I hear you.

I feel totally the same.

Some days it takes me three hours just to feel like I can move. Coffee helps a little bit with the pain....I stay away from anti-inflammatories like ibuprofen because they seem to irritate my liver.

My (estranged?) husband does not seem to believe me either, and even says things like, "If you're really sick you can get disability," even though hemochromatosis is not well-understood enough to qualify, as far as I understand.

The weather recently changed....where I live we are heading into a cold, rainy weather, and I feel awful....

I don't know what to advise you. I need to lose some weight and am trying to exercise more....studies have shown that exercise helps with regular arthritis, but I am not sure about hemochromatosis-related arthritis.

If you want to be friends, we can vent to each other! ;~)

And for those of us who may have S.A.D. (seasonal affective disorder), it only makes the fall & winter months that much harder for people to understand or relate to!

strype.... how are you even able to work? I haven't worked for the past 2 yrs. Some days I feel like I could still do a double shift but NORMALLY... I don't feel like I could even do a 4 hr shift without needing to take a nap (which wouldn't be possible).

My husband doesn't say anything about my napping, usually runs the errands but sometimes doesn't understand when I don't feel like attending his family functions. Oh well, maybe in the spring........

Honestly, (and you can take my advice with a grain of salt) I think talking to your spouse is the best thing you can do in this situation. When I sit down and have a really deeply honest conversation about how I'm feeling and what's going on with both of us, it usually clears the air.

Do the best that you can do in each moment, and that's all anyone can ask.

JetBleu

Be sure to check for other reasons as well. I'd hate to think that something else was causing the extreme fatigue... I know many in my area are finding they have Lyme, even after testing negative for it. It's years of feeling terrible before the Lyme shows up in their system. It takes 6 months of antibiotics, but then they feel wonderful! Just a thought...

I haven't got a spouse/partner, which in many ways is fortunate. I do live with my 21 year old son, who is extremely helpful and sympathetic, although I doubt anyone really understands unless they have HH themsleves. My best friend (who's a few years younger than me and enjoys rude health) is a star, but sometimes when she says things like 'Ooooh, I really ache today', I feel like strangling her :-) Plus, an added disadvantage, I live in The Netherlands, which has one of the worst, gloomy, rainy, damp, miserable climates on the planet! It's even damp and humid in the summer (when is usually rains for the entire season too. Last summer we barely saw the sun at all. Gawd, do my bones ache!). In short, you have my deepest sympathy.

You've asked a difficult question: how to keep your spouse happy when you can't give 110% of yourself to your marriage, your child and your responsibilities.

People in general seem to be happiest when things run smoothly and there is little to no stress. You mentioned that you have to travel a lot for work....I have friends who are fairly healthy. The mom is a stay at home mom and the husband has to travel 2 weeks at a time for his job. They have 2 school-age daughters and the mom just continuously says how she needs her husband's help when he's away and how much she misses him.

I have another couple I'm friends with...the husband has a degenerative brain disease. He receives disability and works part-time. The wife continuously complains that her husband is not there for her anymore. She complains that he's not the man that she married. She complains how she has to pick up the slack and how unfair it is. How tired and stressed she is. How much she misses the healthy husband she married.

As for myself, I have been a stay at home mom for many years before ever feeling sick. My husband has always expected me to do everything. He was never really willing to help out and was always upset because on top of doing everything in life, I didn't have a job, too. I felt stressed out and tired all the time even though I was not suffering the effects of HH.

When I started to feel sick, my husband was furious, especially because I was not diagnosed for years. He couldn't tolerate the fact that I couldn't do all the child rearing, cooking, cleaning, yard work, grocery shopping, errand running, banking, bill paying and have a job, too. He said that he was too tired from his job to ever do any of this and he needed more from me.The fact is, whether he's too tired or not, he's not willing to do the work and he's not happy because I'm too tired to do it. His general take: my illness let him down because I can't make his life as stress-free as he wants it to be and there is not pill to "cure" me. I can't be all he needs me to be and he's angry that I can't take up the slack to make his life less stressful.

Marriage is a partnership. The expectation of that partnership is that both partners contribute equally to the marriage. When there are extenuating circumstances such as illness, despite the vow we take to be there for each other in sickness as well as health, the healthy partner feels gipped and stressed and overwhelmed. To make things even more difficult is that you probably don't look sick.

There is no such thing as happiness...it's a momentary feeling. What you're looking for is less stress for your wife so that she is not so overwhelmed and angry because she is overwhelmed. There are no easy solutions to this problem. You DO need to have an honest talk with her. You might need the help of a counselor to communicate and understand each other.

You're sick. I was told that I may never feel better. Life has changed. Change has to happen in your marriage...the expectations that you and your wife have need to change. A new partnership needs to be established. It's not easy and it is hard work on both your parts to reshape how your lives to accomodate your illness. You're not looking for happiness, you're looking for less stress and contentment.

On top of all that, are you sure that it's the HH that's making you feel so tired? For me, I'm sure it's the iron overload and my body's desire to collect iron that makes me so wiped out. But are you sure?

Well, I am exhausted most of the time too...No matter how much I sleep,I'm just always tired and have been this way all my life. My joints are killing me too. It's been worse lately. I have to have my husband open my water bottle I'm taking to work with me before I go since I cannot open it any longer w/o a lot of pain. I still have to work, I don't have a choice...I wish I did in some ways...but in others,it keeps me going. I try to take walks as much as I can because walking is good for everyone-but it does make my feet hurt quite a bit. Even so, It lifts my spirits to get out in the sunshine. And yes, winter is upon us and I tend to be a little more down...

Before my husband now, I was married and in a relationship with someone for a total of 17yrs. For the most part-it was not easy. He expected me to be someone I was not. I ended up being a total disappointment because he could not turn me into his little stepford wife. My conditions (ailments) were simply too much for him. Now I am married to someone who I have known for a total of 24yrs and the marriage/relationship is VERY different. He never doubts me or blames me or expects me to be someone I am not.

My advice to you is to take each day one by one. I have struggled my entire life with feeling of anxiety and depression and have spent many yrs digging and clawing my way out of the hole it tries to keep me in. I never stop fighting and I find ways to deal. I write, I do the things I love like photograpy (you need distractions), I don't hold things in because it only makes it worse and if the people around me can't deal with that..."IF YOU CAN'T HANDLE ME AT MY WORST THEN YOU DON'T DESERVE ME AT MY BEST"

Try not to hyper focus on the negative and practice on being more positive and picking out every little thing in life that is good. I have had a bad habit of doing that and it can cloud everything and leave such a bad outlook. Now I'm sure you're thinking "easier said" but don't forget...I've been there and still am but I'm fighting it tooth and nail.

This doesn't mean i'm not laying on the couch out of breath,hurting and tired out of my mind...but every little chance I get I pour myself into the things I love.

Zas4 has many good points about marriage...and I've always believed if everyne gives 100% then everyone recieves 100%. We have to understand where the other person is coming from. I know it must be hard too to be well and deal with someone who is sick all the time. That too, can be overwhelming...just like to us the other side of the coin is overwhelming.

Just do the best you can. Take one day at a time. Never stop fighting and enjoy the little things.

So sorry to hear that.
I supposed that living with anyone with disabilities (which is what you seem to be experiencing now) is challenging. It is much more so when people are having a hard time understanding it. I think that your wife being a nurse only makes it harder- she is "supposed" to understand on the one hand, but on the other hand she might be having a hard time accepting and understanding it BECAUSE she is a nurse and has probably seen worse.

I agree with other responses- you need to talk with her. Use a lot of "I" statements, rather then blaming statements. You can let her read some of the posts in this forum- that also may help her understand.

My husband calls it Hemochroma-crisis ,thank goodness for this group ,I no longer talk about it around him .

I've been fatigued for years and in pain. All along, I've worked full time, raised three kids, dealt with aging parents, and took care of all the household responsibilities. After I started phlebs the exhaustion worsened (mostly because of concurrent thyroid issues). I seriously needed his help.

When I tried to discuss HH - he literally laughed at me! He now lives at an RV park and I have filed divorce papers. Enough is enough.

My daughter has been diagnosed H63D/H63D - while I am C282y/H63D. Obviously, hubby, needs tested. With his usual lack of responsibility, he has yet to make an appt with Dr. He had a heart attack at age 52.

All I can say is...I'm so sorry Strype!

Patty

I totally understand. My husband works and thinks that because he put in his 8 or 10 hrs in he is done when he gets home. I work 4 10-11 hour days on my feet as a hair stylist, I have to act happy and uplifting to all that sits in my chair. I come home I am so tired it is al I can do is change my clothes and get in my comfy chair. He gets off work at 3 or 4 I get home at 7 or 8. I get " Whats for dinner?" Really, OMG They just don't get it. I continue to do all the housework, shopping , cooking and whatever else life throws at me. It is very frustrating. Because we don't look sick. I swear we should all start wearing band-aids on our forhead.LOL. Somehow I do it, but all I want to do is sleep. Don't know the answer to this one. Just makes me want to scream!!!!

I was also married to a man who just didn't get it for 9 yrs, we both worked i had 2 small kids I got up every morning at 6 am to get the kids off to daycare and then I had a 1 hr drive to and from work everyday in traffic run home for 6 get the kids cook dinner, clean, do laundry, dishes bath kids play with kids and then put them to bed get up when they are sick and on and on and on.. he worked 8 hrs a day came home did nothing.. treated me like crap, and even when I hemmoraged after having my first child (6 weeks after) and had to be hospitalized for the night and he had to look after our son and take the day off work, he blamed me and said I was doing this because I needed a rest..LOL man the writing should of been on the wall but hey I was young and dumb.. when my mother passed away I was depressed after 6 months of not being ok he told me to get over it she was dead.. the next day he went to work I packed all his stuff in garbage bags, changed locks and told him you don't live here anymore get lost..

I tried talking to him, pleading and so on, then I didn't understand why I was so tired even when I got proper sleep, and when I was sick I was faking it just so I could get out of doing my chores..

Talk to your spouse, tell them look this is a disease it can be treated and I can feel better but I need your help in understanding and just loving me and being their for me.. if they can't get past that and can't or won't help then its time to leave because they will never be their for you and you are better off being alone atleast you won't have to drag your butt for them anymore..

I have raised my kids alone, up until I met an amazing man 7 yrs ago he is so wonderful, always their for me as I am for him. He doesn't always understand why im so tired or what not but he tries to help. he listens when I talk about HH and he has done some reading so he can fully understand what I am going through. He said by reading and having a little knowledge on this has helped him to help me. When Im tired he tells me go have a nap I will cook dinner or clean up, when I hurt he rubs my back when I cry because sometimes I am just fed up he holds me and tells me its ok..
When he is sick I take care of him, make him soup bring him water .. I sit with him talk to him let him sleep whatever he needs when he is ill

This is what a relationship is, its 2 sided we are not perfect but we both put in 100% and are sympathetic to eachother.. If 1 person is not giving 100% it won't work you will just end up hating eachother, a marriage is a 2 way street I help you and you help me. Even when I am not well and if he needs me I will suck it up and help even if it is for 5 min because I know he would do the same for me.

I'm glad I'm not the only one. Today I feel like I could crawl up in a hole and die. Aye yay

Thanks everyone, I don't know what I'd do without people going through the same problem.