My recovery was going really well over the last few months. I had built up my energy levels and my brain had slowly got used to louder/busier noises so i could socialise with my friends. Moreover, i was starting to do more hours at work due to improved concentration and energy levels. I was even flying upto Aberdeen for surveys ar work, flying up too which i thought id never be able to do again. My first flight gave me headaches but my brain got used to this in the end. I was living 80% of my pre encephalitis life, which is more than likely my new normal. The only after affects from E was headaches, a tingling around my brain and a sore back from several lumbar punctures. Nearly a year on from my diagnosis i am still yet to see a consultant neurologist.
However, in the past few weeks i had a viral infection which has left me exhausted with chronic pounding headaches. Feel like i am back where i was months ago, all my patience and recovery just gone. Thought my nightmare was almost over.
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rhols96
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Hi Rhols, I am really sorry to hear of your setback. It seems us enkers have a very patchy and uneven recovery. I was doing quite well a year after my discharge from Leeds Infirmary - great care by the way - angels in disguise.We were walking round the houses here every evening, spotting foxes and wonderful sights of Nature. We even went to stay in a caravan in Filey and thinking Covid was on the run we went in a cafe and taking off our masks we had a cup of tea and a toasted teacake.Somehow we caught Covid and I developed a chest infection too. We just about made it back to Leeds went for tests, took anti-biotics and I collapsed into bed unable to do anything in the massive heat - back to square one again.
Very slowly I'm on the mend, still in bed, just going to the toilet, light meals, Vit C and poking around on the internet.
I've not been jabbed - it doesn't seem to help much anyway and the stories of heart failures etc. are pretty widespread.
We have almost no immunity it seems, have to avoid everyday contacts unless masked, get supplies delivered and expect recurring infections one after the other with clear patches in-between.
I'm still testing positive for Covid - but compared to Enc's ups and downs and other issues Covid is easy going - just fatigue, depression and inability to complete simple domestic tasks.
My wife is holding the fort but a return to pre-enc health and activities seems very unlikely - do a little bit, fall ill, spend time recovering and then return to gentle exercise, chores, etc. Adjusting expectations to a new situation is very hard when you are suffering already. I'll be happy just to be able to walk around the block again.
We bought 3 bladeless pillar type fans (Dereo make) and should the heat return we will be prepared - one is for a severely disabled lady neighbour who has a broken back fitted with screws and rods. We need iron resolve and careful living it seems just to get by.
Our support took 18 months to arrive after getting onto my GP. Our social worker has helped with a medicine dispenser, physio, psychologist, psychiatrist, pain relief nurse, repeat prescriptions, blue badge, bus pass and protein drinks - I still have no sense of taste.
The sights and sounds of a heavy population, with cokes, chips and pitbulls etc. is a nightmare. In comparison I'm doing OK considering!
Best of luck, take it easy when possible and avoid stress and crowds etc. My heart goes out to you. G2
Hey, thanks for response. I also got covid during my good stage but shrugged it off like i didnt really have it although i have had it twice before as well as 3 jabs!
Hey there. It’s a bummer, but the setback is absolutely expected. Par for the E course. It sounds like you were doing well—maybe even too much—and your brain and body might be asking for relief. You still have a brain injury. (Aside from the fact that any illness, regardless of type or cause, feels worse after E.)
Like I told an E friend the other day: It doesn't seem like it now, but this will pass, and you'll feel a bit better for a while—before entering another rough patch. So it goes. But, over time, I've found that the bad parts get shorter, or at least more tolerable, as we accept what happened to us and learn ways of coping and managing.
Wow, it sounds like you have made a comparatively marvelous recovery from your bout with the Big-E!
Hopefully, in time, you will at least get back to where you were after your virus contraction of a month ago.
I feel a bit like you do at the moment. While I did not improve to the point that you did, I was adjusting to my "new normal". Then this past Tuesday I started to feel very poorly. Long story short of it, I used one of the Covid tests which indicated that I had contracted the Covid virus! I am "fully vaccinated" as well, with ID proof card from the CDC, etc.
Quite a lot of people I know who are also fully vaccinated have suddenly contracted the covid virus. This area has also noticed an increase of positive tests, and quite suddenly.
Now I am feeling like I did when I got out of the hospital with the fatigue, headaches, etc. I am in quarantine until Monday and hopefully I will be feeling better soon. Already missed a day at work and although I keep VERY part time hours, it's important to me, to get to the job.
Here's hoping that ALL of us are feeling better, as soon as possible! And be careful with that heat!
I'm sorry to say this but I have never experienced pre encephalitis because it was the day after my 1st birthday when I had it so no such thing as new normal for me, it just became normality for me basically right from day 1. I feel absolutely terrible for not having had what yourself and others are going through.
However I'm so so sorry to hear that you are not feeling well again but as Tuesando says hang in there, you have come so far and you will soon get back on the road to recovery again it may take time but patience is a virtue.
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Unknown Cause Encephalitis
