I'm new - how to adjust to SAH recovery?

[Aurelian1]

New joiner here after I had a subarachnoid haemorrhage out of nowhere very recently in May. I spent over a week in hospital unable to have visitors due to coronavirus. I had no risk factors whatsoever and no warning signs - I am 27 and was meant to be climbing Mont Blanc next month. I am so very lucky to have an excellent prognosis for recovery, but I am still adjusting to what happened and the shock of going through a near-death experience alone in hospital.

What I would love to know is your thoughts on how to adjust to recovery. What helps you to not push yourself too hard, how you dealt with fatigue and pain, how to adjust to not having the same physical capacity as before. I tend to be quite driven to care for others - I was distraught in hospital by not being able to really help the other patients around me. It's wonderful but really hard to have people so concerned about me at the moment and I'm finding it difficult not to try to hide any flare-up of pain in case of worrying people.

I hope this makes sense. I'm really glad to have found this community and hope that you are all staying safe.

[sospan]

Hi,

There are a few suggestions but there are two main things that seem to benefit everybody.

Routine. It may seem the most boring thing in the world by plan your day out in blocks of doing things, resting, eating etc. Get up at the same time and go to sleep at the same time each day. Whilst it does allow you to pace yourself. It also allows you to measure progress. So if even if you do things like cleaning the house for an hour and then resting for a half hour. Over time you will see your activity and rest times changing.

Diet. As a climber your probably very familiar with the need to fuel your body. It is just as important now. So it is no more junk food, coffee, fatty foods and more veg, fruit and nuts etc.

And of course go easy on the exercise and don't push yourself too much - time is the best friend for all types of head injury

[cat3]

Hi Aurelian and welcome. My SAH was in Dec 2011 and the eventual realisation that I'd survived a life threatening event was a bizarre concept to get my head around. But I was in awe and SO thankful for the expertise and care of everyone during that surreal period.

Mine was also spontaneous with no warning signs apart from corruption of taste and smell, which my GP dismissed as trivial despite it being a common pre-curser to acquired brain injury.

I was over confident on discharge, assuming 2 months hospitalisation + rehab had got me back on my feet and ready for normality. I was anxious to prove to my son & daughter that I'd be fine but I soon came unstuck.

After insisting on picking up where I'd left off I was shocked when walking off to the shops alone to find my balance (in the big outside world) was so poor, and that a 30 minute round trip had completely wiped me out.

So you're embarking on a massive physical, mental and emotional challenge m'love, with discoveries of impairments coming from all directions. I used to walk for miles in hilly areas and never felt tired. I was really dextrous at carpentry and construction work but also at sewing and other handicrafts.

It took around 2 years for me to let go of my previous lifestyle and adapt to a less demanding one. But 8+ years on, coping strategies and ways over/around obstacles have enabled a good quality of life with satisfying projects and achievements.

Immediate after effects were constant fatigue, emotional instability, poor short-term memory & word recall, balance issues and loss of dexterity. I progressed gradually by pushing myself mentally & physically but soon learned that respecting one's boundaries is vital in avoiding burnout (which can last for days and cause frustrating setbacks).

Keep yourself extra-hydrated Aurelian with at least 2 litres of water daily ; your brain needs it for continued protection & functioning. And I'm sure you're aware of the value of healthy eating and exercise. But, after a brain injury, rest and adequate sleep need to be an integral part of your daily regime.

Any questions......just ask ! Take care, Cat x

[magdolna]

My advice after I had a similar SAH experience at 53 in 2016, is to see how it goes with the healing journey for a year or more. BI is a long game it seems to me. Do what ever you can to help yourself physically or mentally or whatever. Neuro physio is key for stoke patients in first 2 years. I know that now after finding a neuro physio where I live near the Cairngorms. I naively thought I could put BI behind me. Impossible I found out. Got to learn to live with it and keep smiling. I have been kept alive for a reason. Almost 4 years on, I am in a good place, which I NEVER thought would happen.