Please be careful with supplements. No iron supplements! It's best to avoid vitamin c as it helps your body absorb iron. Milk or dairy with or within 30 min of a meal is good as it helps flush the iron that was injested.

Make sure they are monitoring his hemoglobin as well as everything else.

Hopefully he will get feeling better soon!!

Hello healthymama,

I have HH and I work full-time and do some additional free-lance work as well but I know some people have found occupation to be difficult.

I don't exercise any more as I have bad pains from bone degeneration in my hips and feet and even though my ferritin levels are within a normal range now and many HH symptoms have disappeared, the bone degeneration is permanent.

I tend to do less outside of the home apart from work because it involves more walking which makes my bones hurt and once they start hurting it takes a long time to stop. I have organised my library / TV room for maximum enjoyment with music, reading, DVDs and a computer with 2 screens (having used 2 screens for many years I can't understand why people put up with the limitations of only one).

When I was first diagnosed I had frequent phlebotomy treatment and although I felt physically better in some ways I did develop a bit of a bunker mentality and found it harder to put the effort into socialising and going out. I was aware that this was not good for me so I enrolled in weekly craft classes which I have been attending for 2 years now. I have learnt new skills and met some nice people so it was a wise choice for me.

I don't take supplements and some are harmful to people with HH. Instead, I am mindful of combinations of foods in my diet for example I will try to have calcium with meat meals but not vitamin C. If I have a snack with vitamin C then I have it in between meals. I drink tea with meat meals now.

I eat less than my partner and many other people that I know and I still put on weight while others remain stable in their weight but I am not sure if putting on weight is related to my age and lack of exercise or is to do with HH.

People with HH seem to experience some similar difficulties and a range of difficulties that are a bit more individual and the treatment programme seems to affect people differently.

Hopefully your partner has organised his life so that he can continue to be productive at work and enjoy his leisure time within the limitations of any difficulties with HH. If you are concerned about something in particular you may need to explain your concerns to his doctor.

All the best to you both, Christine

My experience has been diet makes all of the difference. I found sugars and carbohydrates were energy zappers as well as too much sodium. I don't know what your husband is eating. Though I wasn't diagnosed diabetic, but started reading up on diabetic foods and recipes. This made me more energetic. Exercise helped me with lots of stretching first. I socialize less, because I do often find it mentally taxing to focus on people talking for long stretches.

I can relate to your husband. For those who have never experienced chronic pain, you can't make them understand how much it takes out of you. You don't want to leave the house because of how tired you are. Exercise does hurt. Being social is hard because that alone takes a lot of effort. I am in the same boat, but as hard as it is, you must get up and move. I'm a massage therapist and when my pain is bad, my job SUCKS! I go home after work and fall on my bed and sleep. I don't go out, I'm not social, I forget to call people back. I become this shell of myself. But I know that I must move because it helps with circulation. I'm not basing this on anything beyond my professional knowledge of the body systems but basically; Iron is a metal, metal is heavy, blood flows through every part of your body including the muscles, when you don't move blood becomes stagnant. So imagine all that heavy stagnant blood stuck in the muscles. Yes it hurts to move them, but move them you must in order to push that blood through. Like your husband I don't exercise, but I stretch and walk, these two things are (in my opinion) vital to all humans, regardless of their medical condition. Pain can and does cause clinical depression and movement can help decrease that risk. Massage is another helpful way to increase circulation, and he has to do very little in way of effort with that. ;-)

I can also relate to you; my wife has a chronic pain condition (aren't we the pair) and she tends to default to the same reaction your husband takes. It can be very frustrating to watch the person you love not doing everything that you think they should be doing for themselves. I'm guilty of it everyday even though I know exactly what she's going through. My advise to you, beyond just be patient, is find some way you can help him without forcing anything on him. Diet is what comes to my mind. I obviously have no idea what the roles are in your home, but one way you can help is stocking the house with foods that are beneficial to him, but make sure you still get an adequate amount of iron. Knowing what foods are high in iron and ones that block the absorption. Also, if you eat breads and pastas making sure they're not fortified or enriched (aka iron added).

I hope he find the help he needs soon so you both can feel some relief.