I was diagnosed with E in April 2008. I thought it would be benificial if we started a quarterly assesment of our symptoms to see were we are at a particular phase of recovery. Also since progress seems to be in months rather than days we can give a more define picture of our recovery that can be clearly observed. At the 3,6,9,12 month ect.
I am currently at a point were I am just starting to accept my illness as real. I am going through a time of deep depression and anxiety which I think is a turning point. I am having most of my difficulty coping with my perseption of the world and people around me. I can't explains yet how things seem differant but they definatly are. Only after reading other post here have I come to realize that I'm not crazy nor going crazy although it has felt this way and still dose somtimes. I have days were I feel I'm starting to get on top of things and have even thought I had begun to beat this only to wake up the next morning right back were I started. Can't concentrate very bad memory and a sense of altered reality or conciousness. But I am not giving up. I have 4 young children that need there daddy and faith in Jesus my Lord and Saviour
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post encephalitis syndrome 6 month mark
- By Paulg
- Posted October 8, 2008 at 6:07 pm · 8 replies
- In Life after encephalitis
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- By lemonplegde
- Posted October 8, 2008 at 9:36 pm
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well i just wanted to send a note to encourage you..you are still in beginning stage of recovery and time is on your side...time is a healing element with this illness..it will be great to check your progress over time...take care,
tish
- By Paulg
- Posted October 8, 2008 at 10:02 pm
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thank you Tish I really needed to hear that. Lord bless you
- By IngridGuerci
- Posted October 9, 2008 at 7:01 am
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Welcome Paul! Some of the residuals get better and others stay with you forever. Some of us cannot work anymore; others are able to be back at their old job. Just keep telling us how you're doing and asking questions.
Ingrid/NYS
HSE 12/95 (I was 45 years old)
- By jerseagal
- Posted October 9, 2008 at 8:55 am
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Hi Paul
You will find support and encouragement here.
Things seem different because you may still be rewiring. Every time you do something again for the first time since E you are pathfinding. You are making new connections for old messages. Soon those new connections may not seem so foreign. You will adjust to the new pathways.
How to stay positive? Choose to focus on working towards an improved long-term outcome instead of focusing on your current status. Take small manageable steps. Look back and take joy in how far you have come since the onset of E.
Work on strengthening the skills that are most important to you. If it is short-term memory find a program that helps in developing it. Limit time on task and slowly increase it. Don’t try to rush. Don't be discouraged.
You learned to walk when you were a baby. You stumbled you tottered, you fell, you held on to things for support but you slowly learned all the steps it took to walk from point A to point B. Then you built on that skill and learned to run, jump, skip, dance.
Relearning is almost the same except we already have the experience and knowledge to draw on, we need to attempt and practice our skills to make new connections. We stumble, and totter, we fail and try again, and again. We hold on to things and the hands of loved ones for support and assistance.
If it your weakness includes reading and writing skills same holds true. A sentence at a time, then a paragraph at a time, then a page. It should be something that is of keen interest to you.
Learn what you can about what your brain is doing . My recommendation would be The Brain That Changes Itself by Dr. Norman. Doidge.
- By MichelleN
- Posted October 9, 2008 at 10:12 am
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Paulg I think your idea of figuring out what a certain amount of time has changed us. I do that with my medical journal. I think I'm going to be 4 years next month, but I'm not sure.
Just in the last year things have greatly improved for me. I have found things that go around some problems. I did that with my medical journal and just realizing I did that helps me not have so much depression.
Depression is a thing most of us seem to go through. I know I did. I even wished I hadn't survived, but that is definitely better. Now I tell people when they ask that I was given a chance to get rid of the sins I did and make sure I don't do them again. (I only mention that here because you mentioned Jesus.)
Now I like this me much better and I thank God for my E. Not every problem, but at giving me more time with my loved ones. Keep working like you are and you will get better even though it takes time.
Michelle
- By SSFR
- Posted October 15, 2008 at 9:41 am
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Wait and remail cool. U are so lucky. I could not read ABCD for next 12 months and now trying to start "How to write". Have a look what others write and u will be very very comfortable.
- By Joey
- Posted October 17, 2008 at 4:51 pm
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Paulg,
Hang in there. I can surely second what you have written as it might as well been me writing what you did.
I am just hitting the two year mark and yes I have made dramatic leaps and bounds towards the healing/recovery finish line.
I will be honest and tell you that I won't cross this finish line as I have accepted that i am different and will never be the same. Nonetheless I still run for the finish line. Paulg, there was a time when I couldn't run a quarter of a mile without turning it into a circus act. Now I am training for a marathon. I just ran 11 miles two nights ago and my longest was 15!
I too have the "fog" and I refer to it as a medicinal haze thanks to the 8 pills a day I take.
Depression is huge as you, and all of us here are different and sometimes the change is not so good. Except it as God will never give us anymore than we can handle.
I am happy to see that you have kids! I have 3 of my own and love them to death! They have helped me heal as because of their age they don't judge but rather accept you for who you are.
On a serious note, please look into marriage counseling even if you think you don’t need it as the second person that is affected most would be the spouse. I lost my spouse as she filed for divorce. Intense marriage counseling may have prevented this. What's done is done and I have moved on knowing that someday I will find the true love of my life.
Take Care and God Bless,
Joe
- By Paulg
- Posted October 17, 2008 at 5:00 pm
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thanks joe. That is an inspiration. And yes I understand about the spouse issue as I am dealing with that very issue thanks to E. I pray it doesn't come to that. But I understand how difficult this is for her.
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