I just thought this would be a good discussion and something that I haven't seen discussed while it is something we all have to deal with. I myself find it a blancing act. I don't want to be a burden on my loved ones but I still need help with my daily needs. I try not to complain too much but sometimes you just have to let it out.
I know I shouldn't feel guilty because obviously having EM is not a choice but sometimes still do.
My husband that works so much overtime trying to compensate for my being unable to work. He then has so much more responsibility around the house doing the things I can't do. He doesn't go out and do all of the things I can't. It's almost as if he has it too!
I try to keep my chin up and I often try to minimize my pain because I know how much it hurts him to see me this way. Then I have days where I just let it get to me and I can't hide my suffering. I try to balance these. It would be unfair to me to never express what I am going through and my loved ones do need to see it every now and then so they can better understand what I am going trough. On the other hand I don't want to be JUST the sick one always moaning and groaning.
My husband gets on me if I don't ask for help and end up in a terrible flare but I also can't ask him to do everything for fear of hurting more. I feel if I ask too much some day he will finally get tired of it and possibly be resentful. I have the most loving husband in the world so that is hard to imagine but he is still human.
I find it to be quite the balancing act taking care of myself and those I love.
How do you handle how much you burden your loved ones?
If you are a caregiver of someone with EM I would be very interested in hearing how you feel and what you honestly think.
My husband would never tell me sometimes he wish he didn't have t deal with my being ill but I wish I knew what he truly felt so I could try my best to do what I can to make his life as good as it can be being married to someone with EM
Thank you ,
Hi Alina, I see that 9 people have looked at your post but nobody answered. I cannot respond to your concern and questions because I live alone and my nearest relatives live 5000 miles away. But I do understand what you are dealing with, what your mind is struggling with. and just wanted to let you know. Maybe you can answer all your questions if you asked yourself how YOU would feel and what YOU would do if the situation was reversed. Good Luck
Thank you so much Domina for your response.
It is so kind of you to answer. I know this isn’t an easy question to answer and obviously you are a strong person as I see you are on your own! I know it wasn’t your intention and you had only kindness in your reply but now I feel like a jerk. Stating this is something we all have to deal with. I am sorry if I was inconsiderate. I am forever grateful to have this issue and beforehand never considered the possibility of anyone being in your situation. God bless you.
I like your advise yet it’s difficult to do but I will try.
It’s easy to think how you should feel if you were in their shoes. I don’t know why it’s so hard to truly be honest with yourself and really try to understand how you would feel.
I know I wouldn’t feel resentments but I do think I might get frustrated a bit more than my husband seems to get.
I am so lucky to have him. He is a kind ,thoughtful,and gental person. I couldn’t be in any better hands. All the more reason I worry sometimes about bringing him as much happiness as he does me. Thank you again. You are so kind. Take care,
I have really had to think about this one and realise how lucky I am not to have begun with this illness until my late 60s. I am now 72 with no husband around and live with my daughter who also has EM. I am ‘burdened’ rather with a degree of guilt and the knowledge that if I complain about the worst of my struggle with EM, my daughter, 32 years younger, knows that she is already on that path. I try to keep the moaning low to my other offspring because they have enough to worry about without adding my difficulties to the mix. As for the wider family and friends, they look utterly bewildered by EM rather than sympathetic and who can blame them! I keep quiet about EM and make excuses not to be sociable and they probably think I am just growing old and crotchety.
I saw a lovely quote in the paper this weekend, supposedly Chinese words of wisdom: “Write your
pain in sand and carve your joy in stone”. It doesn’t answer any of our dilemmas Alina but it is a lovely exhortation.
Wow Nel that was beautiful.
I will have to keep that with me.
Our situation is very similar though it may not look it off hand. We are both just trying to protect and make our loved ones happy wether it be a spouse or a child or parent or any one in our lives we love.
I am so sorry your daughter has this too. It must be difficult to say the least knowing what your daughter has to go through and trying your best to protect her from the worst of it for as long as you can. Thank you Nel
Ohhh I SWEAR I just got teary eyed reading this as you described my life COMPLETELY. I’m 39 and my EM came out around 10 years ago. I have been married for 15 years and my husband has been steadily doing more and more for my daily needs over the years.
I go through waves of being so frustrated that I can’t even cut up my brussel sprouts for dinner, or change the sheets on my bed without triggering a big flare.
We have a dog that I cannot tolerate petting for too long, and can’t throw her ball either without getting a flare. My husband comes home from work and then starts the ‘job’ that is me! He does the laundry, grocery shopping, bills, etc. etc. eeks!
All of those teeny tiny things that my husband does for me truly consume his day, while I am at home unable to work (just like you).
I carry a lot of guilt inside over how much I feel that my EM has robbed from him and from us. And he has moments of being very frustrated by not being able to travel as often as he would like to see his family (since he does so much for me). It’s a delicate balance for sure.
All I can offer is that you consciously grant each other a lot of grace. Know that those EM flares might rob your day and fill it with fire pain, but your heart and love for your caregiver won’t change.
Even if it’s only a Siri text message to my husband to tell him how much I appreciate him, he seems to smile as a result. That makes this battle worth it : ).
I wish you luck in this journey!
Thank you so much Pesto.
I know I couldn’t write this post without having a few tears myself.
That is such good advice and I do make sure to tell him how much I appreciate all he does and I make sure to tell him how much I love him. Usually you express these things through both words and actions and it seems all I have are words. I know even people in good health forget to make such an effort with their loved ones. I am so happy you have such a loving husband to help you through this journey.
Thank you everyone. Not only for the words of wisdom but sometimes it just helps knowing you are not alone in the struggles you have in your mind. It’s easy to see the physical pain involved in this but there is so much more.
Alina, something else came to my mind reading the posts here - if you cannot travel with your husband it may be worth considering that he takes *time out* once or twice a year. Hopefully you could cope by yourself or somebody can come and be of help to you. It may be good for both of you and if you do, it should be without any feelings of guilt.
The great news is I finally got him to agree to go to see his family in June!
His grandmother is turning 100 and I have been trying to convince him to go to her birthday get together for the past year. Finally about 2 weeks ago he agreed! I will be ok on my own for a couple of days.
I hope this outing will reassure him that it is ok to take time out for himself and maybe he will do it more often. That will not only be good for him but me as well. It will ease some of the guilt I have if I know he isn't sacrificing everything for me and is still enjoying parts of life that I am not able to.
Thank you for the thoughtful suggestion Domina.
Good discussion question and I wish I could contribute something outstanding, unfortunately I live alone with a cat who is the boss and tells me when to do things. I am pretty much homebound and have to fend for myself. I use a walker as my feet burn constantly. The only relief I have is when I sit with them elevated or go to bed. It is even difficult to prepare my meals so I have to depend on those frozen things that have excessive amounts of sodium. I lean more toward the fresh that I can microwave or eat raw. I can't walk for very long periods so unless I use the electric go cart at the super market this task is very hard on me. I do not like to ask for help unless I am going to a doctor or something. Even then I try to give my driver a lunch out or money for their gasoline. I am taking Gabapentin for my pain and I have had two sets of spinal injections for my low back and foot pain. It helps for a few days then the redness and pain return. I don't like complaining about my condition so I journal about my grief. This seems to help. Perhaps this is something you might like to try. This condition is very depressing and really limits your ability to do much. I focus on TV to keep my mind free from the thoughts of pain. I hope you hear from others with more positive results. Blessings, Myself
Thank you Myself. I am sorry you are having to get by on your own. I am glad you have your bossy cat. I have two and they really do offer up a lot of love even if they are too hot to snuggle with for too long!
The journal is a brilliant idea. I keep a pain/photo diary for doctor purposes but that's just technical stuff not how I feel.
I know I have brought up a subject that is hard for many and I apologize to all I have inadvertently forced to deal with things they may be trying not to think of. The journal idea will help me get these things out that maybe should be kept more to myself as to not make others have to deal with something they are not ready or willing to do. These were not my intentions.
I am glad you get a few days here and there with some relief though I wish it were more.
Alina, I am glad your husband decided to visit his grandmother and his trip could be good for you, too. You can relax in a way that I think you are not doing now. If you have a bad time while he is gone and you feel like having a *Pity-Party* you can do it - you can cry and scream and let all your pain and frustration out - you don't have to restrain yourself and pretend that everything is o.k. And when the tears have dried you'll feel better.
Thank you Domina.
You have a good point! A good pity party every now and then is a good thing. It may not feel that great at the time but you really do feel better after. Thank you for your support and encouragement. I really appreciate it.
I too have shared your guilt- burden feelings and it is with sorrow that I read your heartfelt discussions. This is a wonderful share Alina - Thank you. For such a prevalent issue in our lives it is rarely discussed .
I just wish to start by saying that being a burden is not a shameful or guilt ridden state but the honest reality of all of our lives. A wonderful lady recently told me i needed the humility to accept help when I was incapable, and love from those who genuinely cared for me. They are willing to sacrifice their own lives for others.. This is not to demand that others respond to our orders, but to graciously accept what is given in love. That is the way to look at the situation we must have the humility to accept what is given in love. How terribly beautiful that is. How terribly lucky we are.
Sort of helped me see it from another perspective!
Thank you Mads.
well said. I know through all of this I am blessed. It defiantly helps to view this from another perspective.
Thank you for reminding me. Thank you for the scripture mads. I will have to turn to that if I find myself feeling this way again and I probably will but now a have a place to turn to put things back into perspective.
I am one of those folks who does not appreciate religious content, so I thought it might be helpful for me to chime in since the issue has been breached.
Maybe this website isn't the right place to post that kind of stuff, since, while comforting for some, it is stressing/offensive for others (and stress can cause flares, sadly). I didn't comment on it before since some people are very defensive about faith, but I just wanted to say that your thoughtful apology is much appreciated by those of us on the other side of the topic, and perhaps religious postings belong on a religion forum in the future. Thank you for being so understanding about it!
Alina and Libby have summed it up perfectly: there will always be different opinions on this issue. We have found in the past that politics and religion alike can create conflict and divisions on our communities.
Libby's suggestion about forming a group is a great one. We have prayer request groups on many networks, and they are quite popular. I will form one here, so there is a place people can go if they wish to give or receive prayers. Thank you, all!
Or alternatively there is a lovely group called Affirmations and Quotes.
I am a mother of a child with EM. Newly diagnosed. I find that balance act difficult too in knowing how much sympathy and support to offer vs how much teaching him ways to cope and continue through each day. As a caregiver I find myself juggling the frustration of there always and so unpredictably being “on” and well enough myself to give to others and the joy of bring a loving giving parent. I can only advise for caregivers to find those small spaces they can to care for themselves as well. If your husband has a favorite hobby, sport, exercise he isn’t getting to do as frequently as he would if all the complications of supporting EM have brought it might help to encourage him to take as good of care of himself as it sounds like he is of you. Sometimes helpers need help remembering that. Good luck! It sounds like you have a wonderfully loving family.
Mads, I hear you loud and clear - but please don't leave us . .