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Posted 10/18/2010 1:52 AM (GMT 0)
Just had another cryfest(at least on my end) with my boyfriend. He doesn't understand how one night of staying out past midnight can haunt me for days; or how waking up in the middle of the night in pain means spending three hours trying to get comfortable. I often itch for no reason and have fevers and all the other crazy and weird things our bodies do with this illness.  He says all our friends think I am a hyperchondriac and many of them try to avoid me.  He says I talk about it way to much and that it now just comes off as whiny and needy and many days he just wants out of the relationship. He is so hard on me sometimes.  My mother has numerous health issues and hardly leaves the house. He is scared I will become her. Heck I am scared I will become her, but I don't know what else to do.  I try to work out but two weeks into it something flares up and sends me to the chiropractor/doctor/physical therapist for weeks. I have put on 20 pounds in 2 years and I am miserable.  He never asks how I feel or how he can help or is this activity something you can do?  Instead he gets irritated if I say no or I can't or I feel bad today. I just want some consideration.  I have always known he could be a little self absorbed ( let's face it, many men can be) but I just wish he could be a more compassionate for the woman he loves. I don't have many friends probably because I don't do every single thing I am invited to. 

One person suggested I try a therapist, but I can't afford a shrink so my question is: do I just learn to lie and say I am fine (including to the boyfriend) or do I continue to be open about it?  I don't know how to live life in my 30s when my body feels like I am in my 50s.  My mother says I was born with the soul of a 35 year old, so as I matured so did it.  that notwithstanding, I want to have a life, but haven't figured out how to make that happen.  I don't want to lose my boyfriend, but I fear I will if I don't figure out how to balance all this.

Thanks for listening,

Kara

Fibromyalgia, Arthritis, Ehlers Danlos, Tendonitis, Plica Syndrome, endometriosis, IBS, Hypoglycemia, celiac, spondylothesis, allergies.

Post Edited (sweetkygirl) : 10/17/2010 7:56:16 PM (GMT-6)

Posted 10/18/2010 2:47 AM (GMT 0)
Kara, many here, including me, have lost friends because of this illness.  I don't talk about it anymore.  They don't understand anyway.  If someone sees you are having a problem and asks, just tell them you have a chronic pain illness and then drop it.  When people ask how you are, I don't think they really mean it.  It seems to be a salutation these days so I say, "I'm fine, thank you."  That's not lying.  I AM fine.  I'm not dying of anything.  Yes, I have chronic pain but some people have far worse problems to deal with. 

 

You said you try working out for a couple of weeks and then pay a price.  I would too!  You need to do gentle exercise every day....things like walking and swimming.  If I went to a gym or did anything remotely  like that, they would be carrying me out on a stretcher!  Start out slowly and let your muscles get used to the exercise but you do need to keep it up.  Once you see that you can do your gentle exercise with greater ease, you might want to try to do a little more.  Work yourself into it.  This will help.  Also, count carbohydrates when you eat and that will help with your weight, too.  I lost 85 pounds doing that.

 

Accept this illness and learn how to work around it.  Pace yourself and I know I sure wouldn't be talking about it all of the time.  It doesn't help at all and people don't want to hear it.  You can vent here and get things off your chest.  I know my husband would help me when he saw that I was struggling.  He ran the vacuum for me because he knew that hurt me to do that.  Your boyfriend might pitch in, too, when he sees you're trying your best.

 

Go to Fibro 101 and print out some of the information that is on there.  That might help him understand what you are going through, too.  I would just hand it to him and let him read it at his leisure.

 

I hope this helps you some.  I'm sure others will come on with their suggestions, too.

 

Sherrine

Posted 10/18/2010 3:58 AM (GMT 0)
Hi Kara,

I agree with what Sherrine is saying (she's a very smart lady!) - I generally don't talk about my health with people unless they specifically say to me "tell me how you're really feeling". That question comes from people close to me for the most part, not just casual acquaintances or friends you don't see often. Having a support group like the ones here at HW is a better option to talk about health issues, because people here "get it". We all need opportunities to vent or ask questions, and this is the best way of doing it.

Learning how to pace yourself is a key factor to living with Fibro. It's so easy to overdo things, but you always pay the price afterward. Even if you can't actually bowl, can you not join your boyfriend at the lanes to cheer him on and just "hang out" with friends? It's fun sometimes to just get out of the house for a bit, but too many late nights can cause problems. You could still go out together with friends, but you could leave when you were tired and either drive home or take a cab...there are lots of options. As bad as you feel physically, I think it's important to try and maintain as much of a social life as you can manage.

I'm sure your boyfriend is struggling with how to help you, especially since his whole world with you has changed as well. Your physical situation affects him in a lot of different ways and he probably didn't realize the impact of everything you go through. I'm sure this has affected you both socially as well as with communication, intimacy and even future plans. The key is, you have to keep talking to each other - not whining, but really sharing and listening to each other. A counsellor is an excellent idea and there are many who work on a sliding scale when it comes to fees. If either you or your boyfriend are working, check and see if there is an Employee Assistance Program provided by your/his company. Often, they have confidential phone counselling sessions included at no charge.

Kara, the reality is, you are going to be affected health wise by any or all of the conditions you've listed, probably for the rest of your life. It's still up to you to chose the life you want to lead. Every new beginning starts with a baby step and that's where you have to begin too. Try saying yes a little bit more often, but have a contingency plan if needed. Ask your boyfriend to work with you on communicating your needs and his needs and finding ways to compromise. Learn to live the best life you can and hopefully, you'll start seeing many positive changes.

hugs,
Pam
Posted 10/18/2010 4:47 AM (GMT 0)
Kara,

I'm going to play the Devil's advocate here and disagree a bit with Sherrine and Pam. True, we do have to minimize our talk about our physical problems with most people, or we bore them to tears. And it's better for our own sakes not to get too bogged down in all of this, to "rise above," and live as normally as possible. Absolutely.

But with those who are really close to me, I'm honest. I don't mean I tell them every detail or go on and on. But yes, if I'm in agony, or exhausted, or feel sick, I say so. I don't see any point in pretending to be someone I'm not, and frankly, if they can't accept me the way I am, then so be it. What was that saying from the seventies - "I am not in this world to live up to your expectations, and you are not in it to live up to mine...." I'm sure some people (including relatives) have drifted away from me because of my Fibro. It makes me sad, but at least I know who my true friends are.

My husband had a hard time with it at first, but we'd been married for 5 years and had 2 kids by the time Fibro really got its claws into me, and he stuck with me. Now he gets it (as well as anyone can from the outside) and he knows that I'm not lazy or crazy, and that this isn't happening to me because of some character flaw. He knows that I'd give anything to be the woman I used to be, spontaneous, fun, athletic, productive. He isn't one for lots of details about physical stuff, so I don't bend his ear. But he knows that I do my best and doesn't press me for more.

I really feel for you, Kara. I hope your boyfriend steps up to the plate and starts trying to help you, instead of getting mad at you for something that's not under your control. Sure, it's hard on him - but it's a lot harder on you.

Debbie
Posted 10/18/2010 7:09 AM (GMT 0)
Kara, It is very difficult to explain to others the pain that we feel. Unless they are
in our shoes...they are not going to really get it.

Communication is important. If I need to cancel plans, I will say it is a bad day.
My hubby, friends and family know that I make an effort to do what I can.
Many times I have pushed through the pain to do something I did not want to miss
out on and found I felt better because of the distraction.

I try not to think of myself as "sick"... just inconvenienced. My goal is to make
each day a happy one. I know for a fact you can laugh and hurt at the same time.
Pain hurts... all I can do is help myself lessen the pain by doing what works for me.
I know my attitude plays into how I feel, so I work on being positive. I still have
some down days but I know my life is a good one.

Be open with your boyfriend about your feelings. Maybe the two of you can walk
together and spend that time to share in eachother's day. Take the time you need
each day to do something you enjoy. Hoping everything works well for you.

Hugs, Robin
Posted 10/18/2010 8:01 AM (GMT 0)
Kara,

Im going to have to play devils advocate myself and agree with Debbie and not so much with Sherrine or Pam. I am 50 years old. I have spent most of my life trying to be someone I am not. I started having chronic pain in my 20's with endometriosis. If your dont know what that is, it has to do with periods and bleeding and painnnnnnn. I would be hanging over the handle of cart on Christmas Eve walking bent over because I had to be the perfect wife and mother and sister and so on and so on,you get the picture. By the time I was divorced and remarried I had already had a hysterectomy so that took care of that,lost 150 pounds and was finally doing what I wanted to be happy for me. Then 4 months into the marriage I fell down 15 stairs,breaking my back and a few other parts and became disabled. That was a trying time for me but my hubby stuck by me and slowly I got somewhat better,at least to the point where I had more good days then bad,when fibro hit. I once again fell back into telling ppl that I was fine and putting on a brave face to make everyone happy but me. And then I just stopped. I could not keep up doing for others and not caring about me. I told my husband I would understand if he wanted to go but he said I moved 3,000 miles to be with you because i loved you. Not what you could do for me but for the loving person that I knew you always had been. I have days when I am heaving into the toilet bowl and so dizzy I cant stand. I have days when Jay has to take care of me when I am freezing cold and cant get warm and my muscles sieze up and he brings me a bowl of hot soup and watches my chick flicks because he knows that Hairspray(the movie) makes me smile even though he loves war movies. Its not all the time. Our relasionship is give and take. There are tiimes that I am sore but take care of him because I want to not because I have to. And since he lost his job he treats me like a queen lol. He gets up early and makes me a pot of coffee when he hears I am finally up after having a bad night. The dishs are done and laundry is going and when I feel better after my meds start to work I make him breakfast and we sit and talk or plan out the day. You want someone that will treat you with respect, someone that understands your pain and you can do the same,let him go out with his friends and think up things to do together that might fit better how you feel from day to day. And if your not getting as well as giving then it might be time to move on. There might be someone out there that is just waiting for the right girl to come along. Just something to think about. I wish you lots of luck and hope you are feeling better.

Hugs,
Karen
Posted 10/18/2010 12:36 PM (GMT 0)
Thanks for your comments. I have actually been trying to do much better in a social setting and not discuss it. I will admit though that I bend my boyfriends ear alot. He comes from a family that never really discuss their feelings at least to each other and other than ADHD and depression they have no illnesses like this on which to draw. His mom works in the medical industry and she is the worst about being sympathetic to people like us. I know there are people that are suffering more than me. My mother says her marriage has lasted 40 years because she never told my dad how bad she felt and just pressed on to be the dutiful wife and mother. I see both sides. I need to stop talking about it to friends and family. However, the boyfriend should love me for me and be more helpful around the house. I do all the care fro HIS ADHD/ODD son andBF watches TV and gets on computer when he isn't working, letting me do everything else. I am restricted due to knee injury and am in pysical therapy but he says if they let me ride a bike, I can take the stairs to do laundry. I haven't been cleared for stairs. I am just frustrated with him. He doesn't even try to understand.

Anyway, thanks for you comments. As soon I get hired on full time, I will be able to afford a counselor. ( I am currently a full time grad student).
In the meantime, my plan of attack is deflect talking about myself and try to get others to talk about themselves and try tofind soem other interests so that my whole life doesn't revolve around fibro.

Kara
Posted 10/18/2010 1:44 PM (GMT 0)
Hi Kara,

If your boyfriend can't accept you for who you are, maybe you aren't meant to be! I know that's tough to swallow as well, so I'm sorry for saying that. Same goes for friends! If they and true friends they will be there for you! That's what friends, boyfriends, whatever are for!

Don't try to be someone else for a man who might just say hey this isn't worth it, especially if he is "threatening" he might want out of this relationship! You should be able to discuss any of your problems with your partner. They should be there and support you through good and bad! I'm not saying to whine all the time about how you are feeling but he needs to support you, you have alot to deal with, and I'm sorry but from what I read above, really angers me.

As for your weight gain and problems with exercising, how are you for walking? Maybe you should quit that gym membership, and just get outdoors in the fresh air everyday and enjoy a walk. I can not exercise whatsoever, but I do walk every single day, and if the weather is bad, I bicycle in my basement while watching tv.

I'm very sorry to hear about this added stress you have Kara. Please take care of yourself. This is not what you need in your life and you will have rough days ahead if you are worrying about others. You are your priority because you are the one who has to deal with this illness every day of your life. Take care of yourself 1st, listen to your body, if you can't do it, don't because you are the only one who will pay for it in the end!

Hugs,
Krista
Posted 10/18/2010 3:58 PM (GMT 0)
I think I'd reconsider your boyfriend if I were you.  That type of behavior doesn't usually get any better.  You can't change people  They have to want to change.  A family works together and shares chores because they love each other and want to help.  I find him very insensitive in saying that you can take the stairs to do the laundry and you have a knee problem!  I'd tell him I could take the stairs to do MY laundry and you can take the stairs to do your laundry.

 

I don't mean to upset you but really think about what you are getting yourself into.  It could be a nightmare.

 

Sherrine 

Posted 10/18/2010 6:16 PM (GMT 0)
Sherrine and Krista,

He definitely has a lazy streak. He works hard to provide for me financially until I graduate and start working so I guess he feel it entitles him to pass on the housework. He will help but he is a procrastinator and I can have it done now instead of in two days. He is too laid back that he is even to0 lenient a parent (Ethan's psychologist has mentioned it.) He dislikes confrontations or schedules. I crave schedules as it helps to minimize my stess and his son needs a schedule as well. The knee thing is worse today after doing laundry and cleaning this weekend so I am further restriced on exercise until the inflammation leaves. I am just so frustrated. I love him and he can be so sweet and easy going and he complements me in many ways, however, sometimes he can be so insensitive. He is actually hesitating on marriage and kids with me because he is afraid I will become a recluse like my mother and "pass it on" to our kids. Like I said, his mother dismisses my fibro woes as the diagnosis given to hyperchondriacs with a low pain tolerance. I am sorry, my tolerance is actually pretty high since I have been experiencing pain and sleeplessness since childhood and I am a hard worker, pushing myself harder than I probably should because I am such a perfectionist. Who does she think she is? It is hard to get affection from somebody who grew up in a family that shows very little of it.

Once I can support myself monetarily and with better insurance, I may decide to end the relationship if he doesn't live up to his promise to try a little harder to be more sympathtic and helpful.
Posted 10/18/2010 6:48 PM (GMT 0)
I'm so glad to see you have your eyes open.  Love can be blind!  It sounds like you have a good plan and that perhaps things can work out for the two of you.

 

Meanwhile, why don't you check out Fibro 101, print out some of the links that you think would help both your boyfriend and his mother to undersrtand fibro better, and give copies for them to read.  Good links are: Doctors Respond To New York Times Article...link #6 and A Thorough Explanation of Fibromyalgia...link #16.   These should help them realize you have a true illness, one that is recognized by the National Institute of Health, the American Medical Association, the World Health Organization, and the American College of Rheumatology to name a few.  Nope, you are not being lazy or making this up.  Your boyfriend's mother needs to brush up on her medical knowledge and you can be the one to do that!

 

Sherrine

Posted 10/18/2010 8:51 PM (GMT 0)
Just had a great surprise! BF came home and gave a massage and asked if I needed anything. What a refreshing change of pace!
Posted 10/18/2010 9:22 PM (GMT 0)
That's wonderful!  smilewinkgrin   Maybe he's starting to get it.

Debbie

Posted 10/19/2010 1:22 AM (GMT 0)
Good, glad to hear it...maybe he's feeling badly for how he treated you earlier! You are probably right, that he has learned his insensitivities from his parents. His mother sounds awful and I don't know I would bother trying to justify your medical condition to her, but your bf should definately learn more about what you are going through...maybe he can explain it to his mother!

I wish you the best of luck and I hope it works out for you. You deserve love and happiness and support, don't settle for less! Hugs!
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