I thought that today, being World Encephalitis Day, I should finally write the post that I have been meaning to write for months. I can’t believe it’s been six months since my last update, and my oh my how different things are now!
A brief recap: my husband was diagnosed with HSE In June 2021. He was in an induced coma for two weeks and in intensive care for a further three. After two weeks on a ward he had his trachy out, but then things went down-hill again and he was diagnosed with Autoimmune Encephalitis, triggered by the original HSE. The setback was massive and almost more frighting for me than the first time round. Eventually he went on to receive what I can only describe as a transformational Plasma Exchange treatment back in ITU, and he’s made steady progress ever since.
He was finally discharged, after 4 months in hospital, at the end of October (which just so happened to be our wedding anniversary), has since received Rituximab infusions and – the hope is – that’s now it!
His recovery has been utterly incredible. Eight months ago he couldn’t walk, talk or breathe unaided; five months ago he was learning how to swallow and struggled to remember so many words; four months ago he could hardly spell or remember the names of letters (he’d practice reading out car registration plates on our daily walks around the village) … and now he’s working a full-time job and teaching guitar again!
Since coming home our main focus has been re-sorting all the information in his head. We’ve thought of it like a filing cabinet which has had all the drawers pulled out and tipped over the floor and we’ve been gradually reorganising everything. Drawers we visit regularly are now all sorted, but every now and then we find something we’ve not looked at since before he was ill (“Where is the Eiffel Tower?!”) but then we talk it through, he recognises the correct answer, and that’s another thing back in place. I firmly believe that nothing has been truly lost, but just that some things are, and continue to be, more complex to re-organise. I know we’ll get there eventually though. Other things however may never come back – his sense of smell for one (and therefore his taste), but as frustrating as that is, I know he’d rather that than lose almost anything else.
All-in-all he is remarkably and wonderfully well. He is still the same person: a hugely talented musician, a loving and attentive father and my best friend. I am so hugely proud of him, of how hard he’s worked and how far he’s come and we’re all too aware of how fortunate we are to have come out the other side of this horrendous ordeal relatively unscathed.
I’m extremely grateful to all the words of support received on this forum in my darkest days last year and I hope that those going through similar situations might read this post and feel the same sense of hope that you all gave to me.
Wishing you all good health, happiness and love xx
Written by
every_cloud
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This is wonderful news! Thank you for sharing. I want to add a bit of hope: it took me several months to smell and taste even a little bit, and it took 16 (!) months for me to not be disgusted by the smell and taste certain foods like chocolate. I particularly like dark chocolate again, which is something I thought I’d hate forever. Time heals! ✨
Hello every_cloud, it's great to hear the update!!
I can't believe it's already been 6 months since your last update. Things were really not going well at all back then. I was very curious with regards to your husband's situation but I did not dare to ask, for fear that things could have gotten worse. Since getting the "big e", I have trouble with comparative lack of emotions. While I want to appear to be the caring person I actually am, I don't want to accidentally say the wrong thing, at the wrong time, etc.
I actually breathed a deep sigh of relief when I read your news! It is nothing short of miraculous!! For someone who had such a severe bout with the "big e" and after being in the hospital for such a long time, I truly marvel at his recovery in so many different areas. Your husband and I must be two very tough blokes, as is said in the UK, if I am not wrong!!
The first 2 years of recovery can be quite a series of highs and sometimes lows, but it sounds like you already know this, and are ready for all of them!! The senses of smell/taste might be gone for now, but they might return, as kitnkaboodle has attested to. If I could, I would send you both some great chocolate made right here in Pennsylvania! Actually, sometimes I wish my sense of taste wasn't so good. My appearance is approaching that of the hedgehog in the attached pic!!
Hoping that all continues to improve for your husband!! You must be very very happy!!
Hello OldGnome, Thank you so much for your heartfelt reply. Your words were perfect.
The roly-poly hedgehog reminds me of myself as I quite literally put on the same amount of weight this last year that my husband lost! Chocolate is my vice!
A I wish I could give you a hug. Thank you for your kind words and good wishes. I hope you are OK and that everything is continuing to go well for you. xxx
Hi Mrs Every Cloud, thank you for your uplifting post. Great to hear of your husband's recovery. My wife was wondering if I was ever going to get back to normal, memory, taste etc. - it seems the memories are there but badly organized. I'm still very prone to overload from sounds and events but that makes music very alive so that can be a good thing. You are both very brave and an inspiration to readers on here. Thank You. G2
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