Hi fom Sunny Coast QLD Australia - Partner of FM patient

[QuentinCroft]

Hello - New here of course and looking forward to learning as much as I can about FM. I'm a partner of an FM patient and would like to gain more insight to becoming a more effective partner.
Already some threads have helped on here.

Although I love my wife unshakably - I cringe at some of my inner behavior leading so forms of impatience and burnouts with a young family being a sole carer. I'd like to join groups to expand my ability and usefulness in being a decent partner. I get too self centred sometimes.
My current issues are frustrations I create through ignorance about FM and what it's REALLY like for those with it. Often I feel inadequate or contemptuous about things I know I don't know enough about and create unrealistic expectations of my poor partner.
Ultimately I'd like to understand more, have better acceptance and usefulness for my partner who's having a dreadful quality of life.
I'd be keen also to know if there are "Partner of FM sufferer" groups where I can learn more about how others do this well.

 

[1sweed]

Hello and welcome to the forum. You sound like a wonderful mate. To want to find out about fibro, so you can treat your pardner better is the sign of a caring person. I think if you read through the post the underlining threme here is the lack of understand that most often happens in relationships and with friends. Your willingness to learn more so you can relate and not do as others do, well you got my vote. This is really a very special gift for that special someone in your life.

If you read through the pain and chronic fatigue sections they will provide you with added knowledge. Also read the groan and moan, and vent section for a better understanding of what the pain is like. The general section also contains many coping skills and hints on living with fibro.

Feel free to ask questions and we will do our best to answer them and give added support where needed. Glad you found us.

 

[nascarmike]

Quentin thanks for stepping up for your wife. Just wanting to understand what your wife goes through is a big time help. Patience is another big help for someone with chronic health issues. Good luck to you and your wife.

 

[elawhon]

It is awesome that you are taking your personal time to learn more about your wife's illness and the impact it has on her life. I try really hard to put myself in my husband's shoes and remind myself that no one can possibly understand what I am going through unless they walk in my shoes for a day. I jokingly say sometimes it would only take 5 minutes and they would be begging to go back. When I am at my lowest and in the most pain he often asks me if I have my life insurance in order. I try to laugh it off, but it is his way of saying that I am making a mountain out of a molehill and it hurts. Although this has been going on for the past 5 years, we are finally coming to a possible diagnosis of fibromyalgia, but we have to wait for my blood work to come back and test negative for all those other dreadful things like MS, Lupus, Rheumatoid Arthritis, Thyroid issues, and Lyme's Disease. My husband is going with me to my next appointment. I hope the doctor will be able to explain that this is real and I am not making it seem worse for attention or trying to get out of some dreaded chore or responsibility. In fact, while I have been so sick for so long, I keep a very clean house unlike many of my well family members. He does see that, but it does not help. My husband has alluded to these feelings he has about my illness many times, and says really hurtful things. I just don't understand how he can believe that I can keep up a charade like this for 5 years without slipping up. Well, I did not mean to ramble on. I would just encourage you to keep seeking understanding, take time out for yourself because you are having to take on more responsibility to support her, and talk to her about how you feel without pointing blame. These are the things I wish my husband would do to help us in our relationship and in coping with what is going on with me.

 

[QuentinCroft]

Hi Elawhon - thank you for your reply. I'm glad you did expand as your observations about your husband - unfortunately I have done the same with my wife which is a significant motivation for me wanting to learn more. Your work around the house and looking after the family is like my partner.
I find that moments where I become "cringe-worthy" with my wife are significantly when I lack ACCEPTANCE.
My heritage is of past generations who have little tolerance for tiredness, ill physical, mental or emotional health - in their eyes you just shook yourself off and kept going. Gladly I want to break that cycle, I cannot deny my wife's condition and am more forgiving of my family and friends who still wonder if she is manifesting the situation. I suggest they are welcome to come stay for a week and see if their compassion and helplessness doesn't replace their ill-informed condemnations.
During my wife's journey of diagnosis we've had mention of caeliac, gluten intolerance, MS, chronic fatique and many more until one Doctor finally put her on this track.
It's saddening to see such an ordinary and painful quality of life as it looks like FM is progressive. Sadly I have too often thought I know what her causes are - such as diet (gluten and sugars and smoking) so when I saw her have these on a less frequent occasion - I would imply that she is directly responsible for aggrevating her condition. Her condition is there irrespective so I now see I need to REALLY work on stopping the BLAME game and doing what my heart knows best - to become a more understanding and supportive and especially accepting partner.
Although I have found a few partners locally of FM and we've been amazed at the benefits to share our learning together - I know I will never understand what it's really like for you. Thank you for your reply and I hope you find many insights to help all round for you here.
For what it's worth - if ever your Hubby wants to to have a yarn with someone to help normalise and identify his situation, I'd be happy to be available. The same was a tremendous help for me to open my eyes and heart and move through some shame I felt to be more empathetic.
Cheers Quentin

 

[QuentinCroft]

Hello and welcome to the forum. You sound like a wonderful mate. To want to find out about fibro, so you can treat your pardner better is the sign of a caring person. I think if you read through the post the underlining threme here is the lack of understand that most often happens in relationships and with friends. Your willingness to learn more so you can relate and not do as others do, well you got my vote. This is really a very special gift for that special someone in your life.

If you read through the pain and chronic fatigue sections they will provide you with added knowledge. Also read the groan and moan, and vent section for a better understanding of what the pain is like. The general section also contains many coping skills and hints on living with fibro.

Feel free to ask questions and we will do our best to answer them and give added support where needed. Glad you found us.

Hi 1Sweed - cheers for your tips and guides about what to read. I'll do this. I have certainly had some cringe-worthy moments of impatience, condemnation, lack of acceptance etc, and then shame to realise as if my poor wife hasn't enough to contend with. I'll check with her again to get on here as aside from me she has really no one who she could level with knowing they are her tribe. I know she feels a bit helpless when she gives me updates, knowing I will never REALLY relate.

Thank you again

 

[1sweed]

QuentinCroft,
Your very welcome. Yes, please encourage her to join in on the forum, I am sure it will ease her mind about a lot of the symptoms and maybe find some new coping skills along the way. She is welcome to ask us questions and to post where ever to her hearts content. Count me as a new friend.

 

[QuentinCroft]

QuentinCroft,
Your very welcome. Yes, please encourage her to join in on the forum, I am sure it will ease her mind about a lot of the symptoms and maybe find some new coping skills along the way. She is welcome to ask us questions and to post where ever to her hearts content. Count me as a new friend.

Cheers 1sweed - I'll see how we go. I drop a hint frequently about how as much as I would like to understand more, no one could to the degree as you guys on here.
Cheers for your friend offer.

 

[QuentinCroft]

Quentin thanks for stepping up for your wife. Just wanting to understand what your wife goes through is a big time help. Patience is another big help for someone with chronic health issues. Good luck to you and your wife.

Hi Mike - cheers - hopefully a step in a better direction. This site has been great even in the short time I've had a squiz.

Very day at a time for my partner. It's hard to comprehend what it must be like for my wife to say "my last OK day was Tuesday of the week before last" - makes me wonder how people deal with it on an emotional and mental level. I can see it really gets my wife down.

This site has been good for me to ground myself and reduce my self centredness around my wife's illness, Because she puts on a brave face and forces herself to function and not complain - I easily underestimate how she's travelling.

Looks like you have been dealt with FM pretty seriously too

 

[elawhon]

Hi Elawhon - thank you for your reply. I'm glad you did expand as your observations about your husband - unfortunately I have done the same with my wife which is a significant motivation for me wanting to learn more. Your work around the house and looking after the family is like my partner.
I find that moments where I become "cringe-worthy" with my wife are significantly when I lack ACCEPTANCE.
My heritage is of past generations who have little tolerance for tiredness, ill physical, mental or emotional health - in their eyes you just shook yourself off and kept going. Gladly I want to break that cycle, I cannot deny my wife's condition and am more forgiving of my family and friends who still wonder if she is manifesting the situation. I suggest they are welcome to come stay for a week and see if their compassion and helplessness doesn't replace their ill-informed condemnations.
During my wife's journey of diagnosis we've had mention of caeliac, gluten intolerance, MS, chronic fatique and many more until one Doctor finally put her on this track.
It's saddening to see such an ordinary and painful quality of life as it looks like FM is progressive. Sadly I have too often thought I know what her causes are - such as diet (gluten and sugars and smoking) so when I saw her have these on a less frequent occasion - I would imply that she is directly responsible for aggrevating her condition. Her condition is there irrespective so I now see I need to REALLY work on stopping the BLAME game and doing what my heart knows best - to become a more understanding and supportive and especially accepting partner.
Although I have found a few partners locally of FM and we've been amazed at the benefits to share our learning together - I know I will never understand what it's really like for you. Thank you for your reply and I hope you find many insights to help all round for you here.
For what it's worth - if ever your Hubby wants to to have a yarn with someone to help normalise and identify his situation, I'd be happy to be available. The same was a tremendous help for me to open my eyes and heart and move through some shame I felt to be more empathetic.
Cheers Quentin

Fortunately, you are much further along in the journey than my husband. He continues to point blame and his thinking is by doing so, I will step up to the plate and change. Well, I am sorry, as much as I would love to, I have no power over this condition. You seem to be far beyond this point and trying to move forward. Not being able to have acceptance would mean risking your marriage and you see that. My husband is unyielding and has always been. I have always been the peace keeper and choose to do the compromising when things are a challenge for us, and in this case he believes that as soon as I conform to his way of thinking (i.e. "You just need to get out for some fresh air and exercise...you will feel better then") that we can move on and our marriage will be okay. It doesn't quite work like that with a chronic, incurable illness). He hasn't quite gotten that it is a joint effort that takes the two of us working together to succeed. I believe that I tell you all this to give you and your wife hope. You are in the correct frame of mind to make this work for both of you. You understand that you have to be the one to step up for now.