Hey folks, I haven't checked in for ages, which is very silly of me cos of course you're all amazing.
When I last posted, I think I was still in a stage of huge depression over everything I had lost. The forum bots made me update my profile when I logged in today, and my old profile did indeed talk about depression a lot.
Yeah, when I woke from my encephalitis coma a year and a half ago, I was very depressed. I was very acutely aware of how much of my former self I had lost, all the parts that mattered to me the most. But then I listened to a podcast on brain injury that my friend recommended, and it shared something very important with me - a very important tool to starting your recovery is to realise that you're not necessarily depressed, you're probably in mourning. The person who you used to be died as a result of your accident/illness, so mourn that person. Give yourself the time and space you need to feel the loss, feel the pain, and move slowly on with discovering who you are now.
It might be an added bonus for me that my memory centres are permanently damaged. So while I could acutely remember who I used to be a year ago, I don't really remember that any more. I only remember who I am now. I still haven't figured out how to spend the rest of my days apart from sitting on the sofa watching TV. Not a useful healing method, or useful for anything much. I'm starting to look into outdoor nature work, and will hopefully get that going soon. But not too much at once, I'll be taking any changes slowly. One thing I'm definitely learning is that I have very limited thinking power now, so any work that needs thinking or learning will wipe me out for a couple of days afterwards. Since Purple v1 was a big thinker (PhD and everything!), going forward without too much thinking as Purple v2 is a whole new adventure.
OK, I'm blathering now, so I'll sign off. But will try to come back and talk to you all again soon.
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PurpleOverlord
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It's good you've recognized your dark period as natural grieving for your past life and treasured memories. It means you can begin acknowledging that your second life, though very different, will have areas of fulfillment which never occurred to you before.
And you'll have heard what early days it is still for you Purple ; improvements can continue for years.
It's been over a decade since folk described me as a 'dynamic' worker or 'on the ball' intellectually. Nowadays I'm still creative and inwardly😕intelligent, but no longer have the stamina to take on big projects, and my dodgy word-recall means intellectual exchanges are really tough going.
But, with no time limit or pressure, this forum is somewhere I can express myself freely, even taking long breaks mid-sentence if needed..
I've a painful knee injury at present, but normally I'd be walking by the river or through the park on this sunny day. Either that or lawn-mowing, tending plants etc. ...(& collapsing for a day or so).
I guess nature, even in winter, is my passion now (I have visiting foxes every evening). And family, together with tv/Netflix drama documentaries and travelling the world on Google streetview (Avenue of the Baobab trees in Madagascar this morning)....keeps the blues away.
Don't leave it so long next time m'love ....😑 Cat, x
Thanks Cat. Sounds like you've found the same happy/safe places as me. Nature has always been where my heart finds peace, and definitely more so now then ever. But the TV is my other place to hide - my brain just switches off and I go to wherever the drama is happening. I love your Google streetview idea too, I'll give that a try if I remember (I'll have forgotten this post 5 mins after I write it, hooray for broken memory!).
...well if you do remember Purple, you can go anywhere in the world that a vehicle can. I always wanted to visit Machu Picchu (fat chance) which is obviously only accessible on foot, but at least I got to 'stand' on the top last night, with a good look around at the old abandoned monastery and the incredible view !
Brain injury can be a good excuse for getting away with eccentric, quirky stuff...
Good on u!! U have a trying journey still ahead of u. U have the chance to adapt the new you!! She’d the worse qualities, hone the better ones to build a nicer vet?! You!! You will find new friends2who recognise the new you!! The toughest thing for family old friends to accept is the you they see before them is gone?! Their loss of they can’t accept it!! Look at the changes you’ve had to adapt to?!! Their are many challenges atill ahead but y come so far!! Proved y have it still upstairs to deal with them! A very strong person who can accept the struggles, both good & bed!! Welcome back to the survivors clan!!! We’ve missed you, please let us know how y progress. Will give us encouragement to continue on our own journey? If we support each other wa will survive!! A good aid I find is to smile to spite the injury?!!!!
Smiling. Yes, giving that a try - really useful thing to do.
There's a book called Physical Intelligence. They talk about mental health being related to physical activities we undertake - postures, facial expressions and so on. There's science behind your strategy Skydivesurvivor....
On the one hand, I've never had many friends anyway. I'm not a social beast and don't hang out with people for no real reason. My few friends are people I've found an important bond with. Luckily they are carrying on being real friends and standing by me with hugs and long walks and cookies as I go. Family.... well, my mum keeps telling me all the research she's been reading about how I'll recover soon, but I guess that's what she needs to believe! Smiling is a good plan. My therapist has been telling me all sorts of useful methods of breathing or just covering your ears/eyes and humming when it gets too much. She says these tricks help your nerves to cope. I haven't tried the humming yet, she only told me that one on Thursday so haven't had a chance yet. But a simple smile sounds like a great plan too.
Really interesting to hear about having a mourn period. At 2 years in have felt bit lost so maybe something to think on.
Definitely good to go for small steps. I love taking photos when I am out for a short walk now. Makes me appreciate nature and a useful reminder of where I have been. Good luck to you in finding a new joy in things you do.
Small steps are definitely the way to go. And long walks out in beautiful nature. I've got a dog now, and taking him out for walks has been amazing. Taking photos of the beautiful nature is a great idea too, I might give it a try.
I found it so interesting that you described what you have been going through as a grieving process. My partner has described my current condition as one of a grief about the loss of what I have been and how I was able to perform tirelessly. I would lead by example and help out with extra when needed. But now I cannot even get through a day without a nap! I am also only 6 months along my journey and it is an unknown to me if this will change so I fluctuate between trying to accept it and resisting it by hoping it will change. It sounds like you have allowed sufficient time to pass that you are able to accept your new you and your current self needs to work out what makes it happy and fulfilled. Once you do that you will find that it trumps watching TV! Good luck finding what brings you joy. It sounds a much nicer part of your journey lays ahead.
That rings bells for me too. The outdoors is a distinct possibility. I'm not sure which way to turn now. Two years next April.. Still trying to find out what I can do without collapsing in a heap shortly after a day or so. Maybe have to attempt shorter projects. Can't keep everything in mind these days.
Watching a long political drama - and finding that I cannot follow the plot some of the time, and the dialogue is too fast in places.. and somehow it seems to matter more - if the plot is dark, or if there's anything malicious or sad. . . It's as if it is real. Where are my "reality filters"? I guess they belonged to the old self.
Mourning my old self.... becoming someone new and different.
There's a turning point of an idea. So glad you listened to that podcast. Even gladder you chose to write this post.
And Cat - as ever, constructive and kind. Thank you.
It’s been five years since my op and I still struggle to learn about and manage my fatigue. Even when I know what I need to do, and I know that pacing helps massively, my brain struggles to give me the willpower to do it, especially when I’m tired🙄.
I know it’s so hard to take a break when you have energy, because you feel ‘almost’ normal, but taking regular breaks, where you let your brain rest, does work.
Sending my love and positive energy to you all. You’re all still amazing. xx
Thanks TheiaR - today has been an example of bad pacing. Had to get up early for something, and then managed to get two appointments one after another.... Could not park, and did not recall the time of the second one, and was blown off by the dentist. Says that if I miss an appointment (called when I had missed by 15 minutes) - it was too late, and I would get a letter to say that I can't be on his list. So will need a new dentist now.
I did take a short break, but I think I needed more than one today. Just did not manage what I needed to do. Feel a bit rotten.
But maybe I needed a new dentist anyway. The parking around this one is really aweful with no dedicated spaces, and a longer walk (today, in the rain) from a supermarket car park. I was thinkng about changing. Does having a card which says I have a head injury make a difference, or does a dentist avoid you even more if you show a card like that?
Coincidentally, Headway has published a document about changed identity that you may find of interest. I have shared it via Facebook in the vain hope that friends and family might read it. The changes affecting me did not impact well on my marriage which is in peril. I have, in effect, been abandoned by nearly everyone. Good luck.
Thanks Skulls, that sounds like a brilliant thing to read. I don't have much brain space for reading at the moment, but I'll see how far I get and take it in whatever size chunks I need to.
And I thought I was the only one who thought that way!
Some years back, I suffered a complete mental breakdown - after which I was no longer able to read printed text along with a notable reduction in problem solving capacity and also my ambidextrous abilities which I had been gifted with at birth. Like you now, I had to learn how to ‘grow’ a new me. I noticed I had different outlooks on a variety of subjects whilst also undergoing a change in interests, swapping out old for new. After some years, I had finally started to ‘live’ with my new self only to be told I required extensive Open Heart Surgery.
The relevance of that information is that as a result of the operation I suffered various life changing complications including Stroke, Sepsis, HSV and others. The upshot being I spent several weeks in a coma and some more on exiting the coma before I was allowed home.
I was told to allow for changes in behaviour etc whilst I recovered from those complications, but 3 years on - it is clear that V2 of me had gone and I am now having to learn to live and grow a V3 of me. This time though, I do not want to continue with V3 - why? Well, I suffer issues that impact my balance meaning I am sometimes dependent on a wheelchair or sticks to get around. I am unable to leave home without an appropriate adult. Memory is random (asked my wife if she thought I would enjoy watching a film one morning only to be told I had enjoyed it the previous night!) Cognition is something I enjoy when my brain is up for it - it’s not unheard of for me to put milk under the sink and bleach in the fridge! Conversations or engaging with this post can easily leave fatigued after a while, we’ve got it up to an hour now before I start to fade. I have no interests to enjoy, because I can’t remember how to undertake them, or even why I was interested!
I wake up, exist for the day and then go back to bed. I say ‘exist’ because I rarely do anything of my choosing and I only go out when I cannot be left alone at home. I can watch the same film or TV program every day for a week, and not remember that I’ve watched it. I can no longer drive a car, work or be trusted to mind the grand children. Learning is pretty much a no go activity and current events are as current as when I watched about them on the news.
The mental health team apparently ask me if I ever feel like harming myself in some way, and apparently my response is often along the line so of “how would I know? Do I have the ability to think through such an action and if it required me to be out of the house - how would I get there?” The iPad I am writing on is the last vestige of a once serious interest in computing.
I exist for the benefit of my wife, yes that sounds cold - but that’s how I think nowadays, and like you, I am stuck with this version of me, but I do not like it and often wish I had not survived the operation.
I wish you all the best in learning to live with your new self, and I hope that one day I may learn to accept the V3 of me in the same way you are accepting your V2.
Oh, Brand, I hear you. How awful to have to go through it all twice. Like you, I used the term 'exist' rather than 'live' when I first came out of my coma. I'm only alive right now because my elder child had A levels that I didn't want to disrupt. Thankfully my existence is tolerable now, but I wouldn't call it a life yet. I've had encephalitis twice now, the first time was thankfully fairly minor and I recovered fully. This second time has been so awful that I've made it very clear to everyone I'm not to be resuscitated should it hit me again.
I wish I could give you a big hug. Having so little power and control over your own existence is terrible.
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