update on my mum

[lw1990]

Hi everybody 👋

I haven’t posted on here for a while .. I guess I really just wanted to thank every single one of you who read my posts and responded with the help and support i desperately needed during the worse time of my life . I honestly didn’t know what to do or to think during the terrifying months when my mum was so very poorly , but with your guidance and advice it helped me out massively in understanding encephalitis and honestly the support I received from you guys on here was far better than any health professional could ever provide !

My mum spent a total of 15 months in hospital and then onto neuro rehabilitation. She is now home and 1000 times better than she was 12 months ago , 6 months ago , 3 months ago .. every day there are little improvements along with some bad days which is obviously to be expected.

This chat group is a lifesaver to so many people who just feel completely lost . You don’t know how much I needed to hear some of your words at the time . Just to know that somebody understands and can give advice when quite frankly everybody else just gives you vague answers and certainly not much reassurance .

I hope that I can help anybody else in a similar situation in the future because encephalitis is a seriously frightening and daunting illness for everybody involved . Had I now known that things ‘ could ‘ get better , I honestly don’t know how I could have got through it .

Anyway , I will stop waffling on but I hope you are all doing okay and thank you again for everything

💕 best wishes

[kitnkaboodle]

This made my day. I’m so glad to hear your mum is back with you all and that you are all doing better. There are some bad days still ahead, but I hope the good days will soon outnumber the bad ones for your family ♥️

[Tuesando]

you are so welcome. We have all been in the same situation. Every time I walk through the reception at King’s College Hospital I see myself sitting in a corner one late afternoon frantically making my first call to the society those three years ago asking what that disease the doctors had just mentioned to me - ‘encephalitis’ - was. The society told me patience would be my best friend - and they were right. My husband is now much much better and life has return to something that resembles normal

[Gandalf2]

You're not waffling at all. Every word is great, I don't know if I have contributed to the help but I echo your feelings about the value of the Enc Forum. It's great to have hands reaching out in a way that other sources may not be able to do.

[HSE_Survivor]

Thanks for sharing, as it is wonderful to hear about such positive progress. Drs tell us to be patient and that recovery is a long journey, but I found it hard to believe that there would ever be any improvement in the first year I was diagnosed . I would have loved to read an update like yours back then. Your Mum’s recovery will give hope to many people . 😊

[The_Bass]

Hey lw1990 – fantastic to hear about your Mum’s recovery. People say you have to be patient etc with encephalitis but at the worst times it’s definitely hard to believe things are going to get any better. The brain just has this knack for working out a new normal, a new way of doing things.

I‘ve really appreciated this group on my road to recovery but it’s for every_cloud who, just like you, needed to ask those questions, find out more, when there didn’t look like any escape.

Like the encephalitis society, I hope over time more people out across the world know more about encephalitis … it’s an absolute beast, so complicated, so different for all sufferers but the common thread is it’s never straight forward to recover from. The best we can do is support each other as best as we can!

All the best to you, your Mum and wishing you a happy and much more straight forward future!