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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Candice,

Have you talked to your doctor about depression.  I had such a hard time with this but finally did.  I'm now on a prescription medication and functioning so much better.  I also found it nearly impossible to do anything.  Now I can get a handle on it and get most of it done.  Even if you don't want to go the prescription route, still talk to your doctor.  And may be find a therapist you can talk with.  It really does help.  Many (((HUGS))) to you. 

OMG sounds like me to a T.  I'm sure your feelings are normal but everyone deals differently,  I must say I was the same way.  I'd say I just got out of my funk after almost 4 years. I talked to my doc a little and she wanted to put me on meds but I did not want.  I also had some other things going on at the same time that I think I just finally said life is to short not to be happy and I knew I wasn't making friends or keeping friends that I would need in the future...Life seems to be on the right track now and of course I still get upset, cry, want to punch the wall and like a drink more often, but I do feel better and learned to realize I need others and in order to have others must not keep them out of my life.  I want my son to have as normal life as he can and be involved in as much as he can.  Are you going to conference? You will be surprised how strong you can and will be....truly all this does make us better and stronger,  you may not see right now but you will.  Just love your little guy each and everyday...knowing you're there for him doing the best you can and making him happy 

I did the same thing as Laurie.  Only been at this for 3 years, with the first 2 pretty much feeling how you described.  Been on antidepressants for aprox 1 year. Not happy about taking them but I do what works.  I noticed within days of taking meds my whole family became more relaxed too.  I hadn't realized how my tension was causing them extra strain they didn't need.  Although I realistically don't expect to get back to a pre-dx life, that won't happen.   Darcy brought up an excellent point about connecting with other parents too, that actually helps a lot!  Are there boys with duchenne anywhere near you guys? 

 

Let yourself off the hook, you live in what my husband and I call "hell for parents".  Dealing with everything is just shy of impossible, yet we all must keep going.  Most likely you've been doing an amazing job but sounds like you are very hard on yourself.  Only a loving mother would place her son as the center of life as you have!!! 

Laurie, Darcy, and Cherly, THANK YOU so much for your supportive and comforting words.  Finally for the first time I feel like I'm not a complete loser that I'm handling this for the shitpile.  I thought for sure 2 years was too long to be a mess.  My husband and family and friends don't get it.  I feel like I've disappointed them on so many levels.  I used to be a go getter, a make it happen, a happy chatterbox and fun laughing silly person.  My whole life I got my energy from my relationships with people.  I'm off the charts extrovert on the Myers Briggs.  Well I was.  But I'm none of that now.  I'm not interested in anyone or anything other than James.  I could talk to a street person all day long before, now I avoid people like the plague.  When I drop my son off at preschool I purposely get there 5 minutes late so I don't have to shoot the shit with the other mothers.  When I get caught in a conversation I nod and smile but I don't hear the words or process the conversation.  To my shame and horror I've blown off several invitations for James to have play dates with his classmates because bsing with the mother is in my too hard pile.  Every time I say yes to the play date and then the day comes and I'll be having a down day and I just can't do it so I make up a big lie to get out of it.  I hate going, I hate not going, I hate deciding to go or not go, I hate lying, and worse I hate telling the truth that I'm not doing too great and that I'm not up for it.  I feel like when I'm honest and I say I'm having a hard time, it's not ok anymore.  It was ok right after the diagnosis, but the expection is that I get up and about and out.  And then I piss myself off when I'm chicken and I don't say I'm having a hard day and lie.  Who lies at almost 44 years old???  I'm horrifed.  OMG the last lie I told I was probably 12.  And then I'm even more beside myself that James has missed time with friends because I can't get it together and suck it up with the mother for 2 hours.  I think to myself what the hell kind of mother am I???  These are James best years and I'm being selfish putting my own selfish needs before his.  Not to mention I go days without a shower wear the same jeans for a week and try too fool everyone with a couple of blasts of dry shampoo to make it look like I took a shower and washed my hair when my family comes.  I have big hair so it works.  Why can't I get to the freaking hair salon they all ask?  I tell them it's because it takes more than 2 hours to cut and color and I don't have the capacity to listen to or engage in my hair girls talking about her boyfriend, what she thinks is best for my hair, how's James, how am I, and and and.  Same as with the play dates, I'm disgusted with myself that I can't suck it up for 2 hours but I just cant.  When I tell my friends and family I just can't, that's never good enough.  They seem to think they need to say something profound or offer dip shit suggestions on how to make me feel better.  My Mom, bless her heart, my best friend, pisses me off her big thing is go do something for yourself, or go out with friends or go to church or go to the gym.  All of which I did by the way and all of it sucked and didn't help.  I tell her and everyone else in my world that thinks they know how I should best be coping, pretty much to piss off.  And then I don't answer the phone or check email for awhile.  Ugh I'm so sorry I went crazy venting and carrying on.  Really thank you so much for your replys.  I do want to ask you all, if you're comfortable telling me, what meds are you taking that are helping you. I'm on effexor and it's not doing a damn thing.  I also had xanax, that worked but I was always really tired and being so depressed tired was making it worse.  Any suggestions on what's working???

I'm so glad I found this site.  I don't feel like I'm on a planet by myself anymore

 

 

Candice,

I'm taking Pristiq.  It's a newer drug and has worked wonders with me.  I've never been an extrovert, but was having so many of the same issues you describe.  Just avoiding it all.  It was all too hard.  It's still not perfect, but so much better.  It's not a cheap drug, but the maker has a discount program that helps (50% off your co-pay).  I also strongly suggest you find a therapist/counselor to talk with.  It's so hard to do at first but really does help.

 

Are you on Facebook?  If so, there is a huge DMD community there.  Friend me (Laurie Carroll Paschal) and I can hook you up with everyone there.

 

PS - I've taken Lexapro, Effexor and Paxil in the past.  None of them did much for me.


Candice Wright said:

Laurie, Darcy, and Cherly, THANK YOU so much for your supportive and comforting words.  Finally for the first time I feel like I'm not a complete loser that I'm handling this for the shitpile.  I thought for sure 2 years was too long to be a mess.  My husband and family and friends don't get it.  I feel like I've disappointed them on so many levels.  I used to be a go getter, a make it happen, a happy chatterbox and fun laughing silly person.  My whole life I got my energy from my relationships with people.  I'm off the charts extrovert on the Myers Briggs.  Well I was.  But I'm none of that now.  I'm not interested in anyone or anything other than James.  I could talk to a street person all day long before, now I avoid people like the plague.  When I drop my son off at preschool I purposely get there 5 minutes late so I don't have to shoot the shit with the other mothers.  When I get caught in a conversation I nod and smile but I don't hear the words or process the conversation.  To my shame and horror I've blown off several invitations for James to have play dates with his classmates because bsing with the mother is in my too hard pile.  Every time I say yes to the play date and then the day comes and I'll be having a down day and I just can't do it so I make up a big lie to get out of it.  I hate going, I hate not going, I hate deciding to go or not go, I hate lying, and worse I hate telling the truth that I'm not doing too great and that I'm not up for it.  I feel like when I'm honest and I say I'm having a hard time, it's not ok anymore.  It was ok right after the diagnosis, but the expection is that I get up and about and out.  And then I piss myself off when I'm chicken and I don't say I'm having a hard day and lie.  Who lies at almost 44 years old???  I'm horrifed.  OMG the last lie I told I was probably 12.  And then I'm even more beside myself that James has missed time with friends because I can't get it together and suck it up with the mother for 2 hours.  I think to myself what the hell kind of mother am I???  These are James best years and I'm being selfish putting my own selfish needs before his.  Not to mention I go days without a shower wear the same jeans for a week and try too fool everyone with a couple of blasts of dry shampoo to make it look like I took a shower and washed my hair when my family comes.  I have big hair so it works.  Why can't I get to the freaking hair salon they all ask?  I tell them it's because it takes more than 2 hours to cut and color and I don't have the capacity to listen to or engage in my hair girls talking about her boyfriend, what she thinks is best for my hair, how's James, how am I, and and and.  Same as with the play dates, I'm disgusted with myself that I can't suck it up for 2 hours but I just cant.  When I tell my friends and family I just can't, that's never good enough.  They seem to think they need to say something profound or offer dip shit suggestions on how to make me feel better.  My Mom, bless her heart, my best friend, pisses me off her big thing is go do something for yourself, or go out with friends or go to church or go to the gym.  All of which I did by the way and all of it sucked and didn't help.  I tell her and everyone else in my world that thinks they know how I should best be coping, pretty much to piss off.  And then I don't answer the phone or check email for awhile.  Ugh I'm so sorry I went crazy venting and carrying on.  Really thank you so much for your replys.  I do want to ask you all, if you're comfortable telling me, what meds are you taking that are helping you. I'm on effexor and it's not doing a damn thing.  I also had xanax, that worked but I was always really tired and being so depressed tired was making it worse.  Any suggestions on what's working???

I'm so glad I found this site.  I don't feel like I'm on a planet by myself anymore

 

 

Candice,  you summed it all up when you described why we don't go to get our hair done anymore, it's exactically how I feel about it too.  Having 3 years of bad hair days, gray, split ends because who has enough energy to talk for 2 hours!  :)  In the over-all scheme of life and stuff who really cares what your hair looks like?   You are still a beautiful mom!!! 

 

I take Citalopram.  Don't really know all that much about it but it seems to work well enough so far.  Plus, on down days, which I still get sometimes, I spend a few minutes doing something that feels good.  Simple things that take no $, no contract (like signing up at a gym), no involvement with others.  Lately, sitting with my back in the sun for an hour just feels nice.  Other times its music & housekeeping, chocolate, glass of wine, a good book (when I can concentrate), watching tv while the kids are at school, making pasta, gardening, hugging my dogs.   While indulging, I try to focus on just what's in front of me and put the background noise away.  These small distractions can provide relief to the constant stress and appear to work well enough with antidepressants. 

 

Plus, find Laurie on fb, I'm there too: cheryl cliff. 

 

 

 

I'm so glad I found this discussion.  We are new to DMD (Connor was diagnosed in October) and I too feel like I should have "shaken" this off by now.  My issue is that my full time job is now (and has been) suffering and I'm "on notice".  I have no idea what to do about it since I can't seem to focus and I'm a Type A personality which is still coming through in researching everything for Connor but leaves no energy for anything else meaning my job.  I can't take meds as I'm pregnant and planning to breastfeed.  I get my insurance through my job and feel like there is not enough time in the day to take care of everything for them, my family, husband and Connor.  I'm completely overwhelmed.  I need my job but have no idea what to do about it.  Are there any advocacy groups for this?  All I know is that you can take a Family Medical Leave (unpaid) or mental health day.  And honestly those one or two days are not going to change anything anyway.  Thoughts?

Whew Kira, you've got it tough right now!  If I were in your shoes I'd be heading to private counseling, provided I could afford it.  If not, I'd be training myself to focus on what I need to do in the next 5 minutes, and the next and the next and not allow myself to look ahead since there would be many distractions.  For me, this would have to include dmd research, with the caveat that I allow myself to deal with more after the baby sleeps at night.  No doubt this is already something you've been doing anyway and these typed words aren't much help.  I'd try to make sure, after the birth and breast feeding, that antidepressants were available.  DMD can't be easy to shake off espeically in the first year of diagnosis.  Please don't be upset at yourself because of that. 

 

Wish I could offer more, sending cyber (((hugs))) 

So many good answers and discussion here. I hope it helps you Candice to know there are others going through similar things due to our mutual enemy Duchenne. The FB groups are great, and the MDA live chats have helped me through the years. Some of my chat Moms have gone through surgery with us, and were right there when my son and I went away to college together. They celebrated from afar when we graduated and when my son got his first job. I hope I can meet them someday. Also, I cling to my close-by friends I have made in MDA support groups, and our local DMD friends, many of whom we have met through FB or the PPMD site. I have found "Wellbutrin" to be very helpful to me, without the side effects such as drowsiness and constant thirst .I now take one every other day. I must have cried for 2 years before I got ready to move on, and used time when I was thrown in with people to educate them about MD. If you are lucky, some will see you coming and run, but they WILL know what Duchenne is! It is hard to listen to someone go on and on about how their son loves to play football or whatever. Their "problems" seem so petty don't they? You will get it together in your own time. In the meantime there are many dealing with similar problems. Here we are.
I too, would highly recommend counseling, but be prepared to perhaps to have to go to a number of different ones before you find "the right one".  The one my husband and I went to when Kyle was first diagnosed (3 yrs ago this summer) went through the stages of grief with us - our thoughts after we left the session??  NO SHIT SHERLOCK - we knew the stages we were going through - one of us stuck in one phase, the other flying through them, we just wanted him to tell us that our hearts "literally" weren't going to break on us and we would die and not be here for Kyle and our other kids.  I actually think that is when it kicked in for me.  There are nights Kyle and I have our snuggle time and he seriously looks in my eyes - nothing like my other two kids have ever done - and I can honestly tell that he deeply loves his mom and knows that I will be there for him - and he doesn't even know there's really anything wrong with him yet.  So, yes, it's our son's diagnosis that is breaking us and our hearts, but he is still your son, my son, and I refuse to live my life feeling sorry for myself and feeling like I am being cheated and that he is - because, I already know that - and I'm gradually getting over that.  Life is way too short - is it fair that we already know his destiny - NO, but I've also seen so many people, young and old, that were taken too quickly and I know if their loved ones "would have known" they would have made EVERYDAY count.  It breaks my heart that you said you use to be so outgoing and you've withdrawn from everything.  Do you like to run or walk???  start MAKING yourself get out - even if it's just 30 minutes a day - get outside and go for a walk or a nice run - it will make you feel SO much better and you never know - at some point you may end up finding yourself with a Run for Our Sons tshirt on raising money and doing something positive - for your son, my son, all of our sons.  Wish you the best of luck....  please take care of yourself. 
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.

That's so great Candice,

Keep it up. Your not an idiot for reaching out for what you know is the right thing to do for you. An idiot would ignore those feelings and let them over whelm them and their life. The therapist may ask you the other stuff after she has helped you resolve some of the James issues, but for now she can see that is what is urgent.

Like Nike, "Just do it!"

 

A.

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