How do I cope with rehab?

Sorry to have a moan on a Sunday and sorry I have not been around for a while. We got married, went on honeymoon and then now I have gone straight into rehab (a big shock to the system).

I sustained my tbi just over a year on an unfortunate day when I met a shiny Mercedes on my bicycle! We have then spent after my initial stay in hospital a monumental fight with the NHS to get some help, to get me back on my feet. We are still fighting.

I have many problems, although the biggest one is, that I have Myclonic seizures on a daily basis, which are very uncontrolled. I am on Keppra which helped initially, but is not really doing very much at all now. I have never had a formal epilepsy diagnosis. My Myclonic seizures take the form of my right arm flicking repeatedly up and down, my head being shoved to the right and also back and most recently my knees starting to buckle. I also get stuck speech, involuntary speech and sometimes, I cannot speak at all. I do not know whether this is the Myclonics or the tbi. The Myclonics came as a result of the tbi. I suffer like many of us extreme fatigue. I do not know whether this is the medication, tbi or because I have so many seizures. I am complete intolerant to fluroscent lights, too much noise and too much movement. All in all this renders me pretty much housebound. All I want to do is get better and go back to work.

I stay in the house because we can control the environment which helps reduce the severity of my symptoms, but I can't sit here forever.

We have battled with the NHS. I have had some wonderful care, but when the decisions makers arrive it all goes wrong. Long story I won't bore you with today, but it stems to when we made a complaint about one doctor which follows us around. My records have been lost, EEGs have not been reported on. My GP has tried to get my EEGs out of the hospitals by telephone and letter, but they have mysteriously disappeared. We have had second opinions, but as soon as reference is made back to my original treating hospital, the walls go up.

One of the neurologists we last saw shouted at us because we dared to ask questions. He did not report on his EEG. He also said a subdural bleed is nothing to do with the brain. I have also abnormal MRIs etc. We know he was talking rubbish. This particularly so called professional said all the symptoms I experience are pyshcological. Where we agreed some symptoms were physcohological some clearly aren't; the fluroscent lights problems, not all bright light and the fact I have a complete inability to control my temperature and often do not know whether I am hot or cold. He refused to listen to that. My subdural was on my left and most of my involuntary movement is on my right which as my GP says correlates to where I was injured.

We fast forward a few months. I was referred to a neuro physchologists (different hospital form the shouty neurologists). I never saw the neuro physchologists but was referred for an assessment at a neuro rehab unit local to our home.

To our complete amazement they listened to us and within a week I was told I had a place as an inpatient. We had to postpone this as it was only a couple of week before we were due to marry. The unit was happy with this.

I started at the unit last week and am aloud home at weekends. However, I have stuggles. Nothing has happened in the three days I was there. I have never been any where so noisy and they have loads of fluroscent lights. I know I have to go through this, but by the time my husband picked me up on Friday my seizures were so bad, I had to have help to get to the car.

I have gone from being at home where I have lots of support and prompts from my husband to having to fend for myself. On the first morning I only remembered to brush my teeth and take by inhaler at 2.30pm, which resulted in me coughing through the second night because I was late with my inhaler.

They keep trying to make me take the generic brand of Keppra, which I cannot take. I take Keppra because I cannot not tolerate changes in the genric brand. One time you can get one make and another a completely different make which worsened my seizures. I was put on Keppra to ensure continuity. I have had to tell them this five time.

I kid myself when I am in my controlled environment at home that I am ok really, but then I go into the unit and think am I ever going to be better. It makes me really when I go out how bad things are.

My biggest fear though because of my NHS battle that they to are not going to listen and I am not going to get any help. The biggest thing is not knowing what is happening. What I am doing, when I doing it and whether I am going to ever see the end of this. We found the biggest problems because I look "normal" until I start having seizures, speech problems etc, people think I am better. That is all I want to be is better and go back to work and live again.

Any words of wisdom on how to cope with rehab would be gratefully received.

Sorry for a very big, long moaney post, but it helps just to write and get it out.

I will end on a positive though, I have met some great patients in there and I have now been married four weeks to my amazing husband.

Hope you are all ok today.

Thank you for taking the time to read my post X

10 Replies

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  • Hi Betty, so sorry it's not going well for you, I feel so guilty cos I said it would be fine in rehab, which was my experience, I must admit I signed myself out 5 weeks early cos I felt we weren't getting anywhere and felt I would do better at home, I still see the doctor there and he has told me to contact him if I ever need help, so can't complain. I don't have seizures so can't comment on the medication issue, I suppose I really am lucky. Hope it all settles down for you and by the way the walking poles are great! Take care love, glad the wedding was good xxxxJanet

  • Hi Janet,

    Great to hear from you.

    Don't feel guilty, I always really appreciate you replies and advice. I find this site such a huge help.

    I suppose I just have to get on with it and see what happens next week. The main man is meant to be visiting me on Tuesday, but we will see.

    Really pleased your walking poles are helping.

    I read your posts whilst I was away. Turkey sounded amazing and really pleased you got some well earned rest and relaxation. You family sounds great. Could you share them around please?!

    Thank you for your reply.

    Love,

    Betty X

    ps. Wedding was brilliant, but my family were clearly shocked at the way I am. They have not been very supportive and my big brother who live abroad who is the only fab one didn't really get it as I sound ok on the phone. He now rings me for his weekly "check ins", which is nice.

  • Hi Betty

    I think that the first week or 2 of neuro rehab is usually about letting you settle in. I thought the same when Richard went into Homerton, I was hoping it would be army style discipline and it wasn't! However in time the rehab picked up and I thought generally the care was brilliant.

    It sounds like you need to be quite firm with them about your needs - maybe your keyworker/one of the therapists can help with this?

    Are there any single rooms where you can keep the bright lights off and maybe have a reading lamp? Bright lights are always a problem in hospitals but you clearly need to be away from them.

    The nurses need to know what prompts you need. Richard had the same problems - because he was walking and talking the nurses thought he could do a lot more than he actually could (even though it's a brain injury unit and they should know!) so I think someone needs to tell them what you need.

    Seizures - obviously they need to listen to you with regards the Keppra and I hope they can get these under control for you.

    Stick with it, the fact you are in there means they think they can help you, and I think in a few months time you'll really think you've come a long way, but it's normal to have a slow start.

    Congratulations on your wedding

    Paula

  • Hi Paula,

    Hope you are ok today?

    Thanks for posting back. I would love army style discipline as at least I would know what was happening. We have been told very little which is hugely frustrating, but my new friends have told me what goes on.

    I do have a single room which is good and a blindfold and ear plugs. It is still so noisy though and they check you every hour at night, but we negotiated two. I have not noticed this though as my brain had definitely checked out of the building by them.

    I set up prompts on my phone this weekend. I have not needed to do this as hubby has been there to do it for me. We are going to have a chat with them tomorrow and about Keppra too.

    I am going to stick with it and see if it get better this week. It just so frustrating not knowing what is happening. I never very patient at the best of time!

    A step at a time I suppose.

    Thanks again.

  • Hi Betty and congrats on the wedding...

    I can really empathise on the shouty neuro...I met one of those and she was horrible. I fled the unit in tears and had a total and very public meltdown in the street outside..thankfully my lack of memory generally protects me from that stuff but its in my personal- kept- by-us- file.

    Just wondering if perhaps it might help if you were to print out this post and give it to them when you go back. The content is clear and it may help them to fully understand where you are coming from... It would also take some of the pressure off you having to try to explain it.

    I hope you find ways to handle the stresses of rehab...its never easy but often worth it.

    Take care

  • Hi iforget,

    Thank you for your good advice.

    I am sorry that you had shouty neuro too. I had exactly the same reaction when we came out. It made me feel so hopeless. Neuros are most definitely not on our Christmas card list.

    I am going to keep on ploughing on as I hope upon hope someone will rid me of these horrible seizures. My lovely husband is going to have a chat tomorrow.

    Back to the noise tomorrow, which is unbelievable, but I suppose at least I can say that I have tried.

    Thanks again. Hope you are ok?

  • Be carefull you aren't just forgotten about when you come out of rehab. It sounds like there is already quite a lot you have done to improve your life and make yourself as able as possible to lead a "normal" life.

    I was in rehab myself almost 20 years ago, after being an in patient at various hospitals. Since then there's been a big gap. I think, in many cases, leading life can be good therapy but, sometimes we all need a hand. Whether we realise it or not. As long as everyone is TRYING TO ACHIEVE THE SAME THING. When I was in luckily, my best "allies" were the other patients.

  • Hi scruffycat,

    Thank you for your reply. It is good advice as I have found it has been lonely world since my tbi. I have tended to isolate myself, as it is easier to cope with and I often feel uncomfortable when I have problems when we go out. I thought I was going potty until I found this forum and Headway, which has been a huge help to me.

    I found the other patients great last week and they really looked after me and showed me the ropes. They all so have an amazing sense of humour.

    Let see what tomorrow brings when I go back in!

    Thanks again.

  • I you hit the nail on the head - no matter what the problem, there's always SOMETHING, someone will find funny.

  • Best wishes for tomorrow, I found I settled in best when I joined in what was going on but I still spent most of my time on my own in my room watching tv or DVDs, and couldn't wait til visiting time, luckily it was on my husbands way home from Worksop I got an hour a day to help keep me sane, look forward to hearing from you after this week, Love Janetxxxx

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