How do you get your spouse to understand...

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How do you get your spouse to understand...

Postby LadyDi » Fri Feb 23, 2007 1:03 pm

:oops: 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 cant "make up" something like this....can anyone enlighten me...or maybe...just talk to me?? Sorry to whine..... :cry:
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Postby joanne johnson » Fri Feb 23, 2007 1:24 pm

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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Postby gottahavesun » Sun Feb 25, 2007 1:52 pm

Hey Lady and Joanne,
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.

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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Time to heal and axcept

Postby Cindy » Sun Feb 25, 2007 11:36 pm

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. :lol: 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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Postby silkie » Mon Feb 26, 2007 2:08 am

Hi Everyone

I think each of us have walked this path

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?

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

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

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

Hiow 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

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


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

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

Hugssssssssssss you wonderful people

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Postby LadyDi » Mon Feb 26, 2007 5:47 am

Thank you.....all of you who responded or just read my story. I appreciate all your 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.
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Postby PamelaS » Tue May 01, 2007 5:45 pm

I think sometimes that it is hard for our families to really understand what goes on with us and our lymphedema. I have certain limitations on me due to my arm lymphedema - I cannot carry things the way I once did and there are some dexterity issues as well with this hand.

My husband was very supportive of me as a cancer survivor - but cancer is very clear cut and defined - there is a definite beginning and end - with LE there is no such thing. He really trys to understand but there is not a lot of info. about there.

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Postby silkie » Fri May 04, 2007 2:40 am

Hi Pamela

My family I think like many others had difficulty understanding
my lymph I had lived with it so long without diagnosis suddenly in 2002
my big legs developed into elephantitus it became very visible
and for the first time both the family and my doctors realised that what i had been trying to get help with for a long time actually was a serious problem

When i finally got it under control again they thought not visible except as huge legs it had gone away. It took a long time for them to understand
the problems lymph caused but then it took me a long time to learn how to live daily with it to i wanted to be able to do those little things like carry
shopping and play soccer with my grandchildren and just walk my hills like i had done before.
Understanding takes time living with the limitations aside from the effects physically is so frustrating .
Mostly i think it has taught me patience with my family and myself
and determination to live my life as fully as i can with this condition
and not to get upset or angry when my family dont seem to have a clue how i am feeling or struggling I still get frustrated and i am actually dealing with it each day so it must be doubly difficult to understand when you dont experience the pain and fatigue, the limitations that drive you mad.
I do think living with lymph has helped me deal with a new health problem i have and to fight it.

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Postby Lefty » Fri May 11, 2007 12:02 pm

Testing my post to see if my user name shows. This forum is a God send.
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Postby silkie » Fri May 11, 2007 3:08 pm

Hi Lefty
your coming thru loud and clear
looking forward to hearing from you and your right this is a brilliant place wonderful people and the help is the best


Silks xxxxxxxxxx
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Postby Lefty » Sun May 13, 2007 12:44 am

Thank you Silkie. I am so thankful that I wondered into this forum and discovered that there are people like me. I knew something was not quite right with my body since I recently have been experiencing extreme fatigue and finding myself drifting in the middle of a conversation with someone. I was even told by my a former employer that someone saw me sleeping while I was suppose to be observing a court hearing; I obviously did not recall the incident. As I am learning, I am like most people with this condition, I was not diagnosed until 20 years later (not by my primary physician). There's so much emotion related to this condition that is bottled up inside that I can only release a little at a time or perhaps seek support groups that deal specifically with this condition. Again, thanks for the welcome!
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Re: How do you get your spouse to understand...

Postby OzClaire » Thu Jun 05, 2008 10:20 pm

Hi Lefty,

So glad you found the forum ... :D BUT

I've had LE for 55 years and the symptoms you describe just aren't part of it in my experience. Swellings, infections, itching, discomfort and a whole range of other physical signs yes but absenses, sleeping :!: :?: Noooooo.

What I do also have is temporal lobe epilepsy or TLE. This causes absenses. Sleeping on the job if you like .... or just staring into space, eyes open ....other people don't see it as epilepsy because there aren't any fits as they expect epileptics to have. They just see vagueness, day-dreaming or sleeping on the job. And they are not tolerant of this.

Luckily TLE is very treatable :mrgreen: Involves taking medication, in my case for the rest of my life, which tends to make one a bit sleepy initially and does slightly retard short term memory but hey that's better than the alternative.

In the vein of "getting spouse to understand", people with TLE have great trouble getting it diagnosed ... 1st because family/friends etc just think you've vague & 2nd because it's sometimes hard to find on EEGs and unfortunately TLE has a range of other symptoms that are not "family friendly" :(

  • imagining things -- smells (mine is doggy do, my son's hashish), sounds (mine some-one calling my name), hullucinations (mine were fat men morphing into thin ones as I tried to go to sleep or a fire on the wall next to me)
  • day-dreaming -- usually for only a few minutes (eyes open/closed etc)
  • tendency towards balance issues -- my son's room spins dramatically when he's trying to get to sleep, I need the car driven carefully so I don't get jerked sideways etc -- very uncomfortable.
  • emotional upsets -- TLE affects the emotional centres of the brain and therefore one can experience euphoria, anxiety, dispair, helplessness, anger etc. etc. etc. usually of relatively short duration unless it involves other people and then "normal" human interactions kick in but there is research to show a link between TLE and long term depression and/or bi-polar disorder
  • short fuse -- we seem to be quicker than other people to loose our temper ... they say lots of violent prisoner's have TLE ... drunks too
  • perhaps, only perhaps, a tendency towards drug/alcohol dependence ... more as self-medication I think than anything else
  • again perhaps hyperactivity ... "butterfly brain"

Of course, it could be that you are experiencing sleepiness etc because you are sleep deprived ... wake up at night a lot?? can't get to sleep?? All of this could contribute and would take more space than i've got here to address.

Suffice to say I think I'd be looking further if I were you :arrow: It is regrettably true :( that one condition sometimes masks others ... and doctor's are too quick to dismiss things because they don't have the time to look.

But again in the vein of "getting the spouse to understand" .... there are what are now called "hidden handicaps" ... epilepsy, sleep deprivation, anxiety .... and these are the hardest to get people to understand ... they only understand what they can feel and see .... a friend uses a walking stick when she doesn't actually need it because it helps to get people to understand the problems associated with Fibromyalgia. I don't hide the limping anymore because it helps others understand that my feet are causing pain .... i don't suppress the "Ows" anymore either

I wonder :idea: perhaps getting them to bandage up their legs for a few days :!: :?: particularly in hot, humid weather :!: :?: Let them experience it for a change :!: :!: :!: Nothing like experiential learning in my book.

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Re: How do you get your spouse to understand...

Postby Iween » Thu Jun 19, 2008 8:56 am

Hello Everyone !

I am fairly new here. I have had lower extremity secondary lymphedema for ten years which is now in the abdomen also. I am a cervical cancer survivor. I wear compression hose during the day along with a light weight girdle type garment to help hold them in place during the day. Then massage and wrap in a jovi suit @ night and sleep with my legs elevated. This really took getting use to and I fought it for years until I spent a year constantly sick with cellulitis infections. I know it is hard at times on my spouse. He misses snuggling at night because I am so "wrapped up". I have daughters who are supportive when I get ill. My husband is supportive but still at times thinks I "need more exercise". I am now 51, and always exercised prior to my diagnosis. It gets really hard at times when you can't do the things you use to. You know I have noticed it is really hard for "friends" to understand. I am not a large person, but that does not mean my legs do not hurt or feel heavy. I am limited on shopping trips when it comes to walking alot. I have days of really bad fatigue when I "over do". Yet I still push myself past my limits at times just to keep up with everyone else. I still work 40 hrs a week, but luckily at a desk job. I am so glad to be here and read your stories. It is nice to know you are not alone. .... Irene
not alone.
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Re: How do you get your spouse to understand...

Postby robert » Thu Jun 19, 2008 5:17 pm

my wife will help me one day then the next tell me she is no longer helping me i can do it myself she says.i am convinced she will never understand.her family my doctors our friends all have talk to her about lymphedema .some days she cares some days she dose not.if it were not for our daughter i would be long gone. robert
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Re: How do you get your spouse to understand...

Postby OzClaire » Thu Jun 19, 2008 7:59 pm

Hi Irene & Robert,

I'm so sorry that you are both experiencing such difficulties with your spouses :( However, at least now we have each other. :P People who live with the hidden issues day to day and who care about each other. Irene, I'm glad you have a desk job and are able to rest but I'm wondering whether you are able to put your feet up above your hips while you are sitting down?? I found with my legs that just sitting was one of the worst things I could do ... I learnt this the hard way when I was young (I'm 60 now & been living with lower leg LE since I was 5). In those days we often made our own clothes & I would sit for hours sewing a new evening dress or whatever for a special do. Bad move, my legs would swell to 3 times their "normal" size. So when I got a job that entailed sitting, walking, climbing stairs etc my legs actually improved. May not work for you but did for me.

Robert hang in there your daughter will need you in the years to come. I don't hide the difficulties ... limp if I need to ... say ough when an ankle locks and it hurts to move the foot ... get my husband to pull off the stockings when they are hurting... then just be stoic and say it will pass. They get the idea .... sometimes!!

Good thoughts coming your way :arrow: :arrow: OzClaire
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Re: How do you get your spouse to understand...

Postby Iween » Fri Jun 20, 2008 9:04 am

Thanks Claire,

Seems though I have a desk job, I am up & down alot. Alot of times when I am just on the phone I am doing leg stretches, etc. I guess if someone watched me they would think I'm a little weird always moving and rubbing on my legs! Ha....
My husband is really pretty good. I know he gets burned out with this just as I do. I am thankful I have 3 daughters who live near by. Do you wonder as you grow older how you will get those darn hose on??? I sometimes feel that I will go to my death bed just doing MLD !!! Oh well, think about today, who knows what tomorrow will bring. Beats the alternative. When I was cancer free @ 5 years I sent my oncologist a chocolate cake and a card listing all the things I was able to do & see because of her & God. Important events. Alot happens in 5 years when you write it down. Enjoy your day!!!

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