I second that emotion, mads.
Mads, couldn't get this out of my head and I want to write again and say, that I don't think you or anybody need to apologize if a mentioning of religion is made here that may help/comfort another person. That is why we write here - looking for help and comfort and if sometimes it is in the form of a religious comment then so be it. I am not religious at all but that is not a reason to feel offended because somebody else who believes finds solace in a few religious words.
Thank you Stacey.
It helps greatly to hear from a care giver. I try to encourage him to do things he enjoys but he just says he would rather be with me. Do you have any tips on how to break that barrier? I had to leave home for a while because of a family emergency so he is left at home alone at this time. Maybe he will take advantage now and once he gets the taste of normalcy I hope he will continue to do things for himself when I return.
Take care,
Alina
stacey said:
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.
I agree Mads.
I have not been on for a day or two thanks to some issues here but upon trying to catch up It sounds as if everything that could be said has been said and I hope we can just move on and continue as we were before helping each other as best we can. Please don't leave Mads. You are much needed here. I am so sorry for the pain this has caused you. I am sorry for the pain this has caused many people. I think we all have enough pain in our lives we don't need to add any more to the mix.
As you said Mads...we are all adults here. I think we can just put this to rest. Nobody has to win . This isn't a game. let's just brush ourselves off and move on as we do every day.
Take care,
Alina
mads said:
Hi Guys,
I am finding the drama surrounding my Godly comment rather too much to contend . In fact I am considering leaving the site. This is extremely sad as i have found great solace and support the past year and made some very wonderful friends. I dont get what was so offensive nor how 5 words can cause such trauma or flares???????????????????????????.
I dont share the opinion nor agree with many many posts i read, but consider whatever a member writes - is helping them, in that instant ,cope with this wicked syndrome . Are people that well that they are so able to make a song and dance or nit pick about a snippet reference to Christ?
I find people snipping or instructing frightened , suffering Em'ers to go do some 'miracle cure' - giving false hope , far more offensive and extremely disconcerting. Also- the so called offended are amazingly part of my so called friend network (hmmmm- why not just message me - we are friends right?), and happy to receive the copious research and information i willingly and proactively share. Sorry guys but I really do not like backstabbing. We are all adults on here .We are all unwell and looking for whatever support we can find. Maybe i should forgo the moderating and just share what i want /when I want ie: observing staunch impartiality will not prove an issue.
Notably, according to the rules/regulations of site - there has actually been no breach. Political content is stipulated but not religious.
Most of you know me well and know that I do my utmost to offer support, compassion and share EM knowledge .
I found it very hard to apologise for having 'Godly' faith but I put my ego aside. Some members are making me feel as if I have committed a criminal offence. I have been in tears the last few days. I really do not need this.
I think i have been gracious enough . Could we please put this subject to rest.
Wishing you all a 'comfortable' night
God bless
mads
Mads, I am taken aback by your reaction - the few posts here regarding the issue have been nothing but polite, and as far as I can tell, nobody wants you to leave (and that's coming from an atheist, lol). Your reaction only proves that it is an issue - look how upsetting it can be!
Please appreciate that I am NOT posting what I really think about religion specifically because I know it would be contentious or offensive to some - all I was saying is that I wish all posters would use that discretion (no matter what their religion, or lack thereof) so that we're all comfortable and no one feels excluded. Simple, all-inclusive message.
Please don't leave because of this little hiccup. We're all in this together.
I just saw this thread so late responding, but I have been feeling the same burden. My EM is not as advanced as others have described so I'm still working and still mobile. I have bad days, but they are not completely unbearable. I flare mostly at night and more in my hands than I do my feet. I also flare in my face and ears.
The additional burden that I have is that my husband of 16 years has RA (rheumatoid arthritis) and suffers greatly from it. So I try never to complain about my flares. He's finally started exercising at the local gym (been after him to do that for a decade!) and wants me to go with him. Unfortunately, working out always brings on a flare... even swimming because the textured bottom of the pool hurts my feet. So I'm caught between wanting him to get what he needs and preventing any suffering on my part.
I know he would understand because he suffers himself, but I have always been the strong one in the family and I'm afraid if I complain or "wimp out", it will derail him on his journey (he is susceptible to bouts of depression, which I am always on guard against).
So, in summary, I have no suggestions, just thought I'd let you know that I share your dilemma and you are not alone in your thoughts.
B
Thank you kruizerchick.
You are amazing! Going through this while helping your husband. I wish I had words that could help you too.
I do have a suggestion though about the gym. Have you tried water shoes in the pool? Swimming is the only exercise I can do and the bottom of the pool hurts my feet too.
I use water shoes and that helps with the feet problem. Wouldn’t that be lovely to be able to do something with your husband! Not to mention something good for both of you!
Now if only I could get my husband to like swimming! The only thing I can do and he Hates it!
Take care
Alina
I think i come's down to being similar to survivor's guilt......Living with guilt does not allow you be be functional. Don't get me wrong I feel the same way you do all the time. My wonderful boyfriend work's hard for me and my kid's. I have learned to have everyone help out like a team and then the work load is not on one person. It also come's down to learning to except what is. Nothing anyone can say will make it magically better and we need to except the help we get because our loved one's wouldn't give it if they didn't want to. And i always remember what my 12 yr old son say's to me....Mom you have to fight through the pain! So I am learning to fight through the pain.....it means getting up and doing what I can and living my life regardless of the pain. Most humans suffer from something everyday, it is a part of life unfortunately. We can't let any of it keep us down, we have a right to live! So fight for it any way you can but do so in a positive manner! And if you want to know how your husband feels ask him!
Mads, there is nothing wrong with religious quotes or comments. You in not way tried to push religious on anyone and are only expression yourself. For those giving you a hard time they need to remember we are not here to argue over religious. We are here because we need support and advice from people who are like us. Religious or not you are one of us and this group is for support. I am not religious at all but will not exclude someone based on there religion. EM is hard enough to deal with without negativity.
A compromise would be to start a new discussion just for empowering(including religious(quotes). That way everyone is happy. I may not be religious but bless you Mads. Optimism is a wonderful quality.
I apologize for my spelling and odd grammer in my last post. I am studying for an exam and my attention is split.
The writer, Kurt vonnegurt, once asked his son, the doctor, what he thought we are all here for. His son answered that he that he thought that
we are all here to help each other get through this thing called Life.
I'm paraphrasing because I can't remember the exact wording. But I think it's good to remember that we do give as well as receive and that what we give should not be undervalued by ourselves or others. When I forget this, I feel miserable. When I remember to remember I can reflect on the good things I do for people. Chances are that if we are thinking of other people we are doing good things for them. Our thoughts reflect our actions and visa versa.
learning to use my tablet folks, so please excuse any mistakes. It's so much cooler than my warm laptop.
Blue
Thank you Blue. Just beautiful. I do more for others than I realize and I want to thank you for reminding me of that.
I can't do much so it feels like I am not doing for others but even through kind words and encouragement I am doing for others. AS you said through thought ( I myself pray) I am doing for others. I guess I am more useful than I gave myself credit for! Thank you Blue!
Hi Alina,
I'm glad it made some sense to you. Thinking it out helped me make some sense of it too.
blue