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Post by girlie on Jan 18, 2018 19:30:14 GMT
True story. If I'm out of my pajamas by noon - it's a productive day...lol Most of my pajamas are just actual comfy clothes now. I wear really comfy sleep bras all of the time now so that I’m ready for anything even if I’m surprised by a pack of teenagers. I used to wear a bra to bed...but since my surgery I don't need to anymore. Prior to surgery...I had to for my own comfort.
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Post by DJ on Jan 18, 2018 20:00:12 GMT
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Post by girlie on Jan 18, 2018 21:09:39 GMT
Sometimes my husband will spew out a comment that p---es me off. Generally about how our lives have changed..and he can't wait until I'm better....and how I don't realize how it affects him. BUT, I do realize it affects him. I'm always encouraging him to go out with his friends and socialize. And, a few times I've said something along these lines : "YOU think it's difficult? Try being me. I can guarantee you it's waaayyy more difficult having it. I'm missing out on more than you are. At least you're still working, being productive...and socially, you can do whatever you want. Every single time someone asks me to do something...I hesitate...and I start thinking..how I might be feeling...and should I really be making plans...etc." "As hard as it is for you....it's waaaayyyyy worse to be me..." then I cry.
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Post by Admin/ Traveler on Jan 19, 2018 18:09:31 GMT
Sometimes my husband will spew out a comment that p---es me off. Generally about how our lives have changed..and he can't wait until I'm better....and how I don't realize how it affects him. BUT, I do realize it affects him. I'm always encouraging him to go out with his friends and socialize. And, a few times I've said something along these lines : "YOU think it's difficult? Try being me. I can guarantee you it's waaayyy more difficult having it. I'm missing out on more than you are. At least you're still working, being productive...and socially, you can do whatever you want. Every single time someone asks me to do something...I hesitate...and I start thinking..how I might be feeling...and should I really be making plans...etc." "As hard as it is for you....it's waaaayyyyy worse to be me..." then I cry. I"m so sorry, Girlie!! I to have had those discussions - then my hubby got Lyme and Anaplasmosis himself and the change was palpable! LOL! He looked at me about 3 days into the misery and asked if that was how I felt every day -and I responded with "yes, for most of my life".... his jaw just dropped. We've had a few discussions since then, and he's tole me he can't believe how hard it must be for me to carry on daily - and he's much more patient with me too now, especially when I let him know I"m having a bad/rough day, like yesterday. I knew he was feeling a lot better than I was, and that he really wanted to do something around the house, but he didn't because he understands when I'm having a rough day - everything gets on my nerves. LOL. So we watch movies instead. LOL!!! But, in the early years of our marriage, it was a lot different. He was so afraid of loosing me that he didn't really want to hear the truth of what was going on in my body and how ill I really was. But, I started from a different stand point than most - I knew I was really ill when we married and told him back then (18 yrs ago). I believe that made a difference for us - we never had that time period of "before I got sick" for him to be able to compare to.
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Post by Admin/ Traveler on Jan 19, 2018 18:22:54 GMT
One of my favorites, although it's not really funny:
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Post by girlie on Jan 19, 2018 23:04:06 GMT
Sometimes my husband will spew out a comment that p---es me off. Generally about how our lives have changed..and he can't wait until I'm better....and how I don't realize how it affects him. BUT, I do realize it affects him. I'm always encouraging him to go out with his friends and socialize. And, a few times I've said something along these lines : "YOU think it's difficult? Try being me. I can guarantee you it's waaayyy more difficult having it. I'm missing out on more than you are. At least you're still working, being productive...and socially, you can do whatever you want. Every single time someone asks me to do something...I hesitate...and I start thinking..how I might be feeling...and should I really be making plans...etc." "As hard as it is for you....it's waaaayyyyy worse to be me..." then I cry. I"m so sorry, Girlie!! I to have had those discussions - then my hubby got Lyme and Anaplasmosis himself and the change was palpable! LOL! He looked at me about 3 days into the misery and asked if that was how I felt every day -and I responded with "yes, for most of my life".... his jaw just dropped. We've had a few discussions since then, and he's tole me he can't believe how hard it must be for me to carry on daily - and he's much more patient with me too now, especially when I let him know I"m having a bad/rough day, like yesterday. I knew he was feeling a lot better than I was, and that he really wanted to do something around the house, but he didn't because he understands when I'm having a rough day - everything gets on my nerves. LOL. So we watch movies instead. LOL!!! But, in the early years of our marriage, it was a lot different. He was so afraid of loosing me that he didn't really want to hear the truth of what was going on in my body and how ill I really was. But, I started from a different stand point than most - I knew I was really ill when we married and told him back then (18 yrs ago). I believe that made a difference for us - we never had that time period of "before I got sick" for him to be able to compare to. My husband has tested positive...but he has minor, manageable symptoms at this point. I'm leaving it up to him - when he decides to treat...
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Post by Admin/ Traveler on Jan 20, 2018 0:54:38 GMT
Always the better option! I hope he does get started into treatments soon though - but I do remember and understand why he is waiting for you to heal before he starts to treat. Always a tough situation!
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Post by girlie on Jan 20, 2018 22:12:49 GMT
Always the better option! I hope he does get started into treatments soon though - but I do remember and understand why he is waiting for you to heal before he starts to treat. Always a tough situation! One of us needs to work. As it is, we're accumulating debt at this point. it's sad really. Never though I'd regret being a stay - at - home mom. But, dang it...if I had worked all those years...we'd be in a much better position financially. I have told my husband that it's up to him...if he wants to treat now...I'm fully supporting him in that decision. We will manage somehow.
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Post by Admin/ Traveler on Jan 21, 2018 18:25:54 GMT
Always the better option! I hope he does get started into treatments soon though - but I do remember and understand why he is waiting for you to heal before he starts to treat. Always a tough situation! One of us needs to work. As it is, we're accumulating debt at this point. it's sad really. Never though I'd regret being a stay - at - home mom. But, dang it...if I had worked all those years...we'd be in a much better position financially. I have told my husband that it's up to him...if he wants to treat now...I'm fully supporting him in that decision. We will manage somehow. As someone that has not been able to hold a steady job for the last 25 years, despite how hard I tried, I can certainly understand. Many, many things in my life would have been soooo very different had I been able to work, have my own income, and not depend on others or the gov't (Ha - as if they were of much help!!) just for trying to keep a roof over my head and food on the table for the kids. I often went without eating so the kids could - we often went without electricity as well. So many people forget that Lyme patients are not doing well out there! If nothing else, if we can bring awareness of all the "lack of" in a Lyme patients life, I would feel like we have a chance to start something good - but people don't want to hear it - they are wrapped up in their own lives and certainly don't want to have to think about those that are in the position I used to be in (before I married my current hubby). Kids and adults suffer far beyond the direct impact of these infections.
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Post by DJ on Feb 7, 2018 17:34:56 GMT
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Post by Admin/ Traveler on Feb 7, 2018 19:45:19 GMT
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Post by alyeska on Feb 9, 2018 5:17:30 GMT
Sorry I’ve been away. Major teenage drama. Things (including me) are very fragile at our house, but I think it’ll be getting better soon. Yeah, my husband is out doing social things as well and carrying on as normal while I have to take two weeks as a shut-in to recover after caring for my oldest son who was in the hospital with a major illness. I finally made it to an ozone treatment and the grocery store yesterday after two weeks on the couch, and I got overstimulated and couldn’t sleep. I was finally able to nap while the kids were at school, but today my muscles and joints feel like I just ran five miles. I can’t believe my legs are sore after walking up and down the stairs just a few times. That’s what two weeks out of commission gets me. I actually did a load of laundry by myself yesterday too. I was so proud of myself, and then tonight my 15 year old went OFF on me for not doing laundry. (Sigh.) I seriously just did a load for him yesterday! I’ve told him repeatedly that he can do it himself like everyone else or that he needs to at least carry it up to the laundry room. He was actually yelling at me for not doing enough chores. I don’t know how to get him to understand. I asked my husband to advocate for me, but he won’t. He tells me that our kids are just teenagers and that they won’t get it. I wish he’d at least try to explain it to them. (And this particular teenager who was really on me today is one of the GOOD ones! Ugh.) I hate feeling like such a waste of space. I wish my husband were more understanding and that people didn’t think I’m just lazy. I used to be an amazing teacher, and then I had three kids within 20 months. I cooked healthy meals, kept a spotless house, made and sold artwork, volunteered at school and a nursing home for the elderly poor, and rode horses regularly. Sitting on my rear watching TV and only going out for doctors’ appointments and ozone treatments is not how I pictured my life. The saying about getting a chronic disease is right. “You don’t get it until you GET IT.” I just really hope that I don’t die from this and leave my kids feeling guilty for being jerks. They’re already suffering enough. I hate Lyme SO MUCH.
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Post by Admin/ Traveler on Feb 9, 2018 17:47:08 GMT
View AttachmentSorry I’ve been away. Major teenage drama. Things (including me) are very fragile at our house, but I think it’ll be getting better soon. Yeah, my husband is out doing social things as well and carrying on as normal while I have to take two weeks as a shut-in to recover after caring for my oldest son who was in the hospital with a major illness. I finally made it to an ozone treatment and the grocery store yesterday after two weeks on the couch, and I got overstimulated and couldn’t sleep. I was finally able to nap while the kids were at school, but today my muscles and joints feel like I just ran five miles. I can’t believe my legs are sore after walking up and down the stairs just a few times. That’s what two weeks out of commission gets me. I actually did a load of laundry by myself yesterday too. I was so proud of myself, and then tonight my 15 year old went OFF on me for not doing laundry. (Sigh.) I seriously just did a load for him yesterday! I’ve told him repeatedly that he can do it himself like everyone else or that he needs to at least carry it up to the laundry room. He was actually yelling at me for not doing enough chores. I don’t know how to get him to understand. I asked my husband to advocate for me, but he won’t. He tells me that our kids are just teenagers and that they won’t get it. I wish he’d at least try to explain it to them. (And this particular teenager who was really on me today is one of the GOOD ones! Ugh.) I hate feeling like such a waste of space. I wish my husband were more understanding and that people didn’t think I’m just lazy. I used to be an amazing teacher, and then I had three kids within 20 months. I cooked healthy meals, kept a spotless house, made and sold artwork, volunteered at school and a nursing home for the elderly poor, and rode horses regularly. Sitting on my rear watching TV and only going out for doctors’ appointments and ozone treatments is not how I pictured my life. The saying about getting a chronic disease is right. “You don’t get it until you GET IT.” I just really hope that I don’t die from this and leave my kids feeling guilty for being jerks. They’re already suffering enough. I hate Lyme SO MUCH. My heart goes out to you, Alyeska! I don't think any of us believed this would be our life. That's why we have to work to change it at least some. The one thing I had going for me, is that my kids learned early in their life that Mom needed a lot of help. As teens, they often did all of the laundry. I saw it as good 'training' at the time, because if they didn't, it simply wouldn't get done. We had to hang clothes out to dry, and that alone would wipe me out for days - and I had a full farm to run!!! Everyone has a different parenting style though, so I don't want this to come off as 'parenting advice', but as two parents talking about teens. LOL. I had to deal with those 'teen attitudes' as well, but fortunately not too often. I was too sick to deal with much. And, please, never, NEVER forget this - you did not ask for this. You are NOT lazy. You are incredibly ill. You are just as ill as someone with congestive heart failure: Severity of chronic Lyme disease compared to other chronic conditions: a quality of life surveyIs Chronic Lyme Disease More Debilitating Than Other Chronic Illnesses? New CDC Survey says Yes.
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Post by alyeska on Feb 10, 2018 3:51:27 GMT
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Post by Admin/ Traveler on Feb 10, 2018 18:34:03 GMT
Okay, a little inappropriate, but I think it's still funny..... I know, I know... Bad Trav!! Bad Trav!!! LOL!
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Post by girlie on Feb 10, 2018 21:56:17 GMT
Sorry I’ve been away. Major teenage drama. Things (including me) are very fragile at our house, but I think it’ll be getting better soon. Yeah, my husband is out doing social things as well and carrying on as normal while I have to take two weeks as a shut-in to recover after caring for my oldest son who was in the hospital with a major illness. I finally made it to an ozone treatment and the grocery store yesterday after two weeks on the couch, and I got overstimulated and couldn’t sleep. I was finally able to nap while the kids were at school, but today my muscles and joints feel like I just ran five miles. I can’t believe my legs are sore after walking up and down the stairs just a few times. That’s what two weeks out of commission gets me. I actually did a load of laundry by myself yesterday too. I was so proud of myself, and then tonight my 15 year old went OFF on me for not doing laundry. (Sigh.) I seriously just did a load for him yesterday! I’ve told him repeatedly that he can do it himself like everyone else or that he needs to at least carry it up to the laundry room. He was actually yelling at me for not doing enough chores. I don’t know how to get him to understand. I asked my husband to advocate for me, but he won’t. He tells me that our kids are just teenagers and that they won’t get it. I wish he’d at least try to explain it to them. (And this particular teenager who was really on me today is one of the GOOD ones! Ugh.) I hate feeling like such a waste of space. I wish my husband were more understanding and that people didn’t think I’m just lazy. I used to be an amazing teacher, and then I had three kids within 20 months. I cooked healthy meals, kept a spotless house, made and sold artwork, volunteered at school and a nursing home for the elderly poor, and rode horses regularly. Sitting on my rear watching TV and only going out for doctors’ appointments and ozone treatments is not how I pictured my life. The saying about getting a chronic disease is right. “You don’t get it until you GET IT.” I just really hope that I don’t die from this and leave my kids feeling guilty for being jerks. They’re already suffering enough. I hate Lyme SO MUCH. Oh boy, do I know what you're talking about. I handled it all pre-lyme. After the town mill shut down, my husband left to work in a city 3 1/2 hours away...so he was only home on week-ends. That left me at home to work (almost full time), get my son to and from his job in town, cook, clean, and make sure my son was doing his homework...etc. no problem! Now, I'm a slug...here it is almost 2:00 p.m. and I'm still in my pajamas. I guess there's no point in getting dressed now...lol. I did the dishes today and a load of laundry... don't know where the time went...lol. Generally my husband is 100% supportive...and understanding...but a few years ago...there were times when he would say that I just wasn't doing enough...and that 'laying around' all day is counterproductive. And, when I do get better, I won't be able to do anything because I won't have the stamina after laying around for years. Do you really think your wife of 25+ years has just become lazy? Seriously? WTF. Do you think I want this life? No, I don't have fatigue...but I have other symptoms that take away my motivation to do anything....on my bad days. grrrrr.
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Post by alyeska on Feb 11, 2018 6:18:22 GMT
Sorry I’ve been away. Major teenage drama. Things (including me) are very fragile at our house, but I think it’ll be getting better soon. Yeah, my husband is out doing social things as well and carrying on as normal while I have to take two weeks as a shut-in to recover after caring for my oldest son who was in the hospital with a major illness. I finally made it to an ozone treatment and the grocery store yesterday after two weeks on the couch, and I got overstimulated and couldn’t sleep. I was finally able to nap while the kids were at school, but today my muscles and joints feel like I just ran five miles. I can’t believe my legs are sore after walking up and down the stairs just a few times. That’s what two weeks out of commission gets me. I actually did a load of laundry by myself yesterday too. I was so proud of myself, and then tonight my 15 year old went OFF on me for not doing laundry. (Sigh.) I seriously just did a load for him yesterday! I’ve told him repeatedly that he can do it himself like everyone else or that he needs to at least carry it up to the laundry room. He was actually yelling at me for not doing enough chores. I don’t know how to get him to understand. I asked my husband to advocate for me, but he won’t. He tells me that our kids are just teenagers and that they won’t get it. I wish he’d at least try to explain it to them. (And this particular teenager who was really on me today is one of the GOOD ones! Ugh.) I hate feeling like such a waste of space. I wish my husband were more understanding and that people didn’t think I’m just lazy. I used to be an amazing teacher, and then I had three kids within 20 months. I cooked healthy meals, kept a spotless house, made and sold artwork, volunteered at school and a nursing home for the elderly poor, and rode horses regularly. Sitting on my rear watching TV and only going out for doctors’ appointments and ozone treatments is not how I pictured my life. The saying about getting a chronic disease is right. “You don’t get it until you GET IT.” I just really hope that I don’t die from this and leave my kids feeling guilty for being jerks. They’re already suffering enough. I hate Lyme SO MUCH. Oh boy, do I know what you're talking about. I handled it all pre-lyme. After the town mill shut down, my husband left to work in a city 3 1/2 hours away...so he was only home on week-ends. That left me at home to work (almost full time), get my son to and from his job in town, cook, clean, and make sure my son was doing his homework...etc. no problem! Now, I'm a slug...here it is almost 2:00 p.m. and I'm still in my pajamas. I guess there's no point in getting dressed now...lol. I did the dishes today and a load of laundry... don't know where the time went...lol. Generally my husband is 100% supportive...and understanding...but a few years ago...there were times when he would say that I just wasn't doing enough...and that 'laying around' all day is counterproductive. And, when I do get better, I won't be able to do anything because I won't have the stamina after laying around for years. Do you really think your wife of 25+ years has just become lazy? Seriously? WTF. Do you think I want this life? No, I don't have fatigue...but I have other symptoms that take away my motivation to do anything....on my bad days. grrrrr. You hit the nail on the head! Do they really think we’ve just checked out or something? Do they think we LIKE sitting around missing out on everything? Why the heck would I just give up doing everything I love along with the chores? If I were just selfish, wouldn’t I still do the things that make me happy? It doesn’t matter if it’s fatigue, depression, pain, confusion... whatever else it is, it’s not like we’re choosing this! I would give anything to be half the person I was before. I’m at the point where I can hardly move groceries from the cart into my car anymore, and then I can barely drive home. (At least I’m still able to drive!) Luckily the kids have been home to put them away lately. I’m seriously considering getting a cane, but what seems so weird is that some days I don’t feel like I need it at all. How do you explain that to people? One day I’m walking like I’m 80, the next I look like absolutely nothing’s wrong. I can’t even explain it myself. I feel like I would be judged so harshly in my extended family and community. I used an umbrella to lean on onceonce, and my husband’s aunt acted like I was being dramatic. It made me never want to go to a family function in that condition again. More isolation right there. It’s bad enough to feel like I’m being judged by strangers, but it’s even worse to be judged by members of my own family. I posted a video about having someone else advocate for you to family and friends, and I asked my husband to do it, but he won’t. He sometimes acts like he understands, but then when I really need backup, he tells me not to worry about it because people won’t understand. They would if it came from him.
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Post by alyeska on Feb 11, 2018 6:22:17 GMT
Okay, a little inappropriate, but I think it's still funny..... I know, I know... Bad Trav!! Bad Trav!!! LOL! I sent a birthday card to my SIL who has six kids with kind of the same message as an ad for “Screwitol!” Lol!
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Post by alyeska on Feb 11, 2018 6:24:26 GMT
Here’s one!
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Post by Admin/ Traveler on Feb 11, 2018 17:58:57 GMT
Oh yes!! I can't count how many times I've heard that!!! Drives me insane!! I usually just tell them something like, well, I'm sure glad I don't look like I feel, I'd likely scare little kids. Of course, this one hits too close to home!! hosting image
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