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My NASAH happened February 22nd. Thankfully my husband was home, we got good care, and I have no major physical deficits.I was in the hospital for 9 days and I believed that once the blood cleared from the CSF that I would be back to normal. Once I was home for a few days, I was getting very depressed and frustrated about the exhaustion and headaches because I thought I should be better.

 

Thankfully I found this site and have started to form more realistic expectations for what may be a long recovery. Some days I am very sad about what happened and about my lack of energy and about my lack of ability to concentrate for very long. Some days I fell almost normal, but these are usually followed by a tired day. The roller-coaster of physical and emotional experiences is really hard.

 

My husband is absolutely wonderful and I worry about the toll this is taking on him and on our relationship - I'm just still really shaken by the whole thing. I've been reading the site for the past few days and thought I would post... I know you're going to tell me that it is early days and I need to give myself more time, but I am finding it very difficult to slow down and manage the expectations I have had for myself for so long...but I'm trying.

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Hi Keyo

 

Welcome to the site and to the family.

 

I can completely identify with what you are saying.  I hated not being able to do what I wanted to do, when I wanted to do it.  However, I soon realised that what I wanted and what my body and brain needed were two very different things.  The adjustment is hard to begin with and I also found it very frustrating.  My expectations were completely blown out of the water after my SAH.  I know it isn't easy but you have to adjust those expectations and do everything within your limits - such as they are right now.

 

A good idea is to keep a diary of what you have been able to do and for how long each day - you'll look back at this in the months to come and realise that you have actually come further along in your recovery than you think you have.  I set myself new limits each time the previous limit was met comfortably - I soon learned that if I pushed myself to hard to quickly that I ended up taking steps backwards and the frustration would begin all over again.

 

The hardest part is accepting the "new" you, once you're able to do this the frustration abates and things become more bearable.  You're right, you are very early on in your recovery and it took me a good year to stop needing to sleep during the day. 

 

Don't beat yourself up about not being able to do all that you could before - just because you can't physically see the injury, it doesn't mean it's not there.  If you had broken your leg, you have had it in a cast for 6 weeks or more and then the rehabilitation after that to build it's strength back up.  Your brain never stops working, so doesn't get the chance to completely rest.

 

Right now, listen to what your body is telling you, rest/sleep when you can and make sure you drink plenty of water - it helps with brain function and certainly helped keep my headaches at bay - I still drink at least 2litres a day 15 years later.

 

I'm sure that your husband is just as shaken as you are and although you may feel it's putting a strain on your relationship, you need to tell him what you have told us.  They can never understand how it feels but it will go some way to help him understand how it has made you feel.

 

Take care my lovely, and please keep us updated xxx

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Hi Keyo,

 

I hear you...I was shaken too, it takes time to take it all in.  I had some sad but struggled more with reliving the experience.  I did do some mental health therapy, I learned to relax, sounds crazy right haha...but yes I needed to Breathe and also do some visualization, which I now find very relaxing.  

 

So Keyo, what I guess I am trying to say is that we all have our own path to find our way back.  Our brains follow I think, but time is key.  

 

Sending you well wishes as you continue to heal.

xx 

Jean

 

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Hello Keyo,

 

I'm almost three months in, and while progress has been slower than I'd like it to be, when I think back to where I was in January, I realize that progress is happening. This is a weird condition--extending the broken leg comparison, you know that you can't put weight on a broken leg because it tells you right away with a sharp pain.

 

With NASAH, though, I never know what caused any particular headache that I have since the feedback loop isn't so immediate. Just rest assured that things do improve. In fits and starts and what seem like setbacks, but they will improve.

 

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  • 3 weeks later...

Yeah, it’s hard going. We’re the lucky ones though and I know you don’t feel lucky at the moment but with time you will. Make sure you talk to someone about how you are feeling, you’re going to need to get it out and decompress. We’re all here for you to help as well. 
 

Dave

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