Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
I really hate asking this but I don't have a lot of family and I've been kind of a shut in as of late...
Problem:
My wife.
She is a nurse and is on her feet all day. We have a 3 year old. I travel a lot with my job and I'm gone for days and weeks at a time.
Some days I can barely walk or hold my eyes open. This pseudo gout or whatever it is kills my joints, makes me so sleepy, and to top it off they think I have sleep apnea. Yay!
This disorder isn't widely known, and the pain and discomfort isn't widely accepted. Sometimes I literally cannot help out around the house and I feel so terrible. I can barely read my son a book at night some nights.
How do you keep your wife or husband happy? I put so much pressure on my wife because like I said I hurt badly and my heart skips out of time. Even with her being a nurse, I honestly don't think she believes me.
Is it just me or does anyone else feel like the weight of the world is on their shoulders and this damned disorder is to blame? I swear like right now I cannot sit, stand, sleep or walk without my legs/hands killing me. Her birthday is tomorrow.
I wish I could say that after all the phlebbing I'm back to normal, but I can''t. During the summer I'm fine but this cold rainy weather man, it's playing hell on every aspect of my life.
Thanks for the vent. I know it could be worse.
Problem:
My wife.
She is a nurse and is on her feet all day. We have a 3 year old. I travel a lot with my job and I'm gone for days and weeks at a time.
Some days I can barely walk or hold my eyes open. This pseudo gout or whatever it is kills my joints, makes me so sleepy, and to top it off they think I have sleep apnea. Yay!
This disorder isn't widely known, and the pain and discomfort isn't widely accepted. Sometimes I literally cannot help out around the house and I feel so terrible. I can barely read my son a book at night some nights.
How do you keep your wife or husband happy? I put so much pressure on my wife because like I said I hurt badly and my heart skips out of time. Even with her being a nurse, I honestly don't think she believes me.
Is it just me or does anyone else feel like the weight of the world is on their shoulders and this damned disorder is to blame? I swear like right now I cannot sit, stand, sleep or walk without my legs/hands killing me. Her birthday is tomorrow.
I wish I could say that after all the phlebbing I'm back to normal, but I can''t. During the summer I'm fine but this cold rainy weather man, it's playing hell on every aspect of my life.
Thanks for the vent. I know it could be worse.
Honestly, I was embarassed to even tell him at first. In my previous relationship, it was almost like my partner didn't even believe me. I still have the same problem now but with my parents. It was very frusterating for me to be in constant pain and always tired and have nobody believe you. Even doctors don't believe me! It's always "your too young, your a female, it's all in your mind" Well, I know my body.. I went from playing soccer for 11 years and beginning to work at the police academy to not even wanting to excercise anymore. It's stressful and the one person I wanted to vent about this to was my partner because nobody else would believe me. it sucked because he always ignored me talking about it and just kind of laughed. I COMPLETLY undertsand what you mean when you say she doesn't believe you're pain because not only my partner, but EVERYBODY doesn't believe me except others with HH.
The reason for the ending of our relationship was because of HH, sadly. He got annoyed and frusterated with me because i wasn't the "normaly 20 year old I should be" He expected to go out and party and drink everynight and stay out until 4 am. He didn't understand the fact i am not able to drink alcohol because of HH and I go to bed everynight at 8 because i'm so tired.
Our relationship wasn't like this at first, for the first 2 years I felt perfectly healthy and normal. I knew i had HH but I had no symptoms, so I didn't feel is was necessary to tell him. After the first year of begin together, my HH symptoms slowly started to kick in. After a year of the frusteration of my sickness, he left. He told me I wasn't the girl i was when we were first together.. Which was a douchebag thing for him to say, because duhh obviously i'm not the same as i was before, i'm sick!. I couldn't blame him for not wanting to be with me, but I do blame him for not being as supportive as he should have been. Were young, I didn't want to tie him down so we went our seperate ways.
My current relationship Is great, for now. I was scared to tell him at first because of the downfall I had with my last relationship but he started to catch on to the sleeping for 10 to 12 hours a day and my nonexcitment to go running with him. So I eventually told him, unlike my previous relationship where i didn't tell him until a year later. To my suprising, he's been very supportive of it.
He offers to drive me to my appointments, always asks for updated on my levels, buys me a drink after i'm done my phlebotomy, makes me proper low iron foods, i could go on and on about all the nice things he does for me regarding my diagnosis. he gets frusterated sometimes with the staying out late or where we can and can't go to eat, but having HH is something that I was born with and can't control. I have to live with it everyday and if he wants to be part of my life, then he has to deal with it everyday too.
What i'm trying to say is, yes. it has interfered with my relationships and it was difficult to cope with. But a relationship involves 2 people and in that relationship, HH affects them both, not just one. I know my boyfriend now gets frusterated sometimes, but he looks beyond that and knows it is something I can't help. if he wants to be with me, then he has to look passed my disorder. Not ignore it, but look passed his frustration of it and be supportive.
I'm in constant pain 24 hours a day, I feel horrible constantly. but you can't let HH control your life; YOU control you're own life. being with my passed partner who ignored it and didn't believe me just made everything worse. it just made me depressed all the time on top of me being tired. The point of this isn't saying leave your wife Lol, the point is to talk to her about it. Even though she is a nurse, HH is VERY rare and even most doctors do not know much about it. Having a serious sit down talk with my boyfriend made a huge difference. I was scared to tell him about it, but i'm glad because it made our relationship great. If you're HH is making your wife unhappy, then that's just crazy. In good relationships partners need to look passed it and I learned that the hard way.
i wish you the best of luck!