Nearly 3 years on and can’t stop thinking if only I’d done something different…

[JenniH23]

It’s over 2 years since I last posted. It’s been a long journey to get back to some kind of normal.

 

I still have blind spots in my vision that is affecting my life greatly. Now I’ve had months to read every piece of literature about SAH I’m looking back at the time I came out of hospital and wondering if I could have changed things. I had a feeling of pressure in my head for about 2 weeks.

 

I remember having a conversation with my partner over wether this was the normal headache to expect. I wish now I’d rang the hospital as they maybe could have relieved this pressure.

 

And I may not have had the problems with my vision. It was about 2 weeks out of hospital when I felt the pressure equalise in my head. I feel so sad and low right now. Not being able to drive and see things as well as I used too is making me regress back to how I was just out of hospital.  

 

I’m blaming myself for not acting when I should of. But then they never told me in hospital to ring if I had a build up of pressure in my head.  

 

All the tests I had done by the ophthalmologist were normal and my neurosurgeon said the visual part of the brain was unchanged at my first 6 month check up.  But obviously it runs deeper within the brain. I just keep thinking back to those 2 weeks and wondering…. I didn’t realise you could relieve pressure on the brain via lumbar puncture…..

 

I’m struggling to move forward with my life! Everything is so much harder when you have visual problems. 

[Tina]

Hi Jenni

 

So sorry you are feeling low and sad  You have done so well with your recovery, dont be so hard on yourself. Sending you big hugs. Please dont blame yourself. It may not have made any difference at all. 

 

Have you thought about counselling? My GP arranged for me to see someone to talk to about things when i was feeling low trying to accept the new me. There was a waiting list but it was worth the wait. Just helps talking to someone outside of the family. We are always here for you too xx

 

Maybe go back to your ophthalmologist and ask for more tests? My eyesight was still improving slowly at 2 years. I did finally get back to driving.

 

Keep in touch and let us know how you are doing. Be very proud of how well you have done with your recovery. Things will get better, just takes time adjusting and accepting the new you xx

 

Take care 

Love Tina xx

 

 

[Swishy]

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

 

 

[JenniH23]

Thank you Tina and Jean for your lovely messages of encouragement and support. I spoke to my doctor today and she is increasing my blood pressure meds. She also spoke about another pill you can take that calms the body down when you are anxious. I also rang my neurosurgeon and spoke to his assistant. She gave me a lot of reassurance and said he was in tomorrow so she will refer my worries to him and give me a call back. 
 

Best wishes 

Jen X 

[Swishy]

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