Hi I'm going to ramble on a bit in a bid to find some sense, get a few things off my mind and see if this resonates with anyone.
I think I'm doing really well in my recovery and feel on many levels 'normal' or even better than I did before. As long as I avoid LED lights and crowds and eching spaces I'm great for 4 or 5 hours a day then I just rest and dose and bumble about.
Psychologically though it is a different story. Last week I just oppened up in a mindfulness group and that seems to have let a big and very green genie out of the bottle. In the group I said that a memory came out during a practice. It was of me being trapped inside my head standing on the spot and just rotating round and round in circles, had no idea of how long I had been doing it, did'nt know why I was doing it, had no idea of how long it went on for, basically had no idea of anything other than being conscious I was doing it. It was like my body was just locked in that state. Anyway I went on to say that sometimes when I go home now it's like having a feeling that I'm walking into a house of horrors because there were many other instances of just 'finding' myself or becoming aware that I was doing odd activities and had no control or idea of what was happening.
Nothing like this happens now but I do feel really unhinged, not in a bad way. Things like making decisions, it used to be if someone offered me a brew I'd have to really thing about it, but now I can instantly make those small decisions but if someone asked if I could do something that was muti faceted I find I struggle with all the component parts of making the decission. I think this is a good thing in the sense that the capacity for decission making is expanding. But jeez it's a funny kind of process and the jumble is on a bigger scale. I actually burst out laughing with these and just say 'what the f**k are you doing'. People think this a bit strange but my good friends have a laugh with me and play on the situation to make it even funnier. So I find myself reliving some of the events from the first year or so when reality disintergrated and these are mixed with really odd decission making and hilarious moments. This all switches back and fore really quickly so I feel like I'm losing my marbles, I even find this funny. I think this is all a good sign myself but would like to hear any thoughts or experiences.
I have arranged some talking sessions today with a 'listener', who basically sits there and let you talk until you work it out in your own mind, which I think is better than an 'expert' giving you a 15min slot and telling you you are nuts.
I find just writing this out on here has made things clearer. So it's just about expression, just being allowed to talk, or write to someone else. Validation. My brain injury unit do not offer any councelling at all for their patients, to help them understand what has happened and work though these experiences. (do other people get help through their brain injury service, it seems odd not to have this service)
Hell yeah. Let it out. I tell everyone my life story and more...lol. chuckle about it as there will be such anger at points in the day.
Take it easy and on yourself. Easy for me to say as I am so tough on myself.
I tell everyone I meet I have a brain injury. They can see I have physical impairments but not my brain. I often do strange or say strange things so better letting people know!
I love a talk and I used to get bored of talking too much. Just stop me...lol.😊
Hi, haha, you just reminded me of a funny incident in a hospital. I flashed my Headway card at the reception nurse at a department in a hospital and asked if there was a place I could wait out of the LED lights. She then came really close to me and started talking in a loud voice, 'are you ok , do you understand me, I'll help you find a seat'. She was treating me like I had altziemers. She meant well but it felt really funny at the time. A good thing came from that, I was later assessed by a specialist who helped deal with hospital visits. She worked out a plan where I turn up at the beginning of the day and get the first appointment, so I turn up, I'm seen straight away and out of the hospital asap. If I have to stay for over half an hour I am sedated to prevent my reaction to LED lights.
Anyway What I was trying to say in the post is that I have found ways to improve my neurological based issues and I am doing really well, however I have been totally unaware of the psychological aspects of the whole journey through BI. This is all bubbling to the surface now and makes me feel a bit unhinged. I suppose it will continue to come out in it's various ways. I'm a bit shocked that there is absolutely no service to provide help with this at all in my NHS authority. The best they can do is recommend a listening charity. I phoned them and they made an appointment but said that they have no idea how to deal with it as they are not qualified to deal with these issues.
The message I think is that you have to treat the psychological as well as the neurological.
I feel stuck all the time but I tell them as it is and say I need help. I was left undiagnosed for 7 years after being hit by a car. I was diagnosed with PTSD in 2015 but it still hid my brain issues.
To tell me that after 7 years that I have a severe brain issue is completely outrageous. I will not let them tell me anything anymore. They cannot help me, damn right they can!!
I do not mean to be nasty but I could have treatment and now it is too late.
Ask for psychological help and do not forget most GP surgeries have mental health nurses. You can self refer or just book an appointment.
A lot of GP'S do not u derstand the complexities of brain issues and mental health. Fortunately I have fab team on my side now who listen and act.
Keep challenging for your needs and being funny to yourself!!
Hi it is frustrating, HOWEVER!! About six months after my accident I began to perk up a little and thought 'oh that's it I'm better' a couple of hours later I crumpled to a heap on the floor. I saw my GP at that time and he said I was just getting a few migraines. I knew he was wrong, he just sat in his chair with a smirk as if to say 'go on get lost'. Well I got home and just sat and promised myself that I would find out what's happening by myself or be stuck in this mess with no help at all. And that's what I did. It might sound 'oh look I'm the big cheese' but I've basically done it, worked my socks off and I'm reasonably happy. A bit more neurological work and plenty of psychological work and I'll be better than I was before. It's like I've been doing a research project with myself as the guinea pig. A neuro-psychologist said she doubted that I would recover to any extent more, that was 8 months ago. But I've addressed most of what she found cognitively. So it's about believing in yourself, how much you want to recover and finding a way through the mess. I have noticed that the US is the best place for information and the UK is at least 20 years behind the curve. Canada is really good too. So get on it, fight the beast because no one is going to do it for you.
I always have 2 types of Sunglasses come rain or shine one dark for heady weather and lighter for shopping in ..I look a fool when it starts to rain but if it does the trick xxxx
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How the mighty fall - and a bit of fun
How do you separate the physical healing process of a head injury from the effect that stress and lost sleep are having on you.
