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Undiagnosed 12 Years Of This...

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aiukli

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Hi. My son, 14, has a serious neuromuscular disease that may end his life early, or not, or...we just never know.

I've resuscitated him myself twice. My ex-husband has done it once. My son has conked out due to an insufficient airway managed by an untrained school employee most recently, and my reaction was... inappropriate. I arrived at school and my son was on the floor, luckily responsive (no damage, apparently, thank God or whoever/whatever is in charge of these things).

I was unable to feel anything once I saw he was okay. I was called while I was at home and the panic I felt... it threw me back to another time my son was ill, double pneumonia, not expected to live due to his very low lung capacity, and my ex called me just to give me an update but he couldn't hear me saying hello, then the line went dead and I thought, "That's it, my son is dead." I fell to the floor. Well, this time I didn't fall to the floor physically but emotionally, something in me finally broke. I feel nothing.

This has happened so many times now, I am numb.

I'm tired. I'm sick of flashbacks coming out of nowhere, usually when I'm trying to go to sleep. I had a lot of sleep disturbance for a while, and my son wakes me at night as well. Since I've been divorced, I share custody so at least I get a week of recovery time.

There is no real support. The psychologist at the children's hospital where my son is followed sticks her head in the door, asks, "Everything ok?" and before I get the chance to say "NO!", she's gone again. I'm sure there are worse things going on than what's happening to my son. He's alive, not in crisis, but surely... I mean, we do not have normal lives. How could a professional think we're all just hunky dory? Just getting by, living in trauma every winter, or on random occasions?

I'm so angry. So sad. I have an enormous amount of stress and I try to keep all the plates in the air, spinning, and I can't do it all the time. I'm quitting the job I have at the moment because it's too much stress. I'll be ok financially, but I just want a job where I can hide and not be beholden to anyone, no stress, I can't take it anymore.
 
Hi and welcome

I am so sorry you are living like this being ill or living with someone that is ill is living in a fight or flight mode all the time. It is emotionaly and physicaly exausting. I hope you take the time to find yourself a therapist to talk to. You may also whant to look for a support group in your area.
 
Welcome.

managed by an untrained school employee most recently, and my reaction was... inappropriate.
I would think most mother's would be given the circumstances.

The psychologist at the children's hospital where my son is followed sticks her head in the door, asks, "Everything ok?" and before I get the chance to say "NO!", she's gone again.
I can understand you don't want to leave your son's side, but maybe next time you could chase after her. She's supposed to be a psychologist, not a parcel courier. If she wants to do the tap on the door, wait 2 seconds then "welp, nobody home" and leave. She should apply for a job with FedEx.

I'm sure there are worse things going on than what's happening to my son.
While technically true. The fact is, this is the worst thing to you. You sound like someone who is at the end of their rope. You are absolutely deserving of help.

I have an enormous amount of stress and I try to keep all the plates in the air, spinning, and I can't do it all the time. I'm quitting the job I have at the moment because it's too much stress.
You're in an extremely difficult situation. One that clearly having a negative impact on your quality of life. You said you feel as though you can't take it anymore. This is a huge sign that you need to be getting help.

Also don't forget that by helping yourself you are also helping your son. Not being overwhelmed by stress will make you a better parent and let you enjoy more of the time you have with him. Instead of being constantly focused on the next thing you have to do for him.
 
Thanks for your replies. I really appreciate your having taken the time!

I have made some changes over the years to help me manage my son's disease; I was a stay-at-home mother for 7 years but didn't want to be, so you can imagine how that went. My marirage started to tank (my ex's method of dealing with everything was to go out every weekend and do sports, and eventually to cheat on me). While trying to work that out, I got a part-time job and a great babysitter, then I decided the marriage was over and filed for divorce, and since then the stress has skyrocketed. Now I'm getting married again and while my new partner is great, and my son's Dad has really stepped up and I trust him to care for our son, I still feel like a single mother for the most part but now with the added duties of a soon-to-be-wife, occasional stepmother, and self-employed businesswoman.

In a way I think the impact of the trauma is coming out now because it can... I feel less pressure than I did a few years ago in the whirlwind of divorce and singlehood. I dunno.

I live in France, but I'm American, btw. I guess I'd like to know what kinds of short-term therapy work the best, because while France has a great medical system, most therapies are not covered and are costly. EMDR? CBT? What will work to help me learn how to zap these flashbacks and nascent panic attacks? I had one real panic attack as a teenager (lol back when I had no stress, actually!), and I can feel the beginnings of one on occasion. I really don't want to let it get worse.

At the moment, I'm practicing active avoidance, literally shouting/thinking "NO" when I start to get a flashback. I'm reading that that is NOT the way to do it. That I have to face it.

Therapy here tends to Freudian analysis and I don't want that, or drugs if avoidable. I don't take sleeping pills, I must be vigilant for my son anyway at night as he wakes up.
 
@aiukli Welcome! :)

Are there any parent support groups where you live, even if it isn't disease specific just connecting with other parents who have chronically ill children can be really helpful as they understand the struggles that you are facing. CBT is also an excellent therapy for learning how to handle the thoughts that spin out of control. Mindfulness and yoga are some other things you might want to explore.
 
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