Oh!! I just read some of your previous messages and you ARE British. I’m a British TV junky. I spent 4 nights a month in Britain for twenty yrs. I LOVE your country. Oh, to live and die in England. Sato
Yes I live in Cornwall. I bet you watch Doc Martin? I have a friend who lives on the west of America he loves Doc Martin that is filmed up the coast in Port Isaac not that far from me. Maybe you will visit here one day!
I know how you both feel. Each year my EM progressively gets worse. I was living in Northern California until 5 yrs ago when my husband & I moved much farther north near the Canadian border. Here we have 4 distinct seasons each year. Now in the last 2 yrs I have noticed that I will flare up 100% of the time when we are changing seasons. Weird, huh? Like coming out of winter into spring last month my feet pretty much burned the whole month. And mine swell & the skin splits & there’s no relief even with ice packs & a fan. But now, they are settling down except when I’m on my feet. It also happened last fall while going into winter. I can no longer walk & when I go somewhere which is not often I have to bring a wheelchair. That only helps me to not walk but my feet will still burn because most places are too warm. My dr told me I don’t have to come to the office, unless it’s really necessary, but we can talk on the phone at no charge. He’s trying to help me with different drugs but nothing is working. Also I wanted to tell you that winter up north is worse for my feet. Because now if they get too cold I get painful blisters which is chilibains. It’s a delicate balance to keep it cool enough for my feet but not too warm because my hands also burn & it has progressed to my face, head, neck, chest, & ears. It’s also coming up past my ankles. So all winter I lived with painful blisters & was constantly putting medicine on them. Now, since living here, we’re coming into the best time of the year for me. I thought I’d never say I was looking forward to summer! I still have to stay cool & can’t go outside during the middle of the day but I can go out on my front porch in the early morning & in the evening. When I lived in Northern California I couldn’t even do that because it was so hot. But at least this time of year I don’t have to deal with the blisters. I feel for you both…I know how hard it can be. It’s hard to sleep & a challenge to do anything. I, like Sheltielife got this later in life & have had it for 16 years. I can’t imagine having 4 children & living with it. Natalia, you will be in my prayers. And sheltielife, you will also be in my prayers…you have a lot to deal with. Also, I will remember Satochan in my prayers. But it’s good to know others that are having the same challenges. Hope to talk to you all again, soon.
Thanks Miss Patti for understanding how Satochan and I feel, it helps. One of the problems I have is explaining to friends what it's like. I don't think you can appreciate how horrible it is unless you have it. The same goes for telling doctors. It took a long time to get listened to by them, partly I couldn't put in words the symptoms and partly because it's rare and most doctors at least in the UK have never even heard of it.
Satochan,
I always tell people what someone told me when I joined this site. It is okay to feel sad, to vent, and to cry. At the same time, you should challenge yourself to recognize the positives in your life. There may only be few- but trust me there are positives and they are the key to this journey. I can easily list some negatives to the pain of EM. We all can, its not that one persons pain is worse than the others, its that we are all in pain- and we are all in this together!
Here are some things that I do to help manage my pain and my depression:
1. Be present and don't look into the future. A lot of times we make ourselves sad with the question "will it always be like this?" Just focus on the day. One day at a time is an important perspective.
2. Be creative. What do you love to do? How can you accommodate what you love to do, and make it work with your EM. For example, lets say you loved going out with your friends-but we all know its hard when you can't control the temperature out and about. So, get creative and have a get together at your house. Make your home the perfect temperature for you and order pizza.
3. Use the website! No one understands EM like the people on this site. We share something together that no one else will ever understand
4. Don't be afraid to post about positive things. Post about how you took a shower 1 degree warmer than usual. Tell us about your doctors and medicine. What works for you might work for someone else. Let us know
5. Identify your supports. Have that person that you can talk to about your EM.
6. To contradict number 5, remember there are other things to talk about besides your EM. It is constantly on our minds, but not on our friends. Distracting yourself helps manage the pain.
You and everyone on this site are in my prayers every night. I don't know why we all have EM, but everyday I try to figure our why. And sometimes, I get answers. Like, I would have never met all of these wonderful and supportive people on this forum if I didnt have EM. Its not the best way to meet people, but I am thankful to have met them all.
H.O.P.E.
Hold. On. Pain. End. - this is my daily mantram. Having a mantram helps too.
Praying for you,
Little K
Satochan said:
It's SPREADING!!!! Just yesterday the fire in my palms started in a straight line from my outer wrist bone, up my outer arms & into my armpits. Late last night, electrical tingling started down my sciatic nerve, down my legs & into the outer soles of my feet. In desperation I just called my EM Dr's office this morning and they're going to call the pain clinic that I called 2 wks ago that never called me back. I'm getting a little panicky. Is this what the rest of my life is going to be? The fire just increasing and spreading? HELP!!!To tell you the truth if I didn't have 3 pets to be responsible to, I'd seriously think of the best way to get out of this body. Then...I read Sheltie's message, all she's tolerating and coping with and I feel ashamed that I'm such a pain coward. Can you tell I'm crying? What a delightful way to start the day. I'm sorry if I'm bringing down my fellow burners. I didn't mean to.
1 Like
Well said Little K. All the things you said are good advice!
Satochan, as Little K said there is nothing wrong with crying that's what it's there for a way of releasing things. If you didn't cry you would bottle it up and that's worse. As for your comments about my struggles you know what they say you can usually find someone in a worst state and that applies to me.
I am lucky that I do web design and that takes my mind off things. I do the website for the RSPCA Cornwall Branch. Unfortunately, I don't have any animals. My last dog died nearly 3 years ago. I would love another dog, but I don't think it's fair to take one on at the moment.
Worrying about the future is the worst. I strongly agree with #1.
Little K those are excellent helps! I also very much agree with #1. Thank you for sharing!
Dear Sheltielife,
I’m so sorry to hear of your doggie loss. I have a miniature schnauzer named Marcy. It took me 20 years of mourning to get another dog. I still have flashbacks of my 1st dogs death. I’ve never been loved by a person like she loved me and I loved her. I know she’ll be waiting for me after I leave here & that thought brings me comfort.
I hope your situation changes, so you’ll be able to care for another fur-baby.
Saw a pain dr. Yesterday who is going to give me a nerve block next week. Have you ever heard of such a thing for EMers? They have to put me to sleep to do it, so it’s not a casual procedure. I’ll do some studying on line but IMHO the experts are here.
BTW, do you live anywhere near where DOC MARTIN is filmed. Where I live in Tx it doesn’t feed the soul. No mature trees to gaze at and acres and acres of cement. I really envy you. I’m such an Anglophile! Sato
sheltielife said:
Well said Little K. All the things you said are good advice!
Satochan, as Little K said there is nothing wrong with crying that’s what it’s there for a way of releasing things. If you didn’t cry you would bottle it up and that’s worse. As for your comments about my struggles you know what they say you can usually find someone in a worst state and that applies to me.
I am lucky that I do web design and that takes my mind off things. I do the website for the RSPCA Cornwall Branch. Unfortunately, I don’t have any animals. My last dog died nearly 3 years ago. I would love another dog, but I don’t think it’s fair to take one on at the moment.
Re DOC MARTIN: I absolutely LIVE for the new shows every two years. I love every character! I get such enjoyment out of BBC Shows. If I told you every one I watch, it would fill up the page. Am currently enthralled with “Grantchester” and am madly in love with the Vicar. When The Tudars came out I bought the whole series on DVD and rewatch it every coupla years. Just watched from Netflix The James Herriott Specials. The world seemed to be a better place when he was alive. I’ve read EVERY one of his books and when I read of his death, I grieved. It was so good to be mentally back in the Yorkshire Dales that day feasting on its beauty. I was having a difficult burning that day and it comforted me. You are so blessed to be surrounded by such beauty in Cornwall. I hope Heaven looks just like England. Sato, BTW, I flew to Japan 6,420 miles, one way, from Dallas 3x a month for 20 yrs. I adored my Japanese colleagues and they honored me with this name. It means Peaceful Glen.
sheltielife said:
Yes I live in Cornwall. I bet you watch Doc Martin? I have a friend who lives on the west of America he loves Doc Martin that is filmed up the coast in Port Isaac not that far from me. Maybe you will visit here one day!
Hhmm, I’m just wondering if there are more cases of EM in Great Britain and Austrailia & New Zealand than there are here. When speaking of our forbears here, many answer Heinz 57. That’s a brand of food called Heinz 57 varieties. It may be sold in your stores too, just can’t remember what all I used to buy at WaitRose and Tesco. It must be interesting to have such pure DNA. My ancestors were French, English and Italian. The point I was interested in researching was the # of EMers there compared to here. It should prove to be fascinating. Hope the day has been good to you Sato >
Satochan said:
I just don’t get it… This morning I was in a panic over the spreading pain & crying like a baby. At 4 pm the pain eased, and by the time I went to Bible study the burning was completely gone. I took no pain meds as I had to have a clear mind for class. Thank you Sheltielife for encouraging me. Was doing further research on the statistics re EM. I failed to see a little dot Between two numbers. There are only 1.3 EM patients in a million. NOT 13. Is it any wonder Dr’s don’t know what to do with us?
Little K, Thank you so much for your words of encouragement. SL sent me a message to remember that the pain sometimes just flares and then subsides. I enlarged it, printed it and taped it to my bathroom mirror. I’m saving your wonderful message to a file of supporting, uplifting messages to open and read when a sudden flare gats me in a panic in order to calm down and GET A GRIP! Thank you! PS I hate spell check!
Little K said:
Satochan,
I always tell people what someone told me when I joined this site. It is okay to feel sad, to vent, and to cry. At the same time, you should challenge yourself to recognize the positives in your life. There may only be few- but trust me there are positives and they are the key to this journey. I can easily list some negatives to the pain of EM. We all can, its not that one persons pain is worse than the others, its that we are all in pain- and we are all in this together!
Here are some things that I do to help manage my pain and my depression:
1. Be present and don’t look into the future. A lot of times we make ourselves sad with the question “will it always be like this?” Just focus on the day. One day at a time is an important perspective.
2. Be creative. What do you love to do? How can you accommodate what you love to do, and make it work with your EM. For example, lets say you loved going out with your friends-but we all know its hard when you can’t control the temperature out and about. So, get creative and have a get together at your house. Make your home the perfect temperature for you and order pizza.
3. Use the website! No one understands EM like the people on this site. We share something together that no one else will ever understand
4. Don’t be afraid to post about positive things. Post about how you took a shower 1 degree warmer than usual. Tell us about your doctors and medicine. What works for you might work for someone else. Let us know
5. Identify your supports. Have that person that you can talk to about your EM.
6. To contradict number 5, remember there are other things to talk about besides your EM. It is constantly on our minds, but not on our friends. Distracting yourself helps manage the pain.
You and everyone on this site are in my prayers every night. I don’t know why we all have EM, but everyday I try to figure our why. And sometimes, I get answers. Like, I would have never met all of these wonderful and supportive people on this forum if I didnt have EM. Its not the best way to meet people, but I am thankful to have met them all.
H.O.P.E.
Hold. On. Pain. End. - this is my daily mantram. Having a mantram helps too.
Praying for you,
Little K
Satochan said:It’s SPREADING!!! Just yesterday the fire in my palms started in a straight line from my outer wrist bone, up my outer arms & into my armpits. Late last night, electrical tingling started down my sciatic nerve, down my legs & into the outer soles of my feet. In desperation I just called my EM Dr’s office this morning and they’re going to call the pain clinic that I called 2 wks ago that never called me back. I’m getting a little panicky. Is this what the rest of my life is going to be? The fire just increasing and spreading? HELP!!!To tell you the truth if I didn’t have 3 pets to be responsible to, I’d seriously think of the best way to get out of this body. Then…I read Sheltie’s message, all she’s tolerating and coping with and I feel ashamed that I’m such a pain coward. Can you tell I’m crying? What a delightful way to start the day. I’m sorry if I’m bringing down my fellow burners. I didn’t mean to.