Hi there,
I am always tired and sleep a lot. I never feel rested. Does anyone else feel this way? It affects my entire life re how long I can leave the house, go out in the evening etc.
Hi Blossom, I am Lotus, and you are describing my man to a tee! I believe there are alot of people that have Adem that the fatigue is one of the hardest things. He can't go more than 4 or so hours at a time without a nap. And he can literally sleep for hours.
When did you say he got the adem? My first 1 1/2 years I slept for 22 hrs. my sons and husband would get me up to eat bathroom and back to bed. I could not stay awake to save my soul. My kids (both boys) would toss a coin to see who had to take care of mom on a Friday or Sat. night when my husband was at work. I didn't know how to turn the stove on or off or take a shower. the kids were so embarrassed to come in and turn on the water because I couldn't remember that sort of thing. I needed help with everything. I still need help but try to be as independent that I can.
My husband is tired all the time too. Never sure if it is his meds or the ADEM. He is usually falling asleep in the afternoon and then ready for bed early.
I think it is both based on my personal experience. The brain has been damaged so it makes sense we need to sleep more . I find if I am over stimulated like a wedding with a lot of people, I first get hyper than sleep more than usual the following couple of days. I cannot handle stress at all and the pain and fatigue both flare-up and I end up in bed. It is very hard on the caregiver God Bless You!
Hello, Blossom, I am Luciano. I have had two episodes of ADEM, 2009 and 2013, positively assessed through MRI and rachicentesis, so, no doubt about it. After the recurrency of 2013, from which I recovered almost completely in terms of physical strength, i have experimented an am still experiencing fatigue. I have a tendency to fall asleep in the afternoon, thing that i must fight because of work, and to fall asleep early in the evening. I get tired much more easily that before ADEM, and while almost all consequences have been recovered along one year, this last, ear tinnitus and the occasional dizziness are still there.
The fatigue has had an impact on my efficiency at work, I cannot work and stay concentranted as long as I used to do before 2013, but, more or less, it seems that i can compensate through a prudent effort management.
I hope You will improve, for me the first year after the event were the hardest, I felt better after 1-1.5 years. The huge part of the recovery, anyway, was in the first 3 months.
In these last weeks, after prescription of my doctor, i have taken a Carnitine nutritional supplement, and it seems to do something. Perhaps you can ask.
My best and sincere whishes. L.
Hello Luciano thank you for your input. I hate to say this but I was not diagnosed correctly for ADEM until almost 2 years later . I had developed serious encephalitis as well as hydrocephalous. The infection took it's toll. So I have had a long journey of so called recovery. Many tests, rehab etc. Once I got proper medical care I was carefully monitored for five years because of the chance of a second attack like you have had. I am so sorry. I was quite debilitated for 7 years . I could not work at my old job since it was my job that made me sick in the first place. I went to an adult re-training course for self employment and am currently and have been a freelance writer for many years. I don't make much money but at least I feel better about myself doing something that uses my brain. Most days I am so depressed it is difficult to do anything. I have a nap every single day. Lately though I don't necessarily sleep but just rest. I have tried everything including seeing a NP for help in the fatigue area. I went broke buying supplements. Non of them helped and some the neurologist felt made things worse. I am happy to hear that the Carnitine is working. Warmest Regards, Blossom
Ender said:
Hello, Blossom, I am Luciano. I have had two episodes of ADEM, 2009 and 2013, positively assessed through MRI and rachicentesis, so, no doubt about it. After the recurrency of 2013, from which I recovered almost completely in terms of physical strength, i have experimented an am still experiencing fatigue. I have a tendency to fall asleep in the afternoon, thing that i must fight because of work, and to fall asleep early in the evening. I get tired much more easily that before ADEM, and while almost all consequences have been recovered along one year, this last, ear tinnitus and the occasional dizziness are still there.
The fatigue has had an impact on my efficiency at work, I cannot work and stay concentranted as long as I used to do before 2013, but, more or less, it seems that i can compensate through a prudent effort management.I hope You will improve, for me the first year after the event were the hardest, I felt better after 1-1.5 years. The huge part of the recovery, anyway, was in the first 3 months.
In these last weeks, after prescription of my doctor, i have taken a Carnitine nutritional supplement, and it seems to do something. Perhaps you can ask.My best and sincere whishes. L.
Hi Blossom. I have to "take a rest" every day around 4pm. If I don't, the rest of the day become a total waste because of the following symptoms: complete exhaustion, can't think clearly/straight, negative, "out of it" not thinking clearly, can't remember anything. This is much better than 2 years ago, but it is still the case
I hear you. That was pretty much my day as well. You just have to go with it. You cannot control it. I used to tell people it was like turning the engine off in a car. I had only so many minutes to make it to bed. It is very isolating on a good day.
I use the car analogy too: I've got a tank of gas that is smaller and an engine that you can't push very hard. Those are the two factors: energy and ability. They vary. I will just go with it.
Blossom said:
I hear you. That was pretty much my day as well. You just have to go with it. You cannot control it. I used to tell people it was like turning the engine off in a car. I had only so many minutes to make it to bed. It is very isolating on a good day.