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Headway
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An emotional rollercoaster and I want to get off!

Hi everyone,

Its taken me quite a while to get up the guts to write this first post and share my thoughts as I'm usually a "suck it up and get on with it" kind of person but am struggling to do this right now for the first time in my life.

I'm 38 and recently (well 7 weeks ago) suffered a SAH out of the blue whilst exercising at the gym. It was horrendously stressful couple of hours with the gym staff, paramedics and doctors all believing I had just over done it exercising. Meanwhile, mostly conscious but unable to speak I knew exactly what was happening to me as I'd seen my mum die of the same thing 8 years ago.

Eventually they worked it out and I was lucky enough to be able to have my anuersym coiled but unlucky enough to have developed a blood clot in my main leg artery where they put the catheter in so on top of the brain stuff I'm currently unable to walk far and not able to retur to work.

In general my recovery has been fairly smooth but I've noticed I'm unable to keep my emotions in check, I'm crying at the drop of a hat and seem to be unable to make a decision on the simplest of things (even Christmas presents!) I have loads of family and friends that are trying to help but I can't help feeling so alone, like none of them can really understand what I'm going through.

So I thought I'd reach out to all of you, did you experience a similar loneliness and does it get better as time goes by? I hope so but don't want to wish my life away at the same time.....

12 Replies
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Welcome. 7 weeks is a very short time in brain injury terms. Your brain has had major trauma and needs time to rest and recover. Be kind to yourself, rest as much as you can and let others help you. It will get better!

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I too had a sah 2 years ago which was coiled and added complications of tersons syndrome from the pressure and blood deposits so came out of my coma blind in both eyes, have now had 2 eye ops to clear the blood off retina but they have both been damaged so only partially sighted. I don't know if it's the enormity and far reaching effects of sah but like you I don't think I understood or could take on board it's enormity. It is quite a journey and it will take time. I too was like you very independent, capable , and balanced. My brain shut down and I could not cry for probably a year now I'm a mix of emotions I've had cat and emdr counselling for a year for post traumatic stress which is disabling in its self in life. I have just plucked up courage to go to my local Headway group once per month and find it helps to be with like minded people and talk to those going through the same. I too cannot walk very well and just keep my head down existing as gently and quietly as possible to get through every day in whatever way my body tells me. I suffer a great deal of exhaustion too which affects everything from general functionality, brain issues of word searching, slurred speech etc. I have had little help, or support and no family, so take advantage of those close to you offering you are a patient recovering, acceptance to what has happened and it's effects is hard to do Im still trying to do that too. Im very up and down and so many negative changes Im having to get used to this new person but I grieve for the old one too. I don't understand myself, thoughts or reactions any more but I'm brave, stoic, and determined which keeps me fighting but it is a journey for sure that we all have to travel. Be kind to yourself, try and accept the process of recovery, accept help and support, and understand this has been a life changing event, but life is what you still have even though in a changed form. Keep living it. I wish you all the best on your journey. X

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I had an SAH 8 years ago and it really is quite the emtional rolelecoaster! I put a lot of my learning and experience into a website that might be of interest to you, braininjuryftp.com

all the best, things do improve but it can take time

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Hi yeah it's hard. I had a stroke with no previous symptoms until I collapsed.

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This really is early days, you are doing so well but give yourself a break. 7 weeks is such little time, this is going to take a long while to get over, take baby steps. I had to learn this, almost six months in to my husbands SAH - We take it a day at a time to be honest.

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Nicococola

Well done,for replying ,every hope and wishes for a better future.

Don't stress about christmas,it'll come and go as normal.

STRESS is adverse to health!!!!

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nicococola a brain injury really messes with our emotions, so what youre feeling is natural for us,youre experiencing life as the new you.

as far as other people are concerned, they cant understand because they havent had a brain injury.

the only thing you can say to people is .....................disability isnt always physical.

welcome to the family, may i suggest you find your local headway group where youll meet people who really understand because like us they have a brain injury.

merry christmas

steve

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Hello Nicococola and welcome to the group.

My SAH was February 2015, drained and coiled, and they found another two aneurysms in there, while they were rooting about fixing the ruptured one, the second largest was electively coiled in 2016, the third is just sitting there lurking, in a dodgy location for surgery.

Physically, you're processing a major trauma, with the added issue of the mobility in your leg to contend with, nobody would expect an Olympic athlete to be back on the tracks 7 weeks after breaking a bone, and brains take considerably more healing than bones do.

Emotionally, you're processing so much more, especially knowing that you lost your Mum to the same thing. (My ex's Mum died from a brain haemorrhage when he was 11, so my SAH was doubly traumatic for him.) Add in the usual pressures of the 'Festive Season', and it's natural that you're feeling overwhelmed.

Most of us will identify with the mood swings, I was an unholy horror for months, because I was FURIOUS at everything all of the time, and angry at myself for not being 'better.' 'Little' things, that used to be effortless and simple became major events, and I resented the fact that I was suddenly less-me. In a previous job, I was a Learning Mentor for challenging adolescents, and I ended up using a lot of the deflect/distract strategies I used to teach the children on myself. I over-compensated massively, to stop other people doing things 'for' me, because I'm a resistant ratbag, and didn't want to appear weak/needy, that was my mistake.

Those around you need to understand that your brain is still healing, that there's no fixed time-line on when you'll be 'all better', and that you'll have good days and bad ones- I think Headway might be able to provide leaflets or booklets to explain that. You need to allow your brain to heal, plenty of fluids, plenty of rest, medication on schedule, rather than trying to 'push through', enough of the right food, and be kind to yourself. (Yes, if someone had said that to me 7 weeks in, I would have wanted to poke them in the eye.)

As you continue to heal, you'll find tactics and strategies to work around difficulties, we all do it, it's a bit of an evolution-process, as we accept and absorb the 'new' differences we find along the way. Brain injury isn't linear, nobody can plot your recovery on a graph, because we all heal differently. I handled my recovery badly, I spent so much time telling everyone I was 'Fine!', to stop them pestering me, that everyone assumed I'd be capable of everything I did before, and then some. 'Better', and 'back to normal' are vague concepts with brain injuries, some days, 'good enough' has to be enough, and then we start again with a clean slate the next day.

If you're a 'talker', you can phone Headway for advice/support, I'm not a talker, but I have emailed them a few times, they're really helpful. It does become easier to manage over time. Hang on in there, and don't worry about making decisions about Christmas presents, I've just realised that I've bought ANOTHER pineapple to put in my son's Yule-boxes. "2017, the Christmas of two pineapples."

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Thanks everyone for your kind words and encouragement, it's reassuring to know there are people out there that understand but also humbling to see that people have had a harder time of it than me.

I know 7 weeks isn't long in the scheme of things but before this I've probably only had 7 days off work sick in 15 years so this is all very odd for me. I'm just desperate to get back to some normality and to be honest need to to pay my mortgage. I'll try and take on all your advice about not worrying anout the little things at least though, I guess this I've got a good enough excuse this Christmas!

I think I'll phone headway later too and get some of those leaflets, Thanks again.

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You made me chuckle with '7 days off in 15 years', that was part of the reason I was back at my desk 6 weeks after the haemorrhage, I was NEVER off sick, and didn't want to let my teams down.

You may already have checked, but do you have any 'critical illness cover' on your mortgage, or any other policies? I didn't, but it's worth looking into.

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Welcome. I have problems with my moods. I am angry this tbi happened to me. I will never work again. I use to be a specialist senior cancer nurse. I find it very frustrating just being at home. I use this site to communicate with people going through the same. People who do not have this type of injury cannot understand our problems.

Regards

Mufc

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I have an aneurysm on 28th December 2016. I have aphasia and little right hand and foot. I had a miserable time and lonely. But, we will be OK. We can make friends on this website .... we will happen here for you xxxx

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