Your Spouse, Children,Family and Your Lymphedema

Your Spouse, Children, Family and Your Lymphedema

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An often overlooked complication in the lymphedema patients day to day struggle is the response and support received from our families and/or spouses. As foor for thought, I wanted to share some of them here.
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Lymphedema isn't some inconvenient disability that you can ignore and hope it goes away. If effects the patient, their family, spouses.
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Because it is a life long condition that requires life long care, it is a struggle, often a very difficult struggle, moetionally and physically. It is also a progressive condition that continues to slowly but surely rob you of you ability fo do things and be active. In the later stages it is also terribly painful with some of us living with twenty-four hour a day pain.
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So it does effect all our relationships, our spouses, children, family.

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Original Post in thread February 23, 2007

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How does everyone get their spouse to understand lymphedema? I have it in both legs, feet, left than right....and I cannot do much of the house work....and he gets very angry at me...and says I need to try harder....he goes to the store for me...but I think its only because if he didnt, he wouldnt eat.

How does everyone else cope with this problem of getting work done re: house...etc.??? Sorry to whine but I am at my wits end on this matter...I guess he thinks I make this up....but anyone who is cursed with this disease knows....you cant "make up" something like this....can anyone enlighten me...or maybe...just talk to me?? Sorry to whine.....

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Response #1 February 23, 2007

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Speaking for myself, I doubt that too many spouses or family really get it! It is easier to just "ignore" the problem. I have had lymphedema in my legs and feet for over 20 years with chronic cellulitis infections which are hard to deal with. Actually I have a very loving family but they still don't understand the limitations of this condition. I just do the best I can and nobody complains.

If the medical profession doesn't "get it" how can we expect anyone else to understand. Your family can't see the pain you are in. All they see is the swelling. The next time your husband is feeling under the weather don't be too sympathetic Women are the nurturers and for the most part are more compassionate. Try not to get too upset over this problem, you are not alone.

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Response #2 February 25, 2007

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Hey xxx and xxx,

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Yes, it is very difficult for others to understand our illness, just like it is hard for us to understand at the begining and it our daily management of LE. My spouse also did not understand it at first and he was in the service-so their mentality is just do it, no matter how you are feeling. I started educating him on the condition and what it would mean for our future. It took awhile for it all to sink in before he finally got it that some days there is no "just do it" for me. It also helped that I got him to also speak to another husband who's wife had been diagnosised years before I was, so he could talk to him about things he didn't want to share with me. Please remember that this illness not only affects us but also affects our families future lives as well, so it will take them time to adjust as it did for us.

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I have LE all over and i do the housework I can, when I can. This is something I do for me, because it gets me up and moving around the house. If I try to stay in a recliner all day, I noticed I had no energy and dozed on and off all day. I try to do little things throughout the day if I'm able, which could include emptying the diswasher, picking up around the family room, cleaning mirrors, dusting, cleaning bathroom sinks, washing clothes, and anything else I'm up to in the day. Of course I spread out the things I can do during the week, so I'm not trying to clean the house all in one day. I also make dinner, when able and we have lots of things that heat up in no time if I'm not feeling up to making dinner. I am very diligent in my LE management and it helps so that my body can do housecleaning here and there. About a year ago I was very depressed about my LE and just did not feel I was capable of doing little things around the house, but once I received treatment and came out of my depression(still on meds and seeing a therapist about once a month) I have more energy to do some light housekeeping. My husband and son pick up the heaver housecleaning chores. Hope this helps.

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Response #3 February 25, 2007

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I to have had to deal with a husband who at first had a hard time with my as we call them bad days. He now has had many strokes. We take care of each other. Most of my family has no understanding of what is happening to me. They don't want to hear about it. I now claim all of you as my family. I am glad I can vent here. And I can get good advice. I to have limp in both legs and feet and my stomach. I don't have insurance and we live on a limited income so I get no help except what I can do for myself. I also have a infection doc. who keeps me on meds. I love to go places. But now I can only do a few things. I will continue to do what ever I can. I went to the fair last year because they had electric wheelchairs. It was great to be free to go most everywhere. My son said you go mom. They could not keep up with me. and they got tired first. I love my husband and he is really a special man. But like me he had to have time to learn to live with the new me.

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Response #4 February 26, 2007

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Hi Everyone

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I think each of us have walked this path.

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Again I say we have a hard time understanding this condition, one day your feeling ok and suddenly wiping your nose takes every ounce of energy How do you explain fatigue to someone that doesnt have it?

How do you explain legs that you put more effort into moving that most would to run a marathon? or a hand that picking a paper up causes so much pain?

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How do you explain that a stroking of our limbs wrapping and wearing supports needs to be done every day and that it can make such a huge difference.

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How do you explain sitting with your feet up and dinner isnt on when they come home from a days hard graft?

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I think a lot of it is down to our own feelings of guilt for being ill. We have nothing to be guilty about but how many times do you carry on struggling with pain and doing things you know are bad for our condition.

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How many times is it easier to battle thru the pain barrier and tiredens and weeping limbs than go thru the explinations. So many times i read in letters of people working till they are ill because there is no option working with weeping edema and cellulitus when we know the best thing for them is rest and keeping off the limbs.

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Until this condition is recognised around the world as a cronic debilitating condition we will go on dealing with the same problem.

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WHY DON'T PEOPLE UNDERSTAND? I think a lot of it is down to the stubborness off most people with a cronic condition if we give in to it it wins so our loved ones see us day after day gritting out teeth and getting on with it when we finally have to say i cant do it anymore then they look at us and think why not you do it most days lymphedema is a condition that calls for sheer determination and stubborness to live each day maybe that determination and stuborness gives our loved ones the impression that were tough and we cope with anything.

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I have to admit i many times have said, "leave me i can do it."

Stubborn and independant something that seems a nessessity for anyone with a cronic debilitating condition.

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Hugssssssssssss you wonderful people

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Response #5 February 26, 2007

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Thank you.....all of you who responded or just read my story. I appreciate all your help.....it means so much to have a place where you can read other postings...get an idea of how others cope..or just plain talk to others....who live the same debilitating life.......sometimes pain meds help a lot and other times....nothing...helps but getting off your limbs for a long time.....thanks and God bless all of you. It makes me feel like I have a great big family, which is very comforting to me. I lost my dear Mother in May of 2006 and miss her very much. I think stress adds to the overall problem also....JMO. Thanks again...maybe one day....everyone will begin to understand this disease, especially our loved ones.