After nearly very long months since I sustained my tbi I have been dumped from one system to the next to try and get help and general ignored by the medical profession. I can cope with my quirky behavior post tbi, my dodgy speech etc, but what I cannot cope with is that the fact that I have many seizures everyday and I am also very, very tired. The seizures are as a result of the accident. I was told in hospital that they were Myoclonic. I started on meds (which are horrible) and they improved but still very significant everyday. I am still very uncontrolled. I also cannot cope with noise so I tend to have a nice controlled environment at home, but when I do go out, things get much worse. Also cannot cope with fluorescent/flickering lights, this amongst all the other fun stuff that came along after I landed on my head.
None of this seems to get any better and I am so tired fighting any longer so I have retreated in my nice safe controlled environment at home. I really want all this to stop though. I want to get better and go back to work. Work however are about to ceremoniously dump me (another story).
To cut a long story short (sorry I am getting there) I've been round and round in circles trying to get some care. We very much got the impression, because I am standing the medical profession do not want to know. I have even had one neurologist almost shout at me. We complained about one doctor in hospital as they refused to treat my leaking lumbar puncture. We have found if you complain about one doctor, you may as well complain about them all.
No one has sorted out my seizures However, the positives are is that my GP has been brilliant and so have marvelous Headway. I have also met other brilliant doctors and nurses, but when you get to the decision makers in the hospital the good care stops.
However, we have a break through. I was finally referred to neuro psychologist who without seeing me, referred me to a rehab center for assessment, which happened last week.
This morning I got a letter to say they want me to go in as an inpatient, but I am on a waiting list and now I am very nervous because I do not want to be an inpatient, but desperately want the help to get better. I just do not want to leave home as I find going to hospitals drain all my remaining energy from me.The fight and my dodgy brain has caused me to retreat in my OCD ish controlled world. I find it very hard not knowing what is going to happen. I also have lost faith in the medical profession.
Apologies for the length of my explanation just wanted to find out if you do not mind, your experiences of rehab. Should I go for this or go for a community based option instead? How long will I be in there for? Will I be allowed to sleep in the day? They are promising to sort my meds out so hopefully get rid of these horrible seizures. It a big carrot for me.
All thoughts, advice and information would be very much appreciated.
its hard to say because everyone is different, and rehab is different
being an inpatient means that you can still have a good amount of rest as well so you will probably get more rest there, also rehab can be more intensive so rather than community based rehab which can drag out as you will have to fit in with their schedules and appointments.
I'm sorry, I can't help with your question as I've never been through it but didn't want to just read and run / hobble and just ignore you.
Whatever you decide, I hope it helps you get to the place you want to be. Thinking of you, and hoping biker and anyone else who pops along can give you a hand on that score.
And yes, 2 good days in a row - it can happen. Thank you for asking =)
Maybe you could contact the neuropsychologist or hospital and ask if a single room can be made available, owing to your problems. I was transferred to a single room recently on the strength of sensitivity to fluorescent light and noise. There, noise was minimised and the lights were kept off apart from the one above the bed. Just an idea to help you feel less exposed............owing to availability, obviously.
Which rehab centre do they want you to go in Betty? I was in the Floyd unit at Birch Hill and they are fantastic, can only speak for them but it was a fantastic 5 weeks, they helped me no end and it was calm and caring look into it and don't be scared if they can help, let them hope it goes well x Janet
More info on the rehab unit I was in , I could sleep at any time, they never woke me for physio or anything like that , I had a room to myself and a tv although there is a day room if you want to socialise, they only insisted that everyone eats together but cos your not all up at the same time , breakfast was often on your own, not everyone had a room to themselves, maximum share was 2 and they only had 3 or 4 share rooms and took 18 patients max, visiting was from 2 til 8 every day and if you were fit you could go home at weekends cos no physio or doctors ther then, neuropsychologist there and speech therapist during week too , lots of support and really caring, every patient had some form of brain injury, just varying degrees, there were stroke victims, ms sufferers, stabbing victims, accident victims I had had encephalitis, if it's offered do some homework and find out where you are going ask all your questions but it's worth it, good luck x Janet
Just retread my last post and I missed out you only had to sit together at mealtimes, food was great, they cooked for you individually nothing like hospital food x
Hi All,
Hope you are all ok today?
Can I just say a huge great big thank you for taking the time to reply. Your responses have really helped me and thank you lastchance for stoppoing on by and your support.
Well I spent spent twenty four anxiety fuelled hours after I found out about rehab, but I am very please to report my knickers are now un-twisted and I am sorted!
My brain takes a while to reason things through these days, but my ping moment came in the middle of the night. I thought about Cat's reply and ping brain goes, why don't you talk to them. I find it very hard to rationalise these day and it takes a while to come up with sensible solutions. I find I get stressed very, very easily which renders me completely incapabale of any proper thought.
Anyway, after thinking about all your replies and thank you Janet your replies made me alot more confident and at ease with the idea, much appreciated, I am going. I am on a waiting list so not sure when it will be.
I desperately want to get some kind of life back at the moment I just exist and mainly sleep. It concreted the descion in there to go, when I remembered biker saying a while ago that he takes ay help that is on offer. I remembered that and it is a good piece of advice. So I am going to leap in and give it go, because if I do not try I don't know and hopefully I will be a bit further down the recovery path as a result.
Thank you very much everyone. You have really helped me.
Well done you Betty for making that decision. My friend B has been to 2 rehab units. One was even approved by Headway and it was wonderful....I found it relaxing to be there and I was only visiting! The other rehab was much more medical, but the structure and intense therapy certainly helped B in her recovery. If you have time let us know how you get on.
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