Anyone else feel alone

[lisac]

Hi Everyone, Today has been 6 weeks since my SAH surgery. I came home 4 weeks ago. I am very lucky and didn't have any complications after surgery and my Dr. says most of my issues will clear up within a few months. I'm struggling mostly with emotional issues rather than physical. Today I went for a walk and coffee with two friends which normally (pre SAH) would have been fun. Instead today the conversation felt shallow and I felt alone.

I've had this feeling every time I'm with others since I've been home. Even in the grocery store among strangers, I feel different from everyone else - like I don't belong.

I'm thinking this is probably normal after a life changing event and hopefully will resolve itself. Is that the case? Anyone else feel this and have any advice?

Thanks, Lisa

Edited March 11, 2012 by lisac

[Kaz]

Hi Lisa

I'm 5 months post SAH now ... its been a real roller coaster of emotions, I'm still on the ride but have to admit it is very slowly getting easier.

I had a huge break down about 6 weeks post SAH - as with most, discharged from hospital with nothing - no follow up appointments, support ... not sure what was right, what was normal. I remember seeing my kids off to school, my partner had gone to work and i just sat and sobbed, and sobbed, and sobbed. I couldn't stop. It lasted all day, I couldn,t speak - I rang my GP surgery for help and did manage to get an appt, saw my Dr and just continued to sob uncontrollably.

Part of me was unsure and confused about how I should be feeling ... I had everyone telling me how lucky I was to be alive etc etc ... because I didn't feel as 'lucky' and 'grateful' I felt that maybe there was something wrong with me .... to me I had had a problem, went to hostpital, had surgey and was fixed ... not that disimilar to having a burst appendix and having that removed. Yes I was told the stats of survival etc, but it all just hadn't sunk in as to the severity of the event.

Also because I looked 'normal' - people were expecting shaved head from surgery, scars, maybe loss of use of limbs, dribbling ... there was none of that, I almost felt like a fraud ... yes something has happened to me honestly!!

I was refered to councelling, which for me was a great help and would recommend you try it.

I still have bad days, tearful days - usually more to do with the frustration of being forgetful or not being able to multi task, but they are becoming less frequent. each week I have to remind myself another goal or milestone has been reached, and I have to also remind friends/collegues and family that my brain just doesn't function as quickly as it use to but to bear with me and I get there in the end

I'm waffling now, hope its been of some help, I suppose what I'm trying to say is that you are not alone, the emotional roller coaster is 'normal' and most sufferers seem to have suffered with some level of depression along their journey of recovery

easy said than done but you have to focus on the positives - i should practice what I preach

[lisac]

Hi Karen, you are so right. It is about not knowing how to feel. I'm not sure I've come to terms with the severity of the situation either. I'm with you... it felt like a medical condition that was fixed. Because I don't have any lasting issues, I feel like my aneurysm was an "easy" one (no big deal) and I should feel normal. I'm also not typically an emotional person and having this constant stream of emotions is very confusing and disturbing to me. Some counseling might be a good idea. Thanks for sharing your story.

[MaryB]

Hi Lisa, I understand that feeling. I have a feelign of not really giving a about anybody (even my family) at times unless it is searious. I am different but I look fine. Clients at work tell me all the time I look "normal". Funny, I jsut think it is part of having gone through a life changing event. I think in our lives we have several 3-6 life changing events in our lifetime. It is a time to pause, reflex and learn- it has changed who you are and now you feel different. I am still somewhat unemontional about it all but at the same time i lack the passion I once had, maybe not enough energy yet. It is strange but I am different in many ways than i was before so I am going to take this as a wonderful life lesson.

[Teechur]

Oh Lisa I know EXACTLY how you feel. I'm 6 weeks post SAH too and it's been the hardest thing I've dealt with because when you break a leg you have a cast and your leg is broken. You have xx weeks for healing, and as long as you're smart and careful it'll heal up and you'll be on with your life. Your leg is broken, but YOU'RE still whole. But with a brain trauma not only do we have the pain (headaches) but we have the modification of who we are along with the trauma of something coming out of the blue and changing everything overnight. I feel like part of me is broken. Tears, yup and like you I'm not a crier. I cried last night. I cried a little this morning. I'm getting anxious thinking about work tomorrow.

I appreciate that you shared because it helps us not to feel so alone. Others DON'T get it and it's not their fault. I wrote a blog post last night that started as an angry rant called "How not to help" then decided that if anyone were to read it, they'd also want to know HOW to help. I figure I want to remember this and I want to be able to share with others at some point, and if someone reads it maybe it'll help them not just relate to what I'm going through, but also what someone else with a head injury might go through.

I am starting to feel a lot stronger, and I can tell healing is taking place but that doesn't mean I'm healed. I wish people would understand that...I had someone say to me, "Aren't you over that?" Uh...no.

I wish I had known so much coming out of the hospital. I was in such denial. I was released after 19 days with "take it easy for a few weeks and no strenuous exercise for six months" which means what? No one told me I'd be crying all the time, I'd be so exhausted, I'd get overwhelmed by the simplest things (my husband tossed a box of pudding into the grocery cart today and it startled me and my brain just shut down leaving me shaking after I screamed out in fear...sigh...over pudding), I'd forget things so much, and my ability to multi-task (something I have always been darn good at, tyvm) would be taken away.

Cognitively I know it's better, I can count the things that are better than even a week ago. Cognitively, I know I'm lucky, blessed, even among SAH survivors as it could have been SO much worse. But emotionally I'm still ****** off at my body, I still feel a little angry (okay more than a little), I want to both tell people to leave me the *** alone and hold me at the same time. I miss my identity as the strong, with-it person who can leap tall buildings in a single bound while at the same time wanting everyone to "get" that I'm not her any more (yet still trying to act like her). I'm my own worst enemy because I can do a lot of things, but what I don't show others is that I can't do them as fast, as well, and it takes longer (although I did have a very with-it day Friday).

I don't know how to be this person I am right now, but I do know I appreciate what you wrote (and apologize for hijacking the thread for my own rant).

[lisac]

Teechur, just reading your post made me cry! I can so feel your pain. I like your saying of "I don't know how to be this person I am right now..." - that

kind of sums it up for me too.

I should be in bed sleeping now, but my brain won't shut off. It's either going over the events of my aneurysm and hospital stay or getting angry at things people said or didn't say. This has not been a good day. Hopefully, tomorrow will be a peak on the roller coaster.

[Gill C]

Lisa remember you are never alone on here but I am sure we all identify with the isolation you have when you first come home. I didn't know if what I was feeling was normal or if I should be worrying about what I felt. I was lucky & found BTG a few weeks after discharge & honestly couldn't have coped without the info & support from here. I have a neuro specialist nurse I can contact & in the early days the neuro registrar gave me her email so I could contact them if I was worried. Problem was I was worried about everything but thought they would be too busy to help dealing with 'serious' stuff.

Once I knew that what Iwas feeling was normal I gave myself permission to feel that way, I too felt I should be grateful as I walked round with my anni for 6 weeks before it was finally found & made it through. I didn't feel lucky, I felt everything but lucky.

In terms of acceptance of the new me it does take time & one of the biggest steps was contacting Headway & then going & admitting I needed help with the emotional side of things. I also had some CBT with the nuero pysch which was good although not entirely what I wanted as I wanted counselling to help me deal with the fact that but for a turn of a card I could have died. I still find talking about what happened to me hard although now the scar is gone, the headaches are mostly gone & I have no issues apart from my right eye. Almost 2 years on it seems like a bad dream but the fatigue is very real still for me, I have learnt to accept it for the most part but I still get frustrated .

Hang in there hon you are def not alone & we're always here for you

[lizzy]

Hi Lisa,I'm sorry things are rough right now You are definitely not alone I Promise You,I feel exactly the same I get upset so easily. my poor family have been through so much,now all I can do is cry:( it's not that i'm not grateful to be here But I just can't help it. But I just know things will get better take care and all the very best lizzy x

[KelBel]

“I want to both tell people to leave me the *** alone and hold me at the same time”

Teechur – I can so identify with your post!! I still get days like that now, even 2 years on… To be honest, it has been building up again more recently in the past month. I don’t feel like I ‘fit in’ anywhere.

At work I see myself as different because I don’t have the stamina to do overtime and help out with clearing down our work queues, but I know I cannot do the overtime as I tried that a few weeks ago and totally burnt myself out!

And with friends, they don’t all get it that I am still suffering to some extent, and they can’t understand why I feel so tired all the time, or get over-tired when there are too many things to contend with; people, noise and light being my worst offenders…

Lisa – you are definitely not alone here. I can recall the isolation I felt in the early days and weeks after leaving hospital. It is crazy that the hospitals do not prepare us for what lays ahead.

It does get better (even though I have been feeling a little down lately, it has got better over time) and you don’t have so many down days as time goes on. I did have some counselling within the first few months which really helped to validate what I was feeling, and why.

I stayed at my parents for the first 10 weeks post-op, then moved back to my flat on my own. I cried when I was finally alone again. It was scary but I got through it. I would cry a river most days at first, which makes your head ache more… Better days are just around the corner for you

Take care

Kel x

[Louise]

You are definatly not alone in that feeling I think we can all identify with you post hun.

my coping thing was I used to look at people I was having the hard time with and think could you cope with 'this' doubt it....

Accepting the 'new me' didnt happen over night but when I accepted it I moved on & honestly I like the person I became = not many people get that chance.

You are still very early on in your recovery so try not to think is this 'it' because it will get better honestly...

take care...

[Skippy]

Hey Ladies

Definitely not alone in the way you're feeling and it is perfectly natural. I had very similar feelings after my SAH (5 1/2 yrs ago). I felt totally out of control of my emotions, very nearly had a break down and felt so totally isolated and alone. I had counselling, through my GP, and it was a immense help. I wa then diagnosed with post traumatic stress disorder - again perfectly natural after SAH. I recommend that you ask your GPs to refer you for counselling - personally I think this should be done as a matter of course - it is with other major traumas in people's lives.

Good luck ladies and remember - it will pass and that we're all always here for you - so technically, you're not alone.

[Guest]

I did feel that way initially and really struggled in the early days. My few experiences with being out the first couple of weeks I was released from hospital were not good. I recall being at a restaurant for lunch one day, as I didn't want to be home when the housekeeper came - I said to my husband "just because I look like my old self and I'm sitting here across for you eating my lunch, doesn't mean I feel normal. I don't and far from it". It took some time before i could actually walk into a grocery store or my office without feeling disjointed and disconnected. I felt overwhelmed and over stimulated, sick and dizzy. Someone on this site described the sensation as looking through a kaleidoscope. That was me. What I remember was not being able to look people in the eye. Weird, but I just couldn't because it was stimulation overload and I wondered if friends and family noticed. I just stuck close to home and skulked around the neighborhood at night with my husband and my walker. The low stimulation felt so much better. I later asked one girlfriend if she noticed that I couldn't look her in the eye early on and she said she didn't notice really. I think we appear more normal than we feel.

It's still early for you. I think this will improve. Don't push it as you cause more anxiety then. I remember feeling sad about not knowing if I'd ever recover, but I did. A hasty recovery, not the norm, but I guess it does happen.

Positive thoughts for you. Take care.

Sue

[DawnS]

Oh, what a brilliant thread this is! I have read through and everyone of you who has posted could have picked their words straight from my head. It is really encouraging to know that these feelings are normal and we all get them. It's also really good to hear from those of you who have been at this a lot longer and to know that there are still improvements to come!

Lisa, the thing where your brain just will not shut off, that gets better too. It took me about 4 months (sorry to be a bit depressing there!) but it got there in the end. I used to think that my mind was trying to recover the lost three weeks. But then I decided that some things are better left forgotten and that seemed to help a lot. Another thing that helped me, someone suggested to me that there was nothing wrong with doing nothing at all for a while. I was so desperately trying to get my days to pass after my partner went back to work that I was getting in a right state. I was quite frantic. Then my counsellor said to me that perhaps i should try sitting still, no book or tv, just sitting and to try to increase the time I could do this for. It was so opposite to what I had been doing up until then that to literally do nothing felt seriously weird. it helped almost instantly though. My brain started to shut up when I was in bed and the mad frantic feeling of trying to get through each day subsided. I still use this technique on days where my brain refuses to do anything.

I wanted to write more, but my brain just ran out!

Dawn x

[Winb143]

We all feel down ..... guess more so since annie....what annoys me is being treated like I have no brain....well I guess

I have lost a bit lol

But we are here and that keeps me going....my husband knows 2 men who passed away with SAH ...So I guess I'm lucky ??

Well we all are lucky !!

I find being told "You must diet" last on my list of things to do in my life...I will try though...for a fifth time ..(anyone got a choc ?)

Ate bananas now blood has too much potassium, so off bananas....I give up !!! is it potassium in bananas ?

I cry at the drop of a hat.....(weepy win here) but I have more good days than bad so I am lucky ..We are all lucky so after

3 lets all laugh .....a3

Ha Ha giggle snort ha ha lol

Love to all

WinB143 Cheer up

xxxxxxxxxxxxxxxxxxxxx

Edited March 12, 2012 by Winb143

[kpaggett]

Hey Ladies,

I found these articles from the American Stroke Assn.

(http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20120102/#/16)

and

(http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20070506/index.php#/20)

both talked about an effect that happens sometimes with stroke where you cry and or laugh uncontrollably. I definitely have this going on! I cry when someone in the room is frustrated. I cry when the closing hymn at church is too joyful. I cry when I can't locate my husband in the Barnes & Nobel bookstore. I cry when I hear cello music (I play cello). It's been really challenging to deal with the normal emotions of almost dieing/recovery from SAH and on top of that dealing with these weird ones that just flood over me at the strangest of times. I am a music therapist and can't imagine practicing right now...I'd cry all day and would exhaust myself! At least now I know that this happens to people in my condition...Everyone thought I was depressed, at first. My mood is excellent, but man, I'd like a break from the toll it takes on my energy levels when I cry.

I hope we all come to a place in our recovery where we feel like ourselves again...or learn to be comfortable being a different person.

~Kris

[Teechur]

My mom sent me an article early on about PBA and it was very interesting. I don't think my emotions are inappropriate but more exaggerated (thank heavens). I'm not laughing like normal, though, and I miss that. I'd probably be correct to say I'm dealing with a little depression. I remember reading at some point (maybe in the hospital) that PTSD was common after SAH and i thought that seemed far fetched. Now I'm realizing that not only is it "fetched" it makes sense.

I'm having a rough day today and want to cancel an appointment with a client, but feel like I shouldn't. My head is killing me, though, and I'm not feeling "right". Maybe I should. I hate doing that, though. I'm just not feeling well.

[goldfish.girl]

Hi Teechur

I have been following your posts and admire your positive attitude & your 'get up & go', you are an inspiration! However, if your head is killing you today & you desperately want to cancel an appointment, maybe your brain is asking you to slow down & allow it to heal (like you would with a broken leg). You are going to get better & be able to continue with your commitments but give yourself time & perhaps explain this to clients too? If you follow through with an appointment when you are exhausted & in pain it won't be the best appointment you've ever kept?

Determination is the best tool to aid recovery, you have already proved that you have that, just give yourself a chance to get there.

Take care,

Michelle x

[Teechur]

Thanks Michelle

I actually did cancel the appointment. It was a workout with a new client and honestly, I just can't do that today. Funny, you're the third person who has pretty much said to me, just relax and let your body catch up. In the doctor's office I tripped and my mother in law told me to slow down because I was letting my feet get ahead of my body. Then my doctor said "You've never let anything slow you down! Even with your digestive issues, I've always known you to just power through, but you can't power through this." (I get chronic pancreatitis from a surgery in 2003.)

Right now I'm under the quilt a local church sent to me, eating homemade yogurt with fresh strawberries, and watching Discovery Fit and Health.

[JayKay]

This thread makes me so angry on all our behalf!! I am here to tell you it's normal what you are feeling and I so wish that everyone got the right support after SAH. I actually feel like I did get better help than most, and maybe because I work(ed) in a hospital, most of the people I interacted with were very supportive and knew what an awful thing I'd been through. That wasn't the case with some "friends" - in fact I distinctly remember getting really pxxxxd off by an old friend who lives in the US telling me after a couple of months that I had to move on and forget about it (all the while telling me that it took her something like five years to get over a hysterectomy.... yeah, I didn't feel too well disposed towards her!)

Anyway, you are welcome to check out my blog (www.wagwaan.typepad.com - Click on "the brain thing" in the right hand column and go back to Feb 2010 to see from the beginning how I felt). I know that when I had my SAH my sister-in-law sent me a link to the blog of a lady who'd gone through it before me and it was SO wonderful to read it and know I wasn't alone! (hers is http://champagneandchocolates.blogspot.com/)

And lastly, BTG was a lifeline, so do keep coming here and asking us anything - there's always someone who's felt the same.

Good luck and take care xoxo

[Janet]

Hi all I'm over 5 years into recovery as well and agree that emotionally the first couple of years can be hard as it takes time to come to terms with having a SAH and also learning to get used to whatever limitations it leaves you with.

Emotionally I'm still likely to cry at the silliest thing and if I overdo things fatigue can strike but learning my limitations and balancing my life/work has helped a lot.