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Nan

Need Advice

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So my Fiance  and I had a bit of a falling out, due to a transgression that I committed ( I was in the wrong), this part doesn't matter.  Because of this a lot of things came out about me being sick. He commented that I NEED to start being a more positive productive member of the household. Basically I have been too lazy since I have gotten sick. Even at my sickest I still tried to do something, like laundry, getting trash ready or some cooking. Now he literally is on me everyday, commenting on this needs to be done or that and will text me through out the day to see what I am doing.  How does everyone else deal with family members? I know me getting sick last year has been hard on everyone, but I am  stuck at these comments from him. Just need some advice. 

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Uff dah!  I'm so sorry you're dealing with this!  I've been there!  I don't know how limited you are by your symptoms.  My response is from my personal experience which is shaped from the severity of my symptoms.  I apologize in advance if you are more limited than I am and much of what I write doesn't apply well to your situation.  I have had POTS come and go over the last 13 years.  I can get breaks for up to 3 months where I have no limitation of light activity, and then I get a flare-up which can last days, weeks, or months in which I'm in bed non-functional 6 - 8 hours per day.  Most days are inbetween where I'm limited by symptoms, spent about 3 hours in bed per day, but can fake being normal for long enough stretches that most people would never guess I'm struggling.

My husband struggles with this demanding behavior too, although he's getting a bit better now that I have a medical diagnosis rather than my previous psychiatric misdiagnoses.  He was accusing me of faking until he saw me faint after standing for 10 minutes.  My husband used the phrase "productive member of this household" too!  So annoying! As if anyone wants to be a burden on loved ones!!  

I think you need to get some details from your fiancé about what being "productive" means to him.  What chores are most important to him. What he expects.  If you cannot do his minimum expectations when you are sick, and he's unwilling to change his expectations, then your relationship is pretty much doomed, IMO.  This relationship dynamic almost ended my marriage (engagement actually) twice.  My husband gets crabby about this stuff when he is stressed out at work, or when I've been sick with a flare-up for 2+ weeks.  It's just really a lot for him to work 50+ hours a week plus on-call every-other night, do all the farm work, all the cooking, cleaning, and childcare from when he gets home from work until he gets back.  Knowing he is feeling burdened does not make his behavior acceptable, but it helps me understand his point of view and the temporary nature of the problem.

Now I we've worked through it and I have a better idea of what helps relieve the burden.  Clean kitchen counters are a big one for him.  Even if I can't cook meals, I can usually mix up a dessert to bake at night - sitting on the floor.  Sometimes I'll offer to cut veggies (again, sitting on the floor) if he will do the stovetop cooking.  I can order groceries and household supplies online.  Spending less money overall relieves my husband's work stresses too.  I have decluttered my house fairly extremely so that I can get it clean in an hour.  90% of the time I am functional by 4 p.m. And can clean up the house quick before he gets home from work.  I changed my schedule so I stay up late when I function better and clean at night.  He wakes up to a clean kitchen - and clean once a day seems to be enough to satisfy him.  Since getting better understanding of POTS, I have been pushing myself.  My symptoms suck, are limiting... and they're temporary.  I do what I can and spend a lot of time lying on the kitchen floor.  This makes a difference because he can SEE that I'm making effort, that whole invisible disability thing where if I look well (lying in bed wasting time on my device) he will be annoyed, but lying on the kitchen floor resting between tasks (like getting something out of the fridge) makes me look unwell and then he's sympathetic and encouraging.  **I** feel better emotionally even though it's completely ridiculous.  Staying in bed doesn't do my self-worth any favors. 

Your relationship problem has two sides.  Maybe he's stressed to the max and not himself lately.  Maybe he's a real jerk whose behavior is escalating in terrifying ways.  Only you can make that judgement call.  His nagging, hounding behavior is unacceptable, bordering on coercive control.  On the other hand, he's probably feeling burdened and desperate.  You have very real limitations, very real need for autonomy, and emotional needs too.  You two need to pull together and find a solution - or determine that there is no solution and part ways.  I listed a few solution ideas of mine below, maybe they might help you look for the things you can control in the situation.

Maybe there's some nontraditional work you can do to earn income to pay a housekeeper?
Maybe you can make freezer meals when you're feeling well and use them when you're sick?
Maybe he needs to find a bad-day meal You can keep on hand that he's willing to eat?  (Frozen pizza, cereal, and lunhmeat sandwiches are our fallbacks)
Maybe you need to rate your health/functioning on a scale and communicate it to him so he knows what to expect? (If I'm having a particularly bad day, I send my hubby a text message a couple hours before he comes home so he can adjust his expectations.  If he's having a terrible day at work, he emails me and then I know to use my limited energy on farm chores rather than housework)
Maybe you need to contact your doctor if symptoms are getting worse or changing?
Maybe you need to remind him that motivation is not your problem and set boundaries about his nagging behavior?

I don't envy your situation.  I've been in it twice.  First time ended in divorce.  Second time became a happily ever after.  I learned I can only control myself (how I cope with symptoms).  The future of the relationship is decided by if the other person can accept me... and my symptoms.

Best of luck you you!  (((Hugs)))  

 

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It's really tough when you are sick, you can't even do your responsibility at home. BTW, what kind of sick are you suffering? Why don't you start from yourself "Healthy Diet". It helps you to boost your immune system and everything will follow and of course your healthy relationship with your husband.

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ASHC,

In June I started to eat raw vegan/vegan and have been doing much better in regards to fatigue. I am now able to do more around the house but am still suffering form extreme confusion and occasional episodes of POTS. Which my fiance also finds annoying.  Before this diet thought I could barely get off the couch. 

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Hi Nan,

I know it's really frustrating when people don't understand our symptoms or how impacts you on a daily basis. Have you tried presenting factual information like research articles, info from doctors, books on dysautonomia etc? Maybe if it came from an objective source it might sink in a little better. The Vanderbilt autonomic clinic's website has some good info, and I once read a book I ordered from Amazon that gave a great overview of pots and all of the symptoms. 

Also, learning how to do things differently to pace yourself through the day can be helpful too. I have a young child and cooking is out of the question. I started making her meals in a crock pot so I wouldn't have to cook much. I never used one prior to being sick but it has really helped. I also have a routine I follow to get what little housework I can do get done. If I do too much it makes me worse so by breaking it into smaller tasks and limiting how much I do each day it really helps. You mentioned confusion...I've had brain fog moments where I've left clothes in the washing machine for three days or forget to turn off appliances or even entire conversations! I write everything on a post it, set medication and other reminders on my cell phone, and have a special spot in the kitchen where I put bills, important papers etc, so I can see them immediately and not forget to take care of them. 

 

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