I have the blues

[VJM19]

Hello beautiful community,

I don’t know for you but I’m at this point of my life that I don’t know if I can still dream of a life. I mean to have a job and make projects, have a family.

I was hospitalized last June and now I’m finally independent in an appartement. Was searching for a job (and ready to search for one) when the world crisis of COVID 19 began.

Now it’s just more uncertainties and it’s hard to stay motivated.

How do you deal with this disease of what you’ve been trough since the beginning?

Take care VJM19 xx

[Wygella]

It’s not easy. You don’t say how severe your encephalitis was but I know in the first year I tried to look at small achievements each day and not look ahead too much or back to see what’s lost. I didn’t always succeed! I’m now over 18 months since I was ill and still seeing little steps forward (as well as some going back). So things will improve but Covid isn’t helping.

I really hope you can keep going forward, be as positive as possible and know everything will improve.

[EncephInternational Partner]

Hello VJM19, thank you for joining us, and for sharing some of your story with us. You are certainly not alone in finding all these new uncertainties with the current pandemic challenging.

We at the Encephalitis Society are running some weekly digital support groups through zoom, bringing our community together online to share experiences of encephalitis while we can't bring people together physically at events. If you'd like to find out more about it or get involved, please email [e-mail], we'd love to have you join us.

[Paula-38]

I can empathize, and sympathize with you that it certainly is difficult to stay motivated at any time at all.

Try and think of those things as your future goald that you would like to work towards, rather than trying to put too much pressure on yourself too soon, as these things take time and patience.

You can feel free to read my posts if you look them up, they will inform you about my lifelong journey with Encephalitis because it's such a long story going right back to th e very start of my life to the present day. I had a very positive outlook on life in general but suffered from paranoia, panic attacks, depression, on and off throughout my life. I have had OCD for the last 26 years now.

If you wish to ask me anytime then please feel free to do so.

I hope this helps you s little bit, which is better than nothing isn't it?

Take care

Paula-38

[wherearemypillows]

Encephalitis certainly knocks people off their feet and I can relate a lot to what you've said. But don't give up! I, too, was hospitalized last June and have experienced a lot of ups and downs since then. The "downs" are tough particularly because you don't know what implications they might have on your future/what they might imply about where you are in recovery. But thankfully, I've seen a lot of progress as docs have adjusted my medications; and then I do have "ups" that remotivate me to continue working towards my life goals. The setbacks are quite destabilizing, but I try to remain optimistic for my future because I see an overall trend back towards a healthy baseline.

While things may seem slow day-by-day, it sounds like you've made a lot of progress in the past year. That's something to be celebrated. I've heard from many fellow patients that take awhile to fully recover, but have still gone on to resume their previous activities and continue to grow in their lives. Hang in there. For myself, what I've been trying to do to get through each day is maintain some daily habits (e.g. 20 minutes of reading, journaling, exercise, meditation) and also try to set/reach a mini goal that makes me feel like I've made progress towards a larger goal (e.g. completing the next module of an online course). Feeling that sense of progress, even if the steps are small, helps build up momentum that makes me feel good about myself and thus reduces the feeling of being stuck or uncertain about the future. There's a lot beyond our control especially with the pandemic, but there are still many things within our personal lives that we do have control over. Sending good vibes over to you

[VJM19 in reply to wherearemypillows]

Thanks for taking time to respond like this. This is a very positive vision of life :). Hope the best for you.

[Hidden]

I understand. I was diagnosed 2 months ago after having a seizure. Spent 10 days in the hospital. Now I am having memory issues, short and long term. Headaches sometimes, mostly if I work too long (computer work). I also have trouble with motivation, I just don't feel normal. I think I may have depression also so that is affecting my motivation. My insurance pays for a health coach so I have been having telehealth sessions with her and we are working on goal setting. Maybe try some goal setting, small goals at first, to increase your motivation. I also understand about being uncertain about what will happen. I have scar tissue and no one can tell me if it will heal or not. The hardest thing for me is when all this happened I had just lost my Dad and he was always my rock when things were bad. Wishing you a speedy recovery 😁

[Archer6]

One thing to remember is that you are not alone. Almost 2 years ago I was in the hospital for 2 months with encephalitis and I am still recovering. Life is not easy. I have the blues too. Other people have been ill and gotten better and gone on to whatever they want their life to be. You can too.

There is a tremendous amount of uncertainty in the world today that is magnified by illness. One idea I heard about that may help is to manage expectations. Every morning I tell myself that there will be problems. Some bad news. People upset with me. Bad luck. I try to get through each day the best I can, sometimes an hour at a time. Most days are better than expected. Not as many bad things happened and maybe some good things occurred too. That is a lot better than having a lot of unmet expectations.

You have survived the toughest part. The rest of making a life and a family will be easy in comparison. Hope this helps.