Reliving the memories

[Heavychunky1]

When I was admitted to hospital with hsv encephalitis my partner started taken notes in a book of everything that happened from how I was feeling to what doctors were saying and asking, it’s compulsive reading with dates and times of scans , tests , questions she has asked hospital staff . Everything from start to being discharged , and a whole new section on how I have been since from moods to sleep pattern and eating, anything Iv complained about from pain to uncomfort , to my video calls with occupational health and calls from doctors and Psychiatrist, everything is noted even the days that I managed to sit up and eat to managing going out to the park and getting a coffee,

It’s nice reading it as it sheds some light on it for me as most if not nearly all I can’t remember, kind of emotional reading it that’s for sure , even noted when I pulled the pic line out my arm and that I was getting angry with doctors and nurses when admitted as they kept asking me to squeeze there hands apparently I said some things to them in an angry way , I can’t remember any of this only thought is this is where and when the effects were starting to get worse and affect my head more , a lot of notes taken on things Iv done that resembles the way I was from hygiene shaving etc

[GreenBamboo]

Hi HC,

You are so lucky to have a diary to refer to, It must be cathartic to read, but quite emotional.

Even now, 8 months on, I grapple to try to remember what happened to me,I even considered making an access request to the hospital for my notes as I feel it would help me piece events together.

I was in hospital during complete COVID lockdown an so had no visits during that time and so my husband couldn't track what was happening. And of course due to nature of Enc I can't remember in detail!

What a fantastic way to be able to see how far you have come on your recovery. It must have also helped your partner make sense of it all at such a distressing time for them

[sleepless68 in reply to GreenBamboo]

Hi,I was in during Covid and have nothing not even a decent doctors letter.My only memory of first 4 days is my gran stroking my hair and she s been gone 10 years. Woke up to arms covered in bruises and bleeding where I d been pulling canulars out.Fun times. Don t know if could read it if had it tho as find it so emotional change in life.

[GreenBamboo in reply to sleepless68]

Hi S68,

I am sorry to read that you have nothing to refer back to with your experience in hospital. I have memory of some times but find it difficult to piece together order of events.

Looking back I think that not having anyone allowed to visit and talk for me has been more traumatic then I realised at the time. In some respects it seems like it was not real as I do not have anyone to bounce the experience off (although the ongoing side affects remind me otherwise!)

I saw the physco therapist nurse yesterday and found myself in tears relaying what I did know and it was quite traumatic. You think you've got sorted in your head but really the whole experience is packed away in a box ready to be opened again.

I suppose the sense of trauma will subside over time.

All the best!

[EncephalitisSupport Administrator]

Hi Heavychunky,

Thank you for reaching out to the Encephalitis Society. It's lovely to hear that your partner made note of every part of your health journey, we are sorry to hear that you found some parts are emotional. We hope there are a lot more positives and milestones to celebrate no matter how big or small. 😇

[Gandalf2]

I could not believe it when my wife told me we'd been to see Slash the guitarist from Gun N' Roses a few weeks prior to my Enc. I have aboslutely no memories of this. Fancy forgetting an over an hour's concert with one of the worlds foremost rock guitarists.

[Ocean96]

Hi Heavychunky1

Wow that’s incredible to have that to look back on. I hope you can notice how far you have come since then!

My family did something similar as although it’s upsetting looking back on how sick I was… it’s also a look at what I can’t remember from that time which helps fill in the gaps!

I really benefit from watching The Encephalitis Societies YouTube videos and Dawn’s is really inspiring- youtu.be/mO-x5tyrPdc(Not working as expected?)

Maybe one day you’ll share your story!