A comeback is possible

[The_Bass]

Happy New Year all!

Firstly, I want to say sorry in advance to anyone reading this who is having a very difficult encephalitis or post encephalitis time but my thinking is, certainly for any families going through the long horrible journey of encephalitis now, that this might help you look to a potential positive future. 

By back story is I had encephalitis – and had it twice within a couple of months which is rare but not impossible – and spent nearly four months at hospital over the summer of 2021. I spent many weeks in an induced coma and as I recovered, I wasn’t able to speak, wasn’t able to eat, attacked nurses and doctors, had scores of the most vivid dreams (that I still remember) and only really became anything approaching ‘normal’ until I’d had a five day plasma exchange treatment. I found out later that at least one doctor thought I would be stuck in a wheelchair and unable to talk for the rest of my life.

But, I did get home to my wife every_cloud and two little boys. Along the way I relearned many things like the alphabet, what numbers are called, how to spell words and so on and so on. I learned first hand what many people will say – you ‘just’ need a lot of time. A few months after returning from hospital, it was a New Year and I returned to my full time job, working from home three half days a week and adding a half day each week until I was back to full time hours. I’ve also always taught guitar and bass in my spare time so picked that up again too, just trying to take it steady. But, I cried and cried so many days on end feeling so frustrated, so hard done by, asking myself “why me?” again and again and again. 

I slowly crawled back to ‘normal’ and beyond. I had the most fantastic support from my wife, family, friends, colleagues and the amazing NHS in the UK. I’ve had conversations with a psychologist who’s helped steer me in the right direction. Things improved: my spelling, my ability to talk, my stamina, my positivity. I’d say look for little wins – what can you tick off as even a small success each day? And then the bigger ticks: I moved us to a better mortgage, completed my own tax return, finally finished editing and releasing a video of the last gig my old band had tried to put together – having to completely relearn how to use the video editing software all over again – and then ended the year with a temporary promotion at work to take my manager’s job as she leaves us soon – a job I had to apply for and interview for, something I barely had the confidence for at the best of times. 

Some things are even better that before: my teaching as I am more mindful of how other people might think if they’re finding anything difficult (including playing a chord!), my appreciation of nature, the people around me, my love for my wife and family and friends, my view of life as unpredictable and fragile.I’m also due to head into the hospital I was at for so long to play some background guitar for them in wards I lived in. I’ll also give them my firsthand perspective of having been a patient there with encephalitis to help them work with patients with any similarities in the near or not so near future.

My point is, I do not want this to look in anyway like a brag – what I want to say is, comebacks are possible, appreciation of certain things can be increased and while encephalitis is always life changing but there can be positive endings … if you’re unlucky but lucky. 

[Harper1]

I SO appreciate this positive, encouraging post right now. Thank you! I’m happy to hear that you’ve returned to baseline, and in some ways, have even improved on things pre-E.

We’re just past 1 year of recovery with our 6 year old son. He’s made huge leaps since his initial hospitalization, but is nowhere near peer-level yet. A question for you: are you still seeing lots of progress in the second year of your recovery, or did most of it happen in the first year? (I see you’re about 1.5 years-ish out now.) We’ve been told by neuros that we can expect the bulk of our son’s recovery to happen in the first 1-2 years.

Happy New Year!

[HSE_Survivor in reply to Harper1]

We were also told the most recovery is in the first 2 years . My first year was a depressing struggle due to extreme fatigue and my very poor short term memory. For me the greatest recovery was in the second year. It felt like the memory conductors in my brain had finally begun to re-connect and it was uplifting for me and my lovely family . I was diagnosed in 2013 and we have definitely continued to see progress in my memory since then ; I can even know more correct answers than my husband when we watch TV quiz shows together 😊. So definitely don’t feel that your son’s recovery will stop at the end of the second year.

[Harper1 in reply to HSE_Survivor]

I can imagine what a depressing slog that first year was (one wonders: is this my life now?), but it's great to hear you made it through, and that Year Two was such a breakthrough year for you.

For us the first 6 months of recovery were basically hell, trying to just get through the day with our son's emotional volatility and confusion. The first year overall was about bringing back basic skills (toilet-training, dressing himself, holding utensils, basic language--he lost all speech for months, etc.), and getting off his seizure meds and Ativan. It took a good year of medical leave before he could return to kindergarten, in October of this year, and he was sloooowly eased in. (And has a full 1:1 T.A., an SLP, an OT, a Special Ed. tutor, etc.) Now we're hoping in Year Two he will be well enough to start regaining academic skills.

It's fantastic that you've still been making progress after the first couple years as well.

[The_Bass in reply to Harper1]

Hi Harper1 ! The thing with encephalitis is, no two people experience it the same way (although there are some common similarities) so no comebacks are the same. I think the improvements are probably most noticeable in the first two years but it definitely doesn’t have to stop there of course. I still can’t smell but I never rule it out ever returning despite the doctor telling me it is less and less likely to return as time passes. I try to be positive too – I’ve learned the biggest live lesson imaginable and have it at the back of the mind with my boys all the time.

Also, with you son being 6 – I’ve a 6 year old too! – there’s so much to learn ahead for any 6 year old of course, let alone having had encephalitis or not. I appreciate he’s got to find the best way to learn that works for what he’s been through – it’s finding that best way through trial and error I guess. My own 6 year old has been a great reader but he seems to have his own way of reading and writing words these days that no-one has their head around to help him improve. We just have to try all sorts.

A doctor might be able to do some sort of IQ test with him to see what areas he’s best at understanding (e.g. more spoken word, written word or pictures etc) to build his learning around that?

[Harper1 in reply to The_Bass]

Hello again The_Bass,

It's odd what returns and what doesn't--funny that you've regained almost everything but sense of smell! I hope it comes back too, eventually. I've read of people (on these boards and elsewhere) regaining abilities, even 5+ years out, much to their surprise.

There's definitely a different set of challenges for adults recovering from E, vs. children. You and I are around the same age, and I'm sure it would be incredibly stressful to be an adult in recovery, wanting to return to "normal,"--or something approximating it--as quickly as possible, so you can continue to provide and care for your young family.

One of our issues, with a now-6 year old, is that there isn't much of a pre-illness baseline of ability to compare him to, so we don't know what our recovery goals should be. Our son had Autoimmune Encephalitis, and we think now, in hindsight, that he was experiencing low-level brain inflammation a good year before it reached an acute stage, and he began having obvious seizures, and needed hospitalization. We are guessing this because he stopped acquiring language, and the ability to form sentences, around age 4; within a year he had stopped talking altogether and exhibited numerous other bizarre behaviors, before hospitalization and formal E diagnosis at age 5. His speech now, though primitive for a 6 year old, Is better than it has ever been in his life.

He did a lot of testing upon his return to school, including several IQ tests with the school psychologist (to determine his disability supports for school). They haven't been that helpful yet, alas, largely because he's so hard to test--he typically will not pay attention long enough to answer questions. I believe he scored a 36 (!!) on the last one, which the psychologist said was probably because she couldn't get him to stop darting around during the test, examining toys and other interesting objects in her office.

We were told that the ADHD-like symptoms are common in children recovering from E. We hope they wane over time. Did you/do you have problems paying attention now, as well?

[The_Bass in reply to Harper1]

You’re absolutely right of course – having encephalitis early in the life must mean so much less to compare too. In any case, I’ve found, whenever possible to not compare to pre-encephalitis – life now is life now and the new normal. Easier said than done sometimes but that’s my policy anyway. My three year old son, who turned two while I was ‘only’ in my first month in hospital, will never know me any different to the post-encephalitis me. Thankfully, I’m lucky I am the same person as before … except for the slight issue of having had encephalitis if that makes sense!?

There are still lots of things I find more tricky than before or just unusual – there must be some medical logic; I’d love to hear it! – but, as I say, these are relatively small in the grand scheme of things.

Paying attention – I think this was more limited in my early recovery days but has got better. I remember one medical expert working with me at hospital in my last month and commenting on my sense of humour over the 90mins he’d been with me! Bizarre having someone medically note your sense of humour but I’ll take all those wins and ticks, little and big!

Wishing you and your little one all the best. It’s a challenge at the best of times with any 6 year old and harnessing their attention. There’s one sat in the bath next to me right now!

[GreenBamboo]

Hi The_Bass,Your story is so positive & uplifting.

It shows that when someone is in such a desparate situation there is always hope. Sadly there will be others where you were today starting out on their Enc journey..

Reading all that you have achieved made my head spin! Just so fantastic to read.

I enter this year, the beginning of year 3 post enc, with renewed positivity and excitement as to what I can achieve. Looking back at my desparate days I cannot believe how far I have come. I try to recognise & appreciate my "wins' along the way.

Like you share,there are some things that are better post Enc and for me I feel so fortunate to have had the recovery that I have and I notice and appreciate the little things. I also feel better equipped to understand other peoples struggles.

I can only imagine how proud every_cloud must be, witnessing your progress and by your side every step of the way!

Wishing you continued health & all the best for 2023!

[The_Bass in reply to GreenBamboo]

Thanks GreenBamboo – the thing the psychologist told me that I found so helpful was to think about wins big and small and I certainly think that’s a useful approach to any comeback. Early on that might be unloading something from the dishwasher to the right place or making a sandwich. It’s all relative. Little wins, move on from there and don’t beat yourself up if anything doesn’t go to plan – it’s not your fault. I definitely used to blame myself along the way too.

And comebacks aren’t always obvious or sequential – one day goes well, the next not so much. Over time … fingers crossed, as you say, you can look back and think how far you’ve come.

[HSE_Survivor]

Your story will give hope to to many encephalitis survivors and their families. Thanks for sharing and happy new year ! 😊

[The_Bass in reply to HSE_Survivor]

Thanks HSE_Survivor – happy New Year to you too!

[Wygella]

Thanks for this positive and upbeat post. You’ve done fantastically well. Having had it twice in quick succession and in hospital 4 months to back to work and teaching guitar is actually awesome. It does seem like you’ve had a lot of support from your NHS and psychologist which has clearly benefitted you a lot.

I’m over 4 years post E and as I know I’ve said before, the NHS were absolutely amazing while I was in their care. Their prompt action when I was taken to A and E and for the weeks afterwards undoubtedly saved my life and my brain. However once I left, I saw my neurologist 3 times. And my doctor once who told me that the GP surgery had to have a case meeting about me as no one had come across meningioencephalitis before (my official diagnosis).

On the plus side, it meant that I came of seizure drugs after 3 months and have made my way back up with the help of the Encephalitis Society and later with this group.

Progress doesn’t stop after 2 years. It continues, but is less noticeable. Those first two years are probably the most significant. But then the slow improvements happen. So I couldn’t sing until about 6 months ago. Now I sing a lot! I couldn’t bear to have music on (I so missed that). Now I love it. My memory still does odd things at times but as I think Old Gnome said, some things everyone does we just attribute to E. Oh and my taste buds have settled down a lot

Like everyone, I still have the downs and the crash days. But each one is less severe, last less. And the ups are so happy making. The joy in small things seems to be common to all of us who are on that steady recovery path.

For anyone starting this journey, or struggling in those first months and years, life doesn’t go back to ‘normal’ but a new way of life comes which can be better than before because of the appreciation of things we took for granted.

Apologies. That was long and a bit wordy so just to reassure you I laugh a lot these days! Take care all.

[The_Bass in reply to Wygella]

Not too wordy Wygella and this is why I love this group as no-one else – doctors or family – can say things that relate to us in the same way as fellow E sufferers! I really relate to so much of what you’ve said here. Certainly, “the appreciation of things we took for granted” and “joy in small things”. In terms of seeing the neurologist, I’ve really only seen mine once since leaving hospital, although due to see again next month. I do sense they learn a lot from us as no two cases of encephalitis are the same – this said, a lot lot more is known than ever before and the Encephalitis Society are playing an integral part on the mission to improve common knowledge of E.

[Wygella in reply to The_Bass]

You are so right. I feel this is a safe place where people will ‘get me’. I also think that because of the effects of Covid and the existing research done and continuing to be done by the Encephalitis Society more and more is being discovered about similarities and differences in the after effects of both.

And so. Here’s to onwards and upwards with not too many downward slips on the way.

[AliBBeerDrinkerSing]

This is a lovely post and so inspiring. The last part reminded me of a running too I saw on a race yesterday: ‘The comeback is always stronger than the setback’. We have come through so much and it is important to celebrate the wins.