretty good, emotionally but I'm really bummed. I'm just really tired of being in pain, even though it's only been six months but six months of daily pain isn't the fun one would think it might be!

[Winb143]

Reading posts Teechur I have gathered you are angry...lol Very Angry ...

Getting peed off makes head hurt more...you need to relax more and not stress about others..

My Surgeon said stress can hurt recovery...so anythings or people that stress you keep away from it or them

look after You Numero Uno.......

Keep off face book and/or block the silly person who does not understand what we have been through...and look after yourself

No others will do it ..so keep calmer and stress free...mind you life is stressful...but make it as good as you can...

I wish you all the Best

Love

WinB143 xx

[Louise]

We are the lucky ones we survived many havent we owe them to get on with our lives as much as we can do what we can sometimes when we can but to know that we won the greatest battle - life.....

this is ironic to read these posts as it would have been Ronnie's cousin Candice's 25th birthday today.................

[Winb143]

Well said Louise....you are a woman of few words but they make sense

Have a Great Day

Love

WinB143 xx

[KelBel]

That is a very moving poem.

Heartfelt words for sure.

Ironically I bought a lotto ticket after I survived.

That ticket wasnt a winner.

I know we sidestepped the grim reaper. I like to think it was for a purpose.

If nothing else the purpose was to find each other here, and share, and help and care for each other.

Perhaps it is to help others, who may be more fortunate than we are , to understand that each and every one of us is different.

When I first came to the forum I used to think to myself, why am I here, others are much worse off than me.

Then I realized that each one of us is unique. none of us are the same, yet we are all alike. A common thread.

I am so glad that I have friends here who understand, and dont mind me repeating myself. Or the fact I forget.

I love the way you can express yourself through your poetry. I used to be able to do that but since SAH that is one of my deficits.

Not sure if I will ever get it back. But I am glad I can share your words.

Great post Carl!

I'd like to think there is a purpose for us escaping the grim one himself... I am just waiting to find out what my purpose is... but like you say, at least we have all got together on this site and are able to share our experiences to help one another. Maybe that is the purpose... We are all learning together how to get through this and are able to pick up others up when they are down and vice-versa.

x

[KelBel]

Hi Teechur

I think this is a great thread. It will certainly help all those new to the site, to understand why they are feeling what they are feeling.

Most of the time I am glad I survived and I feel like I have got through it all okay (2.5yrs on) but I have my down days or moments too. I get really angry and am still flabbergasted by some people, like your facebook friend, who just 'don't get it'!

The brain controls everything for the whole body; movement, emotions, everything, and just because they cannot see the damage they assume we are okay when we look okay on the outside... my brain didn't bleed on the outside, my vasospasm didn't affect my looks, but it did affect the internal workings...

I am lucky to have survived, and I am very lucky to have recovered as well as I have done, but there are still little things that annoy me. I am not 'over it' just yet, despite others thinking I should be by now...

Six months of daily pain is debilitating for anyone. I hope you are able to go and see another doctor who can help find the right pain relief for you.

take care

Kel x

[Louise]

aw thanks Win...dont get me wrong tho just like Kel has said I too have my off/down days especially at the minute with the weather. hey only this morning I had a bubble with Ronnie, why do I feel like this, but thankfully now it is only the little minute outburst then all's ok again....Kel I dont think we ever can be 'over it' no matter what others think. I thought, so what, on that one long time ago hun....

[MaryB]

Ah Louise.....Your Indian name would be "The Wise Woman". ( mIne was "Runs with Scissors" now it is "One who cannot remember 5 mintues ago")

Just wanted to say enjoyed the reading. I try to live in present what is past is past- that goes for your crappy childhood or bad marriages, the way people treated you, all the wrongs that you feel you did not deserve etc..... I have tried to really live in the moment. I am 53 so I may see things a little different, both set of our parents are gone & have been, my kids missed out on grandparents as I never even knew mine. SO many things to regret or be sad about but it is what it is. I know it sounds so simple but for me I have evolved to a place in my life where I am thankful for good friends, the most wonderful sister inlaws that treat me liek one of their own. I see my boys becoming fine young men with good ethics and morals, that do the right thing and are bothered by the injustices of the world. I wish I could do more and do get frustated but it uses up my spoons and I do hang on to my handful of them and use them with great care. I do not wish this on anyone so if it had to be someone let it be me and not my family or close friends. I recall saying after my brother in laws crash that I woudl give anything to be able to ease that memory from his mind but he is as strong as I am and will be fine. I have been surrounded by so many that have horrible going on and happening all the time jus tby the luck of their own gene pool. I just think this is my baggage and I am glad I can walk and talk. I get others and feel for them but I am at this point in my life. I have seen sorrow and sadness, unfairness up close. I do not think I am so special that I think I can escape without something. I think my job now is to set an example to show how to "keep on truckin" along the best I can. I do not want to take away anyone process as I did not "get here" easily. I had much anger and pain along the way prior to this happening to me but i feel it taught me well.

Big HUGS. maryb