People around me are celebrating the signs of Spring. Meanwhile a sense of dread is once again building up inside me. Summer is coming. For me May 15th marks the start of frequent outdoor temperatures that trigger flares. This “flare season” lasts until late October. This is my 6th year coping with daily EM flares. I’m having a tough time coping with facing another summer. So much effort to do life & take part in routine activities that others take for granted. Trying to get off my pity pot & be grateful for what I can do. Hoping for feedback from members regarding their anticipation of the hot season.
I can totally relate to your dilemma, I’m a New Zealander who has had this condition for almost 16 years now so we’re heading into Autumn and Winter, which is a good thing but brings it’s own problems. I used to love being outside on a sunny day, walking on the beach, playing with my kids but now I dread the hot weather. As soon as the sun gets near my feet and lower legs I burn and itch and when my feet/legs get wet they dry out so much it hurts and moisturizing makes me burn regardless of what I use. My lifestyle has changed immensely and took so much from my 2 sons and our lives together. I feel your pain Elis and hope you can get some sort of relief. Love and light, Kazz
Thanks for writing Kazz. While I was writing it dawned on me that EM folks of the southern hemisphere are just ending their summer. It helps to hear of your experiences with EM. The disease interferes with our lives in a way that I find few people I mix with can comprehend. Hope the Fall season brings you many good days, Elis (Western Massachusetts, USA)
Thanks Elis, I hope your summer doesn’t cause you too much grief. It’s all good and well having people sympathize isn’t it, but I don’t think anyone can fully understand unless they live with it. Our summer was very mild to begin with but the last few weeks have been the worst so I’m thankful the nights are getting a little cooler. I’ve started having what I think are facial flares and they happen most often in places that have air conditioning, heat pumps and the like so winter has its own problems, and living in Dunedin, which is the bottom half of the South Island means there will be snow and ice. Not being able to wear any footwear, except grandad type slip on slipper for very brief amounts of time, means that its almost as bad as summer lol But at least I’m not in the North Island anymore so try not to complain too much! My mother also suffers from EM but my version seems to have mutated and my sister also has flares on her face and forearms, hope my boys never have this!! Love and light to you Elis xx
I am lucky that in the UK we rarely get really hot weather, but sometimes we do. The thing apart from it being hot that has always bothered me is all the other people saying how wonderful it is and when I say I don’t like the very hot weather they look at me as if I am mad.
Hi Elis. I can certainly relate to your fear of summer. Last week was perfect, around 72 during the day and I was able to be outside enjoying life for hours at a time. Today we are in the upper 80’s and humid and I know this will last until late fall. And I am miserable. It doesn’t seem fair that the perfect weather lasts for such a short time before the long, hot months of summer descend. I’m reading through these forumns, looking for tips on how to deal. I cannot stand to wear sandals as the straps are painful to my tender feet. Plus if the sun hits my feet the pain is through the roof immediately. So into shoes they go, heating up and adding to the heat and pain. Anyway, I understand.
Thanks for your feedback. Your sharing of your current struggles helps me endure.
One lesson that I can share is that EM’s expression goes through cycles. My first two years had the greatest fluctuations. I didn’t handle things well. I isolated to the extreme.
Now, after 5 years with daily EM flares, things are much better but still challenging. With preparation I can maneuver in the world of the “normal” most of the time.
I focus on what I can do. In the summer I can swim in the lakes of the Berkshire Mountains (AC’d car ride, short walk to shaded park, lake front few yards away.) Gone are the sun drenched beaches, baseball games and outdoor art & wine festivals. New to my life are early morning nature walks with my son and 7 am café get togethers with pals.
Perseverance, patience and humility. With compassion listen to your body. It will show you the way.
With faith, hope & love,
Hi Christine. I really like that you have found things to do that work for you. I guess that is key, to try to find things you can do so that the isolation is less likely to happen. I’ve always loved heavy physical activity, now that is hard to do! But perhaps if I do it after sundown I can work things out. I am somewhat dreading an upcoming vacation to Orlando, FL in August. I need to find a way to look forward to this destination where the attractions are outdoors and everyone else wants to do things I probably will have much difficulty with! I have been scouring this page for tips, trying very much to somehow feel empowered in some way. I guess what I am feeling now is that while things cannot be the way I want them to be, perhaps they can still be. I’m in the midst of a horrible flare today and so…I may go to the library for a few hours as they are air conditioned and I can distract myself! Thanks for the response…oh, and I’m a little jealous that you swim in the lakes of the Berkshire Mountains…that sounds heavenly!
I know exactly how u feel. I live in Texas and it’s alre 88 degrees. I have 3 kids and love to be outside and play with them, feel the sun on my face, going swimming. Ive been so depressed lately bc I can’t do any of those things anymore. I hate this disease. Why us! And there’s nothing that can cure or help it even 50%. Wish there were more treatments or trials out there.