I'm about a year on from my first of many seizures, the NHS A and E saved my life several times, ambulance, oxygen, defibrillator, etc.. Spent several days in induced coma on drips and 24 hour watch. The dream states and hallucinations can be very interesting and worth writing down. For some reason photographs and videos are not allowed but would help a lot in gaining an understanding of one's situation and recovery.
I have now been discharged to home and am slowly coming back to normal, and am told it will be another year. I'm having to learn how to shave, walk, write and deal with everyday problems and situations and the unexpected. Luckily I can read, talk and type and comprehend most of what is happening. Long term tasks and sequential thinking is pretty hard - but still a long way to go. Memory is pretty patchy and keeping a diary and notes are essential.
My wife has stepped into the breach, is newly retired and handling the shopping, cooking, medication, appointments etc, etc. We get financial support - attendance allowance and carer's allowance - which helps a lot with the extra costs. I don't think I would have coped on my own. Food tasted awful for the first few weeks and is starting to resemble what I remember.
Suicidal thoughts have lessened and fatigue has improved and I have managed a few short walks and some Pilates type exercises. Have found an osteopath who has helped unstiffen my joints which have lost flexibility due to osteoporosis and being bed bound. Fatigue is a big problem and a major obstacle to regaining mobility, carrying a walking stick helps to alert people to your condition.
The NHS ward staff were amazing but the aftercare is almost non-existent, despite many promises. You get passed around and hear stock phrases like "Tell us if it gets any worse", "We'll look into it", "I'll be back in ten minutes" (2 hours). The sooner you get mobile and independent the better - morale is important and respecting the staff and their work helps to create a good atmosphere on the ward.
Many of the patient's attitudes are pretty appalling in terms of attention-seeking, constant moaning and demands. How the nurses and staff cope is beyond me, though the doctors and consultants can be pretty disinterested and hard to reach too. I have found the Encephalitis Society information invaluable and the forum helps a lot in gaining a perspective on things.
It's a long way back to the world you once knew but the human capacity for recovery is astonishing given the degree of helplessness during the early stages - hang in there!
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Gandalf2
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I would have been 2 when I was in a similar, but different position to yourself with regards to being hospitalised and on a drip, seizures etc they were my youngest days.
As far as I am aware, I don't think I had a problem with my tastes or any of the other problems that you are facing. I'm so sorry that the hospital staff have been disinterested, that's not very helpful at all, it's absolutely appalling!
For me it was the only world I ever knew. I never really felt helpless, I think I was more resilient .
My slow processing speed is why my thinking skills were more difficult. I must admit that it does take a long time but never mind me.
I am trying to help you!
Recovery is a long journey but being patient with yourself, and thinking about the positive things that you CAN do, and trying to stay in the present is what helped me (but it was far from easy though) and keep on persevering very GRADUALLY with your lovely wife's help if required.
Sorry to hear you've fallen prey to the big E too and from such an early age. I've just got home from hospital after being rushed in on the edge of another seizure and put on steroid drips and lately steroid tablets for a fortnight I'm on quite a lot of medication for immune suppressant, thyroid deficiency, anti-seizure meds, osteoporosis, and pain relief, etc.. It all works so I'm pretty comfortable and on track but it took a few goes to get it right.
(The staff and medics eventually got in the saddle and after a few prods followed through. I had a few run ins with little dictators with the keys to the cupboard who finally got the message after my complaints to the high ups over delayed or refused pain relief.)
Awake with with pain till 4 am and being woken at 6.30 am isn't what I call therapeutic.
The night sister hadn't even read my case notes and told me I was in for a kidney transplant - pretty scary after you wake up on a drip and no recollection of how you got there!
I was given blood tests which revealed a thyroid problem, which may have been going for decades as I have suffered from depression and fatigue for years. That seems to be sorted and I'm much improved.
One novel outcome this time has been problems with face recognition. I can't quite place myself in the mirror or completely recognise friends and family. All a bit of a laugh and rather strange. My memory is poor - I just have to alert people to this repeatedly- and not lend anyone any money!
I was pretty fit until the E and had to learn to walk again after being put into induced comas for weeks. We go for a walk every day after tea and I hope to soon be back walking, cycling, sailing, climbing, potholing, shopping on foot and keeping busy generally.
Quite shocking to be in hospital seeing all the obesity, bad lifestyles and people basically rotting from the inside. Urrrrgh but their choice I guess. Not to worry.
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