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Navagating Relationships?


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I'm not a newbie at POTS/dysautonomia, but I am trying something new--- really multiple new things, since I'm also trying to find full-time work for the first time since POTS (I was a full-time student and have worked temporarily or part time since POTS).

I was in a serious relationship when I came down with POTS and was later diagnosed; and we were together for several years while I was sick. The relationship went south, but not before practically killing me (or so it felt) with the stress and expectations that weren't compatible with POTS.

After almost 3 years I've started a new relationship, only to realize that I really have no idea how to negotiate having a healthy relationship with POTS! In my last relationship I was always the one that had to make sacrifices and work for our relationship and I was still resented for the burden my illness put on him.

I'd love advice from all of you that have dated, have a relationship, or have had POTS affect your marriage.

On one hand it is very hard to maintain what feels like an "equal" relationship. On the other hand I know that even if I am not as able to make big gestures and put in the effort to be the one that always does the planning/driving ect, I have a lot to offer someone. I'm also struggling with working out how to deal with all the extra work and planning that goes with making sure I can feel decent and enjoy myself when doing things and balancing that against the desires of another person.

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I've been in my current relationship for 8.5 years. I was diagnosed about a year ago; partner was already used to dealing with bipolar and joint issues, but the POTS has been a way bigger issue in our relationship. It ***** - case in point is right now. I was super-tired last evening, so napped from 7-9pm; I've been awake since then (currently 7:15am where I am) and I need to be "up" in about 2.5 hours. This means I will be a mess today (since I need 8+ to function), so again another wasted day from his point of view.

We've been seeing a couples therapist which has helped some, but she has tried to get me to make the POTS take up less "space" in the relationship (be less of a big deal), but I really can't do that. I mean, I can apologize for being weak, tired, needing to hold his hand, but he doesn't want me to be sorry, only better. Very frustrating.

What I would say for starters is to focus on what you *can* do for a relationship. Can you be the one to sit in the kitchen chopping veggies if someone tells you what to chop (brain fog, can't stand, etc)? Can you plan things for other folks to do? Sit on the bed and fold laundry? Watch a movie together on the couch? Rather than what you can't do (plan dinner, stand at the stove, drive, go do the laundry, go play tennis or garden). Maybe try to spend your good days with your partner as much as possible - so if a day is good, see if you can come home early/try to not spend all your time resting if you won't crash later/etc. It's difficult; I think a lot of us are with you in terms of where we are in relationships, so you're not alone. Good luck!

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Peregrine, I appreciate your reply. I really dealt with similar issues in my last relationship. Although I worked very hard to keep POTS from affecting him and what I did for him in the relationship, he did not want to comfort me when I was feeling ill and did not want to have to plan ahead when it came to things he wanted to do together or wanted me to do making me sicker in ways that easily could have been prevented. It got to the point where I was pretty sick all the time from pushing myself and then our relationship fell apart when I had to lay down the law about what I needed from him. Most of the stuff was just common courtesy or making an effort to plan ahead, but it was too much for him.

The new guy and I aren't in a partner-type relationship yet, but we are slowly moving towards it. If at all possible I'm trying to avoid getting my feelings hurt and dealing with extra stress from another man who doesn't want to deal with POTS or isn't willing to put in the effort. I'm trying to be clear about my needs from the very beginning (or so I thought I had done/was doing) and start things off positively by not creating expectations I can't live up to in the long-term. That said, I also recognize that he has needs and things he wants from me and a life with his own stress and times when he is tired or feeling poorly. I don't want to over-burden anyone either. Basically, I'm trying to figure out where that line is.

I'm a good listener, good sense of humor, good conversationalist, intelligent, a good problem solver, a good planner, always interested in learning, a hard worker, affectionate, give good backrubs, enjoy cooking for people (even with POTS), very caring, always thinking about other people, and enjoy getting out and doing and seeing things. As far as ladies go, I'm not particularly emotionally needy or demanding/high maintenance.

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Basically I was very clear about my needs from the very beginning. We've been dating for long enough to be attached to each other and considering the future, but not to the "partner" stage. For the most part the relationship has been on an even keel, with us both doing about half of the "work" of the relationship.

Recently he hasn't been treating me "badly" persay, but he has become increasingly selfish, unwilling to put out effort, and inconsiderate of my needs. He says he has been very stressed. I've tried to be supportive and been willing to pick up the slack in our relationship (willing to do the driving, bring food or groceries with me, cook and baking for him, giving him massages-- been understanding when plans were canceled or when he'd rather sit on the couch than go do something) if he could give me a little notice on the invite. Unfortunately, he continued to invite me to his house (which is quite a drive for me) at the very last minute, often late in the evening. Of course, it is very difficult for me to drive at the very end of the day, especially when I haven't planned my meds out and my activity out to save spoons to do so. He wasn't great about not making me feel guilty when I've had to turn him down, or when he wanted a massage or for me to take care of him when it was very inconvenient to me. He also got into the habit of promising things or asking me to clear my calendar and then never making plans but leaving me hanging. He also didn't let me know that he was stressed until he'd been treating me like this for several weeks, which further stressed me out.

I can completely understand being stressed or tired and not having energy to go do something or to plan something. I would have completely understood even if he didn't have the time to see me. However, I feel he was being disrespectful and selfish and I never have treated anyone like this, despite having similar stress and energy issues with POTS. I let him know that he hurt my feelings and stressed me out. He said that it wasn't purposeful and tried to apologize for his work schedule. I told him it wasn't the work schedule, but him not being considerate of my needs too.

Now his work schedule has changed and he is back to being his normal wonderful self. Of course, I'm still dealing with the additional stress and subsequent POTS flare and not sure how to handle it.

On one hand, I don't want to be a harpy since we've already discussed this, but I don't want him to think that I will put up with being treated poorly each time he gets stressed.

On the other hand, I know there will be times that if the relationship continues he is going to have to put up with me not having the energy to put into our relationship and possibly even having to deal with more difficulties because of my health.

It isn't the lack of energy that bothered me, but the not being able to call me at 2 if he wanted to see me at 7 p.m. and not accepting my offer of bringing dinner, but instead putting me in a situation where I skip dinner, or where I drive an hour to see him only to have him request favors and then ignore me. There is a little niggling voice that keeps telling me that I deal with as much or more stress as he was dealing with regularly and wake up feeling worse than he does on a bad day, but it is somehow ok for him to treat me poorly because he is stressed, but never ok for me to treat anyone poorly or be less than wonderful. This is a constant niggling feeling that I'm experiencing with other people in my life as well. I don't want to take that out on him, since I truly still believe that everyone has the right to feel sick or stressed and they deserve care and sympathy too.

That said, my body can't handle the stress of someone I don't have to have around disrespecting me and hurting me.

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Elfie,

Sorry to hear about the problems you've been having - we all know relationships can be very tough.

I think you need to listen to that little voice that's talking to you. It sounds like you have alot of doubt about where this relationship currently stands. You are absolutely right that you deserve to be treated with respect and consideration. I'm glad that you were able to express that to him. He needs to be meeting you at least halfway (I have a tendancy to say he should be going further than halfway because you are dealing with POTS, but let us say at least halfway...). So, if you are making the effort to make the drive to his place, then he should take care of supper, for example and not have a list of expectations for you once you get there.

You may feel that you are harping on the issue (or he may make you feel this way), but it is so much easier to work on this at the beginning of a relationship than it is to fix it later on. Some otherwise very nice guys (or girls) will fall into the trap of being 'takers' if they are able to get away with it. Know that you deserve more than that. I was impressed to see the positive attributes that you listed about yourself. It sounds like you have a lot to offer in a relationship. I think its good to be able to step back and look at things objectively if you can. What advice would you give a friend in the same situation?

In my experience, it all comes down to communication. If you can be as clear as you can with him about what you need from him (or if you are not at the 'partner' stage yet, you could let him know what you would expect from someone in a long term relationship), that way he will know for sure. Also, in my experience and those of others, it is best to be specific about what you need. He may have an entirely different interpretation of things than you do. So, since you mentioned that you like to go out,..he may think once every six months is good, but you may want more often than that. If he is the right guy, he will listen to your concerns.

I hope everything works out for you.

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Thank you --- it sounds like he and I need to have another talk. I tried to be very clear to him from the very beginning about what I expected of him and how POTS fuels some of the things I need from him (and therefore they are non-negotiable-- like not being able to drive home late at night safely), but it is possible he misunderstood me. I do feel badly because I do think he is a very nice person, but I do think it is possible that he has never been in a relationship with someone that is quite as even keel as I am and because when bad things have happened between us I haven't been OTO upset or yelled or said hurtful things that it means that things are ok. They aren't and I just took it for granted that as a smart mature adult that he knew it was not ok to treat me in a way he wouldn't want to be treated and that I didn't have to yell at him (I hate to escalate things into stress or fights because of POTS). He has occasionally said things about being afraid I would yell at him or no longer want to see him because of certain things that happened and I have reassured him that I would not do that just because of a situation that he can't control (getting called into work, for example). I'm not sure he understands that that doesn't mean that canceling plans doesn't hurt my feelings or that he still needs to handle the situation respectfully (calling as soon as he knows that the plans are off, letting me know the reason, apologizing and making new plans). Once again, I was hoping that being a smart mature adult meant that I didn't have to "get after" him about things that he clearly has some inkling deep down are not ok.

I also feel badly because I've gotten in the habit of not confronting issues immediately, but taking some time to think about them because I find that I am more quick to anger if I am having low BP and other symptoms and can sometimes feel extra angry or emotional on midodrene. However, then I sometimes feel bad about having to come back and speak up about something that happened beforehand.

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Oh communication. It always comes back to that, doesn't it? In ANY relationship? Rob (my hubby) and I have only been married 5 years- blended family- I have 4 kids (with us full time) and he has 2 (50/50). I've tried to express gratitude to him and he will say 'You are welcome but don't thank me for doing my job! Sickness and health, remember???" 90% of the time he is like this. The other 10% is an utter nightmare. He has tantrums. He is mad at me for everything I do. Nothing I do is right. I sit up too long. I crawl wrong. I don't eat enough. You name it. He will tell me that I have no idea what it's like to be him. No, I don't, but vice versa applies too. Once he actually said he wished we could switch places for a week so he could get a "break." I don't think anything he could have said hurt like that. I go above and beyond to DOWNPLAY my illness with my family so they don't have to know what I really like. And he acts like I'm on vacation with a servant? I just cried and cried... And when I could finally talk I said "I am so glad we can't do that because I'd never want you to experience what I feel in a day - let alone a week!". And in another 10% moment he said that: "it must be nice to be ME and never have to think of anyone but myself and I get to "CHOOSE" how I will feel any certain day." are you kidding???? I haven't walked in months? I can't even PEE on my own! I've lost brain function. There is never a minute of any day I'm not in pain and have a headache. I know his job is hard. I SHOULD know- I did it myself along with a full time job and grad school , volunteering, church activities, Girl Scout leader, you name it. He isn't even working right now! When I was admitted to Mayo he was terminated and doctors

orders still say I'm not safe alone.

So like I said- mostly- he's fabulous! But when he's not- HE IS NOT. And I'm so guilty because he didn't sign up for this by a long shot. I even offered once- " I want you to be happy, if you want to go - please I won't hold it against you- go live a full and happy life." he was so mad because he thought I was threatening to leave. I wasn't- I would have been devastated had he said yes- but it breaks my heart that it seems like all of our life is about me and this "disease'

Jen

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