Acute Disseminated Encephalomyelitis (ADEM) Support Group

Is there RECOVERY?


#21

Dont worry, I manage. Just went fishing for the weekend to relax. The issue is basically due to domestic problems which I must solve myself. One way or another....Thanks for your support.


#22

That is cool that you have a place to escape and do things that recharge you.

papageo said:

Dont worry, I manage. Just went fishing for the weekend to relax. The issue is basically due to domestic problems which I must solve myself. One way or another....Thanks for your support.


#23

This sounds all too familiar from the other side of the fence. Thank you for sharing that.

papageo said:

Definetely my post ADEM personality is different. And all I want is to be left alone and in peace without anyone questioning my whereabouts and my every move, especially when I am dizzy. Once people understand this we shall live in perfect harmony! I dont bother anyone, I keep quiet and in silence and I can not stand it when others bother me. It is not fair.... Once others understand that I am not who I used to be then things will settle. But by trying to push me do things I used to do before in the hope that they will rehabilitate me, brings exactly the opposite results.

My story I dont tell it often, very very rarely. I used to talk about it at the begining but not any more.


#24

My husband isolates quite often. I hover too much. I get it now. concern causes "leave me alone" to come about.

Occipital said:

That is cool that you have a place to escape and do things that recharge you.

papageo said:

Dont worry, I manage. Just went fishing for the weekend to relax. The issue is basically due to domestic problems which I must solve myself. One way or another....Thanks for your support.


#25

It helps to be left alone in peace from time to time when you need it. And it is even greater when your partner can understand and not misunderstand it. The secret garden in my dreams is to try imagine myself at a sanatoriium in the middle of a pinewood with no one around. These thoughts help....


#26

It can be difficult to understand "the grinding". The medical emergency is over. The dramatic recovery by leaps and bounds is over. Now it is just: grinding. Slowly and painfully trying to heal and get back to normal. It is tedious and unrelenting. It is a marathon, walked on eggshells!

Lotus said:

My husband isolates quite often. I hover too much. I get it now. concern causes "leave me alone" to come about.

Occipital said:

That is cool that you have a place to escape and do things that recharge you.

papageo said:

Dont worry, I manage. Just went fishing for the weekend to relax. The issue is basically due to domestic problems which I must solve myself. One way or another....Thanks for your support.


#27

It is a marathon.... I have found some days there is no stopping me and I feel like I can handle anything and everything. And then there are those days I just don't feel like doing a thing and just giving up.


#28

Ditto. I used to think that it was depression. Maybe it is, but, there are the extreme physical highs and lows, and that counts, too. One day I say "Let's tackle this large goal!" and the next I say "Please put me in a nursing home this is too difficult" (OK, many days separate the two, but sometimes it is that dramatic).

Lynn said:

It is a marathon.... I have found some days there is no stopping me and I feel like I can handle anything and everything. And then there are those days I just don't feel like doing a thing and just giving up.


#29

I completely understand, but I have always been an optimistic person, so that keeps creeping back. I find that for me, as I am a caregiver in general; when someone needs my help or needs me to work on a project of sorts, I forget all the garbage.


#30

Yesterday was one of those days for My Sweetheart. He couldn't express exactly what he was feeling other than having strange thoughts going through his head. Which he never could really express to me what that meant. He said he felt a sense of panic, just not feeling right mentally throughout the day. He finally got up and got out of the house and went and visited his sons at their job and they took him to lunch which made him feel good that they did that. It was a rough day at work for me trying to concentrate on doing my job and having talked to him on the phone with him still in that state where he said he was having strange thoughts, all I could do was worry. I REALLY don't want to sound WAAH WAAH, about my day after what he went through. We did spend a few moments after work talking about both our days. I explained my concerns when I am away from him and he says he is having wierd or strange thoughts how it concerns and worries me.. (Having experienced him making decisions when he is in this frame of mind.) I feel almost in a panic state myself and try to hold it together and carry on with my responsibilities. I am glad his sons were willing to take some time with him yesterday although sometimes I am not always sure of their motives.When I got home and settled I asked for a hug, and we assured one another we were going through this together. His Neuro advised him not to make any major or financial decisions any time soon since his brain is still in a healing process. I wish this was an easy task, but not being with him, he is easily convinced to "invest" in things he can't afford to do. It makes me Very Angry that he gets taken advantage of by those who are close to him when I am not present. Then later after he realizes what he has done he hides it from me until it slips out when his mind is not at it's sharpest. I guess you might know what this can lead to discussion and frustration wise.

I apologize,,,,I am frustrated, still upset this morning and venting. Thank you for anyone out there that can relate, understand, I pray that today is a much better day. I hope you All have Good Days today!!!!!


#31
  1. That must be hard to watch your beloved in that state
  2. "Strange thoughts". For me that means a lot. Most of them I never share. It would be too horrible. Some, I do, because my caretaker can take it. Also it de-mystifies them usually.
  3. Being able to go and visit someone is priceless.
  4. Kudos to you for keeping it together and managing your job
  5. I make less than ideal decisions. Best thing to do is to talk… a LOT.
  6. Hugs, there are never enough at this time
  7. Venting gets it out and away, so, that is great, good job Lotus!



Lotus said:

Yesterday was one of those days for My Sweetheart.


#32

Thanks for allowing me to Vent!!! And I could not agree with you more on all your points! I hope today is a Great Day for you!


#33

did you have lesions in the brain


#34

Yes, I did. One massive lesion in the medulla oblongata that extended into the spinal cord, initially diagnosed as a grade 3 astrocytoma and about 7 other very small lesions scattered around the brain. Treatment was delayed for 5 months due to the incorrect initial diagnosis. Two years later I was diagnosed with Celiac’s Disease and only then did the lingering neurological symptoms abate. Now, whenever I am accidentally contaminated by gluten in my food, those neurologic problems resurface. For that reason, I rarely eat food prepared by others.

Best,
Deborah Bean
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#35

to all of you here, wow. I also have found that family and friends have fallen away. My son who is 12 now. (diagnosed at 10) a new personality, he gets excited to the point people talk about that loud laugh that he cant control. to some weird body movements and seizures that all doctors say he is doing this himself. omg if it was so serious and if I only knew just how seriously ill he looks when he goes through his episodes I would laugh my _ _ _ _ off. I cant work, lost my job to be home with him. Hubby and my other children also just go about their normal day. when they are home and my son is “acting up” they call me, I get him, take him in my room and hold him. alone. he will kick, whaling arms and legs sometimes I get hurt. then gurgling with foam and then its over and he doesn’t remember any of it. some days he will make it through school but hold it in till he gets home. those are the worst “episodes” and he then asks me who I am?..then asks "where am I? then he comes to and starts crying in my arms asking if he is going to die. yeah nobody wants to hear this story. welcome to my world. sorry had to vent.


#36

Momof4,

As an adult with ADEM and one that worked with disabled children in my previous life, so to speak, my heart breaks for you. I watched what a lot of parents had to go through to take care of their children. I so wish I knew of the Person who could and would help you and your son. Have you looked to see if the Transverse Myelitis Association is running any type of studies on children? Apparently , the only thing I can do is keep praying for you all. Lynn


#37

Hello everyone I am Crystal I was diagnosed with ADEM in August of this year and I am so grateful I found this group I have days where I am just down crying alot just confused like yesterday I cried most of the day. I try talking to my fiancée, my friends, and family but they just don’t understand what im going through. I really don’t understand what I’m going through but this group is helping me so I just want to thank you all… I will be asking lots of questions!!!