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Life forever changed or does it get better?


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August 21, 2009, four days after c section birth of my second child, I had a SAH at home, and did not know it. I knew I had a horrible headache and my husband checked my BP the next morning, but I refused that night to go to the ER. We had a follow up apt with the pediatrician the next day, and we talked to him and he encouraged me to get seen about.

The hell that followed was very unexpected. I know the ER docs were trying to help me, but the medical testing, and being held down while an out of practice ER doc dug in my spine trying to perform a lumbar puncture, many times , has created severe PTSD , which I have heard is par for the course anyway. I spent a month in the hospital, off and on , being home for a few hours and back for days in the hospital, away from my newborn son and his 5 year old brother. They could find no cause of the SAH ....no AV malformations or anything, and it resolved on its own. Praise God.

But ever since then, I am not the same person. It is like my brain is skipping around. I have the sensation from time to time, of soda bubbles popping int the back of my head. My personality, the mother and wife I was, my temper, my ability to deal with everyday stress, has changed. I can not get my HAPPY back. I am not me. Since then, I have been diagnosed with MVP and Dysautonomia, which cause a pleather of problems in itself.

I am angry because I am not the same person I was before all this. As hard as I try, I can not get my happy back. Every medication I have tried to take has only made things MUCH worse. My personality type is to put on your big girl panties and keep going. I can't keep going like this. I am so tired of putting my family through this. There are times where I just want to leave, so that they can be happy. Not suicidal ..... just tired of being so short with husband and kids. Not being able to make myself sit and play with them.

If I get upset, it is all the way. It is almost like an out of body experience that I am watching and can not stop it! Then, I go into a great depression , and my whole system shuts down and I have to sleep for hours to recover from it. I have a HUGE fear of doctors and even dentist. Last time I had a teeth cleaning, I left the hyperventilating, and crying like I had been assaulted. I am very hard headed and strong willed person. Why can I not move past this? My brain feels like a library. Everything has it's shelf to go on. Fiction , nonfiction , science fiction , ect. This is like a book, that my brain does not know where to put it. So it keeps reading and reliving it , trying to file it away.

I never know what will set it off. Since I have had #2 child, I have been pregnant twice. Once with an ectopic that resulted in surgery, and 2 weeks ago, I had to have a D&C to remove my baby that died in utero. It's heart just stopped beating. That was my 7th pregnancy and I have 2 living children. It went on for weeks trying to pass the baby without surgery, and at 14 weeks I had the D&C. This has spooled every thing up. I am struggling to breathe and function. Just the medical , surgery end of things creates so much fear and anxiety that I had to be sedated just for them to get me there for the procedures.

Tell me this gets better with time. Tell me that I am not crazy. Tell me that I will get my ability to be happy back , and this MONSTER that I feel like I have become, will go away. I am so thankful, to be here with all of my capcities. I seemed to have come through it untouched. No one ever said anything about the mental recovery. I just need to know that there is a better and how to get there.

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The trick for me is to get off the emotional roller coaster whenever possible. I am not always successful at it, but like you I can recognize that I am riding on it each time. To get off is a personal journey. I went to a neuropsychologist for a while to learn. It also helped my PTSD which I had bad. Now, I don't sweat it when I am an emotional mess. I'd rather not be, but I am and that I have to work with not against. I cry almost every day. My mood is good, however...it's my emotional outbursts over anything that get in my way. I think this is one of my greatest challenges. Telling myself that my brain is injured in the emotional centers helps because I realize then that I really can't help it. I just let it was over me and then it can be like it never happened.

I keep a log of it and then can look back over and realize that it has gotten better. Slowly.

I hope yours gets better too.

~Kris

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Hi,

I had my NASAH 2-1/2 months ago and my emotions are up and down. I pray every day and every night for recovery and patience. Hope is always there. But, there are times, like today, I was sitting and watching TV (which I hardly ever do anymore) and got that tingling soda pop feeling you wrote about and then light headed and that sends me in a spin. Not to mention the aching sore headache I've had all darn day. I ended up crying for a few and now okay again.

I am very functional and find when I am doing something else I am not obsessing on my head. I actually make up things to worry about and play them out in my head. I know, I know I need to stop. On top of the case-of-the-dizzies I have a case-of-thewhat-ifs.

It is hard when you have children, as I have an 8 yr old, and want so much to be part of their life.

I think when something like this happens we are never the same after. I am trying hard to think of this as a test of my strength, courage, and faith. Not so easy every day but it helps pull me through. I am restling with not being the same person I was, which I may find that's okay.....in about a year. :) My husband likes that I do no yell as much anymore. I find I am much more content letting most things go now. Just do not have the energy to fight nonsense.

Cheer up and know you are not alone in this struggle.

"i"

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Thanks ladies for the tips. It is not in my nature to not cowboy up. I have always been a bottler by nature. I am having to learn to open up and talk. Here is the thing....I have no idea when it is eating on me. It is just like whammo. I came home from the hospital and went straight into being a mom of a 5 year old and a newborn. I never gave myself time to recover. I was dismissed by my neurologist. No one ever said anything about recovery, PTSD or any of it. Until my husband found this site, I thought I thought I was nuts. I kept telling him that I feel like something i s broken in me. Like brain connections were being skipped or not being made.

I can not handle stress, my memory stinks, I have forgotten things about the kids being little and our relationship, I find it very hard to make decisions , and I can not stand crowds or loud anymore. I am just ready to be normal again and it really ticks me off that I can't get there. I want to sit in the floor and enjoy playing with my kids. I want to enjoy being around people again without feeling like my insides are quivering.

With time, it has gotten better, and I really have come so far. But I just want the old me back. Does this make sense to anyone?

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Hi

It makes perfect sense to me. AND all you have had to deal with would have put someone with less strength in a mental ward! I am amazed by these women with children at home. I know I am older but holy cow I have no idea how I could be reasonable for anyone but myself but I am sure we do what we have to do. Lucky I have a great husband that just lets me be.

Have you had any therapy? Where do you live? I felt so much better after therapy. I had to pay for it out of my pocket but it was worth every penny of it to feel a sense of sanity. I felt it gave me the validation for my feelings that I was not getting anywhere but here in BTG. Yet my friends and family are supportive I think I needed to hear it for myself that I was doing great for where I had been and where I was at.

I think because I have a great GP it helps me but the 2 neurologist I have seen should have opened my chart or paid me for showing up. They really made me feel worse, much worse. Really can they give you 30 minutes of listening? Or at least a questioner to fill out and they read??

I find I am still myself but better in ways but I think back as being a young mother and my doubts I had- I think you have been through so much that a therapist could really help sort out what you need to do next. It helped me set some small goals and not look at the overwhelming giant picture but the smaller one for right now.

Good luck sweetie, I hope you find some answers here. Look at previous links/ post as well. Maryb

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I wish I could scoop you up and whisk you away from everything--every distraction and pain and frustration so that you can truly heal from the inside out. One of the things that I wholeheartedly believe is that we must give ourselves permission to grieve what we lost, to be angry at limitations, and even to say "You know what? This isn't fair!" WITHOUT following up with ...but no one ever said life would be fair.

The reason I think we need that is when we try too hard to put our best face forward without dealing with the depth of emotions that come with a major medical crisis, we push it down until it has to come out. Think about it like having bronchitis. If you had a serious case of bronchitis and your doctor said, "Do not go to the gym, rest, take these medications and don't do anything to stress your cardiovascular system for 14 days" you would do that, right? You wouldn't say "Well Bronchitis isn't going to change me! I'm going to go out for a run *gasp* *cof* *wheeeeeeze*"

But that's what we try to do with our emotions, and others try to do it for us. I know they don't mean to do it TO us, but they try to tell us how lucky we are, how blessed we are, how we should be glad to be alive...and it's usually right when we're in an emotional crisis and we NEED to take time to feel the emotion we feel without being told (even in good intentions) to stop feeling that way.

Allowing yourself to grieve helps to clear the path to resolution and acceptance. It's like you explain that almost "train barreling towards me and I can't get out of the way" feeling that you have. Why do you do that? Do you think it's because you have such changed emotions that now that's how things are? Or maybe is it that you haven't allowed yourself to grieve the bonding with your second child, the loss of your five children, the limitations you feel physically and mentally. Instead you blow up because you've bottled SO much down that your body has to give.

I am so sorry for how bad you're feeling. Yes, I truly believe it will get better. In the meantime give yourself the opportunity to heal emotionally and mentally. Feel it all and then give it the outlet to let go so that you don't have to bottle up.

This is not one of those "Pull up your big girl panties" types of things. I never truly understood PTSD until I went through my SAH and "met" people also going through it in varying levels--many much worse than mine. PTSD is very serious and deserves the time it needs to resolve.

I just pray you find the outlet that allows you to find some peace.

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Teechur has put it so much better than I could but I wanted to talk about the miscarriages. I only had one miscarriage & it was truly horrible. A friend of mine had 3 & had to have it surgically managed each time, she now won't try for a baby again. The pain of losing a baby should not be misunderstood, you do need to grieve for your babies as I do for mine. I lashed out at hubby cos all the important dates are engraved in my mind (due date, scans, test date) & he doesn't remember any of them.

I do feel like I'm the only one who felt that baby was a real person from the moment I knew I was pregnant. I never understood that before but I planned names, bedrooms & all the stuff that goes with a new baby. I did grieve for that and for the person I used to be pre op. I still get angry about it & sad for myself & my boy that I'm not the same person any more.

I may not be the same but in some ways I am better & you will get there too, part of accepting who you are is to grieve, get angry & shout that life is unfair & then maybe get sad that things won't be the same & then comes the realisation that things can be better. Perhaps the new you will be more compassionate & understanding & won't need to 'cowboy up'. Bottling up is not good for you, it has to be let out & then you can move forwards.

I'm sorry if this doesn't really help but I really felt for you & your lost babies, just wanted to show some empathy. If I can help any other way just send me a pm (private message)

Take care of yourself xxx

ps your youngest will only remember the you you are now, perhaps you need to be the best you you can be now?

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You're not crazy. It will get better with time, I truly believe that and you will be happy again.:-D

soap opera writers could come to this site and read some of the stories and they would be sobbing at the real drama and tragedy that people are living day to day. I am so sorry for your loss. Miscarriage weighs heavy on the heart as bagpuss describes.

You say you feel like a different mum, me too. That's not unusual I don't think but you have to get help to come to terms with what has happened to you. I have and am. You sound physically in good shape, yes? Then time to start working on the mental aspect maybe. it's worth it. Don't bottle it up please.

We had a sudden and terrifying event explode into our lives that scarred our brains and body, you can't 'man up' to get past it. We learn to accept its part and parcel of us. In your case you've had to deal with the introduction of a new baby Into that mix with sleepless nights and all it entails. It's no wonder you feel like you do. I felt that way a little after second child and that was pre head pop!!

The young years are so hard and I find any stress so much harder to deal with now, it's like the brain just doesn't have those same reserves. Maybe it never did and we just kidded ourselves we coped. Please go talk to someone. Are u in Uk ?Headway will help and the Miscarriage Association have some excellent support services. If you're in another country someone will advise where u can go for some help.

Hugs

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Life maybe forever changed it can get better that's up to you.

Your not crazy it can get better but you have to work at it and sometimes very hard, councelling is a good place to go but maybe you need to see the nuro for a check up too.

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Gill made me cry and I was all fighting fit today xx ha

JH You are in early stages look back in 4 weeks and then another 3 and see if you have improved albeit a

little.

Look at your babies eyes who do you see in them you or hubby?

Cry if you need to, I have done my fair share of crying and all I got was baggy eyes xx but if you need to sob

do it.

I have given vent to my emotions on here, so go ahead, but things do get better.

You get good days and bad days just like before, but after a while things improve and you have it harder as you have

your new baby to look after and we get emotional after having a baby. Is it called baby blues?

I wish you and Family well and do not give up, Never Ever xx Now smile and sing to baby

Love

WinB143

xx xx

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I have thought about you all night and all you have gone through. I hope you find some comforting advice here. You have gone through so much I just think anyone would have a hard time. Just know you are not alone in here.

Maryb

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I have no words to describe how much your comments mean to me. Not that I am pitching a pitty party, but just someone who understands. I have tried so hard to hide my brokenness from family and friends, because I do not want to burden them. Even the night I had my SAH, I was talking to myself in my head, telling me I was being a wuss. That it was just a little headache and I was being a drama queen.

I want nothing more than to be okay. Emotions are never something I have known how to deal with.

I thank you, for your words and understanding. As far as the 5 I have lost, it bothers me too that no one remembers the dates. They seem to have mattered to no one but me. I knew they were there before I even tested. And I knew they were gone before they were ever lost. Call it Mama intuition. They are real people to me, and I try very hard to live in a manner that I will get to heaven to meet them one day. I know I will. But I am just so thankful for the 2 amazing boys and Godsend of a husband I have, that I want to be better for them.

I have to be okay. I am too needed and loved not to be. I am trying to get better at understanding my new brain and how it works. Looking for triggers before the backlash. A lot of my frustration comes in with how hard it is to make a clear choice on easy, everyday stuff. I am like a squirrel in the road, not being able to decide which way to go , so I get whacked by an oncoming car. LOL

Again, thank you all for all the advice, ears, shoulders and support. I can never thank you enough. And please know, that I pray for all of us to find our new normal and for us all to get our Happy back.

With greatest appreciation,

Jessica Helms

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MaryB

Thank you so much. It has been a tough 4 years. With everything that has gone on, we have moved 3 times and built a house. Alot of this is not having the time I need to deal with it. I am working on that though. I love your dogs ... so cute. I have a boston and she drives me nuts my owns my heart. LOL Thank you again for the advice and support.

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Teechur

It has been a long road, and I have come so far. I just get flustered when I run into the same dead end with it. I have tried so hard to be the old me , that I forgot to find my new normal. I do need to get better with looking for triggers, so that I can see the cause and effect , and not let it get to that point. I just have to find my new norm and a new way at looking and dealing with things. If I could accept what is broken, and try to find new ways of doing things, instead of being so angry about not being the old me..... I will be happier. This all just caught me off guard. I had no idea what recovery included. No one gave us a heads up at what to expect with this. Maybe they didn't know either.

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Bagpuss

Thank you so much. And yes....everything you have stated, I feel. This go around with it, we had a healthy baby and then just like that, heart beat gone. I would be lying if I said that my faith has not taken a very hard blow. This baby was conceived on Easter Sunday, and was due Christmas Eve. I saw it as God's promise to me that everything was going to be ok, because I really thought I'd never be able to get pregnant again.

I am so sorry for your loss and your SAH. Two things that no one will ever understand the pain of, unless they have been there.....but it isn't something you would even wish on your worst enemy. No one should ever have to feel the pain of either. God bless you and thank you from the bottom of my heart.

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Daffodil

Thank you . No I am in the US . Alabama to be exact. LOL I totally agree about the brain reserves. I swear it is like an electrical system or a car backfiring. A channel is being skipped over in the brain. I guess we have to find new ways to get to the same places, just by taking new roads.

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Louise

I do not have one. They all dismissed me when I left the hospital. I called as instructed by the hospital for a follow up, and was told there was no need. He didn't want to see me. The first one , ordered all these test in the hospital, and left and went to Africa, hunting. He abandoned me and I was tortured because of it. The good Neuro , didn't want to see me again. What do you do with that?

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J,

I'm in the US too. Ohio now. Emotions have been my biggest struggle throughout this thing. I too was anti-emotive pre SAH so it makes it all the harder. so it is embarrassing to me on top of it all to be crying my eyes out over something that I know wouldn't make anyone else THAT emotional. On the flip side, I belly laugh every time I find something amusing while others are just cracking a smile. It took me a while to come to terms with this as well. I freak when I am scared too. However, it is coming less often or lasting for shorter durations. My husband used to time me (without my knowing to gauge my progress) and initially, I cried in existential crisis for about 1hour. Now it is usually 15min and happens less often.

Teechur,

I really was happy to read your post for both you and me.

~Kris

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Jessica,

It doesn't sound like either Neuro is "good". There must be other Neuro's in Bama. Use your GP to refer to you someone else. Have the Neuro office send your file to the new Neuro. Have you talked to your GP? I found my conversation with my GP was better than any conversation I had with my Neuro. However it was through the advice on this site where I moved from talking to the Neuro Physician Asst to the actual Neuro. But even then, my Neuro wasn't very informative. It was my GP where I got satisfaction talking like human beings.

Either way, like Louise said and I agree, you need to get checked out to make sure you are OK.

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  • 2 months later...

I had my anniversary a few weeks ago of my SAH. 4 years. It really ticks me off that the birth of my son is clouded with the memory of the SAH. I try very hard to ignore it but it is still there. What is even worse, out of the blue I had a PTSD episode last week. I looked at the dates and it was my brain reliving the torture I endured in the hands of an ER Doc and his nurses holding me down and digging in my spine trying to get a spinal tap. I was punctured 10 time unsuccessfully before they sent me to someone who could do it with the help of imaging. And this after the angiogram that I was fully awake for and totally naked and bleeding all over myself fro just having had a baby...telling me I wouldn't feel a thing, and feeling every painful movement, and dye release from start to finish. Beeps now have me like Pavlov's dog, and send me into shakes. Grrrrr... I am angry and bitter and just want it all to go away! I am sick of this having the power to pop in and interrupt my life.

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I swear I do not know why they do the angiogram awake in some hospitals. I was fortunate I was asleep, but, do remember the dye during one of the three I had. I am told lumbar punctures are very painful. I am so sorry for you.

But, you are alive four years later and have your family. Most important to be sure. It is difficult to let go sometimes since this is such a haunting experience.

You are a survivor and that makes you a hero in your children's eyes, I am sure. Think positive, you are worth it.

I

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I cannot help you but we are alive and after a year of being out of it the best thing for me was my daughter who

after I had shunt fitted said "welcome home Mum, good to have you back"

We both blubbered and she squeezed me that was when I knew I'd get better for Her sake and mine.

You can make it JH keep going day by day and week /month you must have seen some improvements any?

I cannot walk a long way but after being told I'd never walk, it is an improvement just to get to toilet.

Keep fighting it, never give up come on girl you can do it xx

Keep Well and take it at your own pace.

Love to you All

WinB143 xx xx

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I am so thankful for all the blessings. The PTSD part of this, is the hang up. I will be going along as normal, happy and not a care in the world. All of a sudden, a smell or a sound triggers a response in my brain that I can not control. Adrenaline dumps, heart goes to racing, phantom smells hit, and even phantom pain. My body goes to shaking and the flight response is triggered. I still wake up with nightmares. But the bright side, they are getting fewer and farther in between. I think that is why it bothers me so much.

Just when you think you are over it and life is "normal" again...BAM. LOL Having a baby is one of God's most precious blessings in the world. I just hate that with that blessing, there will always be that memory attached to it. I also see it as a blessing that I am still here to celebrate and watch my son grow.

I came out of this physically no different, other than the extreme fatigue which has gotten 100% better. I just wish the mental part would knock it off. My personality is the same in many ways, but that has changed a lot too. I find it hard to be in group settings . The longer this goes on, the more I find myself wanting to stay here in my little house. These are things that are just not me, nor have they ever been.

I have always been the life of the party, go getter, taking on the world. Everything I have read says that this is normal and part of the after life, after a SAH, or it is common. Does anyone else struggle with any of this? I am at my wits end with it.

I can not change the things that happened to me.All I can do is learn how to roll with it, and I am trying. It is just hard when the PTSD side comes in out of the blue and kicks your feet out from under you. I have come through the flames of this fire and now I am ready to completely put it out!

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