Hello, is it usual to go further downhill after release from hospital, I think I came out of hospital about 3 weeks ago and I am getting worse, for example I have hardly eaten because I can't even operate the cooker, making a hot drink leaves me baffled.
I remember going to the local CAB last Friday as I needed help with some forms. A few months ago I was interviewing people for jobs and helping them with their CV's. Now I struggle to read a sentence. People have said that often tying isn't affected. How the Hell does that work???? Anyway the CAB said I badly need to see a social worker, I haven't had any help from the hospital since my discharge and my GP is so crap she failed the spot the Encephalitis. I collapsed at work after 3 visits to the doctor complaining of confusion issues and doing bizarre things, both at home and at work. The social worker is coming on Wednesday, I have no family in this part of the country, that was the nice lady's at the CAB.
Sorry to harp on, back to my original question, do people often get worse even after the lumbar puncture and the course of anti-biotics, I had both drip (in hospital) and a course when I left hospital, it's the confusion and lack of memory that is worst, thanks.
Tony Walker
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tonywalker
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Thanks Kathy, the lady at the CAB rang somebody and the conversation I had was from Headway (i think). She asked for my details, address and phone number but everything was such a blur. but I will bell them in the morning. I received a pack from an organisation last week but I cannot make sense of it. I used to be a sod at work, taking the mick out of the apprentices calling them thick. I tried going to work one day last week and asked one of the apprentices was there anything I could do. AND I RUN THE DEPARTMENT!
I ended up sweeping the work area, and I am their manager, what's happening????
First off,sorry to read that you are having so many problems,DO ring Headway tommrrow,second my hubby was like that in the kitchen when he came home too! It does get better,his congative abtlies came back and now he can make tea,cook etc, i realise its hard with less support,at home but you will make it through this! You know you can change G,PS
The lack of aftercare is one of the main complaints from most people after brain injury. It looks, however, as though perhaps you were discharged from hospital rather prematurely.
Before I could be considered for a weekend home I had to walk about half a mile, accompanied by two physios, take a shower and a bath, also accompanied, and make myself a cup of tea and fried eggs on toast.
But once out in the world I found it pretty scary after so much support and, like yours, my GP was totally clueless about my symptoms both pre and post haemorrhage.
The Headway helpline is 0808 800 2244 ; please do contact them.
And it does get easier with time Tony, I promise !
I'll be honest - I lived off readybrek for a few weeks before I ventured into the world of soup and a sandwich ! I struggled to put the dogs food together in the right order - meat, hot water, then biscuits. Do you have any friends/good neighbours who could help out with things a little ? Would you be able to sit quietly, think about the steps needed to make a drink/ some cereal ( many are fortified with vitamins so a good temporary meal substitute ) and write them down on paper to stick on your kitchen cupboard doors ? Hopefully Headway will give you some useful info and Social Services will provide some help. I also had to remember to stop trying to be Wonderwoman and rest/sleep between short activities in early recovery as fatigue makes symptoms worse !
Just remembered that the other people who were great help were community neuro rehab team....ask for referral straight away....and remploy....gov backed agency to help disabled people find/remain in work.
Hi Tony, so sorry to head of all these issues you're having. Great advice from everyone who's alresdy replied. I defineykty went down hill after leaving hospital but was lucky to have support at home from a partner who was able to take time off work and the brilliant community neuro team. I got myslef discharged from hospital as it was making me more ill staying there. That said - I've struggled since. Being at home certainly removed many of the issues I was having through being in hospital. My husband was able to carry on the physio and take me to hospital out patient physio regularly - but the cooking thing - I still wNt cook nine months on. I've just started making super noodles in the microwave this month - so very proud of that - and toast (if I stand right beside the toaster till it's ready). So there is light at the end if the tunnel. You really must get some proper help so please do go to Headway and Remploy good luck......keep us posted
From reading articles and posts on this and other websites over the last 4 years. It is quite common for symptoms to "develop" over the first 6 months. I put "develop" in quotes because they may be there since the injury but because you are focused on other things you may not notice them.
My mother in law has had encephalitis and like you the doctors failed to diagnose her after several visits to hospital and GP. Again, like you she really struggled and couldn't return to work. When she first had it we'd (family & friends) help her in terms of making her food, telling her to get dressed, run a bath for her, take her medication, take her places etc. Two years down the line, she's better but not 100%. Things she struggles with - seizures, vision (everything feels like it's moving) and remembering things. However, thankful she is better than she was. Just take it one day at a time, encephalitis is essentially damage to the brain and as I have been told several times by doctors recovery is a gradual process (my own mum had a bleed to the brain in the same year). Please get a social worker or friends you trust to help you out, it helps and being independent is great but whilst you're struggling with your memory, take as much help that's being offered.
Also neuro rehab is something you should consider. Occupational health need to also assess you in work and around the home.
Hope you do get better, just take it easy and take each day as it comes.
You know what, the more, stories sound derogatory, I mean cock-ups that occur on here make me so angry. I even was taking daily events on paper with me to the doctors. Getting lost in the house, getting lost in the town centre, forgetting how to make a brew, and other everyday events. I complained of tinnitus and was sent to Specsavers for a hearing test.
I was even accused of turning up drunk for a doctors appointment.
After 3 visits to my doctor I persevered with it but collapsed at work, taken to hospital and sent home the same day awaiting results. They came back clear but the very next morning the hospital rang work and demanded me in immediately. I thought it was just to tell me I had the all clear but it came back to me they had done that the day before. I had to break a business lunch short, not that I remember much of it anyway. But we were negotiating new deals in Korea, the hospital passed it on to my secretary I was to go to hospital immediately. I had previously given the hospital permission to speak to her due to my confusion on the phone.
As soon as I got into the hospital they told me my bed was ready, this totally freaked me, I had asked my bosses to wait outside the hospital gates while I went into hospital. Now this, ! lumbar puncture later and I am told I have this illness I had never heard of, If I wasn't so physically and mentally tired I would be taking action, but I am certainly seething to say the least. I'm livid about it, sorry, I am not normally prone to such outbursts, but I'm thinking of other sufferers on here, lets all try and help each other, there, I've done now, deep breaths, and a short!
Hi again Tony, I had been suffering from a viral illness for a couple of months before it appeared in my brain, luckily my GP finally spotted it and sent me to hospital for observation where I lapsed into unconciousness by the end of the day. I don't recall any of the lumbar punctures I had but vague memories of an MRI I had. While supposedly under observation my husband said to one of the nurses" I can't wake my wife" they said I was having a nap but panic ensued when they realised I'd lapsed into a coma!
Anyway, my last MRI at 6 months still showed some residual swelling, hopefully it's all gone now cos they've never followed up on that.
I have certainly found that I have periods of improvement and the it all appears to go backwards for no apparent reason! Very frustrating when I've never had any major health issues. I put the apparent setbacks down to actually pushing myself too hard, by that I mean trying to live like I used to, and my brain just doesn't like the multi- tasking etc.
You've had lots of good advice, hope you'll get some support this week. I couldn't have managed without the time I had in a rehab centre. Like Cat I had to walk unaided, learn to use the kitchen and shower/bathe unaided too before I could be considered for discharge. I also had a number of weekends at home to ensure we could all cope.
Unfortunately, NHS is very patchy throughout this country.
You've gone from an environment where things were done for you or you were reminded when in hospital. Suddenly you in an environment where you have to go it alone, and are flooded with things to do.
Also a sign of getting better is that you are noticing things like you've lost your sense of taste. or that you no longer recognise people's faces, or you've got a twitch when you didn't have one before.
The Headway worker - words cannot say how helpful she was. Important stuff was written up and plastered next to the kettle (you don't forget to want a drink several times a day).
My morning list was feed the cat, feed me at the same time, get frozen meat out to defrost for the evening. I had little clocks with the time date and day of the week next to the kettle and in the bathroom, they really help to this day.
She got me into a routine which gave me confidence. I had a big diary next to the computer, and kept a daily log on the computer what I had done, people I'd seen. It told me what I'd done yesterday and what I was supposed to do day by day. It gave me confidence.
You need sorting out by a brain injury support person and I hope you can get the help you need. Its a false economy to not put appropriate rehabilitation help in to brain injury people when they go home, it's cheaper in the long run to get them as independent as possible. Good luck.
Thanks Stardrop , I have started to do a daily routine, and one day a week I have returned to work, not to do anything, just hoping it may bring things back I used to do. The bosses have been so kind. Wish I could say the same about the idiots I work with, brain dead mutants. If that sounds cruel I am sorry. I have had to buy a set of bluray head phones to mask out the constant racket. I am supposed to run the department where I work but it has been taken over whilst I have been off.
I read on a post on here a few weeks ago regarding bullying. I wouldn't call this bullying just constant banter at my expense. But it comes close.
My bosses have made it clear I am needed back as soon as possible but I should be ready to do so. I am in a job that is rapidly dying out, I'm a television audio engineer and we have been looking for someone for years to work along side me. There are none left, a bit like miners, a rare breed!
As I say the bosses are so kind, they came every day to see me in hospital and they ring me daily enquiring about any progress. Sorry, I'm possibly going off topic, it's going to be a long climb but I plan to do it, take care all.
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good luck......keep us posted 
New member saying hello from Devon
Another tale for the PIP files
Hopefully the final word. And a word of caution concerning CAB..
New to the site .... trying to finding people to talk to with ocular hypertension, traumatic glaucoma & post concussion syndrome 
