Have you guys ever pushed yourself well beyond your normal capabilities to join a family activity? Such as going to a theme park and doing your best to ignore the pain. I gotta say it’s well worth it for the fun, the day after however not so fun! Share your stories of when you’ve done the same I’d love to hear them!
I have lately just to get some stuff done around the house. It caused flares but not as bad as if they happen on thier own. I have also been walking my kids in the double stroller once per day even in the heat. Sometimes no flare untill I get home . I’m kindoff new to the EM stuff and I may have had small symptoms for a few years and just ignored them. My symptoms are worse knowing what they are . Ignoring them is a much better way to pass the time. I also am working . I work in a hospital as a radiology mri technologist. My work place is cold which maybe helps. I’m going to paint my kitchen this week. I just finished the backsplash . Sometimes wearing gloves is helpful too. It’s hard to do stuff when you don’t feel well so I have been trying to adjust. It hasn’t been easy but it feels good to get things done and just do normal people stuff. It’s been tough explaining this to family too. We may go to a mlb baseball game Friday .
I just want to say I struggle with knowing when / how much to “push” myself too. I do too much, and then I suffer the consequences and get too scared to try anything for a while … In the meantime though I know being near fam / friends + having a good support network is important for chronic illness. My PCP at one point said she’s seen it time and time again, that the people who struggle with chronic back pain say, and choose to go to family events anyway seem to fare generally better than the ones with chronic back pain and who stay more reclusive… At the time I wanted to scream at her saying this is another beast than “chronic back pain” lol but she has a point in there somewhere
I hope you are able to go to the mlb game this weekend + enjoy yourself. your kitchen looks great so far!
I’ll push myself to blisters at home working in my landscaping & flower beds but a cold soak is at the end of the hose and I can quit anytime. I would NEVER subject myself beyond my limit without knowing I had an out if/when I needed it. I’m not a masochist. Our family vacation is in TX this year in August and I wouldn’t dream of going. I wouldn’t be able to leave the air conditioned room, so what would be the point.
Yeah I have had back pain for years . This nothing like that. It was bad but never stopped me from doing anything except heavy lifting. em is a different animal .
Yes, all the time. Family holidays, grandchildren, ballgames, church, lunch with friends, etc. Everything I do seems to set fire to my feet. .I’ve lived with this for 13 years. I’m on a downer at the moment as I’ve had a painful day.I do wish you good luck with your EM. Patty
That sounds awesome! I’m glad you are able to walk your kids in a stroller and are still able to manage work. One of my big dreams is to take my dog on long walks both he and I can enjoy. I’ve always wanted to paint, my parents decided to paint the house when I was 8 and not let me help out! I hope you enjoyed the mlb if you went sorry for the late response! I had pushed myself to go to an amusement park with my family that day and well it took more out of me than I thought
I have to say even here is a great support network, parents are still working on understanding the pain but they’re getting there and I have many great online friends who help support me.
I’ll often go awhile without pushing myself and then tend to take it too far, I went to an amusement park with my family for a few hours in the late evening and am just now getting around to replying as I needed to recover physically and mentally from the pain.
I’m hoping to start a garden myself sometime, we have a spot just need a little help from the family to get started! We used to have one when I was a little kid and would grow our own pumpkins every year! A cold soak sounds nice.
I get the struggle of vacation as well, I remember going to Disneyland at 11 and staying there all day in the heat! Now if I go again it’ll be a wheelchair and many breaks, hopefully out to the car to get some air conditioning!
I wish I could push myself that much! Most of the time it’s limited to pushing myself to go on a little walk with my dog. I’ve been having a painful day as well, let’s hope it gives us some relief soon.
I am 69 and have have E.M. Secondary to M.S. I’ve had PPMS for 36 years and have been well enough to bring up 4 children to adulthood and taught secondary till I was 64. EM began about 4 years ago and one foot and leg flares constantly, but alternately for a few days each. I was able to go out more before the swelling began, but thankfully after ages, I found socks, (for the cold foot,) and sandals that are EEEEE. Yes honestly. My temperature has at times gone out of control when the leg flares and swells hugely and the skin peels right off, which I didn’t understand. I have recently found this is caused by high fever causing blistering of the skin, resulting from M.S. bladder infections and I have the high temperatures from MS-caused, autonomic dysfunction, (which means my temperature control mechanism is out of sync.) I’m having my bladder problems looked into to prevent the infections happening again. When they do, they cause a mock-flare in my M.S. too and my body cannot do what it usually can until antibiotics kill the infection and paracetamol or aspirin bring the temperature down. I have found that 50mg Tramadol 4 times a day and 300 mg Gabapentine 3 times a day and a full aspirin 3 times a day helps the pain enormously and I use a cooling mat under my fooot and one on top of my foot during the day and one under both of my feet at night, when both flare most and often both together.This makes all the difference in the world. Both mats, previously frozen in the fridge can go with me in my newly bought walker’s basket and I will be able to travel coolly on trams and trains at last, which I couldn’t do with just my stick.
My most debilitating condition is chronic lower back pain. Bending lifting driving sleeping sitting getting things out of cupboards walking moving around objects left in the pathway… i cant count the number of ways this effects me, the whole body is attached to your back and nerves to all areas of your body originate from here and the pain gets so bad I want to vomit. EM is more sporadic and the pain more isolated. When my friend has a sore back its the worst thing in the world. When my shoulder hurts its the worst thing in the world because its not an all day everyday feeling. A doctor asked me this year what is positive in life - I have a good right ankle and right arm. EM has taken the last good things I had left. As I mentioned a few times, the positive is I learnt to crochet and this has gotten me out of the house to meet people at a crochet group. I fit right in - they’re older than me and therefore most have health problems so they understand and care and although I am fairly young, their values reflect my own.
Where do you find a “cooling mat”?it. Sounds like it would be very beneficial to have. I am 13 years with EM and I’ve tried it all, but today I saw a letter that touted CBD oil and said this has been a lifesaver, so I will research it. Good luck to you and all other sufferers. Thanks for your reply. Patty