My husband is an incredibly patient man. He is an excellent father and I wouldn't trade him. Having said that, we are from different worlds.
I am the only daughter of a military officer. Healthcare was provided in abundance by the government. Although we were not rich, not much outside of academic success was ever expected of me and I never wanted of anything within reason. My husband was one of two children and grew up in a trailer which his blue collar father built on to with his own hands. They had no medical insurance so most illnesses and injuries were treated at home. They tended to horses before and after school so after homework spare time was rare. Every need was saved for and luxuries were few. To give an idea: when I first met my husband the house had one rotary dial phone, one tv, no dishwasher, no computer, no cd player and no a/c.
My husband is not prone to anxiety, depression or any overwhelming emotion. He works through illness, injury and extreme temperatures. No matter how I try to explain what I go through, he has little point of reference. He has been with me through most of my office visits and tests and has endured my aches and pains. Understandably, the ordeal has worn on him as well. After all the near miss diagnoses, I know there is much doubt in his mind and he is somewhat numbed to my distress.
I did tell him I have Fibro and have tried to describe it to him as best as I could but, at first, that was all I did. His mother was dying of cancer. That was more important. You probably noticed I said 'was.' She passed away almost a year ago.
At that point, I summed up every bit of strength and dignity I could and played the dutiful daughter-in-law. I retained my composure for a full week to help them through the preparations and laying her to rest. I knew it would take its toll emotionally and physically but I needed to perform well. I adored my mother-in-law and her battle had been brave, she deserved my best. Besides that, as selfish as it sounds, when the dust settled I would be able to relax and explain my affliction without stealing any attention or sympathy that might otherwise have been spent rightfully on her. With an end in sight, I was able to survive the week. I spent the next week recuperating and allowing myself, finally, to do my own mourning. I barely left the house.
So now what? 'Oh, hey everybody! By the way, while your Wife/Mother was dying, I found out I have this chronic illness that gives me an excuse to be lazy and flake out of activities you might want me to go on. It won't kill me or anything like that, I just enjoy taking frequent breaks and naps, I avoid the stairs if at all possible, I don't work and I don't lift heavy objects!' Try working that into a conversation.
I have 'attempted' to explain myself a few times. Went swimmingly. Either my Father-in-laws hearing aid battery was dying and he was in 'nod and smile' mode or my brother-in-law was too distracted to actually be listening. I've come to the realization that without my husband backing me up (and perhaps translating) I can't get through to his family.
Obviously, I have to get through to him. We do have a B-E-A-Utiful little 2 1/2 year old boy. So far I have been able to pawn off the little things that have not gotten done to the time spent taking care of him. My husband buys into that to an extent, our tot is very active. Unfortunately, not only is the excuse wearing thin, it is not helping me relate to him.
I am swiftly losing my status as his equal in his eyes and am being demoted to a second child. To sum up the approximate outcome of all our little encounters: he believes pain I 'had' made me sedentary, being sedentary made me lose muscle mass and lost muscle mass has brought me pain and fatigue. *writer bangs head against wall repeatedly* I can't verbalize a valid argument with him, I've tried. He knows there is no actual 'test' for Fibromyalgia. One doctor's diagnosis is not going to be enough.
Unfortunately, my story is not a unique one. An untold number of pain sufferers all over the world engage in similar struggles everyday. Gaining understanding is an uphill battle at best. I have also learned that it is one that doesn't ever go away. Be it a month, a year or a decade, it must be worked towards continuously. It's impossible do describe effectively to someone who has never experienced the pain, weakness or emotional loss of control to someone with no point of reference, especially without any Vulcans around to perform the meld.So, we turn to each other. We find solace and encouragement in those who have hobbled our paths. I wish to thank every single tweep, plusser, and blogger that has helped me find my way. I also extend the invitation to anyone who is struggling to reach out across the web and add your voice to our chorus.