Majella Posted July 25, 2020 Share Posted July 25, 2020 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 6 Quote Link to comment Share on other sites More sharing options...
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