Hi I’ve had adem for 3 years told will recover just takes time. I had it bad was put in induced coma for 4 weeks had plasma 5 times course chemo ventilator for 7 weeks itu for 4 mths rehab straight after for approx 8 mths . I was left for almost 1 year due to pandemic but we got a private physio who.i have couple times week. My muscles fatigue so quick I would be glad if anyone has any suggestions on how to get them stronger . I’m not standing due to this . Thank you in advance.
Karen.
Hi Karen,
I’m so sorry for the challenges you’ve been facing.
I can say for me (8.5 years after the attack), that patience and pushing are all you can do. That being said, you also have to listen to your body. I am now at the point that I get about 4-6 hours of productivity generally every day (that includes bathing, getting dressed, cooking, eating and hopefully some thing else) but it’s taken a lot to get here.
I would suggest a few things that proved beneficial to me. First (and hardest especially when you’re tired) is going on the Auto-Immune Protocol. Basically you go down to only eating lean protein, vegs and fruits - no starches, carbs, seasonings or anything. Then after a few weeks (it was supposed to be a month, but alas I have no patience…), I added in a tiny bit of one thing (I started with butter) and see how your body reacts. Turns out I have new intolerances for things. Some cause headaches, some cause cognitive fog (basically zombie-mode on the couch), etc. Wheat turned out to be something I’ve had to give up post-ADEM because the cog fog is so severe. MSG had to go because it turned on MASSIVE headaches.
After all this, (and I’m giving you my personal list backwards), I ended up doing an 80% anti-inflammatory diet. Obviously 100% would be ideal, but I cannot do all or nothing, so this seems to work. This seems to be helping my brain (probably cutting out all the sugar and fat did more good, but I’m sure eating vegs helps.)
Next I would recommend targeted therapies. For instance, I found I was dropping things after picking them up. I went to a physical therapist that specialized in “occupational therapy” which is for hands. Then I asked what I should do at home, and I started crocheting again.
All that to say that addressing a specific challenge and forcing your brain to work on it has helped me.
My muscles still fatigue but I keep pushing - and many days I push too far, and my body pushes back for a few days. The challenge is to find the middle ground where you’ll see progress but not be pushed back.
Milestones help. A year ago I couldn’t walk 1000 steps a day. Now I’m pushing for 2000. Some days I get it, and some I don’t. Forgive my body and look to the next day.
I think that there is a fine line between pushing the brain and challenging the brain - that’s going to be different for each of us, and finding it is really up to you.
I’m happy to chat or email if you want more info. Best to you!
Laura