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Last Friday marked six months since I had a Grade 1 NASAH in the frontal lobe with modified Fisher Scale measuring volume and spread showing Grade 4 volume and spread, so I thought I would follow up my original introduction with these notes that I sent to my children who don't live nearby.

 

Where I’m at now …

Hearing, taste, vision, bowel, bladder and gut have all improved significantly. My vision was one that was affected badly and I didn’t realise how stressful it was until it improved, gut too was pretty awful and still is at times. I’m highly sensitive to sound/noise, and visuals. A mistake I’ve made in recovery is thinking that where there has been significant time between symptoms being present, it indicates that part of my brain has healed. But no, they come back out of the blue, but so far with decreased intensity.

 

Another mistake I made was in thinking that I could work. I resisted giving up what I knew deep down had to be done, but in the end I closed down my business officially as at June 30. 

The other thing I misjudged was the overall affect of the bleed. Because I was and am repeatedly told how lucky I am to have only suffered a Grade 1 NASAH, I thought my recovery would be easier and quicker. Mmmm ....

 

Emotional Lability/Emotions in General …

In the early days all emotions blurred into one big ball and I couldn’t work out what I was dealing with or how to respond.  Now there is clarity between brain bleed stuff and other stuff and I can respond appropriately to that.

 

Headache/Neck Ache …

Not all the time now … there is a pattern, as the brain gets tired, the headache/neck ache increases. I do get odd days where I have very intense head, neck, and face pain which nothing will shift which is very frightening, but it’s on to the bed and stay there till it passes .

 

Memory and Concentration …

Still have trouble finding find the right words, and I muddle things up having to concentrate hard. My memory is still rubbish and added to that has come the realisation that I experience Confabulation. Realisation hit and distressed me greatly as it happened in the same week as separate unrelated but scary cooking and medication incidents. Sent me down in to a dark and lonely space for a bit.

 

When I looked back I recognised other events that were probably confabulation, where things I thought I’d done or had happened were possibly not so. The problem is, unless tested, I don’t know I’m having them. It decimates confidence. (Confabulation in brain bleeds seem to be peculiar to frontal lobe injury)?

 

Fatigue/Severe tiredness … these are two separate experiences for me.

I can get up in the morning, make my bed, get dressed, put some washing on and be standing washing dishes quite comfortably when all of a sudden headache and heart rate arc up, my legs go and I feel very unwell all over. It happens in the blink of an eye as though someone has flicked a switch and it’s very frightening.  I manage it better now that I’ve come to know that it's brain fatigue. 

 

All I can do then is get on the bed, close my eyes, rest, so that with the reduction of stimuli the brain can cope again. I’ve seen it referred to somewhere on here as shutdown which is exactly what the brain seems to do, and by resting it reboots. The severe tiredness isn’t all the time but I get odd days where it takes all I know to get off the bed.  I do notice though that problems with postural difficulties have improved a lot. Any exertion such as trying too pull weeds or push a comforter into a tight plastic bag drops me on my butt. Brain's no ready for that yet.

 

Riding the SAH roller-coaster is challenging isn't it, and I've reached the stage of recovery where I'm told I look well and I sound well which seems to imply I must be well. If only they knew , but in all fairness I wouldn't have known either....

 

To anyone out there just starting this journey, my best wishes, recovery is slow and sometimes bewildering, but it does happen so hang in there.

Thanks for listening

Kind regards

Majella

 

 

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Majella, you seem to have a really good handle on this, as this is well written. I expect anyone that has experienced a bleed would agree. As for the question of confabulation, mine was in or near the brain stem and I can tell you I had plenty of confabulation. If I actually understand what that is. 


Six months is’t long for our ailments. I appreciate your effort to share your progress. As you are quite good at it I encourage you to continue. I’m certain there are those out there that can benefit from your accounts of recovery.  Take care and be kind to yourself. I’m looking forward to hearing more from you. 

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Thank-you CaseyR for your encouraging words. Writing a variety of factual material used to be the stuff of my work, so it makes it a bit easier. 

 

The bonus that has come with doing these quarterly reports for my sons, is that it allows me to see where I've made progress by reflecting on each area.

 

It's really helpful when I hit those patches where I don't think I'm doing so well. 

Kind regards

Majella

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Hello Majella and thank you for giving such a comprehensive update six months after your NASAH.

 

As Casey mentions, your post will be most helpful for others in their early recovery journeys.

Again, six months is still very early in `recovery` terms.

 

The physical and emotional aspects only become apparent in these early post bleed weeks and months. Given time.... and the acceptance that trying too hard to return to `normal`can be detrimental to progress  ...... many of the issues you mention do indeed show varying degrees of improvement.

 

Your decision to give up your work has already been made.  Is this something that can be looked at again when you are in a better position to judge how your body and mind will cope. Many survivors only begin to think about returning to work after 3-6 months post bleed.

 

It is good that in making records as you have done, you can look back and see how things have changed. It is good that you are now listening to the physical signs from your body and brain and realising that rest and patience are needed. Pushing the boundaries can do more harm than good at times. However as we keep commenting .... everyone is different and choosing the advice that suits you is important.  

 

Fatigue can be so debiliting and so misunderstood by those around you. You find yourself in a battle that the outside world is oblivious to. Again it is so mportant that those you really care about are helped to understand the significance of life with brain trauma.

 

So thanks for highlighting the challenges you are facing. 

You finish by saying `you look well so you must be well`.  It is one of the toughest misconceptions.

Concentrate on the things and people that matter to you. Time does heal and for most, progress is continuous. Coping with the pace of healing and the issues that leave you different from the `old you` are not easy but you will emerge from this and be your own person.

I do hope you keep coming back and are able to share these improvements with us. 

 

 

Subs

 

 

 

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Hello Subs, and thank-you so much for taking the time to respond.

The symptoms emerge over time don't they, bit like peeling the layers of an onion.

 

In terms of my work, it required 100% accuracy, and that combined with my age and the fact that I had broken my arm/shoulder 14 months previous to the bleed all contributed to my decision.  When I've found a new norm, I hope to evaluate my skills and apply them to some other sort of work.

 

I'm a doer, and not working/using my brain really challenges me. I've discovered that doing easy crosswords takes me out of myself, and by doing the easy ones I set myself up for success without having to concentrate too hard.

 

Impatience, and dare I say it, boredom are my arch enemies!

Hope the sun is shining in Scotland, unlike the grey drizzly morning here in south eastern Australia.

Kind regards

Majella

 

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