How can you know you are ok?: It has been a while... - Headway

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How can you know you are ok?

Iwona084 profile image
29 Replies

It has been a while since I wrote. There were so any bad news the recent weeks, that I dont even know where to start. It is 1 year and 7 months after my surgery for broken hemorhage. I thought I'd be much better but again, Im totally stressed over any little thing. The numbess in my body increased and Im feeling like shaking inside. The doctors keep saying it is ptsd and stress, but how can you know it is only this? Again my heart goes crazy when I get nervous - how can I be sure it is just the nerves and not somehting more serious? How can you explain to yourself you are ok? Again I start to feel crazy, I still cannot control my body, my thoughts, my mind. Im seeing therapist but somehow I got more nervous about the things I telling her. Im always tired. STILL. When does it end? Does it ever end? I know each time Im asking the same questions here, but seriously I feel like a hamster in the wheel - keep going but going nowhere.

My husband managed to see a GP about my case and the doctor seems to be willing to help and is very sure my trauma can be helped and properly treated from 6 to 18 months. But this means I would finelly have to decide to be with my husband in the UK. But now, with this political climate (...) My husband finished renovating the flat he got, so he is only waiting for me to come there. But im totally blocked. Im not sure I can manage the travel, especially with this constant stress. It was not that bad before. I thought it is going better but now Im having nightmares, annoying thoughts that something will go wrong. Im not scared to die, Im scared when I imagine I will never live the live I wanted. How do you cope? Nothing really helpes me. Im trying to distract myself but it does not work. I cant focus on reading, writing or anything else. My hands are shaking when Im writing this post and I feel the anger is coming again. There is more and more of anger. Can this be a good sign?!

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Iwona084 profile image
Iwona084
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29 Replies
peaches2 profile image
peaches2

Awe I feel for you Iwona. It's horrible being like that but please keep going and don't let the stress beat you! You've come a long way and can get through it. What a horrible position to be in, poor you. Be kind to yourself and rest rest rest. I can get very stressed and very nervous over the slightest thing and I feel shaky inside too sometimes. You need to try to find some way of relaxing and cutting your mind off from it all for a while as it's over powering and takes its toll on you. Anger might help as it could give you a second wind ready to make real decisions and see what way you are going to go and help you get your life moving in the right direction! I also get the hard beating of my heart when I'm under stress around others, it's not nice at all. Best wishes to you. xx

pleyland profile image
pleyland

Hi

So sorry to hear your stress, I've been there. It's a slow acceptance and understanding of the new you, for you and your husband.

Try and grasp on to the straw that you are still here and live every day as if it's a bonus. Things are different but there is life after a brain injury.

All my best wishes.

P

cat3 profile image
cat3 in reply to pleyland

Hi Paul. Good too see you again ! xx

pleyland profile image
pleyland in reply to cat3

Hi Cat. I've been busy with a house move, but slowly getting back to normality. x

cat3 profile image
cat3 in reply to pleyland

That's a demanding task at the best of times. Glad to hear you've survived it & hope you're happy in your new home.

See you soon I hope. xx

steve55 profile image
steve55 in reply to cat3

cat just read a bit from your girl lubiloo, got tears in my eyes

cat3 profile image
cat3 in reply to steve55

Really ? She hasn't posted here for a long time so must be an old post ...................... about her dad I imagine. Remind me Steve ? x

steve55 profile image
steve55 in reply to cat3

cat3 yes and you and your birthday......and i think think the reason ..........ive got another tear writing this........she appears to have the same caring nature that comes across when you you respond to peoples posts,

cat3 profile image
cat3 in reply to steve55

OK I've just looked back through some of Helen's (Lubilu's) posts and now I'm having a little weep too..................difficult times indeed Steve ! x

cat3 profile image
cat3

Poor Iwona ; you've allowed your thoughts to take over your life when they are just thoughts. It's your thoughts which are making your heart race. Fearful thoughts = rush of adrenalin = fast or erratic heartbeat.

Look at what's actually happening m'love. You are 19 months post BI meaning that you're having all the common after effects which you should have been told to expect by your doctors. We don't recover from brain injury ; we learn to adjust to the symptoms it leaves us with.

Most of us here have been left with issues such as extreme fatigue, balance issues, memory problems and, quite often, levels of anger which we never had previously. You will be so disappointed by now if you've been expecting a complete recovery Iwona.

I suspect you're at that stage where you've imagined the struggle should be over & done with, but I'm 4+years on and I still have some really bad days...............I just try to celebrate the good ones !

And sometimes we have to 'push through' our symptoms to achieve a feeling of wellbeing....................like it advises in a well known book about beating emotions which hold us back, entitled 'Feel The Fear And Do It Anyway'.

Tell your therapist everything which troubles you. Troublesome ideas tend to lose their sting once we bring them out of the darkness of our mind and expose them for what they are................just ideas.

I'm so sorry you're struggling. You've been so brave 'til recently and you can be again once you accept that you now have limitations and issues which you can live with and still have quality of life.

Come and join your husband and prove to yourself that the old, brave Iwona is back in charge !

All my best wishes, Love Cat xx

Iwona084 profile image
Iwona084 in reply to cat3

How can I be sure it is just stress? I get more headaches, more dizziness, more shaking inside. Maybe it is becauae I started therapy and Im talkin about that? I also get flashbacks of the event and I did not for a year now. What did I do wrong? Why this is happening? Can I be sure it is just stress? If that so, why now? And how would i know if it is something more? It is hard for me to write now, I hope I will be able to respond better tomorrow.

cat3 profile image
cat3 in reply to Iwona084

I had severe depression as a teenager and wasted many, many years of life stressing about 'What if ? What if ?'.

All the worry came to nothing and I had a normal, ordinary existence, a family and various jobs. What a waste.

Don't waste your life on panic attacks and anxiety over stuff that will never happen.

It sounds like you've been wrongly advised about the after-effects of your haemorrhage. You were told you'd make a full recovery so you now feel worried ; I was told my life would never be the same so I wasn't disappointed or worried about my symptoms.

I still get excruciating headaches, but they're not a sign of things to come, they're a result of damage already done....................and over with.

I really think you're suffering badly with PTSD which would explain your symptoms Iwona. All your scary sensations are classic anxiety symptoms.

Keep talking 'til you can talk your way out of that awful place you're in right now. xxx

moo196 profile image
moo196 in reply to Iwona084

Morning - hope you are feeling a bit more positive and able to take on board some of the good points/ advice here. I KNOW it's difficult to believe in some of the things said and really hard to get past the fear - but unless you give it a go - you won't know. I think I got to some point where I knew that it was ( is ? ) possible that I have a relapse at some - distant - point in the future but I WANT to live my life inbetween - and the only way to do that was to face it full on - write down all the things I needed to do / people I needed to approach to help me do that ( phsychology/ friends/yoga/eating sensibly / doing some chores etc ) and take control of IT rather than let it control me. Yes, I sometimes get scared - but there is nothing else I can "do" to stay safe .. I try to listen to my rational self at times of panic - keep a note of the positives and things I have learned about my condition - and then move on and do things that help me achieve some goals. I wear my wristband with all medical details on at all times and think that helps me "feel safer" Are there some things - small things - that you could achieve on a daily basis ? cooking yourself nice things ? helping someone else with something ? painting a different picture ? gardening ?

Is there nothing like Headway in Poland ? Any disability support groups that may help ? And any meditation you could practice a few times a day ? Headspace is something I found recently which might be good for beginners.

x

MXman profile image
MXman in reply to cat3

Fantastic reply cat. XX

cat3 profile image
cat3 in reply to MXman

...................why thank you sir !! :-/ xx

Elenor3 profile image
Elenor3 in reply to MXman

My thoughts entirely :)

moo196 profile image
moo196

Good to see you back posting again iwona :-).

I still haven't managed to find the magic wand yet, but hopefully some other people may have some alternative suggestions to help you find a way forward.

I still believe that some small daily routine could help you. Something where you could see some "normal daily life"...to which you could later add a little at a time.

Keep trying! :-)

X

MXman profile image
MXman

Morning Iwona,

I can't agree more with Cat its tough but your thoughts are your thoughts and no more. Pressure and stress is brought on by your own mind and its all about how we deal with it and accept whats going on. I know because it happens to me too. My default setting is to jump on the spiral slide and go down and down until I feel awful. The trick is to really try and not get on the slide in the first place. Have some tools in hand to stop you getting on like a happy place and some hope in front of you.

My heart goes out to you and so do my prayers. Im 14 months on and still struggle as its early days for me. There is no magic wand as moo says but just try and keep busy. Have a positive Monday. Nick XX

malalatete profile image
malalatete

Hi Iwona. Sorry to hear you are struggling so. Have you heard of the 'flight or fight' response? This is why your doctors are telling you this is stress or PYSD and yes, it can do this to you. I think if you were to read up on it, understand just how physical the symptoms can be (it is caused by your brain lockking into a certain way of reacting to danger - even once the danger has passed), then it might offer you some reassurance that yes, you can feel like this without it being another haemorrhage on the way.

It will be important for you to get to a point where you can feel more reassured about that because it is that reassurance which will help you to help your brain switch off its danger mechanism.

There are some things which you can do yourself: exercise gently; eat lots of fresh food to boost your nutrient intake; meditate or do relaxation and breathing exercises. If you focus on calming your body's response to your brain's stimulus that will help to calm you in itself.

Get some professional help too. If your GP is telling you it is PYSD then a talking therapy should be on offer to you. The help of another to process your fears and emotions will be invaluable in shrinking them to a more manageable level.

I really hope you feel better soon...

Blessings x

steve55 profile image
steve55

iwona properly treated 6-18months doesnt mean you will be cured in that time scale, it means thats how long it will take for you take to see the necessary proffessionals.

tiredness aggression unable to read and write in other words unable to concentrate, well have our good days, well have our bad days......the only thing we can do is .............................keep taking the the pills!!!

Iwona084 profile image
Iwona084 in reply to steve55

Hi Steve, the doctor clearly stated that 6 to 18 months is the time in my case needed to manage ptsd and anxiety. It means that within this time major problem would be taken care of. Of course nobody can predict how it will go. As for the pills. Pills for what exactly? I do not beleive any recovery is possible with only pills. Im absolutely sure there is work needed. Work to develop routine, plans, goals etc. This is what makes us, us after all. That is what I choose to believe.

steve55 profile image
steve55 in reply to Iwona084

iwona to manage your depression/ anxiety, my problem was aggression i take epilim which is for epilepsy but can also be used for behaviour control.........ive now been diagnosed with epilepsy......so i take a seperate epileptic drug twic a day as well!!!

randomphantoms profile image
randomphantoms

Hi Iwona I'm sorry to hear that you are on the dark side at the moment.

Feeling useless and worthless has led to a lot of frustration and anger for me in the past and it still catches me out sometimes.

It happened and you are different now.

Every day is the first day of the rest of your life and the past is not important . What is important is what you do with today.

Do you have a diary? Before you go to bed write down one task you want to achieve the next day. Just one task. Allow yourself to feel good if you do it and forgive yourself if you don't.

I don't think any of us are surprised that your heart racing ,anger etc are worse now that you are having to talk about what happened and what it means to you.

I wonder why you are trying to do this on your own?

The next time your husband has a holiday you could travel back with him and that way you wouldn't have to do the journey on your own. At least then there would be someone to recognise when you get into this negative pattern and may be able to help snap you out of it.

Having my husband to interrupt my negative patterns really helped me.

Hope there is something you can use.

Love n hugs

Xoxo

Iwona084 profile image
Iwona084 in reply to randomphantoms

Hi, I do have couple of notebooks where I write my thoughts. One for general writing, one for negative, one for therapy... But when I feel down I dont write, I do not want to have these bad thoughts written anywhere. Somehow Im scared I will send them to the space and karma will be chasing me. Not sure how I figured this out, but writing or saying bad things worries me. I think of them, I worry, but I do not write them down. I know I should, but Im scared of seeing my fears stated anywhere.

My husband always interupts the negativity I create. I lack the courage to travel back with him. Plus I hesitate due to political climate. It seems too hostile at the moment.

I have read more about ptsd and seems I have developed strong one to manage. Funny, I did not have it straight after the surgery, why it appears now? This is a mistery to me.

Iwona

moo196 profile image
moo196 in reply to Iwona084

Ps. I found that writing actually hindered my recovery...I needed to get on and do things rather than write stuff down. Couldn't even write a diary of my recent big trip. I wanted to live the experience and needed all my concentration and effort for just that.

moo196 profile image
moo196

Hi, just a thought... rather than thinking about the why and the research about ptsd maybe use that time on developing some practical positive small steps. ...whether that be taking a long soak in the bath, or doing a painting or making cookies for the lady next door.

I know I'm not always best placed to advise.....but the more small positive things you do, the more positivity will come.

Yes any of us may unfortunately become ill again....but maybe not too, and I'm sure you don't want to spend the next 25 years waiting to see....

Don't let it beat you.....plan small things with the aim of feeling stronger. Only you can do this....:-)

angelite profile image
angelite in reply to moo196

Moo, that reply really spoke to me - I'm getting on with it, what will be will be. Thanks : ) x

Iwona084 profile image
Iwona084

Thank you all for your replies. I just cant help, I feel something is wrong and not checked by my docs. I will try to talk again to them and maybe be more asseertive.

Elenor3 profile image
Elenor3

Hi Iwona,

I'm joinging your thread a bit late - sorry :) just wanted to add to all the fantastic repleis above......I get that feeling of shaking inside when I'm perfectly still. I get really bad 'brain shake' - feels like your brain is quivering. I can cope fine with it if I'm sitting and nothing's stressing me, but more often than not i react to it in the same way as you - start feeling fearful and then the tears come. I've been told it's a sensory issue, in other words a recognised sensation that some people suffer from post traumatic brain injury. Perhaps this will reassure you a littlemknowingnsomeone else gets it (regularly)? Keep on going Iwona, I know it's hard and it can feel never ending but things will change. Xx

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