How do I gain better husband support

I hate grocery shopping too, Walmart's concrete floors make me cringe when I think of them.

I need some advice from other EDSers that have known about their disability longer and have mastered still being able to be a worker/homemaker/keeping themselves looking nice, etc etc etc.

I also need to know, is my husband right? Am I just making excuses or is enough really enough and I SHOULD be allowed to relax without feeling guilty? Should I let some things go?

Another situation lately is at WORK. Teachers have duties outside of teaching: mine has been to do a LOT of walking (A LOT) to get the students to the crossing guard after school on pavement and up and down hallways and outdoor hills. P.S. I live in a Tennessee and the A/C in the classrooms where I teach has been broken for over a month now and I overheat easily. I have even been so dizzy that I see stars. I have asked coworkers to switch duties and they act like I am a huge complainer. "You act like your 9 months pregnant...bla bla bla". I tried to tell the team lead that I have a connective tissue disorder but she could care less. Are usually don't talk about EDS at work at all because people in the teaching world are really mean to others. It's like survival of the fittest there :(

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  • I feel you! I have EDS and POTS and am also married, 28 weeks pregnant, and a full time high school science teacher. I'm going through a LOT of stress and anxiety right now so I totally get it. My husband knew about my health way before we got married so I think that has helped, but there are days where he tends to think I just always blame not wanting to do something on my health. It's tough. Im currently trying to find a virtual teaching job so I can stay at home and take care of my future baby girl and my health. I'm not getting far and at the same time, majorly struggling to get through work and get the house ready. I wish I had more advice but I think I'm right there with you on some things. My prayer life needs to be stronger I know; maybe I wouldn't worry as much.

  • Xxxxxxx Yzzzzzz, let's be friends, perhaps we could fugure this all out together. I do think your PRAYER advice is worth its weight in gold actually, so lets both get ON IT. I have a feeling that God knows and cares about our situations very much. I have also thoyght about virtual teaching jobs, please let me know if you fet anywhere with that and i will do the same.

  • That would be wonderful! I just got some she reads truth bible study material to kick me into gear into focusing on Him more than what's going on elsewhere! K12 and connections academy have openings! Not sure what you teach or where, but I've been studying up on them and they're great! I've got a few applications in.

  • I think you're doing a lot. Is it possible financially to get a cleaning lady? Being chronically ill is a full-time job in itself. It sounds like you need to have a conversation with your husband about expectations and what you're honestly capable and of. I personally saw a health psychologist for many years when I was at my worst physically and that helped tremendously. They could help you find different coping mechanisms instead of stress eating.

  • First of all, you are not crazy. You are not making excuses. I am also walking a lot and am working over 40 hours, not including reports I write while I home. My "main" diagnoses are Chiari, EDS, and POTS.

    I'm very sad to hear that your husband is making you feel that way. When we get pregnant, the relaxin hormone likes to exacerbate all of our EDS symptoms. Please know that you are doing what you can to provide for your little one's future. In fact, you are doing everything you are physically and emotionally able to do to provide for him or her. Is it possible to have a doctor speak with you and your husband about your health at this time? Perhaps a coming from a medical professional would offer some understanding from your husband? I can't imagine not having that support at home and am so very sorry you are having to go through that. The next option would be a cleaning lady, if you're able to do so.

    As for work, if it is necessary, you can get a note from your doctor about appropriate modifications that need to be made in order for you to be able to work. If you are pregnant and also a have documented chronic illness, employers tend to want to be cautious about how they proceed for liability issues. The department of labor expects that much from our employers. I am now allowed to "take breaks" from walking, in between patients.

    Prayers for you, friend

  • Xxxxxxx Yzzzzzz, I think i may have POTS too. Have all the symptoms.

  • Xxxxxxx Yzzzzzz, i have never heard of a Health psychologist. sounds like a perfect idea.

  • Xxxxxxx Yzzzzzz, already loving you and your advice. I talk to my mom about it for a while and she has made some exact same suggestions. I asked my principal if I could change duties and told him it was mainly because of her pregnancy and he said yes, so that has changed. My coworkers probably still think whatever they want to but, I guess it's none of their business. I do think maybe I should get a medical note though as well. I hired a cleaning service one time a couple weeks ago and it was amazing. I don't know if I can afford to do that all the time. But I do think talking with my husband about realistic expectations would be the best option.

  • The one I worked with specialized in GI because I was having debilitating GI issues. My husband (bf at the time) came in for a couple sessions so she could give hime a better understanding of my issues.

  • I told him that I might see a therapist and that he is welcome to come. At first I think he was a tiny resistant but then said he might.

  • I think that is a wonderful idea.

    I see you're in Nashville. My husband and I grew up in Murfreesboro. All of our family is still there and we plan to move back some day!

  • Great idea on having hubby join. Also, I did hire a cleaning service a couple weeks ago but my parents paid (when they really can't even afford it). My hubby think we can't afford it.

  • Yes: we live in Nashville. My parents live in Murfreesboro. Better move soon cause the cost of homes in both areas are steadily increasing daily. Love it here. We lived in Georgia before here. I see you do now. Also watched your adorable gender reveal video. Woo hoo. A girl. Congrats.

  • Thank you!! We're in Columbus, just across the Alabama border. My husband is getting is doctorate at Auburn and drives there (about 40 minutes) everyday. So we're stuck here until he graduates! Haha. We definitely miss Middle TN. Thanks so much! We're really excited to meet her in a few weeks!

  • A few weeks sounds amazing. My countdown below.

  • It'll go fast!!

  • Can't wait to see a pic of your baby girl in this group.

  • Hi Richae. I agree with the above suggestions of having your MD(s) talk to your husband. Take him to as many doctor's appointments as you can. It might help for you to see a health psychologist and possibly a marriage/family psychologist together. Do as much as you can to help him learn about EDS and the struggle that you are going through. I've been married for 7 years in June, and while we have had some rough patches while figuring out how best to deal with everything, my husband has been incredibly supportive. I have had chronic pain since before we were married, but was completely bed-ridden for all of 2015 and most of 2016 (partially due to EDS, partially due to other health issues). This was a huge change because before that, I had always been working and/or going to school full time for no less than 50 hours per week. We had to find a way to have enough income while I wasn't working, and ended up buying a couple of rental properties. My husband changed his job and we moved so he could work from home and have a flexible schedule most of the time. I am currently 23 weeks pregnant and back in graduate school, so I won't have to worry about working until at least next June, but I went back in order to become qualified for a less physically demanding, and more flexible career. Basically, we changed almost every aspect of our lives. It was not easy, and I'm sure this is not what you want to hear, but sometimes it's the best/only option. And our marriage is actually so much stronger having gone through all of this. My husband is incredibly understanding, and when I need him to, he cooks, cleans, and takes care of me. We have had arguments in the past similar to what you mention, over clean eating, etc. The stress of these arguments was exacerbating my pain/illness much more than any food that I ate, and eventually we realized this. Marriage is in sickness and in health, and your husband needs to trust that you're doing the best that you can, and it needs to be enough.

  • Is your husband allergic to cooking and cleaning?! Marriage and parenting is supposed to be a partnership. Other than the logistical solutions (cleaning person, grocery delivery, freezer meals/quick easy meals), I think you need to get to the root of the issues with him. Maybe that entails couples counseling or maybe just a serious ongoing discussion and strategy going forward. It's only going to get more difficult when baby arrives.

  • Amen at what you said @ Casey Rae. My husband has to know my best is good enough.

  • I love all of your suggestions and will take your wisdom to heart. Thank you for sharing it. Prayers for your master's Degree.

  • Xxxxxxx Yzzzzzz, I totally agree. I have allowed too much disrespect to this loing and were having a baby together now, so I will. o longer allow it. Thank God I have God, cause i know getting my husband on the same page with me is going to require A LOT of work at this point.

  • It sounds like you work really hard and you should have an input on what you do with your earnings. Hiring a private cleaning person can be less expensive than a large service. Even if you did it twice a month for a deep clean that way it would be easier on you.

  • Thank you so much. Prayers to you during this difficult time as well. It will get better. Feel free to message me any time ❤️

  • Awe, thanks!!!

  • Wishing you all the best. It's not easy, but taking a stand is the first step. You got this, but more importantly you deserve it!

  • So we had premarital counseling with our pastor before we got married, in which we went through a variety of Bible verses about marriage and the roles of husband and wife. I think it helped a lot for us knowing what to expect once we were married. The focus wasn't on specific duties, it was on the importance of compassion, patience, love, and understanding.

    I saw you say in another post that you're a christian. Is your husband also?

    If so, I think he would do well to remind himself what it means to be a christian man, upholding the fruits of the spirit.

    He is only stressing you more with expectations. And honestly, 38lbs in 8.5 years is not bad at all lol

    As for you, can you swim? Swimming laps is great exercise for us. But it also a time to relax. The water supports and sooths us, so we can let our body and mind go while swimming at a gentle pace. It's a little bit of "Me time."

    The reason I would want you to worry about your weight is because of the effect it has on your joints. The more you gain, the harder it is on your back/hips/knees/ankles and the more pain and more difficulty you'll have walking. So finding some gentle exercise isn't ankles bad idea. Also, watching what you eat. It's not a bad idea to get on a health kick while pregnant, as those healthy foods will benefit the baby.

    But as for the balance... you've just got to make things routine.

    I work one FT job and one PRN job. Making exercise and sleep part of my routine makes it not seem so tedious.

    As far as cooking and cleaning, the majority of people who work full time (healthy or not) clean on the weekends. That's normal. It's not normal to clean everyday. And cooking? Well if you're going to add exercise to your busy life, you've got to give up something. So unless he wants you to be a stay at home mom or never exercise, he will have to get over the lack of cooking lol.

    So yes, you can work on somethings but he also needs to have realistic expectations. And he can help clean too.

    My husband does the trash and the laundry, I do the rest. It's a good balance because the laundry would usually take the most time and I wouldn't get anything else done.

    I clean on the weekend, not during the week.

    During the week, all I do is pick things up (throw trash away, throw husbands shoes that are in the middle of the floor to where they belong, etc) as I go if I pass by something easy and simple.

    I'm not an teacher, but I'm a nurse working 48 to 60 hours per week.

    You've got to find your balance, keep an easy routine.

    As far as work...I have no advice as I have the same issues. Lol

  • You asked how to be a top notch worker/ homemaker and physically fit and beautiful to your partner and the answer is you can't. Even if you did not have a genetic condition that predisposes you for injuries and fatigue you would not be able to do it all. You must give up being the best at something.

    Look around for a cleaner on your budget, you may even find one that will cook one meal a weak. Buy a slow cooker. Your number one priority is to rest for your baby and not care what others at work think. Be strong for your child and the rest will work out.

  • So weird that you say that. It took a break down from me to tell my husband that I don't feel supported. That I feel like he's annoyed when something new hurts or bothers me. I think making him realize that I didn't choose this. I can't control this but I have to live with it and I need help was the statement that got him. He realized how miserable I was and how much it was actually affecting me mentally. I think we try to fake it sometimes and put on a smile when we're hurting but sometimes being more direct helps.

    I have also found trouble with weight. I was a twig in high school and college and in the last 8 years or so since then it seems harder and harder to loose weight. I have wondered if this is due to the stretching of the stomach. Also due to the fact that I use to be able to work out no problem and now a 1 mile run results in a hurting knee hip and ankle. Or dehydration and exhaustion from POTS. I think this is also out of our control and part of the syndromes process. You just have to take it one day at a time and do your best to eat healthy and stay as active as your body will allow. And recognize when you are stress eating and don't not eat, just try to eat healthier things.

    Also I feel men will never understand woman...it's in their DNA!

    Good luck! You're not alone!

  • Sorry, hold up. You both work, but he wants to whine that you aren't doing what a HOUSEWIFE usually does? Hell no, buddy.

    You need to talk to your higher ups at work, ideally with a doctor's note, about needing accommodations. And you need to slap your husband upside the head with the reality that you both live in the house, so you both get to keep it orderly.

    And the next time he starts in on what you eat, tell him where to go.

  • Amen.

  • Lol, but true Mandie Lyons