Help: Is there anyone here that has been through the... - Headway


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Is there anyone here that has been through the same sort of thing as me that is a little further down the line I need help i don’t know how much longer I can live like this it’s affecting everything 😢I’ve got severe anxiety I’m constantly scared something bad is going to happen to me and I’m worried about all the changes happening to my head every day and night I just want to talk to someone that’s kind of in the same boat but further along than me please read my bio that will explain what I’ve been through xx

11 Replies

I am so sorry to hear of the dreadful time that you have had. It sounds truly terrifying.

I think it would be good for you to call the Headway helpline on 0808 800 2244. Apart from being lovely people who will give you excellent advice on every aspect of brain injury, they have such a wealth of experience that they can help you to find out if what you are going through is to be expected at the stage you are at and you will feel less alone when someone understands.

I call them quite frequently and they always say to call whatever your enquiry or even if you just need a chat.

I do hope you find a way forward.

Also, don't underestimate the power of the trauma that you have experienced. It took two years following my injury before I was diagnosed with PTSD by a neuropsychologist.

I am sending you a hug.

Thank you so much I will ring them I just don’t want to sound stupid I’ve been diagnosed with ptsd my occupational therapist also explained some of the symptoms I’m having as the physiological anxiety I’m seeing a Phsycologist I just feel like I don’t think any one can convince me that I’m going to be ok and it’s such a horrible scary feeling I just want this all to go away so badly 😢

The way you are feeling is understandable under the circumstances. I don't know if anyone has said this, but if you get treatment for PTSD, whatever kind it is (I am having EMDR,)you need to be seen by someone who offers trauma focused therapy. So if you had CBT or counseling, it has to be by someone who is qualified to give trauma focused therapy.

My experiences have been very different to yours, but I can identify with feeling desperate for things to change. I have had many days where I didn't know how to cope with the next hour, let alone the next day or week.

I still have times like that.

I would say be very, very patient and kind with yourself. It might sound obvious, but not only are you dealing with all the horrible events, but you are dealing with them with s brain that works differently. This is tough for the brain injury survivor to understand and even harder for those around them.

If you can, learn some relaxation techniques. When the body is calmed down, it lessens the anxiety in the mind. Mindfulness is also good.

Above all, remember to give yourself lots of time. Don't tell yourself off or put yourself down when you make a mistake. I kept finding that I was telling myself how stupid I was when I did something wrong. That isn't fair to yourself and doesn't help. Treat yourself the way you would if you were someone close and precious to you.

It took me over two years to even get close to believing that my injury had really happened and even now I sometimes think I might wake up and find it didn't really occur. It is a unbelievable shock when you and your whole world changes so suddenly. It makes everything seem unsafe and scary.

Please do call Headway. They were my first step into a life with a brain injury.

I recently bought a hoodie. On the back it says, 'Supet Cool Brain Injury Survivor..' That's what you are, you just don't feel it yet

You are lovely. Wish I could find such words if comfort. Do hope this has helped you, braininjurysurvivor. Xx

RainbowBrie in reply to Marnie22

What a lovely reply. Couldn't put it any better. Self love. Self care.

Hello lovely, I’m so sorry to hear of your ordeal past and present. If you can find a compassion focused neuro-psychologist Who specialises in trauma to help you to understand what’s going on and how you can move through it, and be there for you through the journey I’m sure it would help. As I’ve mentioned before on the site there is an excelkent book by Deborah Lee called ‘Recovering from trauma using compassion focused therapy’ - it seems to be the trauma therapist Bible. This approach certainly helped me with ptsd Including nightmares, flashback, self-criticism, fear and shame.. The other thing I found to be invaluable, and is used a lot with trauma survivors is something called square breathing. Breathing in for two seconds, hold for two seconds, exhale for six seconds hold for two then repeat cycle. It helps calm your system down and bring you back down to earth. Likewise progressive muscle relaxation - There are guides on the Internet.

And find a safe soothing place in your mind and memory And train your brain go to it when you feel frightened or confused. At first it will resist but repeated attempts tend to work. Your brain wants to look after you, you just have to Use your heart and mind to help it. Have a look at ACT therapy too online - also good for quietening. And I found talking books really helpful too. particularly PG Wodehouse’s Blandings Castle series - After devouring the whole series I wasn’t surprised to hear a psychologist recommending it’s healing powers on the radio program - it’s funny, , repetitive (in a good way), soothing and all the traumas in it are Happily resolved!

Have a look at the neurology too, it’s fascinating and helps you understand what’s going on in your brain. Learning to go into self soothe mode deactivates the vicious cycle between ‘drive’ and ‘fight or flight’ thereby reducing PTSD and vestibular symptoms.

Keep things as simple as possible and remember there are many of us out there, each with different experiences but all sharing the same need to be heard and understood in order to adjust and accept in Order to move on. You will find hidden strengths that you become enormously proud of, I promise! Xx

Thanku so much all of u I could break down into tears just from your messages I don’t get any support at home or family so this means a lot thanku from the bottom of my heart xxxxxx

This site is like a mine with loads of gems to discover. The people on here have so much experience that they have learnt from, usually there is someone that can help. We have all been in that place where we desperately wish we had someone who understood what we were going through and so we want to help others in that position.

Hi. Sleep deprivation will make everything worse, so chat to your care team or GP.

I found that after the first three months, I nose dived, I thought I was going mad, I was hypervidulent, noise sensitive, anxious, tearful, angry, you name it.

It is just over nine years on now, I can't say life is a bed of roses, or anything like before, but I trundle on. I have two birthdays, one for my age, which I can forget, and one for the day everything changed, a bit like being born again, same body, different brain, and physical challenges.

Headway is a good resource as said by Marnie22. It maybe that you need medication to help, but if this is the case, get an urgent referral to the Neuro-Psychiatric service. Don't let them palm you off on the generic service. The Neuro team understand what physical changes have happened to your brain, and although the brain is still a bit of a mystery, they have a better idea of what will help.

Also Neuro-Psychology can help with understanding from your own point of view. Never feel awkward explaining your problems, everyone is unique, explaining is the only way for others to know what is happening to you.

I always find it difficult to verbalise what is wrong, so something's I have on cards or even pictures on my phone, I carry a Headway I.D. card, and and I.C.E. USB, both can help services get an idea of your needs.

Marnie22 in reply to Pairofboots

Yes, definitely get a Headway I.D. card, they save a lot of explaining. I missed the last train from Waterloo station to Somerset once and when I showed the Police Community Support people my I.D. card because the station was closing and I didn't know what to do, they got the rail network people onto it and they sent me back to Somerset in a taxi that they paid for! Restored my faith in humanity!

Finally my consultant has given me an appointment for this thursday I’m really hoping that’s going to make me few better as well as all of your kind words and advice thankyou very much xx

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