I think you are really brave to date. I dated off and on but I quit dating a few years ago. It was just too much for me to deal with. I have cancer too so that is a heavy load to dump on a guy.

I know you've been through lots. I think if you found someone that likes you how you are right now, focus on the now and let it unfold. Hopefully you won't go back to where you were so it is in the past. Try to stay optimistic and positive (but you should be real too). Maybe you keep your past stories for your family and for later for your guy. He might not be able to handle the gravity of your past.

Big hugs to you. Sounds like you found a great guy.

Hi okapi2, I think you will find most of us are a little scared at times with this. I call it my "condition" it helps me deal with it more (I have DM) Luckily I have been married a long time and my husband is very helpful most times. It must be difficult for you, but as lexisgirl has said, be a bit less forthcoming with your illness with your new guy for now. There is plenty of time and I am sure over the months things will blossom for you. Take care.

Hi Okapi2,

I am facing similar relationship challenges. I hate to even admit it, but wrong as it might be, I am staying in a relationship a lot longer than that I would otherwise if it weren't for my disease. I am covered in a severe DM rash from head to toe, and the thought of trying to date this way makes me feel really uncomfortable.

I know there are understanding and compassionate guys out there somewhere, but I've not been able to find any on my own. When it comes to online dating, the guys you meet don't know you, don't know what to believe, nor necessarily want to get involved with somebody with a challenging disease. (In all honesty, before my own diagnosis, if the situation were reversed, I'm not sure I would have necessarily wanted to take on that kind of challenge with somebody I just met.) And since my rash can't be hidden very well, it's not like it's something I can get away with not mentioning until they get to know me better.

So while I don't have any answers for you, know that you are not alone. I can certainly relate, and would love to hear what others have to say on the topic.

Hi Okapi2, I have remained single and I am 51 years old. I decided a long time ago, before DM that our society has changed. Many people do not seem to have the integrity to stick in a relationship anymore. It is a fact of life that we ALL get old, sick, or have some accident - that's life.

Life also is like a bell curve. You begin, then one day are successful, then it curves down past that success into retirement, illness, or accident. People are there for you for a while and then they are gone. This is part of the cycle of life.

Here is my friend: 1Pet 1:24-25 "All flesh is like grass, and all it's glory like the flower of grass. The grass withers, and the flower falls off but The Word of The Lord abides forever."
Basically, my strength MUST be in The Lord and in His Word because He is lasting.

I am content with being single. I do not waste time with dating and I prefer bible study so this is my inner peace.

I hope you will find the inner peace that works for you.

Thank y'all for the comments.

lexisgirl, I always appreciate your advice, and I agree with you and amber-- I think it's definitely good to keep the more serious stories for my family, because even they had a hard time talking about it until recently.

massbunny--I can completely relate. I had one relationship in college in which he definitely took on the caretaker role. He was sweet, and it was what I needed at the time, but in the end it was the wrong relationship. It can be so overwhelming to meet new people though when you have a visible (or invisible) condition.

And trpt I definitely agree that you have to find serenity outside of relationships, which is where my head is today.

I guess the scary part for me is, even if you keep the difficult parts of your illness from your romantic partner, eventually things are serious enough to where you can't. And that's what's hard for me. I want to be vulnerable with my boyfriend without scaring him or depressing him. Right now, when I feel weak or have a bad day, the conversation is sort of like:
"What's wrong?"
"Nothing."
"Do you feel ok?"
"Not really."
"How do you mean, like do you feel weaker?"
"A little, but I'm not worried about it." (BUT I AM)
"Ok..." (looks uncomfortable)

ahhhh

Meow,

PM and all my other inner diseases are a part of me. I can't leave Poly at home at any time, so it and the others go with me. So, if a guy wants to date me (or even marry me), he'll have to accept me with my medical junk. Cause they are in my body until God decides to remove them.

I've finally accepted them as a part of me, and I demand my friends/BF's accept them, too.

I refuse to ignore any parts of me. If I were 25 years younger, maybe I'd be writing a different post. But I'm now over 50, and I love all of me. The PM and the rest make me angry sometimes, and depressed sometimes...but sometimes they keep me organized and eating healthier. They are a part of the middle-aged me.

So...take all of me, or leave me alone. I, too, am content as I can be.

I do understand how you're feeling, but I think you're short-changing yourself. There are ways to have a great life even with PM/DM/IBM, we just have to work harder to find them. And if the people in our lives really love us, they will love ALL of us.

Hugs,
Purr,
=^.,.^=

Maybe you should try to be a little more open. He is realizing something is wrong but you aren't sharing what. How about this?

"What is wrong?"
"I'm not feeling great today but I'm doing okay. Can we take it easy tonight?
Hopefully he will say "Sure honey...let me rub your feet."
"That would be perfect. Sometimes I get scared about how I feel but I would like to try not to worry about it. How was your day?"

I think you are right Kitty that it is part of us but you need to pace yourself with the information and not overwhelm someone. Doesn't mean you can't be honest how you feel though.

Meow,

I agree with you, lexisgirl, however, in my case the PM is evident in my gait. I'm told I walk with a slight jerk from my hips. Actually, it's my back muscles, but I can feel the jerk when I walk. So, the fact that I don't walk like a "normal" person is seen by all.

And I believe in being honest about my limits from the onset. Not to just blurt it out like, "Hey, I've got PM so be warned", but I'd rather my uncontrolled flaws be put on the table rather than hidden beyond the point where I'd get my heart broken if he left me.

Just my opinion. ok3pi2 has to decide what is best for her and her man. I'm just suggesting she should talk about the stuff that is now a part of her life, not sweep it under the rug like it's a temporary head cold. I don't mean to say PM should be the constant topic of conversation, but it is a reality and should be acknowledged early in the relationship. And we all shouldn't present ourselves as Damaged, but Unique..

Purr,
=^.,.^=

Meow,

Briefly,

When I first got diagnosed, I tried to keep up socially with my friends. I had six from a supportive fellowship, and we were fairly active. So, they'd call and let me know the group activity, and I'd say I'd go. But, when I got to the event, there would be stairs I couldn't climb. Seats I couldn't get in to/out of. I got tired before everyone else. There were foods I couldn't eat, and sometimes there was just a buffet, not a menu.

Thus, my PM was sorta demanding that I acknowledge it and find ways to keep being social with my friends. I'm still trying to find the alternates two years later. And I have lost one/two friends, cause I can't do what I did before PM entered my life.

All my current friends have accepted my having PM, and try to adjust if I am going to attend the event. Most of the time, I don't feel like doing the event, and can use PM to avoid hurt feelings.

I just believe, that if I guy really wanted a relationship with me--maybe not marriage, just companionship, he'd need to know early how limited I am socially.

Purr,
=^.,.^=

My disease is evident too. I got the impression that Okapi is talking about it but struggling to talk about her emotions about it.

When I dated, I would explain I couldn't do stairs and I couldn't walk far...and if we go out to eat, can we have a table instead of a booth. And get my home by 10:00 because I am so tired by then. It was exhausting to me. But I believe the right guy would be totally fine with those minor limits.

I don't think she was trying to hide that she has Myositis.

Haha, maybe I should clarify a bit more.

I am definitely very open about the fact that I have PM. My boyfriend, who was introduced to me by a friend, knew that before he met me. A few years ago I lived with my parents because I was very unable to take care of myself, and walked with a cane. I told him that from the get go. However, when he met me, I was doing a lot better, and he didn't ever really see how sick I was. I don't think he has any concept of that REALLY, just kind of an abstract idea of what that may have looked like. And of course, when we first met, I put on a very optimistic attitude because I didn't want to overwhelm him.

Now however, we've been together for over a year and live together. When living with someone, it becomes a lot more clear how they're really feeling all the time. My health has gone up and down, and now that we are as serious as we are I talk about it much more openly. But here's the problem--I know this is overwhelming for him, but I can't BE positive about it all the time. Not when I live with him. Just like I can't have makeup on all the time! Hahaha

It makes me feel so much better to read y'all's replies. I have just been feeling so alone in this! He's such an active guy and loves the outdoors, camping, hiking, etc. I do too! I couldn't be with someone who didn't. But I also can't keep up with someone who does :/ I just hope he sticks around to help me figure out how to do this.

Hi okapi2!
Just know caught up on your post/read most responses. Glad you are feeling better after hearing some support here! Just wanted to add my hello :) sounds like since you are living together that you get along, have things in common, enjoy each other's company, etc. I'm sure he will just adjust as he continues to learn and as you let him know what's best in certain situations. I often feel guilty because my husband is an active guy also, but I could never keep up with him. He goes for jogs and I stay home, he hikes in Canada and I stay in the boat and worry about him (ha. but I do hike once or twice if it's an easy route). I want to lay in bed and watch tv in evenings, and I know it kills him to be sitting when he has built up energy, etc. I sometimes will apologize for not being able to do certain things with him, and he told me he feels bad when I apologize because he doesn't want me to feel bad about something I cant control, yada yada. I can get really emotional about it. But he is very understanding, even when he can't really understand (hasn't been in my shoes). He just trusts me to do what I need to do and he wants to be beside me all the way. I feel very blessed that he still chose me when we were engaged and I was horribly sick in the hospital. I'm sure dating would be hard during recovery, having to explain things that don't seem to make sense("but you don't look like you feel crappy!"). I'm glad I snatched Brian before I got sick and we were able to go through it together, and he has learned all the little ways he can help me that he wouldn't have to if I weren't sick. I know relationships can be so difficult-with our without sickness-but can be so rewarding and special and blessed!! Best of luck :) keep us posted!