Fatigue?

[beachy1980]

Hello,

I just wondered if anyone takes anything for fatigue? I know that exercise helps me massively but sometimes that’s not something I can do. I have really bad eyesight and I’m struggling outside on my own now. I can do you tube exercise videos and have a treadmill at home too 👍

I sleep around 12-14 hours out of 24 and with 2 kids this is really difficult. I would absolutely love to feel more awake and not need to nap half way through the day.

[listener24]

Hi

I think your like me and many others who have had encephalitis we over do it! I don’t take medication but have found drinking just water helps and most of all red fruits red/black grapes blueberries strawberries lift me amazingly but telling me to relax and don’t over do mmm that’s the problem 😎

[beachy1980 in reply to listener24]

Thanks for your reply! I don’t drink enough water so I’ll definitely do that and try more red fruit too! Thanks 🥰

[listener24 in reply to beachy1980]

I have my phone bleep me every hour telling me ‘Drink water Ian’ I forget to eat and drink now very strange but I don’t need to tell you !

[The_Bass in reply to listener24]

Definitely encephalitis has reminded me just how important water is – drinking plenty helps!

[beachy1980 in reply to The_Bass]

Thanks 👍👍👍

[beachy1980]

Great idea! Thanks

[OldGnome]

Hello beachy1980!

Well, fatigue is the main thing that is causing me problems now. While not as bad as it used to be, it is bad enough to keep me categorized as being disabled. I went through all sort of doctors' visits and they tried all sorts of meds on me with none of them being helpful. Most often, a new med would add even more problems to my situation.

It looks like healing over time, and fatigue management are the best things I can do. Accepting this as what appears to be a lifelong problem which I will have to deal with, is one of the toughest things to deal with.

To answer your question about taking something for the fatigue, I was prescribed Modafinil, and wrote a long post documenting my experience with trying it. I believe this was over a year ago, so now I can re-read it and actually realise that I HAVE improved a bit! If you have the time, you can read it here:

healthunlocked.com/encephal...

It was one heck of a roller coaster ride, but didn't end up being the "miracle cure" the medical people hoped it would be.

I hope you can improve as time passes, to the point where the fatigue is not a major problem any more!!

All the best and stay warm!!

OldGnome

[beachy1980]

Thanks so much! I don’t want to accept that it might be a lifetime issue but if it is I have to remember that it could be a lot lot worse!!!! I think it just helps to hear others experiences too! Thank you for your reply 🥰

[The_Bass in reply to beachy1980]

I know what you mean beachy1980 and hello to you! I can only add that I think it’s just finding that balance – ie. not overdoing it and then having to have lots and lots of sleep and rest when you just don’t want to. Easier said than done though!

[beachy1980 in reply to The_Bass]

Thanks- I agree

[Wygella]

I absolutely agree with all the above. Drinking water makes a difference I know just to me generally. I’m lucky in that I can still drink and love tea. I’d really struggle if I couldn’t! I had the opposite in that I had massive fatigue but couldn’t sleep. I’d have crash weeks when I was so tired I couldn’t do anything but still couldn’t sleep. 41/2 years later the crash weeks have turned to crash days or even half days and that’s only after I’ve had something stressful happen or ummm yep overdone it! I definitely have a better sleep pattern. Maybe 2 or 3 decent sleeps and one can’t sleep. A big improvement.

I was interested when you mentioned eyesight though. Was this from E or something you’ve always had? I was born with narrow angle glaucoma I’ve now found out but it's become a problem post either E or covid leading to a lot of ops in the last year. Don’t worry if you don’t want to share anything about your eyes though, I just wondered.

Good luck. Best advice I can give is be as kind to yourself as you can be with two children and things do honestly improve with time. Slowly but you will look back and see how far you’ve come.

[beachy1980]

Thank you 🥰 my eyesight problems began after e and have got a lot worse over the last year. To the point where I can’t go out by myself which feels really upsetting as it was something I could do only a few months ago. But I don’t want to just give up - I need to occupy myself with things to look forward to. What limitations do you have with yours? Do you find that you are used to it and have found new ways to cope?