Taking time out to mellow my brain, feels like its going to pop.
I didn't know there was anything wrong with my brain for a long time after the accident and didn't recognise any warning signs that I need to withdraw from an environment. Mostly I get it in time, but not always.
I am going through the usual cycle, at the stage where I am about to redesign (destroy) something in the house, I don't think I can stop it tonight - they should just lock me up and throw away the key because i am worried about what i am capable of.
i hate having a brain injury, you are given a body that you don't recognise and add a brain that produces a personality the old jules would have been ashamed of.
Does anyone on-line relate at the moment, it would help.
Kind regards
Jules
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Julesgettingthere
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Can you tell me Jules whether you went ahead with the CBT ? So many members here have praised this therapy as a brilliant process for coping with irresistible aggressive urges. xx
Not sure if i sent my reply to you or deleted it.... sorry . Tired.
Yes i have agreed to what they are calling 'Trauma Based' therapy at Walkergate hospital. Very grateful for the help but i am very frightened.
My night of destruction followed the predicted pattern - not waiting for my husband Ren to wake up come downstairs and after seeing the stuff everywhere (including an old wooden door from the garden tip) he will then either say nothing but look at me worried looking or say something really insensativce and the cycle will most likely continue. Happy days.
Havent been to bed and i have my PIP review today - I really dont know what to say to these people when they ask how have you been.how are you.
Thanks for listening Cat - chatting always focuses me and calms my head.
I completely understand your frustration as I felt angry at time in my early recovery last year and it was duly caused by brain fatigue. Once the fatigue had set in if I tried to fight it I became a ball of anger and would say and do things I regretted but now iv accepted the fatigue and know how to deal with it, sleep.
Its difficult as we really try to find the old version of ourselves and wonder how the hell it all happened and try to re connect with the old version to reason and figure out whats really going on. I did this for a good 3 months before learning the new version was ME and the old version was gone, acceptance was difficult but it helped.
Talk on here as much as you can as I did and learned from others on here that what I was experiencing wasn't unusual and I wasn't alone. XX Nick
Yes, i know your right, sleep. I wish the GP would just give me a tablet to block everything out when i need it. Sleep nearly always causes me stress. But I do have neuros working on it to help me.
I used to ask people here why there didnt seem to be anyone 'happily back to their old selves. That was about a year ago. I now know that we dont get better we are just learning to cope. You are the first one to sound as if you are nearly ready to be happy, even if it is as another person. I am interested in what you have to say - how your recovery goes - hopefully i can learn.
Yes I have good days and bad ones it's getting through the bad ones that takes it out of me but we are only human after all. Have a good evening. Nick xx
Jules, I often went into meltdown after my SAH, not breaking stuff, but swearing and getting myself into a state where my blood pressure would be dangerously high. It was a very different version of me to the old one, who had endless patience !
But 4 & 1/2 years on I've become more able to step back, take a breath and consider the options................meltdown/high BP/tears/upsetting everyone around ......................or walking away to a totally different situation (usually the garden) where I can distract myself from whatever upset me.
If you've have the anxiety of a PIP review hanging over you, that will be a big factor in your aggressive behaviour. I hope that turns out really well for you Jules.
Please let us know how the review goes. Take care m'dear.....................xxx
A lovely young woman interviewed me but when she got to the part of talking about the accident i couldn't. I said sorry and i hope it doesn't go against me. At the first assessment they did, the initial one, i was more approachable i think to talk a little about it (must have been, i really cant remember now).
Anyway, it lasted about an hour and half and i felt like u wanted to just go home and cry my eyes out - its the endless list of items 'wrong' with me .
But, i am sitting here tonight happy as i finished a project ! I am never able to finish projects i start - this is the second one in nearly a year. Small acorns. Its a large old wooden box from the garage i have sanded, added motorcycle pictures and varnished. I am quite pleased with it.
Are you still working Cat ? I haven't contacted the job center yet like i said i was going to as i decided to speak to the OT first. Bit worried that its him i should be asking to help me with it - do you know ? Meanwhile i still haven't started the work 'work' gave me, but i do have until September to finish it.
Hi Jules. Sorry your PIP interview was such an ordeal ; you'll be massively relieved I'm sure that it's over with.
You sound like me with your projects. The refurbishing of the box is exactly the sort of thing which would give me satisfaction ; making something useful & attractive out of nothing !
No, I don't work these days, although there still don't seem to be enough hours in the day........................probably due to my having slowed down since the BI. Just keeping the house and garden in order, and making time for family, is as much as I can manage although the garden is more of a passion than a chore.
Your OT might prove insightful where employment is concerned but the nature of it and whether you're able to cope is down to you alone I suppose. Do you feel ready Jules ?
My concern right now would be your inability to re-visit the details of your accident. I understand what an ordeal it can be putting yourself back there mentally, but it's something which needs addressing in order for you to take back control of your life.
The past can't hurt you any more Jules unless you keep it hidden. I always compare such memories to vampires..............once you throw some light on them they lose their sting ! This is why I mentioned CBT.
Oh well, I need to walk down to Tesco to but some picnic treats for my grandson's birthday tomorrow ; think we'll take some goodies to the park and play with his new cricket set !
'Vampires'. Yes, what i good way of describing them. But you say they cant hurt me, but i am not always certain of what actually is here and now. I know that may sound strange (probably not to you because you have been there) but, when your head challenges what life actually is and who these people around me are, doubt of things i know i took as given before, is most definitely there. Its this that makes me worry i am what they call 'gone slightly insane'.
What i mean is i feel like i am looking at people and surroundings rather than being in it. Its a lonely place.
I seem to have stopped improving with things now, this must be all that i am now supposed to be. Its not a lot is it Cat. It makes me sad or angry.
What is real is a picture of you in my head its a beautiful sunny day in a leafy park and you are having a picnic with your grandchildren - lasst time my mum came over i made fish stick and prawn may sarnies and we had a picnic on Blyth beach. Wonderful memories.
I was diognosed with disacotiation, I'm 6 years on from my bi but it takes long time for the bi to be at the point of able to do that. Sounds similar. Very rarely ever happens but in very very scared the next time it does. I think it's the same as when murderes as egample say thay had an episode of not knowing what they were doing. It's stress. The brain literally shuts down and closes so nothing goes in and there no control of what goes out. I think it's similar to the out of body experience thing. The way you saying they could lock you up cause of how you feel does sound like disacotiation , if it is it's nothing to worry about as in you not going mad. You need to learn not o get to that scary point. Sadly there no tablets so I live in fear of it but just hope Iv learnt enough to stop it in its tracks and to recognise it coming on x
Stress levels get high and then higher ect ect. Not stress as usual a diff kind of stress feeling. Usually lots of diff things. I don't know how it explain it really cause one minute your stress starts to get higher and then just a brain blackout and that's too late. I think just recognising when the stress levels start getting high to stop them. The last one I had I walked all the way to a shop, the co op. Must of fallen a few times by grazes and cuts and a total stranger man drove me home. !!!!! I remember nothing before the shopper in coop said he would drive me home, scary stuff xx
I am sleeping walking. Proper scary sleep walking when i have walked into walls 'seeing' a doorway there. Its one of the reasons i only sleep down stairs now. Its a bit worrying that i go out the door at night and wonder off. When i go out i sometimes suddenly dont recognize where i am and the people around/near me scare me. I dont go out much now and never alone. Its these times that remind us (me anyway) that things are not ok really are they.
I think i know exactly what you are describing with the 'stress' starting - i feel like a 'whirl' of it. I will try and stop it next time it happens see if it prevents it. Its about twice a week.
Sorry to hear you are not doing so well. In view of your recent post regarding your work performance, I am wondering if the stress of worrying about your job safety is affecting you ? Add your PIP review to this ( which can be an uncertainty and potential trauma in itself ) and I can understand where your head is at.
I have moments of intense frustration with the new me since relapse - what I worked so hard to gain back 3 years ago I have now lost again, along with my cleaning job, financial independence and a measure of employability. It is a road of financial difficulty and uncertainty for me at the mo but I have a glimmer of hope. I went to the jobcentre yesterday and have been given the number of a disability advisor, plus been advised to get in touch with Remploy and Shaw trust. Went on Shaw Trusts website last night - liked what I saw : )
See, I was always a very independent person, never wanting to accept help, always seeing it as a sign of weakness somehow. My attitude has changed - realisation has dawned and I recognise that I will need help to stand a chance of getting back to work and have to tailor a job to fit my abilities as they are now because my former level may not be coming back.
The other pro active thing I have just done ( courtesy of my son paying ! ) is to get a private physio assessment for my new deficits - something my GP should have done but sadly chose not to. The results of this have been forwarded to GP with a recommendation of neurophysiotherapy. I am hoping that they will refer me : even if I only get to see them once, they may be able to print out worksheets for me to take home so I can do specifically tailored exercises that could help my particular deficits.
On a practical level, have you tried aggressive walking ? ! Sounds daft but I find this can help when my head is in a mess. The aggressive part doesn't last long with me these days - my legs soon slow down on me but it can help to release pent up frustration, provide personal time and space away from a situation, time to think about options or just time to escape and have an empty head for a while. We are fortunate to live in a rural area - I always find nature has a calming, relaxing effect on me. Perhaps you would be suited to a more hands on, active job than a stationary role ? I'm impressed that you can lug a wooden door : )) You once said you had the urge to create in one of your posts - could this be harnessed, together with your physical ability to provide an enjoyable job opportunity for you ? Something in indoor/outdoor design perhaps ?
Best of luck with your therapy, Jules and I hope PIP went well today.
Why did you loose what you had gained over the last 3 years, what happened ?
Pip is over pleased it is - it was emotional for me. Seems wrong being forced to talk about my injuries for money. From what i hear many people these days are now forced to appeal as they are declined. No doubt that is due.
I have been known to drag really heavy items and regret it physically later. It was my back injured in the accident. Like you i was fierce independent but i am finding it difficult to acknowledge/believe i need help most of the time.
I am going to have a look at the Shaw Trust, thanks for that - i seem to remember hearing something negative about remploy but cant remember now.
I got a urine infection in Oct 2015 which turned into sepsis requiring 2 hospital admissions to finally cure. During this time , I had familiar buzzing, numbness, weakness problems like the latter symptoms of 3 years ago plus worsening of balance.This continued for 2 months, long after my infection was cured, ultimately leaving me with more spasticity and balance issues and unable to continue my evening cleaning job. I am now awaiting investigation for MS.
I have just completed the PIP form so will no doubt be invited for face to face soon ! ( Gulp ! )
The decoupage wooden box you have just made sounds great - I'm sure there would be a market for handmade crafts like this. Get help with the heavy stuff though - backs are important ! Your local Headway drop in may be able to advise on employment too - I have just made contact with my local Headway for the first time on Tuesday, as I have felt rather directionless since the relapse.
MS? God (or whoever is in charge upstairs these days really knows how to throw trouble doesn't he. I really hope its not.
I squashed a little bit of my spinal cord in the accident and one of my problems results in urine infections - i too have problems sometimes with balance and infections have a knock on effect with me too. I was in hospital for 2 days once with it. I have eventually learnt the warning signs and now use urine strips which also keep an eye on my ketoes.
My husband Ren is going to build a large garage this year so i hope to secure a corner so it doesnt matter so much when i spill things on the floor or cover things in dust from sanding ! I wsould really love to be able to make money from some of the boxes i make. great idea.
Hope you have a nice evening - sun is still out here.
I dont mix easily and cant do scrabble/quiz nights - it makes me embarrassed. So i have never been. I think its held here at walkergate hospital, is that right ? If they might help with training/employment advice i would like to know more - can you tell me more about the drop ins (are they through the day also ?)
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xx
do you remember receiving your injury
