Home, Diag Forum, About, Contact Us, FAQ

Tell us how you are today?


#363

How am I today? Better. Relieved.

My son seems to have snapped out of his funk. He woke up this morning with a much better presentation, got off the couch, ran errands with his dad, is a lot less weird, and is talking again.

This leads me to believe his 4-day bad phase was not due to it being the end of the injection month, but rather it was just part of the cyclical nature of the illness? He’s due for his next monthly injection (the 10th) on Monday, so it can’t be because the meds are wearing off, right? I’ve seen this happen before.

So that’s hopeful? I’m going with that.

Edit: paranoia about personal safety is still in full force. Ugh. It never ends.


#364

@bananna. I am sorry for the pain you experience, and heartbreak we all share.

Like your son, my daughter rarely showers, changes clothes or brushes her teeth. Over the years, I have learned to accept this, but still ask her every few days to to the above. Eventually, she complied.

As far as our loved ones having a good life, I guess it depends how good life is defined. My daughter will probably not work, nor have a family, I accept that today. She appears happy, and when I ask her, she says she is happy. The reality was, as my late husband used to say, it is us, the parents who are not happy. I retired recently so I could take care of her full time, and this appears to have made some difference. She is definitely more stable and content now that I am here. The reality is that I really miss my husband, and had to take care of everything, including her, since I was it. Today, I am grateful not to be working, and to have her here with me.

On a side note, I respond to posts, but not sure they can be seen by others. If you, or anyone can see this, please let me know.

Take good care to everyone here. The road is long. Each one of us, as pRents have sad and upsetting days.

Sent from my iPad


#365

Hi Alwayshopeful. You’re doing it right. I read your post.


#366

HI, happy to hear your son had a good day. Always nice to have a reprieve, hope it lasts. My son had another day of not wanting to go out, but he did play some video games and seemed a little more calm than yesterday.
Of course always that darn paranoia present.


#367

Day-by-day, Irene, DianeR and banana1,
To all of you who are reading; yes I see your posts!
I hope for all of you, that we can find some peace of mind.
I am on the opposite spectrum of what most of you parents are dealing with. My son Lou, who suffers from a severe brain trauma and does not know that he assaulted a man who almost died, he is not aware that he has an illness, he has never been diagnosed as far as we know. I was present and literally 15 steps away when the assualt happened. I could not have prevented the outcome. You are some of the only people who know about this horrible assault. It’s so sad…all of us hope it never comes to this.
Lou is currently waiting a competency hearing, which is slow and painful for us, his family. We have not heard any news, I suffer everyday with my son. Sorry for the sadness, AnnieNorCal
Edit: please understand that I feel my family is tired of my sadness and listening to my complaints. There is nowhere else for me to turn, its been almost 2 1/2 years since my son’s accident and 1 1/2 years since the assualt. Sadness is my reality, even though I have a caring family, nobody understands my grief…thank you for listening


#368

Went to a graduation party with many people he did not know. Always worried about large groups triggering something. It helped it was nice outside and the party was outside with lots of space to roam. People who knew him said hello and moved on. So we was acknowledged but not forced to engage. He stayed on the outer fringe of the group to avoid any real interaction, but went through the food line and ate in the same area as the rest of us. Maybe for the rest of the world, not noteworthy, but for us, a real good day.


#369

My heart feels for you and your family. It is awful. I hope you feel better.


#370

Oh my, I have tears over your post. Of course we are listening, and we probably understand, because of our own experiences, your sadness and grief, as best as we can. I hope you can find some peace of mind.


#371

Hello all,
I just want to apologize for my behavior, sometimes my thoughts are very dark. As I’ve mentioned many times. Thanks for letting me post. I will work on more positive thoughts. AnnieNorCal
Edit: and I suffer from severe sleep disorder, it’s part of the problem, when I cannot get a decent nights rest, then I’m spinning senarios. I do not believe drugs are the answer to my sleep deprevation. So I just live through it. Going on 2 weeks now. It usually cycles out.


#372

@annie and everyone: I am always here to listen. We are a unique group of parents bound together by children who have a debilitating condition. Of course, our state of mind is generally one of sadness. My personal experience is compounded by the sudden loss of my husband of almost 30 years. I am alone to take care of my daughter. I try to make the best of it, or she will have no one to care for her.

I am not sure anyone sees my messages on this site. I’ll keep posting and hope I can offer comfort and support to others.


#373

AnnieNorCal, we are here for the positives and the negatives. I don’t believe you should ever have to apologize for how or what you post. That’s the beauty of this forum. Peace.


#374

Never apologize for talking about the hard stuff. I get a lot of help from a group of women friends- I call it “girlfriend therapy” , It helps me process the hard/confusing things if I can talk about them with people who don’t just offer advice, but are truly understanding and supportive. Sometimes I need to repeat myself and this group lets me do that. Sometimes just barfing it out is enough.
Even though this is a relatively anonymous forum, I’m beginning to learn details of others’stories and am feeling some connection, and the support is invaluable.
Keep talking- we can’t help or really give advice, but we can listen and be supportive.


#375

I get that sometimes as well. My BF (of 8 years) sometimes just says no more about your son today. So yes this is where we can come to talk about our feelings with no judgement. I’ve been taking that sarcosine myself and it seems to help a bit. The BF also told me he may or may not be around depending on how much my son is in my life. I’m like yeah? I choose my son. (I didn’t say that but for sure I choose my son).


#376

This is the place, Annie. You can say whatever you need to here.


#377

If we don’t have a place to express our grief, I think it hurts us even more. To be able to share these thoughts with people who do understand my struggle and my pain, keeps me centered and keeps me from being angry with those who don’t and can’t understand.


#378

Yes, we are all seeing them, can you see the hearts at the bottom of your posts? Those hearts show that people have read your posts and either identify, empathize, or just want to let you know they hear what you are saying. Sometimes if a post is sad, I think people feel awkward about pressing the heart button.


#379

Once my husband, who I love dearly, commented that he was going to laugh the day my son was driven off in a police car. My husband has come a long way since then in understanding what it going on, kudos to him for sure. I didn’t say it that day, but I knew if those events ever happened, that would be the end of our relationship.

As a caregiver, you get to make very few decisions in this scz business that you feel 100% about, that thought , for me, was an easy 100% decision.

The day our son did leave home, NOT in a police car, but driving a U Haul to his new apartment - my husband said that he thought he would be so happy on this day, instead he said he felt nothing but worry and love for our son.

Your BF was honest. I probably would have said something like, “yeah,well, good to know” in response to his statement. You don’t know what you will want in the future, where your son will land with each “new normal”. Might as well not burn that bridge yet.


#380

Always hopeful, It is comforting to think they are not unhappy with their lives and we parents are the ones not happy about it. It doesn’t seem possible that they could be content with such a hard, limited life but my son doesn’t always seem particularly unhappy, but then again he doesn’t seem happy either, emotional flat.


#381

yes we can see your posts and they are very comforting and wise. Thanks for posting, they have helped me a lot.


#382

Hope, I remember when you told us what your husband said, that he would laugh when your son was taken. My gut told me that wasn’t ever going to be true. He’s his father and he knows how much you love your child.

We’re not all on the same path, in the same time frame, when it comes to really and truly understanding how severely ill our loved ones are, and how important it is for us to look at them with nothing but compassion. It would be great if we could all be aligned in that way, as it would surely save a lot of marriages or relationships. But, that’s just not realistic.

@DianeR I think what Hope said is important. Be careful not to burn that bridge, unless it’s for a different reason other than your son. This is really hard stuff for a parent to come to terms with, never mind an outsider. It’s also really hard stuff for a person to have to deal with alone.