Hello

[Kermitisgreat]

I’m a bit nervous as this is my first post. I’ve been on a long journey with my brain trauma. Medically I am told everything is amazing. I survived a very aggressive tumour. However, now that the surviving part is (fingers crossed) in the rear view I am struggling with how different I am. I’m tired, distracted, short-tempered, forgetful and depressed. I’m surrounded by love and support, but I’m so lonely.

[Shreds]

First and foremost, you dont need to be nervous coming here. Your symptoms are not unusual and its all a case of finding balancing mechanisms and things which allow you to relax or get away from your immediate mind set.

Everyone is different.

Sitting back and chilling, doing some moderate or even strenous exercise that is within your limits, reading a book or a million and one other things that do keep your attention focussed.

Today I met someone I have long admired and bought their autobiography as I planned, at an in person book signing.

Not only was the ten minutes talking to her great as we had a shared history and she recalled an event and location from forty years ago without any prompting. When I got home and read the first twenty five pages of the very well written book without a break (I can be critical of poor writers or proof readers) Its quite an engaging read too that I want to read it cover to cover as soon as possible.

Such a day is a success and we should all consider such positives as good!

[Leaf100]

Hi Kermitisgreat

Welcome.

People here are generally generally helpful and non judgemental (we've all had enough of that from the outside world).

You've been through a lot, and things are different now. You will go through a grieving process - and you may not understand why, nor may the others around you - because hey, you survived, so you are 'supposed to' feel all happy clappy, right? Well, no. And maybe. You feel how you feel. And humans have all sorts of emotions at the same time or that may overlap. We're complicated.

I think it'd be pretty unusual to have a tumor treated and not have some sort of brain injury from it. The symptoms you described all fit.

First of all, give yourself time to get your feet back on the ground. Even anesthetic can take a good 6 months to completely work its way out, for lack of a better way of putting it. Yes, I know the docs give a much shorter time, but a lot of people who have been through it report longer times - and with brain things, it may even be longer than 6 months.

There are also support groups who can help you learn coping skills, such as pacing, which can help with symptoms and fatigue.

You may want to call Headway - the number is under the pin on the right - because they can give you resources etc of who you can see and what's available.

You may also need to see a neuropsychiatrist or neuro psychologist for testing and their may be medications that can help you.

Generally speaking though, since you are already fatigued, the thing to do is keep it as simple as possible - do as little as possible - let yourself rest. Yes, do do things that help improve your mood, if you are able and know what they are - fresh air can help if you don't know, or talk to your family doctor or pharmacist - sometimes they have ideas that apply to everyone.

You can also unload here or ask for advice here.

One thing is no one can really understand what you have been through - even if they went through it themselves their journey will still be different from yours. And brains, well, depending on what area got hurt etc, means the outfall can be quite different. Also know a lot of people are frustrated and easily irritated just after the injury, and after a year or two it gradually levels out - though some do kind of get stuck there. A medical person can have an educated guess about that if they know where the injury is.

Mostly, be kind and gentle with yourself, you've been through a lot.

Leaf

[skydivesurvivor]

We share all y symptoms!! Welcome to our imaginary world!! Unseen testers but very real people!! This is a life saving site in a very dark new world?!! People look at many of us and r unaware of our disability, we all teem together to support each other as we journey along a very difficult road!!- my I sound depressing!! Please visit whenever to rant y frustrations or whatever?! Someone will reply, we all view at strange hours!! Only suggestion I can make is SMILE to spite y frustrations?!! Take care and welcome!!

[Writeronstack]

Hello - welcome to the site.

1) please talk to Headway - with whatever remains after your physical recovery is in the rear view mirror. Your residual symptoms are very familiar.

You are in the right place - this for me was a real life saver. Here is what I wrote to Headway this morning on another thread - bears repeating , because it applies to EVERY new person.

1) I can ask anything I want, however silly it sounds - for example, I asked what they mean when I am asked to 'rest'. Never would I have worked out that this means, curtains drawn, eyes shut, lying down, resting.... I was just putting up my feet with a cup of tea, in the middle of the day. Only people with experience of this recovery can tell me what works

2) I can offer help to others - and that is SO useful, because it feels like I did something useful that day. Helplessness is really bad for all of us.

3) I come here to this platform and realise that I am not alone - that is really priceless.

4) That others have the same experience on this platform is VALIDATION for my family, that this (whatever it is that I said happened) actually happens to other people too. So it feeds back into the family dynamic.

5) Some people have developed a sense of humour around their circumstances - and when they write something it really lightens the load.

SO - Say whatever you need to - ask whatever comes into your mind. My most interesting conversation was with someone who reported seeing a fully formed beautiful green frog on the pillow next to hers. . . . that's something to work the imagination right? I replied, and read the thread. Actually helped with a visual problem I was having at the same time. Now being treated, and improving dramatically.

And bouts of feeling low? Yep. All of us have experience of that, and from time to time write about it.

Welcome to the fold. Not only are we sorry to hear what we are going through - we are also on a variant of exactly that journey. Close your eyes. Now, imagine a held-out hand. Grab hold of it. That hand was mine, and his and hers and hers, and his - and everyones.

[cat3]

Hi K. It's so natural to feel lonely among loved ones. We know they see us as they always have and, after 20 years, the trauma of your illness will be something they're happy to leave in the past.

We're not who we were, but no one can see through the old shell at who we are now, so it can be isolating . It's no one's fault of course ; loved ones/friends are just so relieved we're still with them and cannot grasp what's inside our heads or the struggle of simply getting through a day

I call in here most days. It's the place to connect with others who're all too aware of the fatigue, forgetfulness, emotional instability and/or other issues. You've found folk who truly get, first hand, what a different place we inhabit with brain injury.

I hope some recognition and reassurance will help you feel less alone m'love... Cat, x

[JPBeeves]

hello , this unfortunately is your new normal for you, however it is a steep learning curve and process for you.

It is fantastic and great you have been able to put a post together on this. Website, that is a great achievement for you and is a massive first step. You should be proud of yourself of this, the first step is always the hardest part. You have admitted to your self of your issues/problems. Welcome to your new journey, it will be long and difficult, but you will get to where you will feel comfortable with yourself.

You always have choices and are in control of your life and always have been and always will be.

From what you have admitted in your post , these are the new normal for you ,which can be dealt with with help from those around you.

Never ever feel pressured into thinking or pressured into doing anything you are not comfortable with.

Your GP and hospital are always your first port of call , as they have a duty of care for you.