Make hay while the sun shines!
By neilhapgood, Jun 30 2015 07:32AM
I think it is really important at this stage to inject some perspective into things. The last thing I want is for BI sufferers or their family or friends to think there is some kind of quick fix to all this or that I am suggesting if you read this site and start meditating all will improve overnight.
As the name of this page suggests I really believe you have to make hay when the sun shines. Especially in the early days it is such an up and down journey and when you are feeling depressed, lost, confused and chaotic it takes all your energy just to get by day to day. So it is really important to use those spells when you are feeling calmer to work hard and really get to know your brain and give yourself as much peace as you can. As time goes on you will get better and better at it and you will find you are able to have a few hours, then half a day then whole days where you manage to maintain some peace and be able to just deal with, and react to, what is happening immediately around you. Equally I think it is important to manage the highs as much as the lows. I dislike the highs as they feel superficial and without foundation and prevents some kind of consistency which is what I really want. I work hard when I am high to bring myself down to a level and try and stop the irrational surges of positive emotion to nothing inparticular.
The bottom line is that this experience is bigger than all of us. The degree of control you have over it will wax and wane all the time so when you have an element of control that is the time to really try and go to work.
So I hope the site has been of some interest or use to you whether you are a BI sufferer or a friend or family member.
I am happy to say the comment function is working again, thanks for the emails in the meantime.
Please take the time to read some of the comments, you might find useful insight and advice from others, just click on 'comments' below to the left of the tweet button.
Also please leave a comment about the site if you have a chance, any feedback is very much appreciated.
To leave a comment just click on 'comments' below to the left of the tweet button then scroll down to the add a comment section.
kindest regards and all the best
Neil. What a crafted and well thought out blog . Congrats from one Sah survivor to another on making a great summary of navigating the emotional and lasting effects brought on through brain injury.
Thank you. Reading this made me feel positive. It has helped me feel like I understand my poor brain a little better. I don't feel so cross with it as I did. This is the first thing I have written since my sah in Oct 2014. I am grateful. You made me feel not so lonely.
congratulation neil this is a really good site. I found it very helpful, you explain what we feel really well and it will help my family to understand me better too, not sure if they will like being called normies though lol! I will be able to be calmer and more udnerstanding with myself now I understand more what is going on, it makes better sense to me now. Many thanks, James
found it really interesting, thanks for putting it together
I have read your article and very interesting in what was said and its like reading about yourself in a lot of it.
I'm just over 2 years post brain and still learning a lot about the new me and still thinking I can go back to the old me but know its not possible even when you have those really good days.
When I'm at work I just walk off and go to find somewhere quiet as it can become quite overwhelming with lots of people about and noise but like you say its hard to explain to others.
Its a true insight in what can be expected even though everybody has their own level of coping and its something that is never told to you when in the hospital or even after.
In fact my experience and I'm sure others as well nothing was told to me when discharged it was my lovely outpatient Dr who was not actually my surgeon who explained many things as best as he could and now my neurologist I see is good in explaining things and not flippant like some of the DR's are .
I also try to read different articles which interest me about the brain which is the most complex part of the human body as you know and my god it plays some weird tricks on you and I suppose its a thing we never noticed pre op but well aware of what it doe's and can do now and it's bloody scarey at times.
OOps just read back what I've written and it looks like I've not stopped for air with commas and full stops!
Hi, I found your article very insightful and not to disimilar from my experiences,
i had a brain haemorrhage over 9 years ago and still today compare the me before my brain injury to the present me, such as would I have done things differently, kind of a parallel life thing "would make for an interesting story!!!!!!
Think its important to focuss on the now! And be posative about the future xxx
Neil, I read through your posts a couple of days ago, and meant to comment, but then had an unusually busy spell at work.
Excellent work. (Yours, not mine, mine was a couple of days running from one end of a sprawling school site to the other, first-aiding kids with likely heat exhaustion, followed by yesterday, THE longest day of the school year, the Year 11 prom, started at 8am, got home just after midnight.)
I think that there is a lot of work to be done on the communication around brain injury, I'm currently awaiting a response from my health authority about my concerns around the way information was relayed to myself, and family about the aneurysm that ruptured on my Anterior Communicating Artery roughly five months ago.
I'll keep checking in on your site, and will also signpost other people there.
Thanks for your refreshing website on your recovery. Its so good to hear about other positive outcomes. My teenage daughter has PCS for about 10 months now. At times it is confusing and hard, but I know some people really have it worse. I'm hoping for a recovery soon, but it's been really tough. She got hit by a basketball in a freak accident in gym. I figure it cant take long as its only a first concussion, but here we are.... The last two weeks she seems to regress with mental fatigue, brain fog/heaviness, and sensitivity to noise. Anyhow, keep up the good work!
Hi Neil. Well done for taking such a proactive approach to your recovery. You've obviously done a lot of research and I'll bet the process of writing has been cathartic in itself. I think most of us agree that there is very limited information on recovery when discharged but I will say that there is the challenge of when is the best time to get any useful information? Looking back I think I initially read loads of stuff (from scouring the internet) which I categorically believed not to be of any relevance to me at the time. I've re read some of that info several times over now and it's meant more each time. With 4 years experience under my belt I now see things quite differently. In many ways I think you have to experience it before you can believe it rather than just be told 'this is how you will feel' and 'this is what you should do' (am I making sense?!).From today's perspective I can also see how much anxiety hampered my recovery -although I would swear at the time that I was most definitely NOT anxious! I will keep an eye out for developments with your project -not least because I'm from your neck of the woods. Have only skimmed through info on the site but will read more closely soon (brain fog) so apologies if I've repeated something you've already touched on
All the best
I have read through your site and blog with great interest and notated your paragraphs for my own research. I found what you had to say so identifiable especially in the foundations of sand and all a bit traumatic well in all your segments really. I find it really hard to explain how I feel sometimes and what I'm thinking and you have helped me with your words to get through that. Communicating and researching has really helped me with my ABI and the headway forum has been essential to my knowledge and long may it continue. Fantastic site, thank you for writing it. Nick