Swishy

Hello JuneZ,

I had my bleed 5 years ago this past May.  The first year did not deliver to me what I had hoped for.  I still very much did not feel at all like myself.  Everything was a chore, cooking, cleaning laundry, all of it.  I did return to work but thankfully it was a 3 eight hour shifts per week and a position I had held for over 20 years, it did not tax me very much at all.  My family was grown as I was 64 when I had my bleed so did not have that responsibility at that time.

What I will say is that I see progress when I look back better.  I knew that at the end of one year I was better than I was when I came home from rehab.  Again when year 2 rolled around I could look back and see....yes I am making progress.  There has been the challenge of learning to accept and love the new/changed me. 

I run out of energy quickly and want to check out of what is happening.  My balance is not the best and I work hard to use caution as to not fall or bump into things.  When I push too hard, as you mentioned, it takes a toll.

I did stop working after 3 years but did pick up a volunteer job, just once a week at a zoo.  It is fun as I love animals and children and plenty of both there.  I can sit when I want and chat about the animals.  Yes I am exhausted afterwards.

A brain injury, as I found out, is slow to recover.  My road to recovery has had its bumps but I have seen a grand child born, a son marry, taken some vacations and little things like sitting in the yard and fixing some plants.  

I will tell you I also did some mental health counseling, it was helpful to me.  I learned how to reset myself (doesn't work everytime) when I am able to it is like washing my face with cool water   

My thoughts are with you on your first year and also my best wishes for many many more.  This is tough, but life is beautiful and we are survivors.

Be well

xx

Jean

Hi Crystal,

I too had a bleed with no aneurysm found.  I too had the pain in my back and they said I had blood in my spinal column, mine also went away.  I also had pain in my buttock right side that they thought was the periformis muscle...Perhaps it was also from the blood in my spine, I really am not sure.  

I hope your husband finds each day to be a bit better.  It is a slow process and so hard to be patient waiting to feel like yourself.  

I did not have a problem with sweats.  

My best wishes to you both

xx

Jean

Hi Suzanne,,

How wonderful you are doing...congrats on 11 years and also on your marathon dream.  I totally agree with you about this site bringing comfort it has been for me also.  

Be well and enjoy your running

Jean

Hi Faith,

I hear you, I hear your anguish, it is unbearable, I know..  I think as a lay person, you have to trust those treating him.  Of course asking questions and having them tell you what is happening is so important.  You are a part of the team, as he will need your part as he recovers. 

I did not experience a breathing tube or induced coma, I did ,however, want to reach out to you and let you know my thoughts are with you.  I pray things improve soon.  

xx

Jean

Hi Faith,

I am so sorry for what you and your husband are going through.  I am glad you found this site, many wonderful people here.

So 5 years ago I had a SAH and was admitted to the hospital.  I was good after the original episode spending 3 days in the hospital, being discharged with headache concerns.  I was not given any medication to try to prevent having a Vasospasm. 

Two days later I had a Vasospasm.  I was alone and as you say it went downhill fast.  I was able to call for emergency help and don't remember anything for the next 12 hours...I remember very little of the next 5 days, in and out with searing head pain.  My husband was sure I wouldn't survive, but here I am.  

Faith, it is such a slam to your brain, it takes time for it all to settle down.  I know it is so devastating for the family.  All of us on this site have had brain bleeds or love someone  who has had a brain bleed.  We understand, we are here for you to vent.  My thoughts are with you tonight.  

xx

Jean

Hi Claudette,

Happy 7th..I hear your positive spirit in your post.  You are so right that everyday is an anniversary to be enjoyed.  Hoping you have a happy day

Jean

I was taking an HRT when my SAH happened.  Now at that time the cause for my SAH was not found, and those caring for me searched every avenue. 

I asked if taking the HRT could have caused it and they said no.  I was on premarin for probably 9 years when my stroke happened. 

I did a short time later stop taking it as I had been trying to wean down off it prior to  having my stroke.

An added note to this I have found in the last several months that I have several family members that had brain bleeds, so perhaps it runs in my family.  

I do hear you when you say you are struggling, it was a very difficult time for me and the HRT brought relief.  Good luck with your Dr. visit.

Welcome Geoff,

Your message to your wife Emmi is heartwarming.  Getting through this type of experience is so difficult and those of us here understand and are here to support you and Emmi anyway we can.  

My thoughts are with you both.

xx

Jean

Congratulations Andrea on 7 years.  Love your picture, blessings to all those who reach out to people needing care.  I always love reading your posts.  Sending you warm wishes as you head into year 8  ...

Karen 17 years, amazing.  When I had my event I felt certain I would not get my full years.  This site and the sharing from wonderful people like you has let me stop worrying so about it.  While I realize we are all on our own personal paths, seeing your 17 year anniversary makes me feel ....hopeful   enjoy your day and thank you for making mine xx

xx

Jean

Hi Emmi,

I can see you have gotten the same messages of hope and care I got when I arrived on this site.  It is a wonderful place for both the person having the brain bleed and also for those who love them and are trying to help them. 

I am one of those with the brain bleed.  I came home from rehab with an appointment card in my hand, a swirling head and uncooperative body and million throughts and questions.  My husband I think was stunned perhaps a bit paralyzed by it all.  It took both of us time to understand it all.

As Tina writes rest when you need to and be kind to yourself both of you.  The brain heals so slowly and the whole event is so overwhelming it takes time and patience.

I am 5 years out and feel good, still feeling some of the affects but happy and enjoying my life.  This site was a warm friend when I found it, helped me so much, still does.  

Took me about 6 months or so to begin looking for support, perhaps your husband will join when he is ready.  I did do counseling but again, I think I wait long to do these things.  It was so helpful for me and I continue to use things like mindfulness and visualization to keep me centered.  

Be well, thoughts are with you.

xx

Jean

Sounds like you are a wonderful advocate for yourself Jen and that your medical team is receptive to doing their best for you.  I am sending you good wishes and a hug as you move forward.  

xx

Jean

Hi Jenni,

My heart goes out to you as you are struggling.  Jenni  none of us knew what to expect when we began our journeys.  We learn as we go along after the event, all doing the best we can.

 I was told that if I got a very bad headache again to go back to the hospital.  I didn't get a headache but just became unaware and was lucky enough to call for help before I couldn't.  I had a vasospasm.  I had no idea that anything like that could happen.  I guess what I am trying to tell you is please don't blame yourself, 

Time is a gentle healer but it doesn't come quickly.  I did counseling and it was so helpful, just letting it all out.  I practice mindfulness and visualization works for me.  I needed to stop and breath and look at the good in my life, it helps me.

Thoughts are with you

xx

Jean

Hi Lily...As said above it is typical to worry about it happening again, I sure did.  I even was skeptical of the doctors when they told me it wasn't likely.  

You are very early in your recovery..it is such a shock not just to our bodies and brains but also to us emotionally, it just turns everything upside down.  It takes time.  Where I went to rehab had a therapist come in and talk to me and while it was helpful because it made me understand that anxiety and even ptst are seen after such events, it was too early for me I wasn't ready. 

I am five years out now and did go for therapy probably about 3 years after my event.  It was very helpful but I do wish I hadn't waited so long haha I never found the perfect time but I am glad I went.  I also practice mindfulness and visualization.  They are helpful to me and help me rest my thoughts. 

I wish you well as you recover.

Jean

Michelle Happy Anniversary, wishing you a happy day.  I think it is wonderful you want to drive and are finding your memory is not letting you down.  I love having the freedom driving gives me.  Best wishes with that and your garden

xx

Jean

Hello Karen,

Welcome to BTG.  What an experience you have had, I am so sorry. So relieved for you your husband was close to help.  Karen I was very uncomfortable  anywhere there was a lot of activity going on. 

My bleed was 5 years ago.  While I am much better, it is slow for our brains to heal, I still feel like someone is going to bump me.  My balance is not what it was.  I feel a lot of motion when walking.  But I can go out into a store if not too crowded or I grab a cart.  I was 64 when I had my bleed, so 69 now.  

I think having others understand is difficult.  my husband and daughter, my biggest supporters, understand to a degree but I think not totally.  Bless their hearts as they work through it also.

Thinking of you

xx

Jean

Good morning,

Welcome to BTG...Such wonderful help here.  I love Tina's suggestion to have family/ friends come on the site to help them understand.  

A brain trying  to heal is different from other illness/ injury.  Our brains control everything.  I had a small  bleed followed by a severe vasospasm, which is what caused my problems.  I found the progress of how I healed was easier for me to see looking back, as I just couldn't see it in the present.  Hope that makes sense.

I did return to work, I felt pressure from the hospital I worked for.  I didn't get pressure  from phone calls or anyone saying anything to me but because I knew they would have to take me back but they did not have to offer me the job I had.  I urge you to listen to your body and reach out to your MD as suggested above.

This is all about you and your healing.  

Thinking of you

xx

Jean

Hi June,

I am so happy my words can help in any way.  At six months I was still all up in the air about it all.  The brain is a slow heal but it does seem to continue healing for a long time.  I agree this site is very helpful.  So much kindness along with good information.  We are a tough bunch all supporting each other...pretty good

xx

Jean

Thank you all from the bottom of my heart...so very happy I found BTG🥰

xx

Jean

Well it has been five years since my event.  I am well, living my life and enjoying the good things.  I am not the same as I was but the new me is ok, I like her  . 

I have had the joy of seeing a daughter marry, have a baby and a second is on the way and a son's wedding in October.   I have travelled to my most favorite places again, Mexico and Colombia.  I had fears those things were gone but I was able to do it and enjoy it. 

Most important in my life is that my husband and I have had another wonderful 5 years together.

I am thankful and I am mostly peaceful.  I have my moments, for sure, but visualization has helped me tremendously.  

And you my BTG friends, thank you all who listen when I vent occasionally and share when I need an understanding ear.  There is strength in numbers and we are strong.  

xx

Jean

Congrats Paula on 10...it is great to be alive and indeed life is good

xx

Jean

Hi,

I also found a therapist to be a great help.  I never have struggled with anxiety but did find myself to be fearful in certain situations, maybe could considered anxiety haha I don't really know.  

Coming here on the BTG site was and continues to be helpful for me and the therapist helped me by just letting me tell my story and I have embraced mindfulness (which is very helpful to me)...I also use visualization which again helps me.  My son, who is a mental health therapist, taught me about box breathing which I have used on occasion, just gets my mind to rest a bit.  

Your injury is so recent, the brain is slow to heal, different from any other injury.  Be extra kind and patient with yourself.  You also suffered physical injury which I can imagine is making it all more difficult.  

Welcome and so very happy you found this site, so many awesome people here.

xx

Jean

Hello 

I am so sorry for all your mom and your family are going through.  Being in a hospital and more so a Neuro ICU is a lot.  My family found it overwhelming and not always understanding all that was happening.  My adult children were so distraught and my husband was worse. 

Eventually things seem to clear for them but don't hesitate to stop people such as the all those treating your mom and ask them to explain even if they already did.  It is a lot..I found the nurses to be a great resource.  I felt like they were my protectors.

Do they have translator services for your mom?  Don't know where you are located but where I live USA they do this now on a pretty regular basis.  Through a machine or hooking up with a live person on the phone who is a native speaker.  It is helpful.  

Again don't know where you are located and can only speak for where I am but you can have a voice in what Rehab she goes to, with the problem being they have to have a bed for her.  

I am glad you found this site to reach out, we are here for just that purpose.  The people on this site are amazing and offer so much support.  

One last thing I will add from my own Neuro ICU and rehab experience is that I found my voice to be very small through a lot of it...I could speak but I wasn't really speaking up for myself, just letting things happen.  Reason I write this is I am thankful for my families voices and awareness.  You are doing a wonderful thing for your mom, my thoughts are with you.

xx

Jean

Hi June,

Welcome and so happy you found BTG...Did you have any changes when you noticed the dizzy feeling?  New job, becoming more active at something?  Our injured brains are sensitive and I find I don't deal with things the way I did before my SAH...

Drinking water is such good advice, I resisted it but found it does make a difference.

As written above consulting with your doctor is the place to figure it out and give you peace of mind.

Hope you feel better.

xx

Jean

Congratulations Daffodil, ten years is a lot of life  wishing you many more and thank you for being here for all of us.

Subs I love the poem, brought a tear...

xx

Jean

Hi Alan,

"I've got lucky" no doesn't sound strange at all...It is exactly how I feel and I think many here feel lucky .... to have survived and fighting to get back to our lives....I have seen a daughter marry, a grandson born and so much more since my event...Everyday, every year is a gift and I am glad to have them.

xx

Jean