Acute Disseminated Encephalomyelitis (ADEM) Support Group

Bickering, knit picking over small things, sometimes imaginary


#1

We are just Bickering seems like on a daily basis over tiny little things that don't mean anything, sometimes it will be over an imagined subject.

And when I ask, can we please stop this bickering, and just have a nice weekend, or evening...then it becomes, "yes, Lets DO!" and then the blame game is on and it is driving me insane. We never have Bickered over anything. Just not the type of couple. Now we do it all the time. I'm at such a loss.

I can't dare leave not even for a day, but living in a nitemare of a relationship that isn't even a resemblance of the one I had. Is there anyone that has had this same experience? I'm praying, that's all I know to do.


#2

So sorry for you guys. We have chatted privately on this, but wanted to share on the group posting also. Yes, Brian and I are in a totally new and complicated relationship. He is like a different person post ADEM. Most days I have no idea who he is. But I have young kids so I am trying my hardest to keep things together and as normal as I can. He never argued or got angry. It took a lot to get him to blow his top. Nowadays he is a short fuse waiting to explode. Its like walking on eggshells in our home. Our boys are 12 and 9 years. They don't understand this new Dad. There are a lot of tears and anger in our household now. I think we all need counselling, really... Some days they absolutely hate their dad, my youngest more so... I try and explain Daddy is in pain, and imagine how they would feel if their head hurt all the time and they felt dizzy, and confused. But they are too young, Even myself as an adult battle to cope with his mood changes. I always used to be the outgoing passionate one, quick to anger, quick to forgive, impatient etc... Now I find that I have had to learn to rein my emotions in so much otherwise there would be a serious bonfight going on. So in a way its been good for me to learn to be more patient with my husband, but repressing my nature is taking its toll on me as a person. ADEM is a disease from hell, that's all I can say! Its testing all of us in ways I would never have imagined and I just keep on reminding myself that this is not Brian's fault, and that he is more overwhelmed, angry and depressed by this disease then I could possibly ever try and understand. I can see how relationships can fail simply because of how this disease affects the sufferer as well as their family and friends. So I am here if you need to vent, and thank you for being there for me in such a short time of us connecting! We will beat this and save our relationships because we still love our men, even though we do not necessarily like them some days... ;-)


#3

Hope everyone is doing well today. Peace to all!


#4

Been a bad week, but hey, today is Friday so hopefully it will be a peaceful weekend. Praying for some rain, we are in such a drought right now. Its winter but everything is so dusty and brown. Not normal for Durban which has a tropical type climate. Hope everyone has a great weekend wherever you are. xxx


#5

My husband and I had been married 19 years when i was struck with ADEM. I'm fortunate that he's fairly easy-going, but he is definitely having to adjust to what we call "the new normal." I have a short fuse (for anger and tears), I curse like a sailor, I speak my mind VERY bluntly (I used to just stuff thoughts and emotions down and not express them), and when I get tired (which happens too quickly each day), I become argumentative even bulligerant. Sometimes I have to go away into the bedroom and sit. Sometimes take a nap. Other times we just try to get through until the next day.

I'm sorry for all of us struggling with this new normal. I also send peaceful thoughts to everyone...

LauraK.


#6

Thanks for sharing Laura, its amazing how everyone's personalties have been changed because of ADEM. Always good to know we are not alone in this new journey. Blessings to you!

LauraK said:

My husband and I had been married 19 years when i was struck with ADEM. I'm fortunate that he's fairly easy-going, but he is definitely having to adjust to what we call "the new normal." I have a short fuse (for anger and tears), I curse like a sailor, I speak my mind VERY bluntly (I used to just stuff thoughts and emotions down and not express them), and when I get tired (which happens too quickly each day), I become argumentative even bulligerant. Sometimes I have to go away into the bedroom and sit. Sometimes take a nap. Other times we just try to get through until the next day.

I'm sorry for all of us struggling with this new normal. I also send peaceful thoughts to everyone...

LauraK.


#7

Thank you all for sharing on this subject. We have now sought out yet another neuro referral and are going to try to find out as soon as the insurance says,,"it's a go" how his brain is looking. If any of the lesions have changed at all. Life goes on. Day in and out right? Peace and Love to all of you today.


#8

Hey everyone,

Something my husband thought up for me: we have lamps in the two rooms I spend the most time: our bedroom and my computer room. He bought LED light bulbs that have daylight spectrum (4500-5000 Kelvin) and I use them especially in winter and on days I don't leave the house. For people sensitive to lack of sunlight, research has shown exposure to this kind of light (also used in Light Boxes - called I think Full Light Spectrum) to be helpful. Since I don't go out nearly as much as I used to, I have found it helpful to my moods. I also take Vitamin D supplements.

These may not work for everyone, but they're easy, non-chemical and worth a try if you're interested. We got the LED bulbs at Lowes, and I'm sure they're available online as well. Look for something that says "daylight" or lists the K-rating around 5000.

LauraK


#9

Thank you LauraK. He already does take the vitamin D so we will give the lights a go! Thanks for the tip!


#10

I'm not sure we are going to survive the "New Normal" so to speak. He is convinced he is well....I feel like I cannot live this life for the rest of my life.


#11

Hi Lotus,

I'm sorry he thinks he is well. There are moments I feel I am too, then I'm not. For me, I sought out counseling. I realized even if I get well, I've been through something life altering, and I needed tools. I also invited my husband to come sometimes, especially when we were having communication difficulties. It helped, but only I think because I wanted it to. Maybe couching it in marriage counseling, your husband can get help?

Again, it comes down to him wanting it. I'm so sorry for your struggles. I really am. :( Best to you both,

LauraK


#12

Hi LauraK, I do hope things are going well for you at this time. My love is really struggling right now. My daughter's wedding was this past weekend, and he barely made it through the reception. His daughter is getting married in October and he just hopes he is well enough to walk her down the isle. He truly feels now that his time is limited. We are struggling to find a doctor in Texas other than Austin that knows something about treating patients with ADEM. If you have any knowledge of any even though you have relocated would you share them with us? Thank you. Hope the lights are helping in your home!

Regards,

Lotus


#13

I am going to a conference at the end of the month. It's in Dallas, and it's about ADEM and the family of diseases. Hopefully I'll come back with SOMETHING.

Meanwhile, I just read a very interesting book by Dr. Jill Bolte Taylor called MY STROKE OF INSIGHT. (She also has a TED talk on the web called the same thing.) Her problem was a blood clot/stroke, but the brain damage info was very interesting.

I wish you the best and keep hoping!


#14

Thank you so much. I will check out the book by Dr. Taylor. I hope you gain some useful knowledge at the conference.!!

Best of luck to you !!


#15

I had actually seen part of this on TED before but never watched the entire story before. It was very interesting her insight into her own stroke and what was happening to her. Very touching. Thank you for sharing.


#16

LauarK - hope the conference brings back some insight and assistance for all ADEM Sufferers! Enjoy it and good luck on your trip! To everyone else, I have really made some lovely friends on this site, so thank you all for your invaluable contributions. Brian is going through a bad stage again and has just given up his job 2 days ago, he is only 43. Last MRI in April, another scheduled for Friday, he was just in hospital 1 month ago on more drips. He is the worse he has ever been, double vision, falling over, walks in a slow shuffle, spending all his days in his bed as much as he can. To try stay out of our already warm spring South African weather which is up in the 30 degrees and more. So just sending love, light and prayers to all of you out there. Keep strong, keep your faith and love each other especially through the bad parts of ADEM. xxx


#17

Hi my name is Lisa. I am new to ALL OF THIS. My son has been diagnosed as having .ADEM recently (oct 27th) reading all through your discussions. I am even more confused. I thought this was something that effects children. once diagnosed we went into hospital for the 5 days of steroids and I was hoping his almost seizure type episodes would all clear up and we take a follow-up MRI and it should shrink and/or disappear and all will be good. his episodes are no where like they were but they do appear a couple of times a day. can you please fill me in???? is this a life long illness??? disease??? I followed up with a local psychologist for meds as he is on respitol and we have follow up apt with neurologist next week. any info you can tell me. as I think I read everything on the internet I possibly can. I need all the help I can get. thanks


#18

Hi Lisa, welcome to the group. You will find so much support here, its amazing. ADEM hits children and adults, there are many parents on this site who have kids with ADEM and just as many adults where the disease only hit them now... With this disease there is no one way recipe for everyone. Each person/ child is affected differently and it all depends on how severe the episode or episodes are. From what I have read, some people are really lucky and only have 1 or two episodes and its gone, and they just have minor side affects if any. However many have serious episodes and the disease can be severely debilitating. My husband is 43 and is no longer able to work, but we are still hopeful that he will recover enough to go back at some stage. He has had 4 severe attacks in the past year and a half. The best thing is to find a good neurologist, preferably one that has treated the disease before, and obviously they must work closely with your paediatrician. You don't mention your son's age but I am assuming he is still a child. The good thing about children is they are so robust and it seems that they are able to fight this better than adults. But again, it all depends on the child, their immune system, and how quickly they are treated. On the internet there are some very misleading comments like a 6 month recovery period seems to be a common one. Yes, some people do recover that quick, but some do not. Just keep your faith, and I can also suggesting posting your whole story from the home page so that others who are not following this post can also read about your son's story. Also share his age, name (so we can say hi!) and where you live. Some members may be able to offer advice on a good Neurologist in your area that they have dealt with. And you may even find some Mums in your area to start your own group meetings to share tips and tricks of the trade when dealing with ADEM. best of luck, and praying that your son has a complete and full recovery! Kind Regards Belinda (SA - Durban)


#19

Hello to Lisa, And please do try and we all are continuing to do to find a neurologist with some experience treating ADEM.

We are still struggling to have answers and my love is 66 years old. My newest concern with him is the forgetfulness. But then again it could be his age. He did have some tangles in his brain along with the lesions in the past so it concerns me that he might be showing some signs of something more. I found the bag of trash in the bedroom when he thought he had taken it out the other day. Along with some everyday things like repeating the same questions repeatedly, then almost walking out of the store with the groceries in his hand without paying. When I guided him to the check out and told him we have to pay first, let's go to #4 checkout, he replied what is number 4? He tries to play things off as, Oh I just forgot I thought I had already done this or that.

I have some experience with demensia because my mother suffered for years with it until it became advanced. So this does concern me. He said he is really struggling with having the ambition to do anything. He said he has to force himself to do every day activities. He used to play online poker for hours, now he doesn't even do that. The fatigue is a major thing right now also, he doesn't stay up and about for more than 4 or 5 hours and he is back sleeping. We are carrying on though and not giving up on finding that one right doctor that might give us some answers. We have daughters getting married, grandchildren, and holidays, so we try to think positive. Each day it seems is something new. We thank the Lord that he does not have the severe issues our dear friend Belinda's husband is experiencing. My heart goes out to all of you. And Hoping everyone has a successful day in whatever way it may be. It has been a blessing to have you all here to talk, listen, and LEARN from....Lots of Good Thoughts on this Wednesday!


#20

Hello Everyone. It is so unpredictable how the roller coaster is going to go with ADEM isn't it? One thing gets much better then the next issue arrives.......How do I convince my Love he can no longer drive? He is getting so scarey, and he recognizes it, but he will Not give up driving!! He is going to have an accident and I am convinced of it. Is it possible for ME to talk to his Dr. about this or would that be something they could not discuss with me? Has anyone else come across this issue? He wants so badly to still do the things he is capable of, but I will not get in the car with him behind the wheel any longer. I sure hope there is someone out there that can give me some direction.....