This Worked For Me

[Jeannie32]

Regrettably, it certainly has NOT been a banner week for some of our members. We?ve had husbands walk out ? divorce papers served ? and reactions and responses of our POTS family showing varying degrees of empathy, sympathy and outrage.

First of all, I am blessed to have a wonderful partner for almost 7 years now. But that really shouldn?t eliminate me from passing along an opinion in this matter. When I first posted on this site ? we were having some rocky times as well. I was upset with some of our friends ? his family ? my family. No one understood! No one cared!

Well, I?m happy to report that all is unbelievably better. What has been the recipe for success? First of all, I now try to minimize the constant complaining and demand for attention. My newest symptom and next doctor?s appointment is no longer the focal point of our lives!

I insist that he maintain a social life ? within reason, of course. When I can not attend a function ? I encourage him to attend without me. I can?t expect him to give up his life because of me. Dictating this ? even to a saint ? will breed resentment, anger and regret. Why? Because you have to realize that this is your illness ? NOT your partner?s. No matter how bad it gets for you ? you just can?t make it feel like it is their personal death sentence.

I think our beloved Administrator, Mighty Mouse hit the nail on the head with the statement ? ?It's an unfortunate reality that some people just can't handle being around someone who is chronically ill.? Likewise, it is a proven fact that the stress on the caregiver in an Alzheimer?s or hospice environment is downright brutal!

Why do you think some partners turn to parents and close friends? It?s for relief ? it?s for comfort ? it?s for understanding it?s because it may be the ONLY outlet they feel they have left.

I am not trying to incite a riot here ? but I strongly feel that we can?t expect our partners to hang around indefinitely if we lose sight of the pain we are inflicting on them too.

Jeannie

[samannran]

Hi Jeannie,

I agree with you about our illness taking a toll on our family. My husband & I have never really had an active social life outside of work and church functions. We've both always enjoyed coming home from work and hanging out at home watching tv, etc. I guess I'm lucky in that area because we don't feel like we've lost our social life. I have a scooter to ride if I feel up to a trip to the mall or a flea market. You mentioned not making symptoms the focal point of your life. I agree with that, too. I tend to go the other direction. I try not to always talk about my illness with my family and others. If they ask, I might mention briefly that I'm feeling ill. However, my hubby & daughter always know when I'm feeling really bad. They can tell by looking at me, or if they have to help me up off the floor. We'll be married 15 years this Thursday, and I know I'm blessed. Even though my hubby is very supportive, I've told him that I sometimes worry about him growing weary with putting up with me. He always reassures me that I've got nothing to worry about. However, we all know how hard this illness is for those of us living with it and for those who are taking care of us.

Sam

[marni4u]

I guess what you're saying makes some sense--but, I don't feel I was one who expected 24/7 attention.

[Dawg Tired]

I suppose I am "blessed"... When Hubby and I married, HE was the sick one. He had crashed an airplane in 1990. Just a few days ago we celebrated the 19th anniversary of the crash. Why did we celebrate? We thanked God that he didn't die'

I didn't meet him until 1997 - before I was ill - while I was a nurse in a clinic and he was a medical courier. His family all chose to be in denial about any residual problems he might be having due to the HEAD INJURY he had from crash! They kept telling him he was fine. They ignored the daily depression, frustration, and physical pain he was in. Don't get me wrong - these aren't mean, cold, unfeeling people. They were simply presented with a situation none of them could understand - a gead injury.

So we married in Feb of 2000 - I might add we were married within 3 weeks of when he proposed. I would have waited a few months but I recognized an important truth. HE NEEDED MEDICAL INSURANCE!!!

Antidepressants and a neurologist made a real difference in his quality of life. We still don't have a handle on his headaches - but things are better now. Also, due to my income, he was able to be a househusband. I mean, really, anyone who looked at him from day to day could see he had no business in the working world.

But in 2002 I became ill. Fortunately, I had a wonderful husband who was extremely well versed in chronic illness. We were able to take stock of our situation and do what we needed to do.

At this point - for over half of our marriage we have both been ill.

While I realize that is a bot unusual, it has had it perks. We understand each other, we both make a lot of doctor/hospital/testing visits. We both know what pain is, we are both very aware of what fatigue is.

Looking back - me marrying this man who had many medical problems of his own has been a blessing to me. I can't help but think that at some point - for these men who have walked out on the women who love them - THEY will need care and comfort and it will NOT be there for them.

Kind of poetic justice. (Uhm, yes, I have seen this happen!) The Universe has a strange "leveling" effect...

[bjt22]

Maybe this is can be used as another example of why we should choose our mates very, very carefully, and why marriages need to be worked on consistently from day one. And sisters, don't ever become the one who "does everything" for your man...you're asking for trouble because there will come a time when you won't be able to "do it all".

I've been married for 27 years. My marriage is better now than it ever has been. It just keeps getting better and better. Part of this is due to my seeing how wonderful my husband has been since I've become sick...and I've been sick a long time now. Ofcourse, it goes both ways...during our early years, while he was building his career, I was the one who was at home taking care of a houseful of small children, largely by myself. Even then, every minute he was able to be home, he was pitching in there...largely because I let it be known early on that this is the way it would be! He didn't complain then, and he doesn't complain now. I know it's hard, but this really is a test of commitment. And commitment sometimes means that we set the stage in a way that helps to assure that someone doesn't suddenly have blinders removed, have a freak out and walk.

[erikainorlando]

Well...I am divorced. But it had nothing to do with illness . I am in a relationship now...and probably mostly do things wrong...BUT I need to say my experience!! I believe that at least with my present partner, he WANTS to be helpful. He WANTS to take care of me. He WANTS to feel like he is the hero for me.

BUT I on many many occasions get frustrated because he is tired, or comoplaining of his shoulder hurting while I am holding one eye open because I am so dizzy.

I get angry when he forgets to help me across the parking lot because I am dizzy. I forget that he goes on every doc appt with me and seves me when I am too ill to stand etc. etc. I love him dearly. I need to validate how hard this is for him and cut him some slack when he forgets or can't imagine how bad I feel and how often.

I don't say it often enough just an "I love you and I appreciate how much you are there for me". I have more of a tendancy to say "I feel so sick. I can't believe you didn't ask me how I feel".

This is just my story with my current relaitonship. If this makes any sense...

Erika

[Jeannie32]

Severe illness has a way of making us self-absorbed -- with just cause. But my point is that we certainly have to make every effort to prioritize the feelings of our mates and caregivers.

Most of our mates "signed up" for the job under a completely different set of circumstances. They had goals and dreams too - many of which are now dashed to pieces by circumstances beyond their control - and ours...

But we have to cut them some slack too! If we don't - we can't be too surprized when they leave. That "for better or worse" sounds really good on paper - but it is VERY difficult to hang in there when there is nothing but 24/7 demands, complaints and drudgery. Why do you think some prisoners try to escape from jail?

I am in no way inferring that any of you were the sole reason for ANY breakup -- but there are always 2 sides. All I am sharing is what I consciously changed in MY attitude and approach to life that made a HUGE difference in both my marriage and my relationships with friends and family.

Jeannie

[marni4u]

maybe the illness is just the excuse for the marriage coming apart ---not the root cause.

[Poohbear]

I think there are some good points made in this discussion.

It is certainly true that chronic illness takes a toll on the ENTIRE family and close friends. I think it's our responsibility to be as independent as possible and to acknowledge the pain and losses that our loved ones face in this journey. It's nobody's fault when illness strikes but often there is frustration, anger and a host of other negative emotions in this journey and everyone in the family needs a safe place to vent that and work through it. I know it isn't an option for everyone but I think a therapist can be invaluable--it is a place you can "dump" your feelings and frustrations and be heard, but it's with someone who isn't involved in the situation and somone who doesn't have to react in the same way family and friends may feel they should.

Having said this---it's also true that you could do everything right and still lose a relationship. Some people simply can't handle it or don't want to. Is it possible we can be self absorbed? YES. But it's also possible that in some cases things won't work because our partner or other loved ones are self absorbed. We can only change ourselves.

maybe the illness is just the excuse for the marriage coming apart ---not the root cause.

Yes, I think this is sometimes true. Like anything else.....if the foundation is weak or there are problems prior to illness then the illness may be the "straw that breaks the camels back" but isn't the 'real' problem.

[juliegee]

Interesting thread. Before I comment, I want to reiterate that I am not blaming anyone who's had/having relationship issues. I've been married over 25 years to the same man & we've had our share of drama

My husband is one of the people that I have told about my illness. No doubt he's seen me self-absorbed at times, especially when things were really bad. He's spent weeks at a time in the hospital with me more than once, etc. Also, I need him to understand that there are simply times when I MUST lie down/go to sleep and times when I don't have the energy to fulfill obligations, etc.

Other than he and my Mom, I don't talk about my illness except on an "as needed" basis. I don't make a big deal out of it- I'm really matter of fact. My close friends know I have "a touch" of what my son does. He's been really sick with dysautonomia and even missed a year of school. They noticed that. But I don't go into technical names. People just glaze over. They can't grasp it. It doesn't mean they don't love me, they just don't get it. I understand. I'd rather not understand it myself.

Why do you drink so much water? It boosts my blood volume and makes me feel better

Why do you have to carry your purse? It's got my meds and epi-pen in case I need them.

Why can't you stay still? My BP plummets when I do. I feel better moving around.

Why are you on so many meds? I have a touch of what Mack does.

Why don't we stand & watch the band (or whatever)? If I stand still too long, my HR goes crazy. You go ahead.

You get the picture. Everyone is dealing with something. This is just how I am. I don't see it as my defining characteristic. I hope people remember me for my wit, kindness, ability to work hard, inability to sing on-key, sense of style, etc. NOT MY ILLNESS.

That being said, my hubby deserves kudos for being there when I need him- most of the time. He's done it uncomplainingly and I'm very grateful. My heart breaks for those of you going through rough patches. I can only pray that the changes will ultimately bring you more peace and happiness in the long run.

Julie

[erikainorlando]

I love what Julie said!!

Altho...many times my illness is still defining me...I have to think that the longer I have it the more comfortable I will become and accepting of it and my limitations and no longer be so overwhelmed by it...I think I am getting there slowly. Somedays I am still angry and scared. It is a loss...of health and peace of mind. Somedays I lash out...honestly I do..but it is getting less often.. and those closest to me get it the most.

For me it feels like I have been hit by a bus! I am slowly learning how to deal with my new limitations... . Seems like just another process...and I am so grateful for those of you who have gone before me and can tell me how you all have learned to live a new normal...

If I am at peace with my circumstances...I am much easier to live with. My difficulties usually lie within rather than without.

Erika

[futurehope]

I agree with what Erika and Julie (the two posts above me) said. For me, it has been a learning experience to refrain from discussing how I feel. Under normal circumstances, one feels better soon, and all is well. Not with me.

If I always discussed how I felt, that is all I'd be talking about because my condition does not improve. That being said, my relatives and friends know I have a chronic condition because I've said something at one point and I'm no longer working. Other than that, I PREFER them not to ask me "how are you doing" because my preference is to focus on THEM or anything else but illness. I get tired of "attending" to this illness meaning I get "tired of talking about it".

Now, for the ones who have recently lost a partner, my heartfelt sympathies go out to you and I in no way want you to blame yourself for the pain you are now experiencing. There are many reasons people leave, and some have been mentioned here. Honestly, if a person wants to leave, you have to let them go and let it go because there is no choice. But the positive out of all of it (and I have been through a divorce) is that there is another side to it. You will become a stronger person emotionally and there are new and better experiences ahead of you. It is difficult to imagine that right now. You just have to believe me on this one.