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Other Platelet Disorders

Stressed Out Need Advice

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10 years 1 month ago #39774 by DanC33
Stressed Out Need Advice was created by DanC33
I am having to move because of financial constraints. I am now on SSDI and I get dependent care on my kids, but it's not enough to live on where I currently live. I found a HUD owned apartment in another town. Surprisingly it's very nice. (they won't let my wife work because I need 24hr monitoring because of falls and seizures)

So because of this my stress levels are off the roof! And my wife, who is used to me handling everything in these kinds if situations, is pushing me to a breaking point. I don't think she understands that stress is a major factor in in Lupus flares( stress also makes my Parkinson's much worse as well) And my brain fog and memory problems have been really exacerbated by this as well. I feel like my body and mind are about to completely shut down and I am going straight to basket weaving and wearing the dinner jacket that buckles up the back! :silly:

I am not sure how to make my wife understand that it's not that I don't want to handle things, it's that I can't handle things anymore. Any ideas on how to make her understand?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 1 month ago #39778 by Sandi
Replied by Sandi on topic Stressed Out Need Advice
Oh Dan, I'm sorry you are going through that. I have the same problem though and don't have a solution either. I know exactly what you mean...your brain does shut down and you just can't do it. I have a horrible problem just making phone calls and many things fall through the cracks because I can't manage it. It sounds so stupid and people don't understand it. I don't even understand it and it's hard to live that way. My husband is the one who delegates to me, always has, and he gets frustrated with my lack of ability. I used to juggle 20 things at once and never stopped. Now it takes me twice as long to do everything and I feel like I only have half a brain.

My Mom fell three weeks ago and broke her hip. All of her care, bills and workman's comp has fallen on me and my own stuff has been shelved and is getting dusty. I'm dropping balls all over the place and everyone thinks, "well, you're not working...". They don't get that there's a reason I'm not working. I have a sister who also isn't working but she does nothing to help. The anger I have towards her just makes it all worse. Stress like that is what killed a Lupus/ITP member a few years ago. She was doing too much and had a massive heart attack at the age of 54.

Stressful times seem to snowball and make the stress even worse. I just try to stay on an even keel because if I don't, I start to crack. I do have a therapist who helps me to realize that there is a lot on my plate and managing a chronic illness is a full time job. That's the only thing I can suggest to you. Get a therapist. Learn to breathe. You have it very tough because you were hit with too much too fast and have to deal with your own mourning and loss. Handling the emotional aspect of chronic illness can be all a person can handle at times without adding on all of the other stuff (finances, moving, marital stress, etc). I'll talk it through with you all you want. Sometimes just talking about it helps.
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10 years 1 month ago #39780 by DanC33
Replied by DanC33 on topic Stressed Out Need Advice
I have always done everything. I have been some kind on manager all of my life. It's just how my brain USED TO function. Didn't matter how much was piled on me I could just do it without much thought. Now I'm doing good to make comprehensible sentences. My wife used to get so irritated with me because of that ability. Now she has to deal with stuff. I still do a lot just not near as much.(In fact SSA put her as my payee because they say that I will only get worse) So maybe I need to give her more time to adjust?

I do agree that I probably should be in therapy. My PCP said just to give the word and she would make the referral. I guess I'm in a little bit of denial too.

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10 years 1 month ago #39782 by jeffrey71
Replied by jeffrey71 on topic Stressed Out Need Advice
Dan and Maybe Sandi too,

I had my own little issues with the mental aspect of things but NOTHING like what you both have had to deal with. I would only suggest that you focus on the positive things. We all have what we have and it likely is NOT going to change. We must cope, manage, and live.

I think I can understand what you guys are going through but really I cant. I admire you both and I am very proud to know you both along with all of the others. I think that the therapy may be a good idea if you wish to do it. I like meditation and zen. Breath and find your inner peace as best you can.

Dan, sometimes we just need to vent, and God knows you have reason! Vent as you will, I will listen. You want help screaming, I will scream with you or for you!

I will be here at any time! Never give up!

Jeff B)
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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 1 month ago #39784 by Sandi
Replied by Sandi on topic Stressed Out Need Advice
Dan - I try to put myself in my husband's place and think about how I would feel if things were reversed. I KNOW that I would not have the patience to deal with a sick spouse day after day, year after year. It gets old. I feel that way about myself, can't imagine how I'd feel if it were him. It's so easy to say 'in sickness and in health', but when it hits and there is no getting better, many, many feelings come into play. Fear, resentment, sadness, anger....the list goes on and changes daily. I'm sure your wife is going through many emotions and should probably have therapy too.

I have the conversation problem too, which is why I prefer e-mails if possible. I can't find the right words and socializing sucks the energy out of me. It's hard to lose so much of yourself and see others having full lives. I prefer to hibernate at home but really miss having fun.

You have many changes going on, Dan. Hopefully things will settle into what will be your new normal. I really hate that phrase, but it's true. I always thought 'damn it, I don't want a new normal', but when you're faced with a situation like this, you have no choice.

What is your wife asking you to do that seems too difficult?
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10 years 1 month ago #39801 by DanC33
Replied by DanC33 on topic Stressed Out Need Advice
Jeff, Thanks! venting sometimes helps more than most people outside this forum understand. And as I've said before, if it wasn't for the kindness and advice of people like you and Sandi(and too many others on this site)I really do think I'd be nuts.

Sandi, Since all this is new for me and my wife, I can really appreciate what you are saying. And the idea of a "new normal" is still unsettling for me so I know it's probably worse for her because she is now having to do more. As far as what too difficult, she was trying to have me coordinate the entire move(changing utilities, moving trucks ect..). We have moved a few times in our marriage but she never had to deal with much of it other than packing a few things because I did everything. Now I can't.

But I have some great news! Somehow my former employer got wind of what's going on and they along with some of my friends got together and are paying for a full service mover! The money just appeared in my account from a direct deposit and I got an email from my former HR manager explaining everything. They said that they wanted to lessen the stress and pressure of moving. They did ask that I not mention their name because they wouldn't do this normally otherwise I'd be shouting it from the roof! I (yes me the tough guy) cried like a baby for an hour after getting that email. In fact I still get choked up even mentioning it.

So because of this my wife really seems to have lightened up a lot! I don't think she realized how much I actually was handling(and failing). And she has also agreed to finding a counselor that specializes in forever diseases like Lupus and Parkinson's. So maybe there is some light at the end of this tunnel!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 1 month ago #39804 by Sandi
Replied by Sandi on topic Stressed Out Need Advice
Dan:

That is great news! I'm sure it has made things so much easier for the time being. Having to actually move furniture and other possessions is difficult for 'normal' people, nearly impossible for those who are ill. I am really beginning to believe in miracles at this point in my life. I'm glad you had one.

One day at a time, okay? For now, today is a good day.
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10 years 1 month ago #39812 by DanC33
Replied by DanC33 on topic Stressed Out Need Advice
Thanks Sandi, WE are living proof that miracles do happen. Just over 20 years ago things like Lupus/ITP were a death sentence. And I'm really starting to believe that things like kindness and generosity aren't dead yet!

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10 years 1 month ago #39849 by jeffrey71
Replied by jeffrey71 on topic Stressed Out Need Advice
Dan!

How about that??? Good news! Your past employer is a class act, I am humbled by their actions!
You keep your chin up! You are still Dan and a darn good person, husband, and father! You come and vent anytime you wish! I will even help you yell! I believe you are smiling now and that is a good thing!

Life is not fair but is ours to deal with. I have always said that it is not fair that that I was born so darn good looking and brilliant instead of rich.... (you may borrow that line if you wish!) B)

Your Friend!

Jeffrey
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10 years 3 weeks ago #40047 by DanC33
Replied by DanC33 on topic Stressed Out Need Advice
Well the move has happened. Now we are living in our new little apartment. My wife is still freaking out a little(our friends live 100 miles away)but she is adjusting. Now we are just exhausted.

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  • Sandi
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10 years 3 weeks ago #40051 by Sandi
Replied by Sandi on topic Stressed Out Need Advice
I'll bet you are! I think a move would put me into a catatonic state at this point. Take time now to rest up and settle in. Spring is coming so hopefully, that helps with morale.
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10 years 3 weeks ago #40058 by DanC33
Replied by DanC33 on topic Stressed Out Need Advice
We are taking our time unpacking, my wife and I are in that catatonic state. So today we are not doing anything! We are taking the kids to lunch and maybe a movie. That's about as exciting as it gets for me today!

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  • Sandi
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10 years 3 weeks ago #40060 by Sandi
Replied by Sandi on topic Stressed Out Need Advice
Well Dan, you've got me beat in the excitement department. I'm taking a day off from visiting my Mom in Rehab, so I have plans with my washer and dryer. Have fun! How old are your kids?

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10 years 3 weeks ago #40061 by DanC33
Replied by DanC33 on topic Stressed Out Need Advice
Sounds like an exciting day for you. My son is 17 and my daughter is 15 and they have maxed out on their stress levels as well.

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10 years 2 weeks ago #40095 by jeffrey71
Replied by jeffrey71 on topic Stressed Out Need Advice
Dan!

Glad to hear you are settling in now. It was all be better when home is stabilized! It has been a very nasty winter here where I live and I am ready to see it go! I remember when my daughters were you children's ages. Fun years! Mine are now 29 and 26. Boy my wife is old!

Jeffrey

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10 years 2 weeks ago #40151 by DanC33
Replied by DanC33 on topic Stressed Out Need Advice
My wife is still in denial mode, she just can't bring herself to start putting up pictures.(she says that makes the move final) I think she's lost it :silly: !

Jeffrey you are braver than I am "Boy my wife is old!"

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  • Sandi
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10 years 2 weeks ago #40153 by Sandi
Replied by Sandi on topic Stressed Out Need Advice
Women see things differently. Emotions rule sometimes. She'll get there. You've all had a lot of major changes and adjusting takes time.
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10 years 2 weeks ago #40198 by jeffrey71
Replied by jeffrey71 on topic Stressed Out Need Advice
Dan,

I have to agree with Sandi on this one. Your wife will be fine, it will just take a bit! By the way I am not brave. I can our run her!

Jeff
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10 years 2 weeks ago #40219 by DanC33
Replied by DanC33 on topic Stressed Out Need Advice
Jeffery she knows where you sleep! :laugh:
I know we've been through a lot the last year or two. So today she just laid in bed and I made her breakfast and dinner! I have also pretty much left her alone.

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10 years 2 weeks ago #40268 by poseymint
Replied by poseymint on topic Stressed Out Need Advice
Dan, great you got through that move, and with a little help from your friends! Like you said, takes time to adjust and there can be some grief in the loss of what we thought our life was going to be.

I was forced to sell my beloved house during the mortgage crisis- I had been diagnosed w/ ITP plus running out of money. Had to move into an apt. Anyway, I can relate to you finding the HUD housing. Because after a couple years I couldn't afford the fancy apt with swimming pool and had to move to low-income housing. Its not a bad place, all new inside, nice neighbors in a good area, pretty view- its time to renew the lease and the landlords have LOWERED the rent. I really shouldn't complain but I am so resistant to the place. I guess they say you have to be grateful for what you have to be happy- well, my attitude is not great.

So I told my son that I was resisting signing the new lease (even with the lowered rent)because I'm hoping that somehow a miracle would happen and we could move to a better place. He replied, "But this IS the miracle. Its an miracle that you found a place that you can afford!" Then he started listing all the good things about the apt and how we are so lucky... (awww kids are so smart).

thanks for sharing your story- I'm inspired to unpack some boxes (hey its only been a year!)
may you and your wife find much happiness in your new home! p
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10 years 1 week ago #40284 by DanC33
Replied by DanC33 on topic Stressed Out Need Advice
Thanks everyone!!
Poseymint you're kids are correct. We may never get back what we once had but we can be grateful for what we do have. My wife and I started a journal about what we are grateful for and once a week we sit down and write at least 3 things. Even if it is something small and may seem insignificant we still put it down.

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