2nd year in recovrecoverecovery from hsv encephalitis. And can honestly say after aaffects are mild with what i am LeFt with . Life sucks . Unemployed and stuck in the house day after day . If i raise an opinion on anything i aaam made out to be ththe bad person. Very little money at all and that hinders eveN trying to get outside and ddo things and go places. With the irritation to sounds , and crowded places. Coupled with the whole being left alone fear . Something iv never had which is annoying and causes anger out bursts. Moods go up aandand down as much as ththe weather. Sick of taken tablets.
Life is life: 2nd year in... - Encephalitis Inte...
Life is life
Written by
Heavychunky1
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6 Replies
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yes 😞
This sounds really rough right now. You seemed to be doing better and fighting hard. Have you tried talking to someone , maybe the Encephalitis Society? If you’re like I’ve been that’s probably an irritating comment right now but I know it really does help to talk it through with someone who understands. That’s not always the people closest to us either. Really hoping things start improving.
I am so sorry you are having a rough time however I am glad you are able to express your feelings. I do not know what it is like to have encephalitis as I am my husband caregiver however I can tell you that I have heard him express your same sentiments. He is tired of only going to doctors and therapy and especially taking all the pills and infusions. He wants to be able to fix things again, cook and he especially wants the energy he used to have. My thoughts and prayers are with you.
I am very sorry to hear about your troubles Heavychunky. I have my six week outpatient's review tomorrow morning. I wasn't expecting any of this. My consultant said the recovery is harder than the illness itself. I have terrible insomnia, and all the encephalitis stuff interacts with my fibromyalgia, a chronic condition. I wasn't expecting to become a needy mental health basket case. Constantly on the phone to the GP. From tablet to tablet, from side-effect to side-effect. PTSD. Anxiety. Tinnitus now too. I really wish you well. Stay strong, and remember none of this is your fault. Somehow this shit arrived in your life. I'm sorry you have to deal with it. I'm sorry I have to too.
Hi HeavyChunky1,
I would have been 3 when I was in your position as I had the sane type of encephalitis as you the day after my first birthday and Status Epilepticus at the same time.
I have been taking medication for epilepsy all my life and antidepressants for OCD for over 20 years now, I don'don't complain about it, it just became second nature to Mr to make it part of my daily routine. I guess it won'won't do any harm to try an antidepressant. I would try anything that was going assuming they don't clash with your other medications
Do you get benefits from the government because you are entitled to P.I.P and possibly Universal Credit, you want to apply for thethem!
Because my OCD has been so profound since 1994 I too have been uunemployed, housebound . I used to have more anger outbursts years ago when nobody knew what was wrong with me .
I hope this helps a little bit. 😊
Paula-38
It all sounds so familiar 
I am 8 years post E and honestly feel like I adapt to the new me all the time. I still find noise and smell difficult but (I know it might sound stupid) breathing techniques have really helped me. Do you find that you can cope any differently when you are calmer or doesn't it make a difference? I have learnt that keeping myself relaxed makes so much difference to me for everything.
I also think the Encephalitis Society zoom chats are an amazing way to meet new people and they have regional meet ups too if there are any close to where you live? Have a look on the Encephalitis Society website
