Lets all smile:) What are the 'best' things about EM?

They say laughter is the best medicine :)

We found this satirical caption quite amusing. Amidst our pain and tears ,its certainly good to be able to laugh and smile once in a while. Laughter also boosts our endorphins. Beta-endorphins are neuropeptides are involved in pain management, possessing morphine like effects. So, this caption got the mod team thinking what the 9 best things about EM might be.

What do you consider the 'best ' things about EM?

A lot of similar features with FMS and EM, SLE Lupus!
I can identify with most of them, especially not making my bed… It does make the days that would be ho hum normal for regular people, more like Christmas! My problem, I try to play catch up, like clean and do my pile of dishes, then even get some projects done, which makes me crash even harder… But it is usually worth it, in the long run.
I remember going to my second visit to my doctor, trying to find out the cause of my severe brain fog, I got lost, and had to call the office for directions, the receptionist was very rude, saying “you have been here before!” When I got in the office she told the person ahead of me that “people coming late, causes everyone to have late appointments”. So I heatedly explained that I was having a medical condition and that previously when I had come into the office, I had to wait an hour to see the doctor… Whe I went in for my exam, my doctor said “and how is your moods?”, looking back that was a pretty funny situation…

Saving money - not having to spend a fortune on fabulous shoes because I just cant wear them. I live barefoot and at the most in flipflops

Friendship - I think the best thing is having met so many amazing inspirational people, and having made some wonderful lifelong friendships. I never would have met these folk had I not had EM.

Social isolation - made me a real super tech computer savvy geek. You name it I can do it lol!

Saying no- no more worry about how to decline invitations and offend people. I got the perfect excuse. Hmmm, also I just dont get invited anymore :)

Reduced gas bills- I never have to put heating on

My wife not complaining at night anymore about my cold feet…

Allowing me to say to friends while departing from them , “sorrry I have to hotfoot it outa here!”

It’s my #1 excuse for not going somewhere I don’t want to :slight_smile:

Love the cold feet not upsetting the wife John :) Thats a gem lol!

John H Abeles said:

My wife not complaining at night anymore about my cold feet...

Allowing me to say to friends while departing from them , "sorrry I have to hotfoot it outa here!"

I'm sorry,I don't find this the least bit funny. I had to log on to see what could possibly be the best things about having this condition. I knew it was going to be something satirical since we who suffer, can't possibly find one positive thing. I love to laugh and I agree the benefits of a good laugh are invaluable. This list, not so much. For me, it is offensive, insulting and inappropriate. Is it really funny to not leave the house, not get dressed, not seeing people? The last item on the list, a very poor punch line to a joke regarding dementia or Alzheimer's has no place here. I appreciate the attempt to bring humor to this condition. However, this missed the mark entirely. If there could be an Unlike button, I wonder how many would agree, there is no humor to be found on this list.

Well,,,,, there seems to be more replies for the joy of it rather than for the agony of it. Yes I do believe that laughter is important as it releases those positive hormones, but since the possibility of myself having this awful condition I am with Shih tzu Mum - to a degree. It is not funny not being able to leave the house or wear shoes, or to not dress appropriately in case some one comes to the door. To have to stop socializing or dance or walk to a neighbour's house for a coffee. Simple pleasures that the majority of people take for granted have just fallen by the wayside for the whole of this past summer. (There are some of course dealing with a much longer time span) My zest for life is gone. Heat and humidity are my enemy and I have no defense against them. BUT I have enjoyed two days of bliss, as it rained and it was somewhat cooler so I ventured out today to pick up my mail - what a mistake as I shall pay for it!!!!! Summer has not left SE Qld even though it is now officially Autumn and I do not laugh when I can barely walk, even barefooted, or sleep because of the burning pain. This is not living and not funny and no, I do not find any humour in it.

As someone totally riddled and disabled with EM. I realise I spent many years bitter and angry at my loss. Like Hotmary I lost all zest for life. But we can stop ourselves from becoming victims and avoid losing what life can still hold for us . My wonderful friends on this community taught me that and im eternally grateful to them. There are many simple pleasures and things to be grateful for. Laughter is one of those pleasures. No one finds EM funny- least of all myself , but that doesnt mean we cannot try to smile through the rain. .My breastcancer patients find this satirical look at their disease highly cathartic, as do many chronic pain sufferers. In fact , the ability to laugh and find humour in difficult situations can be so empowering.

God bless

BTW we will be starting a mindfulness feature soon , which may be of interest to everyone.

I can understand how some people here may not be able to see the humor in this thread. I too couldn't see ANY humor in this or anything else for the first few years living with this awful condition. After loosing almost everything I had because of this except my husband it was hard to find joy or laughter in anything especially what this does to you.

I lost my dream job as a flight attendant , my friends , the ability to visit my family because they ALL live out of state and I can't travel , My life long passions of Skydiving , exercise , travel and shoes! It can be a hard pill to swallow let alone laugh at. I am grateful to have moved past that and now not only do I see the humor here and appreciate it I think it has helped me deal with this a little better when I can laugh at some of my problems at times. I want to thank those of you that have shared how you too find some humor through this. Weather at laughing because I happen to be wearing black and white and my feet are so swollen my husband makes fun of me for looking like a penguin because of my waddle or Calling my green painted toenails my Christmas feet because of the red and green color they end up being.

I have even found a new passion that makes life easier to laugh at and enjoy. I know it sounds crazy but I have started making cakes! I know cooking and EM? So far it has been cold enough because of winter and in summer I just have to do the baking in the middle of the night but that is the easy part taking just 5 minutes in my mixer and a half hour or so of having my oven on. The real fun for me is the decorating. It takes a few weeks to a month to complete one that takes most a day or two but I can do it and that is all that counts!!! A few minutes at a time a few times a day and eventually a cake is made and the accomplishment brings me such joy I didn't know I could have again. I have it set up that 99 percent of what it takes I can do from my recliner in my 58 degree home. I am putting the link to a few photos here just to share what can still be done and maybe making cakes isn't for you but I hope it motivates some here to not give up on finding things that make you smile and laugh in any situation.

I hope everyone here can find so me joy , laughter and some sense of pride among all of this suffering.

http://www.livingwitherythromelalgia.org/photo/my-first-cake?context=user

http://www.livingwitherythromelalgia.org/photo/my-second-cake-for-husbands-birthday?context=user

http://www.livingwitherythromelalgia.org/photo/taco-cake-3d-cake-ever?context=user

http://www.livingwitherythromelalgia.org/photo/watermelon-cupcakes?context=user

106-20150111_154726.jpg (3.19 MB)

I save money on shoes!! I wear the same worn-in pair every day hahaha. No $500 Pradas for me

P.S. OMFG those cakes are NUTS. Pretty sure you belong on Ace of Cakes (If that show was still on tho :/ )

Thank you larson_kelseym. I am so glad I have found something new that I enjoy that I can actually do!

I was speaking with a friend and we were discussing how that without my getting EM I would of never discovered I could do this. Of course it goes without saying I would trade no EM for my discovery that I could make cakes but as long as I can't change my situation I am still finding things I enjoy and am grateful for.

Thank you again.

Those cakes are soooooo amazing ! I want one too :). We should call you 'Alina el artista' from now on x

Haha I so needed this tonight!! -save money on shoes, makeup (rarely go out!) no more fancy heels here! Realized yesterday when I went out clothes shopping for the first time in months, and it happened to be disgustingly hot out, that shopping is a thing of the past now! Even with sandals, and walking for about 20 mins, I was pretty freaked when I was trying on shorts and looked at my lobster red feet in the mirror! Thank god we live in this day and age where we can buy everything online! :slight_smile:
No need to spend money on tanning salons anymore! I used to be a tanaholic with such a gorgeous tan but I def rock my Antarctic glow these days! Oh and not to mention I have been so fortunate to get some help with a cleaning lady once a week or so :))))

EM def has its crappy times where I’d love to have my feet and hands amputated lol, but then there are those other times I thank god it’s not something worse and that I get to save all the money I was spending on random stuff!

I always say.. if i were on the titanic, i could have saved hundreds just by being in the water with them...

i don't need seasonal clothing.. shorts, thin shirt, flip flops.. i'm good... snow.. no problem..

I don't have EM but my son does.

I think a positive thing about EM is that it is making my son a sensitive, caring little boy. He is so in tune with how others feel because he himself feels such pain everyday. When someone is in pain or sick he takes care of them as much as he can (he's 5) and he can sit and talk to someone like an adult about pain and suffering. He has an outlook on life that is unique. He doesn't take things for granted and in return I take more pleasure and pride in things he can do than I would have had he been born without EM.

When he's able to run and play tag with his brother we are amazed almost to tears now that he's on medication. Everytime we watch him attempt something he has difficulty with we tear up because of how strong he is and how proud we are.

I understand how some people don't want to look for the positive in EM but I think it does really help. EM is a part of who my son is and it makes him exactly who he is so for me, I need to look for the positive. And I hope that someday you can see some positive in it as well.