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Yesterday was 8 weeks since my SAH surgery. I'm having a really bad day today. Feeling very sad and frustrated, but mostly guilty for putting my husband thru my roller coaster of emotions. How do you all deal with the guilt of that (or is it just me?)? Today, I'm wishing I never woke up from my surgery. I am so mentally exhausted from all the emotions and guilt. I feel like less of a person and that the SAH ruined my life and took away everything I enjoyed. I used to be an active person - I enjoyed running, skiing and biking. I did something active everyday. Now I'm lucky if I can

muster the mental energy to do the simplest task. I feel totally joyless. I started seeing a therapist last week, but only so much can be done in an hour. Well, I think I've been enough of a downer to you all. Thanks for letting me vent. Lisa

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Lisa,

don't be so hard on yourself hun. We've all been there, and come out the other side, to only go back again, but to resurface again

Your post is practically identical to the one I wrote when I first found this site - before I had these guys I would sit in the corner of a room and sob my heart out. It really is an emotional roller coaster, not just for you but also for your family and friends.

i have kinda come to the conclusion that if we are STRONG enough to survive a SAH then we are STRONG enough to get through pretty much most ***** thrown at us, we must be very special people to mangage all we do and still come out the other side smiling

6mths on I still have bad days, down days and days things are not so good with my family only last night my partner was getting really frustrated with me because I had to keep asking him questions not once not twice but three times because i just couldn't absorb the answers, it drives him nuts but is also frustrating for me when he seems to think its because i'm not listening to him ....

Councelling is definitely the way to go it takes time but I found it helped a great deal with my emotions.

Honestly, it does get easy, just takes time and you got to be patient .....

now I just need to read back thro this and actually practice what I preach!!

xx

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I agree with karen, if you look back at some of my early posts you will see me weeping with frustration at not being able to do the cinema, lunch & then shopping with my boy. Something I would have taken for granted pre SAH. I was very hard on myself & I know with all the advice here I picked myself up, dusted myself off & started all over again.

There are times I still feel guilty, my boy said something to me not so long back that was like a Knife to my heart 'I miss the old mummy'. I mean like I wouldn't give me right arm to be that persona again too. I've never said why me but I have felt extremely guilty for what I put my boys through & yes I have thrown out 'it would be better if I hadn't survived' in an arguement cos I felt like dead weight in the family.

Now I feel grateful to be here to see my boy growing up & realise it's better to have me as I am now than not at all. There is a new me & in some ways I am better than the old me. I'm a lot more chilled, stress less (except about benefits)etc. This is how its been for me & will be for you. I still groan when someone says 'its early days' but it is sooo very very very true. Things really do get better & you can be better (different) to the old you, there will be new purpose in your life & new ways of acheiving your goals albiet maybe slower.

Really be easier on yourself & talk to your family about the difficulties you are having, also to the counsellor & maybe your GP if you feel you need further help.8 weeks after hospital I think I had just made it to the local shop & back(we live on a hill) I was breathless & shaking but I did it!!!

If you ever need a shoulder I'm just a PM away xx

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Lisa, it honestly won,t feel like this forever. It,s such a lot to come to terms with. I don,t think I really understood it much until 6months after when it hit me like a bolt of lightening.

it,,s probably a good thing to start working through all these feelings in the early weeks, it,s all part of healing emotionally. Nearly 4 years later I feel quite unemotional about the SAH. I,m having tests at the moment and have been asked about it by several of the staff here. One said that must have been awful to go through and I just thought, yes, I suppose it was. Time really is a great healer but let yourself feel the emotions while you come to terms with it all.

Hope tomorrow is a much better day for you xx

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Hi Lisa,

We have our good days and bad days...it is to be expected.....I had good days and bad ones before my SAH..ie I could be a cow lol

Do not beat yourself up over it...we are Special....we are alive !!!

We made it through some didn't ...so smile if possible and think happy thoughts......and keep calm ....and I agree wih the choc

but I took it to the extreme..now on diet, well 3rd one this month...start again hmmmmm tomorrow lol

Be happy and sing

Love

WinB143 xxx

Edited by Winb143
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Hey Lisa

You have described everything I felt when I first had my SAH. Even the exercise part - this annoyed me more than anything cos I couldn't even skip without it hurting my head - I usedto jog twice a week, do step aerobics twice a week and swim twice a week - I also worked 9am - 6pm every day. Nearly six years on I work 9am -4pm in a school office and then some more for hubby when I get home - however, I've never managed to get back into the exercise on a full time basis. I tend todo aerobics at home now and fitness on the Wii.

The guilt feelings and the anger will slowy subside. I know its easy for me to say now but, it became easer when I stopped fighting the person I had become and grieved for the one that went and aslo stopped feeling guilty for something I had no control over. Time is a great healer, cliched I know, but in most cases true. I can honestly say that I very rarely think about the fact I had an SAH. I certainly feel that generally I am 99.9% recovered - the other 0.1% is the exercise thing which is probably more reluctance than inability now.

It does get easier - hang on in there.

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Thanks everyone... you always know the right things to say. I especially like hearing that at some point I won't think about having had an SAH every day. Right now it consumes almost every thought. I would love to forget about it for just an hour. The mood swings like I had yesterday are just awful. I have no control over them and never know what might set me off. Thankfully, I feel better today. It does help to hear so many of you say that this won't go on forever. The diary and doing one thing I enjoy each day are great suggestions. I will give them a try. Thanks again everyone for your support and kind words. I'm very happy I found this website. I can't wait until the day when I'm past all of this and can give others support.

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I think we must have had ours around the same time (I believe within one day of each other). Yours was more serious than mine, it sounds, but the emotions are the same.

I have had another serious health issue in my life and it was awful too, but this is a different kind of frustration. When you break a leg, or have a surgery, or catch the flu you can tell without even thinking about it whether you should or shouldn't do A, B, or C. With this, you can't. It's maddening. It's like not only was your body injured, but your person was too and things that used to be effortless feel impossible.

I've been keeping a blog and I do find I mostly write about what is frustrating me and when I get angry, but it's helping to even look back two weeks ago and see some changes. Today is a rough day for me too, and I just went and complained on my blog that I miss that old girl I was (also very active...ultra marathoner, triathlete, personal trainer). I just want to turn back time some days.

But I'm starting to have good days and I've received so much love, support, and scolding from the people on this site. (I know! I'm overdoing it!) I can't say I'm skipping along little Merry Sunshine tossing flower petals over my shoulder...but I'm feeling positive about the future.

We will heal...our bodies and our souls. In the meantime, ask for hugs or help or love or rides or coffee or whatever you need because everyone in your life who loves you wants to be able to be there for you. That is a gift you can give to them--allow them to feel needed.

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Lisa, in my early weeks and months I often wished that I'd bought a punch bag, so that I could knock ten bells out of it ... it was more out of frustration than anything else and like a lot of us on here, I needed to vent whatever I was feeling.... anger perhaps, the feeling of no control over my life any more and also the way that the SAH had affected my kids. I often used to take myself off into another room where the family couldn't hear me and just have a damned good cry .. they knew what I was doing and just left me to get on with it ... I didn't need comforting or pity, but just an emotional release. It did help to cry and get rid of the pent up emotions that I was feeling.

Try to get out of the house as much as you can .... I couldn't do much on my own for many months, but my Husband would often just take me for a ride out in the car, some nice scenery, take a bite to eat .... that sort of thing that will take your mind off of what's happened, even if it's only for an hour or so.

You will get there and never say "never" ... eventually you will find that your mood will settle down and little by little things will fall into place, even the exercise. There's no time limit, as you will do it at your own pace, like everyone else that has joined this site. Be kind to yourself for a little while. xxxx

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Hi Lisa, sorry my post ended abruptly yesterday lost internet connection....:roll:

yes at some point it wont be in your mind 24/7 like at the min, it does get easier as time passes & you can achive more.

For me once I stopped fighting against the old me and accepted the 'new me' life moved on for a long time I let it consume me - not a good thing to do, you'll hate hearing it but you are early in your recovery....

take care, hugs

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I totally agree with Karen and Louise....get out of the house even for a decaff coffe...and a huge cake lol..ok forget cake !!!

I am not the same person I was.......but I quite like the new me.......Always rated myself lol

My hubby used to get me a coffee and pour it in paper cup as I could not hold cup....Now Cheer up if possible Lisa and sing....

Things will get better xx and so will you xx

Be happy Lisa xx

love

WinB143 xx

Edited by Winb143
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  • 3 weeks later...

Lisa,

I think everything's been covered in the previous posts but I'd just like to add my own best wishes to you in your recovery - your mood swings are a natural part of this but it does get better over time - just hang on in there and keep talking to people so they understand - you are the same body with a slightly different engine at the moment but you will win the race - keep believing - good luck

macca

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Thanks everyone for your kind, reassuring words. Since my original post, my mood has leveled out quite a bit. I notice that the lows aren't quite so low and don't last as long. The last time I saw my therapist, I was in tears before I even walked in. It was a bad emotional day. Her suggestion really helped me cope. She said to not think of how I was feeling that day as "the new me" because it wasn't - I have more healing to do. Instead think of it as just how I was feeling THAT day. So simple, but it really stuck home.

It still boggles my mind all of the stuff that we have to deal with post SAH that nobody mentioned. When I left the hospital, I thought once the incision healed on my head and I got my strength back all would be good again. Ha! Here we are almost 3 months later and I have frozen shoulders (a side effect of brain surgery, who knew!) and weak arms and legs which my physical therapist thinks is neurological. All I know is it makes it very difficult to jog when my legs want to send me crashing to the ground. :crazy:

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Hello,

Lisa C,

I had pretty much the EXACT same experience. I'm in Michigan also, near Detroit. My wife just had a partial hysterectomy at U of M and they were great. As far as aftercare, it is certainly much to be desired. I think there are not enough SAH'ers for them to know or care about. Most of what I learned has been on this site.

I had one follow up visit as well. I told the doctor I "thought" I might "try" and go back to work and he was like great see you later. I went back after two months, much too soon. The NP at the hospital told me I'd be back to work in a week. Not!

I have the weak legs, body aches and weird scalp too. Usually only when tired though. Stay positive, it is early in your recovery. Send me a message anytime if you like.

David

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I hear you Lisa! I'm sorry, but I'm really ****** that all I learned about my recovery has come from experience, websites, and you lovely people. I was sent home with a "rest for a few weeks and do you want to return to work next week?" (Literally three weeks after the event, my doctor wanted me to return to work. When the day after I got out I called her sobbing because I wasn't ready, she gave me two more weeks. Seriously? We don't monitor the patient to see how she's doing? Granted, I thought I wanted to go back to work, but I don't have any experience with brain injury!)

I had a headache so bad tonight I called my husband scared because it was so reminiscent of the initial bleed. It's calmed down some, but I feel horrible and IT'S ONLY MONDAY! Wah!

Okay enough whining. Because my head feels like it's detached from my body today, I am referring to myself as Nearly Headless Tory. I managed to get through modified bootcamp (my relief instructor was in Seattle and when I texted to find our where she was she said "Oh, I told the girls...sorry" Uh...you said you'd take over my classes on Monday nights for the next nine weeks). I almost canceled but it was pouring down rain and one lady had biked over, another was new, and there were four other hardcore awesome ladies so I felt I should stay. At one point, I wanted to cry my head was pounding so bad and it made me more angry. Why didn't I know this was to be expected? I could have been more proactive about taking proper time off and managing my business to lay off some classes on others instead of this "maybe next week it'll be better..." business.

Sorry. Just not having a good night, but am very proud of my ladies tonight who rocked it!

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I feel my neurosurgeon would of certainly let me have more time off, as would my neurologist but I thought 3 months was long enough. I was so wrong. I cannot understand how they give you no instructions after this. I did not have to have surgery but both Dr.'s felt my brain needed the same time ( 3 months) to heal. I am 7 months post sah today and I am trying to pull myself out of the darkness again. I am maybe coming to terms that this may be the best it will ever be. I so badly want to go see my son and but I know I cannot trust myself to make that long drive. AND I am sad that I may never be able to make that 8 hour trip alone as I love to travel by myself. I think if I did not have to keep my job I could balance my life better as I cannot go to work and not do my share of the load. I cannot do less, just not my nature.

I am having a 4 hour stress test on Wednesday and I am sure that will push me over the edge and make me sleep in my car afterwards.

Teechur, You do A LOT - I mean you really do. I think if you go back and reread your post you will see how much you are actually doing. Crashing on Monday but you had a crazy week last week too. Do you get some rest during the day? When I am not working I am good for at least 2 hours of napping a day and it works great.

Lisa C. Is the therapist someone that was set up for you through hospital? I am thinking that I may need one! On my last visit I felt great and I said I woudl see them in 4 months as planned. But now I have been kickign myself for not following up on some suggestions. Errrrrrrrr.

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Wise words from you therapist Lisa, I found that the good days out weighted the bad eventually....

Have to say this '3 month' thing the doctors all seem to stand by (on eitherside of the pond) seems so wrong maybe they should change it to 3years more re-alistic:roll:

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David, nice to see another Michigander! What hospital did you go to for your SAH? Well, I guess I'm not alone in being discharged from the dr. after

one follow up visit. Just seems strange to me for such a serious thing as brain surgery.

MaryB, No, my therapist wasn't arranged through the hospital. I'm actually 500 miles from the hospital I had surgery at. Yes, I live in the sticks!

Many people on this site recommended I see a therapist and I took their advice. Glad I did, she has helped me a lot. I didn't know it at the time, but she has some experience with stroke patients which makes it much easier for her to understand what I'm going through.

Teechur, Sorry you had a bad day yesterday. Please try and take it easy and listen to your body. My wise therapist also made me realize that I wasn't

doing myself any favors by overdoing it. I think it was a coping mechanism... thinking I could do everything I had done before and pretending that nothing was wrong. I didn't want to come to terms with the fact that my body just can't do it all right now. I thought that if I pushed through it and ignored it, it would go away. Not happening!

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Here we are almost 3 months later and I have frozen shoulders (a side effect of brain surgery, who knew!) and weak arms and legs which my physical therapist thinks is neurological. All I know is it makes it very difficult to jog when my legs want to send me crashing to the ground. :crazy:

Lisac,

I have had neck and leg issues off and on since I came home. I finally figured it out that I was trying to do too much cardio exercises on the elliptical which made my quads feel really, unholy, oddly weird - so much so that I wrote a poem about it that I posted here. For my neck, I just have to take it really easy and don't try any strange head turns in yoga. (BTW, yoga was my answer to all the crazy stuff they wanted me to do in PT that just made me feel more fatigued in my legs and mind!)

As I like to say, hope is not fast and constant...it's like a tortoise browsing in a garden. Oh, how I wish he'd speed along at my old, fast, steady pace.

~Kris

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But now I have been kickign myself for not following up on some suggestions. Errrrrrrrr.

MaryB,

I too am going through a similar thing. It's like the old Kris doesn't believe she needs help as if nothing happened. But, I do need help. And as a therapist myself, if a client came to me with my presentation, I'd feel like she needed therapy to get through these unanswered questions and difficult emotions. I talked it over with all my friends and family and they all encouraged me. It was SOOOOOO hard to actually make the appointment, but now I have one for April25th and am nervous about it and have lost sleep over it. I took a makeshift stress test to see where I came out and I was on the boarder between High and Extreme stress! Wow, maybe I do need a therapist?

~Kris

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Hello,

Hi Lisa, Kris, Mary, Louise and nearly headless Tory,

I too have thought about therapist but not sure about which kind. PT, neuro psych? Pysch? too much work at the moment.

Lisa- How are you feeling? Take it easy whatever you do. I was at Beaumont Hospital in Royal Oak. Good doctors, ok nurse care, terrible aftercare. They never changed my incision and my wife had to give me a bath.

Kris- Nice to meet you and and a fellow Michigander! Please let us know how the therapy goes. Your mixed emotions are completely normal and I felt them also early in my recovery. It gets better.

Take care everyone,

David

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