Difficult Paths

[Gandalf2]

This is a reply to a post but I thought it may be useful to others.

I guess we all have a different path to what is left of ourselves. We have to learn to live again, the medics don't know who we were before. We have lost a lot of our past and our old ways and they need to be resurrected, relearned and recognised.

With my invalid memory each new day seems a wonder to behold. But things that I used to not notice now scare me. I daren't go into town - it will all have changed. I try coffee, tea, beer and they all taste of nothing. I try a cigarette - I can't taste it - wine has a nice effect but headaches follow.

What are the steps to follow when shaving? Have I tied my shoelaces properly - will they come undone?

Where is my Enc lanyard?

Where is my bus pass?

What happened yesterday - did my sister visit - or is that tomorrow?

Can I read a book? I can't watch TV - it's horrible. I watch the internet of US traffic stops, nice and short with a happy ending - usually DUIs.

Can take 6+ years to get back to normal/ish, so they say, maybe.

We went on a walk to Buckden Pike, North Yorkshire and lost the path - ended up following a sheep track along a precipice above sheer drops down to waterfalls, raging torrents and scree slopes. Sometimes on all fours clutching clumps of grass. Just got back to the car before dark. (Once lost you can't predict when you will return. Sounds like an Enc. motto.... Note to self: Take headtorches.)

Very enjoyable, I was not afraid but my wife suffers from vertigo and nearly couldn't go back or forward. I coaxed her along - "Don't look down, look at the path, watch your feet, look to the grass handholds." She made it and now feels great. She does training now at the local gym and is doing well - lots of new stamina and strength.

Took me a few days rest to recover and resting in bed is very nice. I'm 73 and after a lifetime of hard work it's lovely. I'll take some pain relief and get up, get dressed and get busy with stuff I have forgotten how to do. What a farce, ha ha.

Tired now, best wishes to all - keep on doing what you did before.

G2

[Paula-38]

Hi Gandalf2,

I really am so sorry to hear this. 💔

Because I had encephalitis the day after my first birthday and there are others around somewhere like me, (meaning when they had encephalitis).

I agree that we all have different paths, but... I have learnt to live once, no relearning so to speak, I lost nothing and to keep doing what I have always done.

Well, I have learnt I used to say or do the wrong thing without first thinking about what the consequences could have been or were.

I wasn't taught these things, but I had no idea I was doing wrong, I thought I was doing right because that's all I knew and nobody knew why. I try and not to do and say the same things again because of what the consequences were. It's kind of like learning from my social mistakes, so I have made a book of them now, and new words/phrases I previously never heard of (but I should have done) go in there too.

I have put up numerous posts in the last 3 years or so if you wish to look through them please do.

I wish people would understand that we all don't lose what we had or relearn or find a new 'so called normal'.

How would others feel if I said "we all" went to school after having had encephalitis first and grew up with the after effects?

Do you see my point?

I think maybe directing posts at a group of people say at those who had encephalitis either at parents of children or maybe those who were retired and then caught encephalitis or if they had to give up their job etc? Rather than directing them to us all, as everything is not always applicable to everyone is it?

However I understand and sympathise qhere you are coming from,

but unfortunately I can't empathise sorry about that. I hope someone else might be of more help to you than me.

All you can do is your best, and make the most of life now.

Paula-38

[Gandalf2 in reply to Paula-38]

Hi Paula, I'm sorry my post has caused problems. I forget things and now remember your early Enc attack. I started off with just a short post reply to Kit and then it went on to something that I thought have a wider relevance. I will wonder about posting as many will inevitably be personal, addressed to the group but won't be relevant to everyone.

When I woke from my coma I recognised very little of me or my life and had to be taught about myself. At least I had a life to reconnect with, I still have to learn to ride a bicycle and sail a dinghy again - though not at the same time! I'll probably never learn to cook again or organise anything. Not to worry.

All the best, G2

[Wygella in reply to Gandalf2]

Hi G2. I find it really interesting to read everyone’s different experiences. From Paula-38 where her life took a different turn at 1 to Kit, whose life has changed so much, to you who acknowledge the frustrations we encounter but also the good some of the changes bring.

I’m one of the lucky ones in that although my life has changed, my hospitals amazingly quick diagnosis and action I believe saved me from a lot worse. Like you I can see the positives from what happened and am able now to laugh at the oddball stuff. (Well mostly!! Not always of course.)

And wow you were brave on those moors! I am definitely not brave brought to do that in my Lancashire hills!!

[GreenBamboo]

Hi G2, I found reading your post really moving. I am sorry you found yourselves in that position.

Your post elequantly poses alll the strugglesof Enc but what I took away from it was that you are that support & encouragement for your wife in such a raw, loving, instinctive way. Her strength when she needed you; something Enc did not rob you of!

Maybe I am just a hopeless romantic but really lovely to read

Best wishes

[HSE_Survivor]

Hi Gandalf . What they say about 6 years + to recover is very true . The recovery never stops . In 2013 in my first year of recovery , I had to relearn absolute basics like speaking, going to the toilet, and remembering to turn a tap off .

Ten years later I’ve just had a nightmare holiday in Italy, as my husband became ill and was admitted to hospital for 5 days . I managed to contact our insurance to report his illness , I persuaded my hotel to find a room for me and my daughter when we were forced to remain in Italy , and I even managed to find a bus to get to my husband’s hospital to visit him each day by myself .

We got back to the U.K. safely last Wednesday, and I then had a focal seizure as I think my brain is so tired . But despite the seizure , I can’t believe what I just did in Italy . If anyone had told us that this level of recovery was possible in 2013 , we wouldn’t have believed them.

So don’t give up on finding new ways around the recovery path . Miracles can happen . 😊

[Wygella in reply to HSE_Survivor]

That’s fantastic. Well done. And so encouraging. But what a nightmare for you. I hope your husband is recovering now.

[HSE_Survivor in reply to Wygella]

My husband is a lot better, thanks. The emergency care in Italy really was amazing. He had an an MRI scan, intravenous antibiotics and saw a specialist within 5 hours of being in A&E. I felt he was in safe ends there, which helped to reduce the stress / shock.

[Wygella in reply to HSE_Survivor]

It must have been so scary though in a different country, although their health service sounds great! So pleased your husband is a lot better.

[Gandalf2 in reply to HSE_Survivor]

Relearning, or learning afresh in many cases, especially if combined with short-term memory loss is the hardest part for me. I can't remember the seizures and near death parts that were my wife's darkest hours, she didn't sleep for three weeks on and off. Most of my memory was gone and I was a stranger to myself and my wife. I asked the nurses to tell my parents I was unwell - they had both passed away years ago. Who was that man in the mirror and did I wear those clothes in the wardrobe? A pretty rough ride.

Sounds like you did an amazing job dealing with all your issues, including the language barrier. Becoming ill on holiday is a nightmare. We were on holiday in Madrid; after eating tainted (doctored?) food my wife had the runs and vomiting for a week. I just managed to get her into a taxi and on the scheduled flight home. It really turns your life upside down, well done!

[HSE_Survivor]

Thanks Gandalf . The noise and crowds make busy airports a challenge , so you getting your wife into a taxi and onto your scheduled flight home was no mean feat . Definitely give yourself credit for that.👏 😊

[Gandalf2 in reply to HSE_Survivor]

It was before Enc. I couldn't do it now. Foreign holidays are out of the question, it's hard enough getting the right meds in the UK. Ever get the feeling that staff can't be bothered to read your/his case notes?

[HSE_Survivor in reply to Gandalf2]

😞I think it all depends on the city you live in, unfortunately. I’m lucky as we have Walton Centre for Neurology in my city . I couldn’t ask for better treatment , and I am monitored/ reviewed .

My husband and brother have the opposite experience with the NHS treatment for bowel illnesses . The policy seems to be to scan, treat and discharge ASAP , even in severe cases which have required surgery . It doesn’t make sense , as this is why people end up in A&E.

[Gandalf2 in reply to HSE_Survivor]

Yes the NHS like to send you home ASAP. I've had wonderful care and the 'can't be bothered' care. Maybe the matron takes the night off and nobody says anything so they can sit around the desk. Walking the wards is unheard of it seems, at least in Leeds.