New to this site.  My son James just turned 4 and was diagnosed when he turned 2.  Two years later I'm still a wreck.  But for James and anything James-related, I've pretty much checked out on life.  I can be in the greatest mood and laugh and play and function for and around James, but people, places, things, emails, vmails other than James are all in the too hard pile.  Anything or anyone that is not James I've disconnect from.  I know logically that's the worst thing to do, but I can't seem to get back to my pre-diagnosis happy and loving life self, unless I've had a few glasses of champagne.  Then I beat myself up that I had to drink champagne to come to life.  What the hell is that?  I should be doing better than this 2 years after the diagnosis.  I hate myself so much when I'm too frozen to pick up the phone or check email or go to the dry cleaner or to open mail, and hate myself more when I have to drink to check in and do those things.  Please tell me there's someone else out there who this makes sense to.  I haven't been able to figure out how to best be happy and productive and laugh again without numbing the fear, sadness, and pain.   

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I'm glad you had a good experience with a therapist. Your post was very helpful for me - while I have support from family and friends, I tend to rarely "let it all out" because it hurts them to see me hurting so bad. I feel like I have to keep up this "strong" vibe everyone seems so impressed with. I have been thinking I'd like to see a counselor at some point, but I was worried that we would spend dozens of sessions digging up all kinds of emotional stuff from the past instead of just helping me with my feelings surrounding Max and his diagnosis.

 

You really did a service to us with your honest post. Thank you, and I hope things continue to look up. And hope your hair turns out awesome! ;)

I'm so glad you found a great person to talk with.  And keep that hair appointment.  It's important to do little things like that to help your psyche.  I hope your appt with the psychiatrist goes well.

Candice Wright said:
OMG I felt like such an idiot posting that I'm such a wreck, but thanks to every one of you that responded I finally for the first time feel like I did something positive to help myself by reaching out to you all.  Simple words can't communicate how your understanding, advice, suggestions, and encourage have helped me feel half human again.  Thanks to you all, I went to a shrink.  Had been so loathe to do it, knowing how counselors can, before you can blink an eye, for me anyway, have the session turn into "family mapping" and childhood and how much you drink a week and your marriage and everything else on the planet I so don't want to talk about right now.  I thought there would be no counselor out there that would just stay with how to help me cope without, at least at first, digging into other things.  But I felt, after you all took the time to offer your support and suggestions, I should at least honor your effort to help me and suck it up and go.  I did, and it was so much better than I thought, she totally respected my need to see her to cope with James' diagnosis and although I'm sure it killed her, since she's also a marriage and family therapist, she didn't ask me once about my marriage, how many drinks I have a week, my childhood, my family and I was so relieved and felt like I could work with her and I'm now on her schedule once a week.  She also referred me to a Psychiatrist/Med Check to get on the antidepressants you suggest and I see that guy next Thursday and made a list of all the ones you recommended and will tell him to start there.  So again, thanks so much to you all.  I'll keep you posted on how it all goes.  Oh and p.s.  I have a hair appt. for Saturday morning.  I so want to cancel it already and just might as it gets closer.  I wish I could meet and know each of you personally.  You all helped me so much with just your words, I can't even imagine how much better I'd do having you all physically close to me.  Please let's all stay in touch.....xoxoxo Candice.
Ok so I did it, Friends.  I went to the hair appt. this morning.  It was pissing rain and of course I was already a nano second away from not going and that it was pooring had me literally with the phone in my hand ready to cancel, then I thought of you all and your encouragement to go I thought to myself, as I smoked about 5 cigarettes in 3 minutes compliments of nerves and anxiety from my indecisiveness, I'll go pissing rain and all so I can tell my new PPMD friends I did it.  Telling my family or husband would be a complete bust and woefully deflating, as they so don't get how huge a deal it would be to suffer 3-ish hours in the hair chair bullshitting with my hair girl.  I swear being able to tell you I did it gave me the will to go and all of a sudden I was putting out my cigarette and one foot went in front of the other and I was starting the car before I knew it. Of course with my dicking around I was late, but didn't care I was there and it was a huge triumph for me and I no lie, pissing rain and wet and irritated and dreading it caught myself smiling at my own self in the mirrored glass as I opened the door to go in.  Every single one of you that has responded to me owns that smile.  I can't remember the last time I've smiled as I've become almost expressionless since the diagnosis.  I can't explain it, but when I caught that smile I had this overwhelming sense of feeling safe again knowing I have you all.  I have the most loving and supportive family, friends, and husband tries, but I can be in a room full of friends and family and still feel disconnected and alone and of course they all try to offer words of support and encouragement but they don't realize they don't get it, they can't get it, and I need more for them to say nothing than ramble on with dip shit but loving support like "you really should get your hair colored", "don't you want to get a hair cut", "I love to go to get my hair done it's relaxing".  They don't realize that gently and loving telling me to spruce up the hair makes me feel worse about myself than I already feel.  I typically lash out and bark back "I'm 43 years old don't you think that I know my hair sucks and trust me when I tell you I know it looks like shit and if I even remotely could deal with it I would and you're making me feel uglier and lazier and more unproductive than I already feel."   That shuts it all down and then everyone scampers away into other rooms busying themselves because I've unsettled them and made them feel bad and then they are afraid to say anything to me.  Ok back to the hair appt.  OMG 3 hours and 24 minutes ugh I thought I'd die.  Tried to read a magazine so she wouldn't talk.  Tried to text and email on iphone so she wouldn't talk.  Talking talking talking she did anyway.  I heard or processed nothing that she said, I know I talked and chatted back, but no clue what about.  When she talked it was like what you hear when you're underwater.  Of course she asked about James, I hate that.  How's he doing people always ask.  How are you doing.  What the fuck do I say.  Do I say James is great, do I say I'm good, or do I say, like I really want to, James is losing strength and I'm for the shitpile you jackass.  I have come to hate how are you, how is James.  How do you all respond to those questions.  I keep trying to come up with a go to response that is polite or changes the subject but nothing appropriate has come to mind yet.  Why does everyone always ask everyone how are you anyway?  Even worse, my Safeway cashiers have started this new bit at check out, they must have recentl had customer service training, how has your day been so far.  Christ I just want to crawl out of my skin.  My day sucks, thanks, I spent it schleping my son to preschool and then to PT, OT, Speech, and sat in the waiting room not believing that this is my life but thanks for asking.  Really I'm irritated that you asked because I don't know how to answer but you poor Safeway customer service training attendee it's not you it's me.  Ugh. I hate that I find myself irritated and resentful of the littlest of things, like the above.  Truly, what do you all say when people ask how are you.  Maybe I should say I'm better than I was before Saturday morning when I got my hair done next time.....xoxoxox   

Yeah, you did it! You look maaahvouluuus BTW!

Now you can move on to other stuff, at whatever pace you want (or not).

I haven't figured out what to say about the "how are things" question yet. It really depends on the day and my mood. And what's wrong with that? If we have to listen to the soccer moms complain about driving their brats around in their big expensive SUV's and how they will only be going to Jamaica for 1 week this year instead of 2, then they can take some lip from little old get-your-head-out-of-your-butt me, ya know?

I try not to be sarcastic (my usual defense), but on the worst days I usually say something like "how do you think? It is what it is" and I shrug and give them a no-teeth smile. Pretty pathetic, I know.

Since I have a younger son who does not have DMD whom people don't ask about, I often say "both my boys are doing fine". Or I just  matter of factly tell them  that while he cannot do such and such, he is really good at art, or just loves history, or tried adapted skiing, etc. But that can only come after awhile, when you are past the stage where you will burst into tears because of what you are saying. That day will come though. At first I actually thought that I would never smile, laugh genuinely or have sex ever again either!!! I really thought that I wasn't "allowed".

Let's face it, the good people don't NOT want to ask, or else they look like heels trying to avoid the subject. They think that they would never be able to handle our situation, and are probably just so sympathetic.

And the jerks of the world are jerks and will always be jerks. Don't let them win!

 

I've totally blabbered too much again, but just wanted to let you know we all felt that smile of yours in the mirror, for it is our smile too.

 

A.

Oh, those rain days do make it harder.  So proud you were able to pick up and go.  Take it one day at a time.

By the way, I sent a message to your inbox...did you see it? It should be up at the top right inbox.  No need to reply, it was a basic FYI.  I agree with Andrea...some people and their problems...obvious they never had problems and have no REAL clue what a problem is.  Big expensive SUV's...I'm worried sick about how I'm going to afford a handicap van and how the heck my son will get his WC (when time comes) down our small hallway and in our bathroom that at this point will not even fit a WC. I believe in the end, all things will work out....it's just easier for those that have money and healthy children..so we do have the right to feel and act the way we do.....

Hey Candice,

I'm very late to this discussion but I just want to say that I admire your bravery in just admitting how hard it is to deal with this. I have been there! I hope it's moved in the right direction for you since last winter!

On a more practical note, I live close to you, in Berkeley. I'm also very connected with a group of Duchenne parents in N. CA (mostly Bay Area and Sacramento). If you're on facebook we have a really active group (much more than most of us are on the Community site), with get togethers maybe twice a year (family BBQs, moms nights out, etc) and were trying to start a local PPMD F.A.C.E.S. group for N CA. Anyhow, our hair is not cute but we are very friendly, if you feel like meeting up sometime. I know having a real person in front of you who is in the same boat can make all the difference!

PS I love the answers to your post! You people rock.

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