counselling How do you deal with regrets?

[JenniH23]

I have previously posted about having blind spots and blurry vision post sah. I feel like my life has just come to a stand still and I don’t know where I go from here.

 

I find it difficult to go out due to where the blind spots are as I get disorientated..

 

I am waiting for neurology referral at rvi Newcastle but I guess they can only tell me what’s happened not provide a cure.  I am torturing myself over not going to hospital the night it happened as I didn’t know how serious it was.

 

All I can think about now is how different my recovery may have been if I’d been treated within 24 hrs.. Might I still have good vision? I’ve been reading that early treatment gives a better chance of a good recovery. This is eating me up inside. 

 

I am waiting for counselling but I feel I am the only one to blame for the situation I now find myself in. I also find it hard to sleep as my brain seems to tense up and stop me processing logical thoughts and when I think about something I could do before the vision loss it sends shock waves to wake me up. 

 

 I guess this is probably trauma. But I also worry it is permanent damage. I don’t have my first mri check up until February. I’m a total mess mentally and physically. Everyone keeps saying stay positive it’s early days at just under 4 months. But Im finding it so hard. 

[Macca]

Hi Jenni,

Please stop beating yourself up about this. It is not your fault.  Stressing yourself isn't the answer and won't help either your condition or your self belief.

The first thing to realise is that you can't turn the clock back, so there is no logical reason why you should think about the past because you can't influence it.

 

But you can influence the future. Can you see an optician - can you get them to refer you to a neuro-opthalmologist (amazed I can spell that!) before your February scan?  If it needs to be paid for privately if you can't afford it could you get one of your friends/relatives to crowd-fund it over the internet to try and get you a quicker result? If not just wait, maybe that's what your doctors want you to do - ask them.

 

You say you guess they can only tell you what's wrong not provide a cure - how do you know that - you don't know what's wrong yet?  It might not be related to SAH at all.

 

You are not to blame for the situation you are in.  What you need more than anything is to talk it through with someone close to you - relatives/best friend etc.

 

I think one of the best ways to tackle negative thoughts is to turn them on their heads.  You seem to be looking at everything in negative fashion which suggests to me that you are letting things bottle up inside you without bouncing those thoughts off on someone close to you.  You need to share your thoughts with someone.  What can you do?, where can you go? who can take you there?, who can you speak to? who can you see?, what can the hospital people do? what can the optical people do?

 

Stop torturing yourself, if there was no hope they wouldn't be sending you there, medical science is brilliant these days especially in the optical field.  There is plenty of hope. Maybe they are waiting to see if your condition settles of its own accord - once they diagnose it they will be in a better position to help you and come up with a solution.  The wait is probably to do more with supply and demand than anything untoward.  If it was urgent  they would have had you in by now.

 

One step at a time - every journey starts and ends with a single step. Today 's 'I want it now this minute' mentality has to take a time out here, repairing you takes time and it doesn't happen quickly I'm afraid.  That's just how it is, most of us have been down the road you are on now and have come out the other side. No it isn't easy , it definitely isn't but just as you sometimes run down the road or get there in a car or on a bus, walking gets you there just the same, but a little later.

 

Patience is a virtue, especially where SAH is concerned.  It is frustrating, surround yourself with good people, keep talking and share your thoughts-and when you get fed up of them, come on here and I and others will talk to you.

 

It is early days as the others say but it seems ages compared to other ailments that we overcome much quicker.  This is your brain however, a much more complicated beast than a cold or broken arm.  It needs time and things will get better I'm sure.

 

Keep posting and good luck.

[JenniH23]

Hi Macca.

 

When I was in hospital last week I had full ophthalmic assessment and they are now referring me direct to a neurosurgeon. My eyes and optic nerves are fine it’s damage within the brain. 

 

I talk to my partner and my mum and cry nearly every day which they are getting frustrated with as they say I must remain positive. I’ve just booked my first counselling session on 30th. I have dealt with a lot of tragedy in my life as I lost both my brother and my father. I was mentally strong after living through these traumatic times but this has literally crushed me. I am still grieving for my old life and what might have been.

 

Thank you for your support, every day is a challenge for me especially now at Christmas when my 6 yr old daughter is so excited and counting down the days but mummy is struggling to do things with her. It’s true what you say about taking time, patience does not come easy to me. And I’ve never once relaxed throughout my recovery first because I was in so much pain and now because I’m so distressed over the loss of my vision. I can’t remember what it’s like going to bed with happy thoughts. I just toss and turn all night. I feel like I’m in a constant nightmare. 

 

I hope time is a great healer both mentally and physically. 

 

Thank you, best wishes to you and your family for Christmas. 

[Skippy]

Hi Jenni

 

I can completely relate to the feelings of guilt that you have.  It took two hours to get me to the nearest hospital that could deal with me and that was after a brief journey to another hospital who sent me on.  

 

The guilt was the worst part for me - my daughter was 9 at the time and I couldn't do all the things that I would have normally done with and for her.  Also like you, patience is not my strong point!!  I'm also stubborn so these two things did not look good for my recovery.  However, as Macca said, I turned these attributes to my favour.  My impatience ensured that I always fought for my appointments and my stubbornness ensured that I didn't give up in getting them.  

 

I used the stubbornness to also see me through my recovery by flipping it and telling myself that I would get better, I would not let this beat me.  I had trouble with depth perception with my vision and could have sworn that I could have touched the grass in the front garden from my first floor bedroom window!!  

 

The best thing I did was get the counselling (I was diagnosed with PTSD) that I needed to get me through the feelings of guilt and anger.  Remember, you didn't ask for this and it most certainly isn't your fault.  There is absolutely nothing to say that getting to the hospital quicker would have made a difference.  Make sure you tell the counsellor about every emotion you feel - let them help and guide you through it.

[JenniH23]

Thank you. I am trying my hardest to let time heal.  But I am living in fear that this is it for the rest of my life. And that scares me as I was the glue that held everyone together and spent all my time running around doing errands for everyone else.

 

I used to come home from work and still not sit down until about 7.30 when my daughter went to bed.  Now I can’t even leave the house without feeling vulnerable. I just feel so useless and so sad. But the thing that hurts the most is the change in relationship with my daughter and partner as they are carrying on with their lives having fun and I am struggling to engage in it. 

 

Did your perception return to normal? I haven’t come across many people with sight issues on here. I think that’s why I’m struggling wondering why I’ve got loss of vision as well as the short term memory problems. But then everyone’s situation is different. 

 

Hope you have a lovely Christmas with your family. Xx

[Skippy]

Hi there

 

Yes, my vision is back to normal but it did take time.  

 

The first Christmas for me was 4 months after my SAH and I couldn't join in everything either, through pure exhaustion and severe depression.  My daughter was a little older than yours but her Dad explained to her (as she'd witnessed everything from the collapse to the waking half paralysed and screaming in pain) that although I was home, I was still very poorly and probably wouldn't remember much of what has happening.  To this day I still can't remember that first Christmas  - but I made sure that the ones after were extra special.

 

I held the glue together here too - I worked full time but was still head of childcare and all the parental duties - hubby worked long hours back then.  But I made them listen and understand that I needed help and couldn't do everything I used to.  Luckily I had my parents on hand and stayed with them for a while whilst hubby was at work.  He'd drop me off at the their home after taking our daughter to school and then they'd take me home when it was time to collect my daughter and stayed with til hubby was home.

 

You need to take time to heal - if you rush, you'll hinder your recovery.  Your family need to understand that you need to take time to heal and rest and you most certainly must listen to your body.  It can be a long road to recovery but you can make as many pit stops along the way as you like.