On this day : This morning 1 year ago... - Encephalitis Inte...

Encephalitis International

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Heavychunky1 profile image
12 Replies

This morning 1 year ago on 10th April 2021 at 04:06hrs I started to feel flu like while at work bus driving, just generalised ache of muscles and a weird nausea feeling starting with a chemical alcohol smell, this continued throughout the day every few minutes, finished work at 14:23hrs where my partner picked me up, where I still had muscle aches and walking was a little off setting, got home went to bed with what felt like full blown flu for which myself and partner treated as such, called in sick for work on the 11th this is when my partner called the doctor, visit blood pain killers you will be fine, anyway some time passed another doctor call and sent to a covid assessment centre, go home you will be fine, on the 17th april 2021 symptoms got worse headache not moving and severe worst iv ever felt type pain, was vomiting every so often and it contained what doctors call coffee grounds, partner called do for again and was told to take me to neurology block at hospital for checks, the walk to the car was off balance and vision was playing up could not see the car even though I was right at it, 7 days after symptoms started I was admitted to hospital neurology , diagnosed originally with a tumor after it scan showed a mass which was then changed to encephalitis after the MRI, 1 week later lumber puncture spinal tap to diagnose hsv encephalitis, now I am back to driving after a bumpy recovery to start with which is still on going , only real annoyance after affect I seem to have is my moods and temper is quicker , working on that with my own doctor she is great, and a periodic chemical alcohol smell with nausea affect similar to 10th april 2021, which only lasts a few seconds , still have neurology doctor visits and a continual reassessment MRI scans for the next 24 month, onwards and upwards still

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Heavychunky1
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12 Replies
kitnkaboodle profile image
kitnkaboodle

Hey there. It sounds like you’ve made wonderful progress over the past year! I’m happy for you and hope you have a full recovery eventually, if such a thing is possible after E. 🙃

Take care,

Kit

Paula-38 profile image
Paula-38 in reply tokitnkaboodle

There is such a thing as recovery, although it's different for everyone and for those who can make a good recovery, it can take weeks/months/years. It took me most of my life to get to where I am now. OK I'm not 100% recovered but I'm almost there. If it wasn't for my refractory OCD, my slow processing speed and 1 or 2 aspects of language I'm okay.

kitnkaboodle profile image
kitnkaboodle in reply toPaula-38

Yes, absolutely, we can eventually manage and compensate after brain injury. I meant that *full* recovery (100% back to “old self”) isn’t a particularly useful concept. Early on, doctors told me I’d “fully recover”—and quickly. Now it is apparent I will have very long-term, if not permanent, issues. But my story is not Heavychunky1 ’s story; it sounds like he is on a great trajectory!

Paula-38 profile image
Paula-38 in reply tokitnkaboodle

Hi Kit,

It brings a different dimension for me, it has always been the same me, although I can see where you are coming from. Because I was 1 when I had encephalitis, I have only ever known the one life and that was "after encephalitis".

kitnkaboodle profile image
kitnkaboodle in reply toPaula-38

Like I said, everyone’s story is different. I almost drowned when I was 3 years old. Miraculously, I did not have any physical consequences from that (as far as I know), although I could have easily had brain damage from lack of oxygen or something like that. If that had been the case, you and I would have been much more similar. I do understand your perspective—as well as any outsider can. I was just sharing mine.

And my opinion that “full recovery” isn’t a useful concept is relevant to someone like you, who doesn’t remember a life before E. There’s no “old self” for which to seek and yearn. Others might disagree, but I think your approach in coping and managing is more adaptive in recovery than the seeking and yearning option.

Hope that clarifies things.

Kit

Paula-38 profile image
Paula-38 in reply tokitnkaboodle

Thank you so much Kit for your understanding that makes me feel better now.

I'm so sorry that you almost drowned when you were 3. One of my cousins almost drowned when she was 5 but thankfully she is okay and has a family now.

OldGnome profile image
OldGnome

Hello HC1!

Looks like year number two of your recovery has begun! It sounds like you are like me, "fighting the good fight" and enjoying the progress, as slow as it may be.

Here's hoping that your second year will be filled with greater strides of progress!

OldGnome

Paula-38 profile image
Paula-38 in reply toOldGnome

I totally agree with OldGnome. 👍

I must have been 3 when I was in yours and HeavyChunky's position, so it brings a different dimension for me.

I hope HeavyChunky "keeps fighting the good fight" as OldGnome said.

Never give up hope! Live in the present and stay positive!

Paula-38

sleepless68 profile image
sleepless68

Hi Heavychunky1,As you are younger I hope you will continue your recovery and feel in much better health soon.I guess I was lucky because my mum had a stroke 23 years ago so when I started with severe headache she paniced and got me to hospital within 12 hours of symptoms.Because of her stroke they checked me neurologically straight away and picked it straight up. I m 18 months on now and still worry every time I get headache but am thankful to be here and try very hard to enjoy life.Sending you love and best wishes and try and let anniversary of E to go and focus on anniversary of positives.take care.x

Wygella profile image
Wygella in reply tosleepless68

As each headache goes your fear will ease. But so scary in the early days. Honestly 18 months is still early days.

Wygella profile image
Wygella

Hi all. As usual great replies from you all. Just to add that I’ve personally found anniversaries to be a positive thing as I can think about how awful that day was. So sudden after months of vertigo (diagnosed as ear infections and treated with antibiotics). So anniversaries enable you to see the steps forward and realise that next year will see yet more improvement.

You’ve done so well in a year HC so I’m sure the next and the next will see you in that new recovery world which as I’ve said before can taste sweeter sometimes than before E because we nearly lost it. Down times still come, crashes still happen but each time we’re stronger mentally and physically to get over them.

Paula-38 profile image
Paula-38 in reply toWygella

I totally agree with Wygella. ❤ I had Encephalitis the day after my first birthday so I had no experience of life pre- 'E', and I have only known the one life "after" 'E", which I don't think some people understand that, it "seems like" Kit may not understand and so many more people.

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