Although I am improving, I'm still unable to work, and it is frustrating, my limitations, my expectations and the insensitive comments of family and colleagues. I am fortunate that most of my challenges are improved, but I cannot multi-task or even focus, I fatigue so easily and it takes days to recover, my memory has large gaps and I struggle sometimes with words (which for a college professor of communication is problematic...)
People's comments are the worst though. My aunt who is in HR basically told me that I would never get disability. (I don't think she believes that I am even sick.) The secretary at work laughed at my remaining symptoms and said that maybe SHE should be on disability then. I get tired of explaining this rare disease, so I've just started claiming MS - no one asks more then.
The fact that I woke up one morning and wasn't able to walk, talk or see, and my speech was slurred, and I was numb from my chest down... well, that part's over so why am I not working.
It's very hard when you have to bear the double burden of having an illness and not being believed. If only they could walk in your shoes. It becomes a kind of litmus test where you learn who has compassion (or imagination) and who doesn't. Cling to those who do, and stay away from those who don't as much as possible. Get some rest, Laura -- it will help. Feel better soon!
HI Laura, I to am a former Professor. I use to teach Economics many years ago. Even though I have a BS and MS in economics, I find it very challenging today. I am 52 now and had my ADEM when I was 50. My first doctor thought it was MS too. My ADEM was caused by the drug enbril. What caused yours? I am fortunate that I own my own Business. I like you have trouble spelling. Many parts of my cognitive functions were damaged but my speech remained near perfect. I like you tried endlessly to explain ADEM to people but they just didn't get it. I also have large gaps in my memory. it has been 2 years and 2 months since my ADEM. They tell me that the brain has a remarkable ability to re-wire around the damaged area.I hope they are right. My Doctors call me patient number 1 since they have never seen this much brain Damage from a drug like enbril before. I hope things get better for you and go well for you. It turns out we are a small group that many don't know about. I certainly didn't before it happened to me. I wish you the best.
As the mom of a son who was stricken very severely with ADEM, I can attest that difficulties persist long after the acute phase and (for my son) even after he learned to walk, talk, eat, write and everything else again. Sorry for what you're going through. Maybe just saying MS is best, as you've been doing, as that is what it seems to be closest to. Best wishes to you!
They are not sure what caused mine, but I had had bronchitis for 4 months and many rounds of steroids and antibiotics. That's their best guess...
bchap said:
HI Laura, I to am a former Professor. I use to teach Economics many years ago. Even though I have a BS and MS in economics, I find it very challenging today. I am 52 now and had my ADEM when I was 50. My first doctor thought it was MS too. My ADEM was caused by the drug enbril. What caused yours? I am fortunate that I own my own Business. I like you have trouble spelling. Many parts of my cognitive functions were damaged but my speech remained near perfect. I like you tried endlessly to explain ADEM to people but they just didn't get it. I also have large gaps in my memory. it has been 2 years and 2 months since my ADEM. They tell me that the brain has a remarkable ability to re-wire around the damaged area.I hope they are right. My Doctors call me patient number 1 since they have never seen this much brain Damage from a drug like enbril before. I hope things get better for you and go well for you. It turns out we are a small group that many don't know about. I certainly didn't before it happened to me. I wish you the best.
Thanks. Much like MS or Diabetes, ADEM is really an invisible disease - one that impacts from the inside. I guess that's what makes this so difficult.
Johnsmom said:
As the mom of a son who was stricken very severely with ADEM, I can attest that difficulties persist long after the acute phase and (for my son) even after he learned to walk, talk, eat, write and everything else again. Sorry for what you're going through. Maybe just saying MS is best, as you've been doing, as that is what it seems to be closest to. Best wishes to you!
What you say is true, and my circle of "friends" has decreased significantly. Unfortunately you cannot completely stay away from family...
dancermom said:
It's very hard when you have to bear the double burden of having an illness and not being believed. If only they could walk in your shoes. It becomes a kind of litmus test where you learn who has compassion (or imagination) and who doesn't. Cling to those who do, and stay away from those who don't as much as possible. Get some rest, Laura -- it will help. Feel better soon!
Maybe try preparing some general statements you can revert to, such as "I understand this is hard on all of us. I am fighting this to the best of my ability. Some days I don't succeed as well as I would like. It's easier when my family is supportive." Hopefully, the message will get through. :)
Maybe try preparing some general statements you can revert to, such as "I understand this is hard on all of us. I am fighting this to the best of my ability. Some days I don't succeed as well as I would like. It's easier when my family is supportive." Hopefully, the message will get through. :)
Hi Laura,
I can totally relate to you. I too am going thorough the same challenges, and I had my episode of ADEM in August 2012.
I am still off of work due to me not being 100% better. I get the same reactions from some people, “but you look really good.” They don’t understand how one day you might be feeling better, then out of nowhere, you just feel “weird”, not being able to completely process everything like you did before. It still boggles my mind. I feel like I can do more somedays then other days I’m in a slump.
I have seen some of my coworkers and they too have asked me when am I going back to work, I look good. I try to explain to them, but they just don’t get it. I too feel like they think I’m just being to dramatic or something.
But like you said, they haven’t been through what we’ve been through.
(I too was in the ER because I couldn’t walk anymore. Numb from my shoulders down.)
Like say grocery shopping, then trying to go to another store and shop some more, I get both mentally and physically fatigued. I have had to sit in my car for a while until I feel like my processing and making sound judgements to drive is back to “normal”.
So you’re right, some people don’t understand.
Glad that we have this support group where others do understand.
Take care,
Carmen
Yes, it's just like that with me. On a good day, I might be able to drive up to 15 minutes. Most days the idea of driving is terrifying. Doing one errand is successful, two is amazing and three is rare. And you're right, it's both mentally AND physically exhausting.
I too am glad we've found this community. I was feeling terribly alone before two nights ago. I am very grateful to "speak" with others who really get it. Even if we're all affected differently, it's still damage to the brain we're dealing with...