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Lots Of Stress And Grief While Starting New Life


tnd

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5 hours ago, KayC said:

Is there ever a time when you're alone and free to talk, wail, whatever?  

KayC:  I am usually not alone here at my new family's house. Or if I am, not for very long. But that's sort of good because I was alone for so long before coming here. It actually helps me to be around people or to know that someone is here. Of course everyone likes their privacy, I know I do. I look forward to having my own place and being able to have privacy without having to go to the bedroom. I'd like to be able to cry without having to wait until no one is around or until I am in my bedroom. I think I am doing okay here tho.

I've been doing a little laundry and washing dishes. I know that's not much but it's hard for me. Getting to do even a little bit makes me feel alive and gives me a sense of normalcy. Francis is ready when I am ready to go on walks. That will be next. Maybe the more active I can be the less I will feel like wailing. My body has betrayed me in so many ways now that I don't know what/how much I can do anymore but I think if I could at least have some sense of normalcy, like a daily routine to keep up, I may be able to push myself a little further physically. I've been sleeping a little at night (finally) so that's progress! I think when we grieve we have to make adjustments to allow ourselves to recognize progress or an achievement when it happens. Every little positive helps with the pain. I learned that from having a medical condition and now I am using it to cope with my pain from grief.  

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19 hours ago, tnd said:

Every little positive helps with the pain. I learned that from having a medical condition and now I am using it to cope with my pain from grief.

And someday you will use what you have learned from your grief journey to help you with other parts of your life.

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15 hours ago, KayC said:

And someday you will use what you have learned from your grief journey to help you with other parts of your life.

KayC:  I hope so. I sure hope so. Today was exhausting, had a breakdown. I hate that every aspect of my life is being affected and on-hold. Almost wish there was something in writing that could actually tell a person when it's okay to give up. I am getting tired of riding waves and having everything up in the air. Being sick doesn't help. Can't even get ahold of my doctors anymore (thanks Covid). May or may not have insurance after December...if not, then have to apply for Medicaid. And start over with new doctors because it doesn't look like any of my current docs accept Medicaid. I am so sick of applying for things...and waiting for answers. Just want to see a doctor and try new treatment and get on with things. But noooo....gotta wait. Hurry up and wait. Don't even know if I will get Widows Benefits. So where's that manual that says when it's okay for us to give up? 

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You would figure that there would be some uniformity and standardization with medical record management and distribution in this “digital age”.  Unfortunately, it’s one of the downfalls of having a decentralized  health care system.

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12 hours ago, steveb said:

Early on in my grief, the mere act of making breakfast would wipe me out.  I guess what I’ve learned through my grief journey is to let go of the inconsequential stuff,

steveb:  That's exactly what life is like for me right now, made more difficult by the Sarcoidosis. I can maybe get the bread out but too weak to get it over to the toaster or butter it. So I will just eat it cold and plain. I do however, find that when I plan my day and pace myself I do okay. I struggle but going slow and picking/choosing chores/tasks wisely helps. When I've completed tasks then I feel a sense of achievement or even a little bit of normalcy. But one of the things that makes it hard is explaining it to other people. They see me struggling and think I'm doing worse. I fear they will think I am lazy. That is why I want my own place so I can do things I need to do without feeling this way or feeling like I am being watched. Grief and having a chronic illness is a bad combo. Sometimes it just exhausts me or one little "burp" in my day sets me back. Like being on-hold on the phone with the SSA for an hour. And now my doctors...every place, including pharmacies seem to have very long wait times now. Then I breakdown. And sometimes I cry hard at night when no one can see/hear me. That exhausts me too. Perhaps tho I will for the most part, be all cried out by the time I get my own place and won't have to do any wailing.  

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8 hours ago, KayC said:

My hope is this will go smoother for you than anticipated, maybe you'll luck out?

KayC:  If I do have to apply and go on Medicaid then so be it. Out of my control. I will just have to pick new doctors on the list that accept Medicaid and be glad for that. I don't know if there's a list but if I have to, I will find out. And then hopefully some day/some year I will finally get to start on Humira or a better treatment. I wonder if doctors even know what their patients go through just to be seen and treated. The first doctor that lectures me about why I haven't acted sooner just may get an earful.  

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3 minutes ago, steveb said:

tnd, being exhausted seems to make time go slower

This "slow as molasses" pace also adds to the frustration, which then is a precursor to the meltdowns. I use to be very quick on my feet and a real doer. The go, go, go type. Patience was not my middle name. So much to adjust to...instead of a ten speed I am riding with the big fat tires, only one gear (slow) and even training wheels. 

8 minutes ago, steveb said:

this site is a wonderful sanctuary.

I find if I don't get to retreat to here at some point every day, I feel even more out of sorts. 

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1 hour ago, steveb said:

being exhausted seems to make time go slower.

I can definitely agree with this statement and the constant pain and suffering does too. I don't know how I make it sometimes because the days just drag on. This is why I come here because you understand.

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tnd,

19 minutes ago, tnd said:

Ideally, a second battery would be great but insurance doesn't cover 2 batteries, only one. And until my Widows Benefits are approved I am afraid to spend what little money I have left.

I just don't understand how the system doesn't understand the "real" world, not everything is black and white and simple as nope we don't do that or it's not allowed. In your case mobility is important and like the delay with the benefits things don't always fit into a "box". Why doesn't anyone have a workaround for certain cases or situations. Someone has to be in charge and able to make executive decisions, I am just venting frustrations that I am experiencing and seeing in your case as well. As I said before nothing makes sense anymore. I don't know if your device can plug into a vehicle or if the transport vehicle even has the ability to do so but it is maybe an option. Is there a possibility that a "store" like Goodwill may have had a donation of a battery? ask around because sadly when someone does die the equipment isn't needed any more. I say that because I have donated items to "them" Maybe contact the manufacturer and ask if they can help (never know) I know you don't want to but if it helps you get the care needed.

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17 hours ago, tnd said:

But I don't know if I could carry my portable AND roll a tank by myself.

You should be able to get someone from their office to help you inside, or the driver to help you.  Most places are willing to do that, you might call and ask.

My sister threw away her old walker, I was upset as it could have been donated to someone who needed it, but she didn't try that first.

 

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KayC,

Right now I have a wheelchair, a transport chair, a wheeling walker, a walker, a side walker, a cane and a few other items from everyone dying on me and I am waiting to see if the "good sister" needs anything before doing anything. I had asked her to see if anyone needed anything before donating to "Goodwill" and right now I want to make sure she doesn't need any of it. I "know" that there is always someone out there it is a matter of connecting. If my wife was still alive she would have access to many people who could probably help find a place for it.

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The Lyons Club might take those things off your hands as well, we used to have one hear, I tried calling them but learned they've been gone a few years now. I'm so glad you'll give them to someone who could use it, many can't afford their necessities.

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On 9/21/2021 at 10:31 AM, KayC said:

You should be able to get someone from their office to help you inside, or the driver to help you.

KayC:  Nope, not this service here. Probably for liability (legal) reasons. 

 

On 9/21/2021 at 10:31 AM, KayC said:

My sister threw away her old walker, I was upset as it could have been donated

KayC:  She should have kept it. She or even yourself might end up needing it. You never know.  

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On 9/21/2021 at 11:46 AM, John9 said:

If my wife was still alive she would have access to many people who could probably help find a place for it.

John9:   Might want to check your nearest Shriners group or childrens hospital or a cancer treatment center/hospital. I wouldn't sell these kinds of things on craigslist because someone will buy them and turn around and sell them for more money. I may not know you very well but I think I know you enough to guess that you'd rather donate to someone who doesn't have the money or resources to get their medical equipment/devices. People like my SIL for instance, is the type to buy stuff on craigslist or ebay and then turn around and jack up the price for resell. Can't even stomach the thought. She enjoys (another way of saying she's addicted) to shopping like that and then the ensuing "wheeling and dealing" that comes with it.    

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tnd,

Yes that is why I was trying to have the "good sister" see if she knew anyone in need or if her family knew anyone. My connections are gone and I don't know anyone and my energy level is shot right now. I am not in a hurry to get rid of the things because they are "safe" right now but if I can "give" them away I would rather do that so as you say nobody profits from it. I saved all of it because I wasn't sure whether MIL would slide further into not being mobile and didn't know if it would be needed.

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30 minutes ago, John9 said:

My connections are gone and I don't know anyone and my energy level is shot right now. I am not in a hurry to get rid of the things

John9:  Then I would put this on the backburner for now. Put it away (maybe MIL's bedroom) so it will be out of sight so it can't stress you out looking at it. You don't need it to be a reminder of another task you have to take care of. At least not right away. Please start putting yourself first as you see the opportunity to. It's about your health and clearing your mind. You've been taking of everyone else and so much for so long I am sure it will feel uncomfortable to think of yourself now but I'm telling you, you have to do this for your own sanity and as a way to cope. You don't need permission to do this, it's your call. If you can't entirely relax, at least relax in ways that you can, maybe little by little. Putting medical equipment on the backburner for now would be one way of doing something for yourself. I know this will sound silly but for me, instead of neatly folding my towels and clothes after washing them and putting them all nice and neat back into a suitcase, I gave myself permission to just leave them in a heap on top of the suitcase to be folded later. Somehow this silly little act makes me feel in control during a time when so much of my life is out of my control. So any little thing I can do for myself to feel better, I do it. If I want to go to bed at 8pm, then I do it. If I want to watch TV at 1am, then I do it. And if I don't want to fold my laundry, I don't. And I am a neat freak and yet, this feels a little liberating. Lets me know I am calling the shots. So...put the medical equipment on the backburner.      

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19 hours ago, John9 said:

I lost it when explaining all of the deaths this year and it's been raining for 24 hours with another 24 hours coming and that just tears me up now and it's cold (50's). I would stay in bed if I could but I can't sleep and too long in bed actually causes me physical pain.

John9:  I'm sorry you had such a bad day. That's when it really sucks and I'll feel like everything is caving in on me. And these days, there is just no escaping it. When it happens, it happens and I can't stop it. Sounds like you experience the same thing. And you're right, staying in bed too long causes even more aches and pain. We don't need any more problems than what we are already dealing with. I try to keep a routine every day but as you know, it's hard to and life gets in the way. Problems arise and before we know it, even if it was something small and unimportant, we didn't get to do what we wanted to do. Sometimes now it seems that just deciding to NOT do something or just having a cup of coffee is the only personal pleasure (if you can call it that) that I have. I really don't enjoy anything either. The feeling of enjoyment seems so basic but obviously it is more than that and takes a little work. I don't have it in me and I'd like to have it back.

John, we were robbed. Or at least that's what it feels like. We were robbed from feeling any kind of enjoyment in our lives. But I'd hate to think that it went with my husband. I know the enjoyment I got FROM BEING with my husband is gone but I'd like to be able to enjoy SOMETHING HERE in life again. Right now I sort of depend on little distractions to keep me going. For instance, Francis's grandchildren. I've been babysitting them and they make me feel good -until they wear me out, then not-so-good. Another distraction are my cats. Yesterday it was eating a PBJ sandwich, which I had a hankering for and had not eaten in a long time. Anyways, you had a bad day. That one is now out of the way. There will be more, no doubt but hopefully today or tomorrow won't be so bad. Try a PBJ or making yourself a good sandwich. I know that sounds weak but I'd honestly give it a try. Eating is suppose to be a basic pleasure. We're suppose to enjoy food. Or at least when it's in us it's suppose to make us feel good. My appetite hasn't been too good and I've lost 19 pounds in 19 days. I'm not worried because I'm overweight altho that was a rapid loss. I'll have another PBJ again today. For the purpose of distraction and to put something in me that I need. If I enjoy it, then good. If I don't, it's still good because I needed it. Pick a sandwich and give it a try. 

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On 9/22/2021 at 7:02 AM, KayC said:

The Lyons Club might take those things off your hands as well, we used to have one hear, I tried calling them but learned they've been gone a few years now. I'm so glad you'll give them to someone who could use it, many can't afford their necessities.

Or a local senior center.  After John's surgery, he needed a walker with seat while he went through physical therapy and rehab.  A friend said I should contact the senior center close by.  They had a whole room full of various donated walkers, wheelchairs, canes, etc.  They maintain them, so we know they're safe.  All I had to do was sign some paperwork and we had a free 60 day loaner.  It was really helpful.

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I'll look into where to donate when my brain clears, still very foggy and current events not helpful. Too much hurry up and wait going on.

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42 minutes ago, John9 said:

Too much hurry up and wait going on.

John9:  That dang "hurry up and wait" mode is a real pain. I get sick of it. I don't know if it's the grief talking because I've never exactly been known for my patience. When someone tells me to be patient or to calm down, that acts like a trigger for me to want to tell them to stick it where the sun don't shine. How patient has a person got to be when every day we wait and wait and wait. People really have no idea what us widows/widowers go through. And they ask us to be patient... 

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tnd,

 

20 minutes ago, tnd said:

People really have no idea what us widows/widowers go through. And they ask us to be patient... 

Sadly this is about the truest statement I have heard in a while. I have never had to deal with these kinds of delays and the pandemic did none of us any favors, but dealing with "everything" now is like swimming in quicksand or molasses. And it just seems like it is standard operation procedure still, they don't care or don't understand how it is so stressful along with everything else going on.

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23 hours ago, John9 said:

I have never had to deal with these kinds of delays and the pandemic did none of us any favors, but dealing with "everything" now is like swimming in quicksand or molasses.

John9:  This is why I don't understand how people still don't listen or get it after I've explained myself (the grief) and my situation to them. They act as if it's no big deal, only temporary and certainly don't understand how EVERY LITTLE THING is weighing us down right now. And believe me, I've gone through some pretty major stuff before but this kind of grief from losing our spouse is enormous and there is no other pain like it. 

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tnd,

 

12 minutes ago, tnd said:

And believe me, I've gone through some pretty major stuff before but this kind of grief from losing our spouse is enormous and there is no other pain like it. 

I understand this very well and sadly today is a very emotional day. Again there is no new reason just the reason we are here. It is sunny and 72 degrees after 3 days of rain so it should be a "happy" kind of day but there are none of those anymore. I don't like being or feeling this way but this is how I am right now and no matter what I do I can't stop crying today. I have said that I miss my wife more each day than the day before but it isn't even to the expected breaking point of the "Holidays" yet. I suppose the fact it is a Friday and my brain is trying to make sense something it triggered me in a way I don't fully understand. There was no event today, no sad song, nothing that I am aware of,  yet here I am crying to the point of my eyes are burning. I am trying my hardest to make it through all of this but it is killing me (slowly).

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1 minute ago, John9 said:

There was no event today, no sad song, nothing that I am aware of,  yet here I am crying

John9:  I go through this too. Seems to be no reason for it but there is. We are grieving and some days hit us harder than others and we can't control it. I can hold it in a little but at some point I have to go be alone and let it out. I cry every day. The pain hasn't gone away either so I am just starting to accept that I will carry this pain a long time. Sometimes wish I could have a drink, just a shot to calm my nerves but because of all the meds I'm on I can't. Besides, I know drinking wouldn't help and in fact, act as a depressant. But still, I wish there was something quick and easy I could do each day (aside from praying) to help with this pain. If you start to cry, cry until you are done. If you cry again later or tomorrow, same thing, cry until you can't. We don't have to hold it in. We have to do what we have to do. Keep a cold wet washcloth nearby for your eyes. 

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John9:  That's funny about your cats stealing washcloths. Scrap that idea. And good thing you don't drink. I just get tempted, that's all. So far I haven't cried today but sure I will. Cried upon waking up yesterday morning. But not today. I'm sorry you are having a cry day today. Maybe you are anticipating the weekend. Evenings and weekends were me and my husband's times. Well, morning breakfast was too. I am going to have to figure out how to spend my time now without him. I don't (or try not to) think about that right now but know that once I get my own place, I am going to have to do something with myself and not just sit and be depressed every day. I know I will probably still cry every day but I don't want to spend the rest of my life depressed. I want to get out like a normal person, do my own shopping and then go home and be able to tell him about it. I don't want to become "stuck" and wither away without at least trying to do something.  

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tnd,

I have been trying to get out of the house (and my head) but it just isn't working if you saw my other post from yesterday on "do they show signs". I want to be alive if I am alive and not be a crabby old man waiting to die, but if I can't I don't know what I am supposed to do. I really am trying my hardest just to make it day to day. As you and I both have stated this is by far the hardest most stressful grieving I have experienced and coupled with everything else just makes it so much worse and ALMOST unbearable to the point of absolutely giving up on everything.

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5 minutes ago, John9 said:

As you and I both have stated this is by far the hardest most stressful grieving I have experienced and coupled with everything else just makes it so much worse and ALMOST unbearable to the point of absolutely giving up on everything.

John9:  This is why having a PBJ sandwich feels good to me. If there is nothing else I can control today except for making a dumb PBJ, I'll take it. Better than nothing. After all, I'm the one who thought of it, I'm the one who gets to spread the peanut butter and jelly on the bread and then I'm the one who gets to eat it. It's something that is my choice that I was able to control. I own it. A dumb old sandwich. I don't care tho...made me feel a little better. And it didn't taste too bad either. Just when I thought I was out of choices and that NOTHING was in my control any more, a PBJ rescued me!   

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tnd,

That's funny, because sometimes if I was busy doing something for "someone" and my wife and MIL already ate something for dinner my wife would offer to make me something and I would tell her not to bother I was just as happy having a PBJ or a bowl of cereal even though she would have cooked something for me. This actually took place the Tuesday before she died I was at the house my son is living in helping him all day (instead of being with my wife) and because I wasn't home she cooked something for her and MIL only. This is also one of the things that bothers me because I wonder if I had been with her that day maybe I would have noticed something that might have made a difference and got her help sooner (2 days) These things loop and make me crazier than I already was. My wife didn't eat peanut butter but once or twice a year, and she hated cleaning the knife and would tell me to make some friends and let the dogs lick them because "we" loved peanut butter. I still eat it and actually that has been my dinner many times since she died, sandwiches, cracker, wraps. Just don't have any "friends" to lick the knife. Sorry I turned your happy PBJ story sad.

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38 minutes ago, John9 said:

Just don't have any "friends" to lick the knife. Sorry I turned your happy PBJ story sad.

John9:  That's quite alright. And understandable. My point is that no matter how small or silly something may be, if it helps me to feel that I still have control over some part of my life, then I'm going to use it for that reason. 

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15 hours ago, John9 said:

I agree with you as far as alcohol being a depressant but I don't drink and never have because I was "raised" by alcoholics

Me too, John.  I choose not to drink, raised my kids in a teetotaler household.  My son has elected to never have his first drink and find out (wise) and my daughter has a drink maybe once a year at a wedding and she's not alcoholic, thankfully...they had a 50/50 chance, it's on both sides of their family.  It would be easy for someone to lose themselves in drink with this grief, but it does nothing for us, only furthers the depressive rabbit hole...

 

15 hours ago, John9 said:

As far as the washcloth, my "wife's" cats steal all wet washcloths

You could keep one in a covered dish on your coffee or end table.

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14 hours ago, tnd said:

This is why having a PBJ sandwich feels good to me.

I can't have bread but enjoy it on pork rinds (so does Kodie) but I'm suspecting I'm allergic to it, need to check it out further...it's my fault, I just bought four jars off Amazon because the stores were having a hard time getting it due to CA fires destroying crops.  I seem to get allergic to everything I love!  Now what do I do with $36 worth of unopened peanut butter!

 

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KayC,

As far as the peanut butter check to see if Amazon will take it back, not sure about "food". The Veterinary office my wife worked for uses peanut butter as a distraction for the dogs while they are treating them. The problem with the cats is they are like "toddlers" and anything is fair game, they used to constantly knock my wife's water glass off the table and counter even when we were sitting right there by them. It seems to be a game for them and also one of the reasons my wife wanted the specific breed-Oriental Shorthair they are very "smart" but also very much troublemakers. I tried to tell our son that alcohol isn't his friend and he comes from a "family" that  can't handle it because both sides had alcoholics and the odds aren't good but he has to make his own decisions, I can only make comments or state "facts". He "knows" he shouldn't smoke either and I could never stop that either because when he started both his Mother and Grandma smoked and who listens to the one who doesn't. My wife and I were into the "Holidays" because it was a chance for family to visit but since our son got older and with the new cats being so crazy we didn't really do as much as we used to do so not decorating won't bother me as much as her just not being here. There will always be some sort of a trigger about something and if I am "forced" to be alive I have to figure out how to deal with them as much as they hurt me. I also agree with the comment about how for some people "certain" deaths are no big deal and maybe that is their coping mechanism even though it might really hurt them, I have said before that as a society we don't do grief very well. Death has always been hard for me because there have been so many, but never as many as right now and so close together so that I can't even focus on one before the other hits. I just really need a break from all of this compounded grief and all of the things associated with it. It just seems like I am unable to get anywhere with anything and it all comes down to the unexpected death of my wife. The others I knew what I would have to to do and pretty much wasn't worried about how it would be because my wife would be there to help me with what needed to be done and I would have been there for her to help her with the grief over her Mother but now it is just too much. It just hurts in every way possible and I am not sure how to keep it up.

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21 hours ago, John9 said:

I agree with you as far as alcohol being a depressant but I don't drink and never have because I was "raised" by alcoholics and my genes won't handle alcohol very well and even if it did, the problem is still there the next day and you might have a headache too. This is only my observation from my personal life and not a social comment on anyone who wants to drink alcohol.

Absolutely.  I have been a light social drinker my entire adult life.  I did not drink as a teen, though my dad was a one-glass-at-dinner wine drinker and would let us "taste" sometimes.  By taste, I mean two sips.  There are no alcoholics in my family that I know of, but I have been vigilant to not turn to alcohol as a crutch or solace.  I told a friend that I don't want to become known as, "The drunk widow who lives down the street."  Besides, I don't like the way I feel, during and then the next day, if I have too much.  I did a few times in my 20s and realized that I didn't like it.  I did not drink and drive, especially because I had friends in high school who were nearly killed (one permanently disabled at the age of 17) by a drunk driver 5 minutes after they dropped me at home one night.

John was a light social drinker in his 20s and early 30s, but stopped entirely when testing showed that the reason his intestines were inflamed so often was he was part of the 2% or so of the population whose bodies react to the enzymes in alcohol the same way celiac patients react to the gluten in wheat.  It wasn't worth it to him, but he was fine with me and our family and friends having a drink or glass of wine.  We have friends who are vintners and whenever we went to a winery event, we'd just hand the keys over to John right up front.

I think that in grief especially there's a fine line between a bit of alcohol being relaxing and veering into too much while trying in vain to dull the pain.

 

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13 hours ago, KayC said:

It makes me want to sock them in the face...hard!

KayC:  That's exactly what I wanted to do when my SIL told me I was "playing victim". My mistake was actually telling her that I wish I could knock her block off because she told my brother and after that, they said I needed psychiatric help. They perceived it as a threat and felt I could be dangerous and mentally ill. And that's also when my brother said I should either "go get myself fixed" at a mental hospital or go live on the street. All these years and he still doesn't believe me when I've told him how wicked my SIL is towards me when she and I are alone. Yes, I do wish I could knock her block off. Trying hard now to move on and forget the two of them.  

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13 hours ago, KayC said:

As I hung George's ornaments on the tree and the Christmas Stocking I made him, it started a new tradition, one of bringing HIM into it, we put messages to him in his stocking. 

KayC:  That is a very nice idea. I like that. Do you read the messages aloud with each other or, if you don't mind my asking, what do you do with them? I imagine George's stocking is pretty full now.  

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foreverhis,

I agree when you say the fine line part of the response about trying to dull the pain. Sadly the PAIN is real and it is mine and as bad as it may sound if I don't feel and experience it, I will never be able to process this whole mess. I don't like feeling miserable all the time but those are my feelings and I can't pretend that my wife didn't die and I can't pretend I am fine. It hurts, it sucks and I hate it and if I ignore that I feel that am dishonoring my wife's memory. This is me and this my story and this is my pain and sadly it will always be with me and I have to feel it.

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