How We Live ! Features such headlines as " Museum Danger ,Consider Yourselves Warned"

This discussion was initially to be about climate and how it affects our Em , but temperature is such an integral part our our lives and so strongly dictates the way in which we live it became obvious the thread needed to be called something else . " The Way We Live" probably covers things nicely and could allow us to share where we live , snippets of our daily routines and any thoughts in general you may wish to share. I know I love to hear about the daily lives of others with Em so I am hoping lots of people join the story .
As to the featured highlights , well maybe I am exaggerating just a tiny bit . Who knows I might get moderated - the life of a journalist is a difficult one , free speech etc , etc
I am awarding Sharon our most prestigious award the “Pulitzer Like Prize”, for being brave enough to share. The usual suspects replied ,but there are more potential bloggers out there -report on where you work , your favourite icream
whatever .

Tizzy, I find it hard to travel anywhere so I don’t! Mostly because of EM but also arthritis and my busted leg. My only trip since EM was my famed trip to my family in Tasmania which scared me to tears before I went but then was brilliant. It was cool like a cool English Summer and coming from Winter at home where I flare almost continually from September to June, it was bliss. When the sun shone hot I stayed under cover but there was always a cool breeze so it rarely got hot. I couldn’t have gone if they had still been in Queensland.

It is getting colder now in England and I am having regular Raynauds attacks and constant EM flares already from lunchtime onwards. I am also getting forced from bed at night with flares. Flares resulting from cold are far worse than Summer flares for me. I can cool Summer flares, which rarely extend up the limbs, but a Winter flare, especially at night, goes up to the tops of my legs, up my arms and over my entire head and can take two or three hours to cool enough to drag my weary self upstairs to bed again. The colder it gets, the worse the flares. I am talking about an unheated house and me with nothing on but a tee shirt, by November it will be teeth chatteringly cold and trying to control the shivering makes my jaw and neck ache. And that’s how it will be until we get warmer weather, any time from April to June. If I could stay in bed half the morning I might get a decent quota of sleep but I need my early morning swims and I feel I would be giving in to the curse of EM.

I don’t know what this tells you. Perhaps I am different from most? Perhaps it has to do with the severity of the Raynauds? Perhaps the climate we are used to? We have to keep the house reasonably warm during the day in Winter because the grandchildren are still so little but central heating gives me a new set of problems with a fierce itchy rash. There really is no escape.

I have seriously thought about landing myself on my family in
Tasmania for 6 months of the year but they haven’t space and my grandchildren here are used to having me around, while my garden would turn into a jungle.

A bit off topic.Hi Tizzy, I enjoyed the reminder of the jacaranda trees. I travelled to Townsville for the birth of my first granddaughter, then two trips to Mackay, one of which was for the wedding, before they moved to Brisbane and I went out for two more granddaughter births. The first an emergency and prem baby and the second 18 months later. That second time I stayed nearly two months as the baby got a virus and strep B and I spent nights in Mater hospital with her. I loved Brisbane but even though that was 6 months before I began with EM I found the sun too hot. No typhoons when I was there but we did have spectacular electric storms and an exciting dust storm.
I am not sure if I can ever fly to Australia again now that the operation on my leg left me with heart trouble. Taking my age into account too the insurance would cost as much as the fare. I will just save my pennies to bring the family over to me. They are presently in the air 5 hours to landing:)
Climatewise it was pretty chilly when I left the house at 6 am for a swim but the sun is now out and it looks to be another hot day on the way. We always seem to have a good spell after the kids go back to school in their heavy winter uniforms, this year after a disappointing summer. With the weather so changeable my body never gets a chance to adjust. My feet are warm in sandals but my hands are frozen and I have on my fingerless gloves. Once the sun is up I will be changing into my coolest clothes to face the day. And what a day it will be!

Thanks Tizzy. The children went to bed at what was 4 am at home! The stamina of small kids!

Up until this this year city have done better in a sydney, Australia winter. Summers have been the toughest time. But I have really struggled this winter. I'm wondering if the coming summer is now going to be even harder on me or if it is just that winter is now very problematic for me.

My allergist is admitting me to hospital add the end of this month to test me to make sure it is aspirin that caused me to have an anaphylactoid episode over 12 years ago. I have avoided it since as advised, but would like to be able to try it to see if it might help with my EM. I will be in hospital for 5 to 7 days doing a 'slow challenge' as she put it. Last time I did a hospital challenge 8 a med it was done in a day so she really plans on taking it slow. Most of my specialists work at this hospital so I'm hoping to get them all together and see if we can work out some better treatment for the Em and the POTS while I'm in there.

I am aware that, at least up until this point, that my EM won't flare in places like hospitals with their controlled temperatures. They are usually on the chilly side which suits me, but doctors probably won't get to see the flaring which is a bit of a bummer.

Before that, i have a challenging family holiday up on the far north coast, just south of the state tizzy lives in. It should not be too hot at this time of year. Fingers crossed. The ocean temps should be perfect for me which is a real bonus. Although some poor surfer was attacked and died from a shark attack yesterday exactly where we will be holidaying. I have a pretty fatalistic approach to that stuff in regards to myself, but I worry about my adult kids. Two of them surf.

Nel, i also can have burning skin and feel chilled at the same time. Plus when my feet, hands, face (and nose) get really cold it can mean I have an EM flare coming or its prodromal or aura to a migraine. Talk about messed up pain signals and how our brains interpret them.

As soon as I think I have a hard and fast 'rule' about how my body is going to react, i can now be Damn sure that it's about to change, again.

Tizzy, i totally understand your desire to leave Brisbane. The heat there is overwhelming in summer - and I was last there long before my EM.


We have a huge Jacaranda tree in the backyard of the block of apartments where I live. It is so beautiful

Hi Tizzy.

I live in Washington state , Northwest USA. I think this is about as good as it gets for me. I have both EM and Raynaud's.

The summer temps here average mid 70s F. It can get hotter but it usually doesn't last long before dropping back down. This is still too hot for me to go outside but I can get outside in the morning before it warms up. This lower temp also allows my AC to keep my house around 63-64 my ideal temp. Room temp here it 68-70 and once again too warm for me! So I can't go inside stores or other peoples houses for long.

Winters average mid 40s . This is too cold too but it could be much worse. I just try to schedule my doctors appointments for later in the day and bundle up . I bring flip flops and I wear layers so when I get inside I take all my other layers off and change my shoes so I am now dressed for summer!

Over all the temps are about as mild as they can get. If I could afford it I would move to Monterey California.The summers are around 70 and winters 50's into low 60's sometimes. It is on the coast and just beautiful! It is crazy expensive to live there however :(

I am interested in reading where and how others live. Thank you for starting this discussion.

Take care,


Hello Tizzy,

I live in San Diego, California, actually what is considered east county which is about 20 miles from the ocean. It is very hot here right now, almost 90-95 F. I have central air but it will run constantly if I turn the temp down, so I have compromised with my husband to keep it at 78 F. It barely keeps me from constant flair, especially my left foot which I have more pain with. At night we turn off the air and the temp sometimes stays at 78 F all night. I have to wrap my feet in a frozen gel pack. We had a very warm winter, so I didn't get a break. I never wear shoes here, just flip flops. Usually I'm not even cold. I haven't been on vacation for 4 years now. When we do go somewhere, it will be a cool distention! I have lived here my whole life and my parents are elderly now, so I wouldn't move. I don't even work now, so it's not a choice. I would like to live closer to the ocean, as others said, but again it's usually more expensive. So, I stay in the house, or go somewhere that has air conditioning. It really affects what I can do daily. My relatives live in Scotland, that would be cool, but the whole trip getting there would be very hard. Take care,


Oh dear Sharon, 90-95 degrees sounds like torture. Even 78 is too hot. Scotland would be some shock to the system!

I’ve almost given up cooking Tizzy and my daughter who lives here knows not to use the oven on a hot day as I can’t even visit the kitchen if she does. I won’t even bake bread in my breadmaker when it’s hot and I have baked my own bread for 40 years, most of those properly by hand. I can’t imagine what kneading by hand would feel like with EM - ouch.

I have a ‘cage’ type cradle which covers me completely as I cannot bear any bedcovers or nightclothes whatever the temperature. Is there no-one else other than David who uses such protection?

It started off protecting just my legs but I extended it with the help of a cot side strapped to the top, right up to my chest. I hate to think of the image I might be planting in anyone’s head but now I can dispense with any coverings except a light piece of material over my shoulders. In Winter I have a duvet completely covering the cage to try to keep a reasonable temperature in an unheated room. It doesn’t always stop flares but before I had my bright idea I was spending half the night every night trying to cool horrendous flares.

Tizzy I can’t believe how much noise three small granddaughters can make. At least today they waited until 6am to start their day. Funny how our scaredy cat baby boy is in seventh heaven with unlimited attention from three little cousins.

YHi Nel,

I have been able to avoid needing a cradle. Knock on wood. so far, that is. I sleep on the really softest old sheets most nights ( I do appreciate them but they are a really institutional green color). I leave tomorrow ( actually it's about 3 am in the morning now so leaving later this morning, really) and those sheets will come with me on holidays - I don't leave home without them. 'Light travellers' we are not, LOL. meds, a couple of days worth of foods I can eat that seem not to make my EM worse, a fan, just in case.......

often I can't sleep with the top sheet on, it all depends on EM - day by day, and night by night, or hour by hour . The nights are warming up although Hubby Is still sleeping under a doona (I guess rat translates ti a feather stuffed quilt for our American friends). I had the Window open all night, there's a stiff cool breeze/wind blowing. But when I woke up I had to close the Window as the wind blowing in has increased the level of pain of my migraine ( which 70s still bearable without taking breakthrough meds, at the moment). I actually was sleeping quietly, the burning and overheating did not wake me up but the moment I woke up it started and increased as soon as I sat up.

Okaay, it's nearly 4 am and that lone crazy bird, the ear l y riser of the neighborhood, has just woken up too. It has a terrible birdsong.

so i am lying on my second softest sheets, proper up by pillows and I may, or may not, get back to sleep. I find that with EM and POTS I live on too little sleep. People say to me, when I'm looking tired, to go have a nap. I have given up explaining why this is worse for me EM wise, even if POTS would let me fall asleep easily.

The house is will be staying in up north has no air conditioning. It belongs to my sisters husband who is a way and is very kindly lending it to us for our family holiday. It's a bit of a luxury house but has been environmentally designed to not need air conditioning. All of one side of the three story house opens up to the Pacific Ocean a couple hundred meters from the house. The Pacific is the most effective cooling 'airconditioning' usual. Because it is natural and as long as i don't go there in the height of summer I usually do okay once there, knock on wood. The drive today and tomorrow to get there will be another story, i guess.

I am going to have my kids, their partners, and my three grandkids around me and I'm so looking forward to it. Early mornings on the beach with my oldest grandsons, and hubby and taking our 2 year old granddsughter diwn to the beach as long as hubby is with me. Once the sun comes out properly, i will be inside until it sets.

There are big balconies off each floor of the house - facing the ocean - and I often sleep outside on one of them, for most of the night. It's all sounding so good that I'm starting to look forward to it, finally, despite my trepidations about how I will handle the downsides. My family and I have been through a very stressful time lately (a trigger for EM etc.. ) so this holiday should be great - a chance for us all to be together in beautifully calm surroundings with the joy of young kids. My lot are noisy too nell, but it is usually such a lovely noise as you'd know. Usually. LOL.

blue....Please excuse weird words as i still have not worked out how to turn off auto correct.

It sounds just wonderful blue. My older two both travelled up the coast on their ‘gap years’ (serious sightseeing, not fruit picking) and found it really beautiful. I haven’t been further north than a campsite at Narabeen but even that was lovely. I hope the journey goes well and you have a relaxing and healing holiday.

I get so hot you could cook your dinner on almost any part of me:)
It’s just what I do. Sometimes I used to dream about getting under a nice warm duvet and feeling all comfortable and protected but it would be so ridiculous that I don’t really mind it any more.

Dearest Nel,

I too have a body cage. My days are spent mostly bedridden, naked, under fan, being as 'frozen' as possible, drugged up . Being frozen doesnt help my Raynauds but its the lesser of all evils. Like David, I am a prisoner. I am unable to venture out or go anywhere except hospital or Dr's. I dream about having a life again , wearing clothes, my hair growing back, regaining mobility, being able to have a coffee with friends, travel,..... All I can do is dream so dreaming , in my case, is terribly destructive. Actually I find it soul destroying, causing desolation and overwhelmingly negative thoughts. I believe in hope but I try to stay out of my head. My answer to Tizzy's post is that I exist.......... I live without living :)

God bless


Tizzy, this medical device I am presenting to the Dragons, is it my nighttime cage? I have such a vision of them dragging the thing into the den with a naked red mannequin in it and me explaining what a blessing it has been to my condition to a row of baffled millionaires. Not an investible business I fear.

Mads, you know how I feel about your value as a kind, brave, compassionate human being living a valuable life dedicated to helping all of us. I miss you when you are away and appreciate you as moderator and friend wherever you are. Where would we be without you.
Keep plugging on and never give up hope of some day leading a more enjoyable life.


Tizzy said:

Mads I agree that you have the worst time of it that I have heard of .But I won’t accept that you exist without living. Mads you live to help others Bless you , and I don’t think you get thanks enough for the positive way you have influenced the lives of many, so thank you truly .I have been in fits of anxiety without you on the site . I am so sorry you have become afraid to dream ,that is what always helps me , but I can understand how it can also be negative . I think that maybe your honesty offers us all a chance to reflect about not sweating the small stuff and getting on with things no matter if they are difficult . I know that you would relish the chance to push throug a bit of pain to get out the front door! Mads , lovely Mads thank you for sharing , and I hope that one day soon dreaming is safe . Tizzy

mads said:

Dearest Nel,

I too have a body cage. My days are spent mostly bedridden, naked, under fan, being as ‘frozen’ as possible, drugged up . Being frozen doesnt help my Raynauds but its the lesser of all evils. Like David, I am a prisoner. I am unable to venture out or go anywhere except hospital or Dr’s. I dream about having a life again , wearing clothes, my hair growing back, regaining mobility, being able to have a coffee with friends, travel,… All I can do is dream so dreaming , in my case, is terribly destructive. Actually I find it soul destroying, causing desolation and overwhelmingly negative thoughts. I believe in hope but I try to stay out of my head. My answer to Tizzy’s post is that I exist… I live without living :slight_smile:

God bless


But what do you call what we call thongs?
I just may have to moderate your reply

Tizzy said:
Dkel - I tried going to the park wearing a thong this morning and while it certainly helped my EM to be cooler ,the little visit to the police station did not. I was going to complain but have re read your reply and noted you said thongs. Oops , the Aussie slang for flip flops! Not going to change headline unless you moderate me ;) Tizzy

dkel9307 said:

Hi Tizzy

I have found that we have to try to manage ourselves without over-managing. I like it about 60-65F or 16-18C. So days and nights like that are are things when I have aircon and fans on.

However, as we went into winter, I would keep getting up at 6:45am and walk the dog just with thongs on (I cannot even wear socks) and no gloves on (I have EM in hands, too). I also walked the dog at night. The walks were only 15-20 mins, as that is all my feet will bear.

As my feet are worse EM-wise, they didn't even notice the cold, but my hands (right one more so than left) would suffer from EM and get Raynauds-like - then they got autoimmune blisters (about 30....seemed every time I touched something with my hands, I got a blister), then my knuckles swelled up and some started to split.

I ended up in hospital, and the skin biopsies confirmed EM and showed chilblains - self-inflicted (and bloody sore).

So now I am even more careful at not over-balancing and I use my hands as infrequently as possible.

I already have noticed the Spring weather -a couple of days around 20C / 68F and my legs, feet and toes already started playing up more. So am not looking forward to our summers, where we have heat-waves for weeks on end at 37-45C (99-123F)

So it feels safest to stay home and tune the aircon and fan!

I also have resorted to having a bed cradle so that the top sheets/covers don't touch my legs and feet.

The farthest I travel now is to my doctors...

All the very best.

Hope you are well,


Mads, you are such a good friend. A kind, generous soul who helps others while struggling as you do. I have gained so much from the knowledge you so willingly share. I don't know if it helps at all, but please know how much your knowledge and understanding have helped me.


Bless all of you. Didnt mean to sound like a miserable old grumpy . I dont know what I would do without my EM family.I love and appreciate you all so very much. I know that together we are all going to get through this. Hopes and dreams will become reality.