Hello all,
I’m about 2 1/2 years post recovery from my ADEM episode. I’m still not working, (was an elementary teacher prior) and there are days where I feel like I could work maybe 1 day a week. I would possibly start in August.
But then out of the blue, I feel really, really tired, fatigued. It’s just crazy. I can do so much more, but then I worry that I may not be able to work and take care of my home responsobilities as well. I feel better, and miss teaching, but I’m not sure if I can do it. Can anyone relate? It’s like a mind game, I feel like I can, then bam! I’m down for the count for like 2-3 days.
I am fortunate that we work at home. I'm a lot more tired than I used to be, but I'm also older. If I were you, I would try to work part-time at first. It may help your mental state to be back in the game. There is definitely days I feel like doing nothing, but my husband is good at getting me motivated. I think I'm doing better, because I'm pretty much back to full activities, despite my few deficits. I wish you the best.
Lynn
Oh wow. This gives me insight into the way my son must feel. He’s had ADEM 8 times. I always get nervous when he has bad days thinking he must be sick again. I’ll definitely be more understanding. Thanks for sharing.
Same wondering here: I have heavy doubts on my capacities, career ambitions but young children, my daily routine and my house do decide my energy level.
Keep in mind: not work but ‘sustainable’ work has to be the goal. As long as your daily things still can knock you out, work is not a sustainable option. Not for yourself, your employer, the kids at school (in my case my clients), your colleagues. This issue was made very clear to me in a work assessment of 8 weeks last year. I had so much extra help at home, just to give me my beloved work back. But this was not a longterm commitment. I could not keep up, slept the rest of the day, I was so tired.
Just wait, I know it sounds horrible but if you don’t need extra help anymore, have the energy to enjoy your family, feel like having ‘extra’, then maybe work is a new life goal. Meanwhile please stay calm and take your time. This was the general advice of all medics in the rehab center.
For me: my career has ended (for now) but I try to develop intellectually as well, I read, follow online open source university courses (Coursera). Without consequences for clients or my employer but for my own inspiration. But I am curious as well: who is fulltime at work, fully recovered and doing the same thing ‘as before’? Or has advice on work-post-ADEM? So thank you so much on posting this question!
I was a college teacher. I'm about 2 1/2 years out, and I'm considering applying to teach ONE class online maybe starting January. I'm like you, when fatigue hits, it's overwhelming.
Right now we're trying to sell our house and move. I do things for about an hour then sleep for 2-4! So very tired!
Good luck,
Thanks everyone for your responses.
Lianne, you said it perfectly. “Sustainable” is a great way of putting it. It’s just that I feel better now, but still in no way have my household and family responsibilities down. I do still get fatigued… I just second guess myself all the time, thinking I can do both… but then I’m out of commission for 2-3 days super fatigued, not being able to get it together; and that’s not envolving work! I will give myself more time. Thanks.
I am on full time 10 hours/day 7 on 7 cause I have to provide for my family. A two hour mid day nap helps a lot. Wish I had a choice but…Winter is a pleasure and the hot summer a killer.
It was certainly not my intention to keep you away from work. Work can be such a great pleasure, can give self confidence and some money too. Maybe you can try to get a work assessment in a rehabilitation center, specialized in brain inhuren or diseases. No expectations, no peer pressure. Finding out how to be eficient in your time and balancing between home and your child, maybe some social life, sports.
I started mediation in those days, to get to know my inner battle of this and it helps me coping with it. Yoga, if you can move a bit, might also help you. Fatigue is overwhelming but is your guide as well.
It sure helps knowing I am not alone. I have not worked since my DX 5 1/2 years ago. I get tired but my brain is my biggest problem. My memory is poor. Some days I say some things that make no sense at all! My hubby says I don’t listen. I just don’t retain everything. Very frustrating to him. I would love to work a few hours a week, but don’t know where it would be that wouldn’t mind if I made mistakes. Does anyone else have memory problems? My neuro said he thinks I have done all I can to improve. Hubby says I don’t try hard enough.
Lianne,
You helped me see that it’s ok not to be able to go back to work just yet… I still can’t keep up with my home and family stuff, so how could I give myself to work too?
The thing is, I’m able to move, and I go on hikes, bike rides, walks… But that’s the frustrating part. I can do so much more, but just doing home and some social stuff like this tires me out. So that’s my battle. If I still have my fatigue, and I’m not working, I can only imagine how it would be if I was.
Thank you.
Papageo,
What do you do for a living if I may ask? Were you hospitalized when you had your ADEM episode? I ask because I wonder if it depends on how severe we were attacked, how well we heal, or what symptoms we still have that impedes our ability to work or not?
Thank you.
I am a hotel manager. Yes, I was hospitalized 4 times and had two relapses, the second one quite severe. I feel dizziness constantly, and my ends (hands and feet feel numb), my whole body is in pain but the optical nerve was not affected. Obviously my overall ability has been affected as I also have some cognitive problems. But I keep going till I drop! What to say? I have a family to take care of so my options are limited though I often wish I could withdraw from everything, something I would have done had I been on my own…
Papapeo,
Thank you for sharing your experience. I guess we are all different when it comes down to how we are going about our lives after ADEM. Best wishes for you. 
I guess it is like a finger print. Different on each person. I am not trying to play superman, I think I was just lucky. I am taking care of my diet, trying to avoid saturated food, taking some vitamins such as B complex, omega 3 and 6, cold olive oil, lots of fish, fruit and veg and sun (or D3 vitamins during the winter) no smoking, a glass of red wine 5 times a week, keeping my fingers crossed that I won t have to deal with another relapse… By now, close to 2.5 years into it I have made an 85% recovery. If that dizziness would go away I would be like a born again man!
I agree...I'm about like you. Either I wasn't as severe (seemed like it was, at the time) or nutrition and exercise has made a real difference in my 2 year recovery.
This is new to me: following a diet would help in ADEM recovery? Or is this a basic diet which would benefit also healthy people? Like the general standards given of 2 pieces of fruit, 200 gr vegetables, no red meat etc? I would love to hear experiences of (cognitive) excercises, diets and more in this post ADEM.
To me finding and keeping myself to a balance in relaxation, movement, cognitive excercises and rest is the lesson I learned and still learn. Every day again…
I have been taking Vitamin E and Vitamin D beyond my regular daily vitamins. I spoke to my neurologist about doing that cognitive game software - but she said to find free games online rather than pay for it. I have been playing logic games and strategy games and memory games. Some days I do well, others it's a struggle, but I figure it's worth a shot to try and "re-route" synapses in the damaged areas.
I think I am finding some improvement, slow as it is.
Good luck, Laura
Saturated fats are always harmful to the nervous system, especially to people who had ADEM and MS. May I refer you to professor’s Jellinek book Overcoming Multiple Sclerosis. It will help you understand many things about nutrition, which diet helps and which does not, as well as items to be avoided.
It makes me curious, I will certainly read about this nutrition theme (if I have enough ‘cognitive energy’) 
Such different stories about life after ADEM. It made me wonder:
Can these outcomes also be related to the injuries in the brain? The location(s) of the infections, the amount of the harmed myeline, or the way of rehabilitation, medication?
If I read the notes back my partner took during the first days: the part mostly harmed was my truncus cerebri (the brain stem). Does anybody know this too?