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fibrofears

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Oct 27, 2014
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Diagnosis
08/2014
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Hello. I feel a little strange writing this post, as I know I’m not the only one who reads forums about fibro. Still, I really need your help. This post is long, and very personal. My questions are at the end.

My girlfriend of three years was recently diagnosed with fibromyalgia/chronic fatigue syndrome. The doctor is a bit torn as to which condition she actually has (I suspect it could be both, or just fibro). He referred to it as CFS with elements of fibro (which pretty much sounds like fibromyalgia, period, as far as I can tell, since both diseases involve fatigue and since she has the relevant pain points).

Let me start by making it very clear: I absolutely believe that fibro and CFS are real conditions. I have no doubt about this. My girlfriend would not make up or fake these symptoms. I know that she is afflicted with a disease. There is no need to try to convince me. I felt I should be clear about this, because so many people do not believe in fibro or CFS. I also want to be clear that I understand the nightmare chronic, unrelenting pain. I had a spinal fusion two years ago and, for five months prior to that surgery, I was in indescribable agony all day, every day. There was no relief. The surgery has improved it, though I still have occasional pain and soreness. Even so, I’m grateful that my condition was one that could be improved with surgery. I know that fibro and CFS sufferers are not so fortunate.

Let me give you a little bit of background. My girlfriend and I have been together for three years, and I do love her. I really, truly want to help her with this condition. But, at the same time, I’m scared to death. Our relationship was never easy. It’s been long distance for about half of that three years, as she lives on the other side of the world. The plan was to move to her. I am very close to my parents, and I need to maintain a relationship with them. That would mean flying them over to see and stay with us (estimated to cost around $6,000 per year). As you can understand, even before fibro/CFS, I didn’t intend for this relationship to cost me my aging parents. Further, as an only child, they may someday require my care, and I am the only family they have. The need me as much as I need them.

Originally, I would have moved over there in September, but we decided to push the move back. It was necessary because we needed to know what her condition was, as we would be moving to a different city. It was absolutely necessary to live in a city so that I could find a job. Since some diseases are affected by weather, we wanted to know what she had, that way we could choose a city that would work for her, and that would still enable me to make a living.

Everything fell apart a week ago. I am an obsessive worrier by nature. I have been reading, and reading, and reading about fibro. You simply wouldn’t believe the time and effort I’ve put into learning about this. I’ve read hundreds of pages, and I’ve spent dozens of hours, soaking up everything I could about the condition. This has completely consumed me. My girlfriend has wanted children for some time, and when I read that children had a 50% probability of inheriting fibro, I felt the need to discuss that with her. It didn’t feel fair to me to have children with that probability of inheritance. It felt cruel to expose children to that (even if the condition only manifested in adulthood), and it felt selfish. It also worried me in that we are not financially stable. I’m broke, and she’s not able to work even one full day per week right now (though she’s taking online classes in school and doing fairly well, which obviously splits her energy). How could we know that we would be able to afford her condition, for her to stay home with children as she wanted, to provide for those children, and for me to be able to maintain the relationship with my parents (who have no one but me)? Money mattered, but my main concern was the heritability of fibro – fear of passing it on to children. Over this, she broke up with me.

I accepted this at the time, because it felt to me that she was unwilling to consider the potential consequences of fibro to her, to me, or to our children down the line. It felt like she was in denial, and that she was taking a ton of risks with both of our lives by refusing to consider those issues, and by demanding a commitment on children. After all, she simply doesn’t seem to have the energy levels for a child right now (and we can’t predict the future), we aren’t financially equipped for that and we don’t know that we will be, and the children would have a coin flip’s chance of inheriting fibro. The entire prospect terrified me, because I felt that she was sticking her head in the sand and refusing to consider the possibility that we’d have to change our plans. Don’t get me wrong. I want her to be optimistic, and I am optimistic for her. So far, her symptoms seem mild (though I haven’t been able to witness them personally, due to the distance), and she’s strong. I believe that, if anyone can get better, she can. But her refusal to consider the possibilities and accept that we might have to rethink the biggest decision of our lives (having children) forced me to accept her decision.

I still love her. I’m completely obsessed with this illness now. I’m obsessed with helping her. I really, really want to help her. It’s driving me crazy. The reality is that neither of us can handle being “just friends.” Emotionally, we can’t do that. It has to be either on or off, so I simply have to let go, or I have to try to convince her to let me help her, while asking her to consider the possibility that this condition may have to change the course of our lives. Still, I can’t stop reading about fibro. I can’t turn off the desire to help her. And I know that I can help her because, by nature, I will always be learning about the disease – even when she won’t. I know that I will never stop trying to help, reading forums for others’ successful approaches to the disease, researching new medical breakthroughs, etc.

But, at this point, I feel like I really need to know what I’m getting into. I feel like I need to really understand the condition, and what it means to both of our lives. I hate to write this, but Fibro and CFS both seem like really hopeless diseases. An intercontinental relationship isn’t easy to start, and I know an intercontinental life (with family on both sides) would be hard too. I do not want to rob Peter to pay Paul – I want to meet everyone’s needs.

And now I’m wondering if I even can. It’s in my nature to try to be Atlas, and to try to lift the whole world. But I’m not Atlas. So I’m torn. In a way, I desperately want to call her and suggest renewing the relationship. I want to tell her how badly I want to help her. I want to invite her to reconsider the possibility that some dreams will have to change, but to remind her that we’ll be okay together. But, on the other hand, I almost feel stupid for wanting to beg her to let me help her, and for wanting to beg her to be reasonable about the future. As much as I love her, I feel unappreciated, undervalued – I feel like my original willingness to sacrifice so much was overlooked, or even ignored. But, at the same time, I understand her denial. She desperately wants to believe that she can get life back to normal. I want her to believe that, but I also want her to accept that we may need to make some changes. If she doesn’t accept that, it could do a lot of damage to both of our lives, and I will personally be the one who has to make all of the sacrifices to pay for the consequences, simply because she may be unable to contribute and help. After all, if she cannot work, I'd be left to support her, two children (whom I should put through college, too), potentially both of my parents down the line (should the need arise, though I will certainly have to help them financially if I am ever to see them again), and I will need to maintain myself, as no candle can burn at both ends forever.

So I have some questions. Some may sound selfish, and they may seem to contradict what I’ve written above. Please don’t think me selfish. I do have concerns about me – yes. But that relates to the well-being of the relationship. The fact is that there are two people in a relationship, and to make it work, they both have to understand each other and have their needs met. I’ve read posts in which men are told to forget about themselves, to suck it up, that love conquers all, and so forth. There should certainly be a degree of that with a caregiver, but there should be care for the caregiver too. He is a person, and he has needs too. No relationship can survive as a one-way deal. I honestly believe that the one-way situation, combined with the inability of some caregivers to be caregivers or to even believe in fibro, is one of the reasons for the 75% divorce rate that plagues those with the disease. And that is why I want to consider everything – her, me, future children – everything. Because I know that, without considering all of those feelings today, I doom us both to a harder future tomorrow. So, again, I ask you to be honest with me, and not to judge me for these questions.

1. Is it that only the people with the worst fibro symptoms post in online forums? Or are forums representative of the norm?
2. Is it fair to bring a child into this world with a 50% chance of developing fibro?
3. Can the typical fibro sufferer fully perform as a parent?
4. Is it common for a fibro patient to be able to work (preferably full-time, but even part time) and serve as a parent?
5. How much additional help is required from the typical fibro patient’s significant other, in terms of daily, household tasks? (I would obviously expect to work more, due to her inability to do so.)
6. Does fibro cause life to revolve around the television? How much does fibro limit other things? I obviously don’t expect her to run around playing sports with me. However, it’s hard to imagine that our time together would start to revolve around a television (it never has).
7. Can someone with fibro travel actively? Our relationship has revolved around a lot of travel to this point - due as to necessity as our personalities.
8. How badly does fibro damage the typical patient’s sex life and sex drive?
9. At what point do you know the extent of a given fibro patient’s affliction – how bad it will get? I’ve read 6 months to 6 years is where it usually plateaus, but that’s so broad. Her symptoms started in July/August, and she was diagnosed in September.

For those who want to tell me I’m being selfish in asking these things – you can if you want, but you shouldn’t. Were I being selfish, this would all be easy. I am not losing sight of my girlfriend, and I am not failing to prioritize her disease. Please remember, she broke up with me, and I’m the one who’s compelled to call her and beg her to let me help her – something she may not accept, due to the issue of children. I care about her, and I know that I could be giving up a lot with this disease. I know that a caretaker basically has fibro, by proxy, though he's spared the direct physical pain (and, to some extent, the exhaustion). I just want to know the extent of it, so that I can make a decision that both of us can live with. Our relationship is an unusual one due to the international/intercontinental issue, involving a lot of additional concerns. That, combined with her inflexibility on things things that may have to change due to fibro, has forced me to review these questions.

Please be honest with me, and please be fair to me. I have asked these questions for all of the right reasons. If you could feel what I have felt since this diagnosis, and even since the breakup, you would know that I am genuinely focused on her, on our relationship, and on my family. This is not simply about me.
I would be grateful to hear from caregivers and fibro sufferers alike.

Thank you.
 
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