Usually, not always but usually, I start to feel better by this time of day. At least until night falls. Unless it's summer and that's a whole other story. After a hot uncomfortable night (it's actually quite cool at night in Australia at this time of year so it's me not the climate) with the fan blowing on me for most of it (until I got too cold and had to turn it off until I got to hot and had to turn it on....and repeat), I sat stripped down with the windows open. Most of me eventually cooled down except for my arms which remained scratchy and hot. My feet did that thing they do sometimes and got too cold and then felt frozen so it took me a few hours to warm them from freezing to okay. Then I was hot again, just about all over, had a coolish shower which gave me no relief. Got anxious (this makes it all feel worse, I've noticed) so now I am sitting in front of a fan. It's not a hot day in Sydney, it's a nice sunny winter's day (I just had a look out the window to see what was happening 'out there'). This is crazy stuff. Stripped down to underwear sitting with feet up in front of a fan. In summer it doesn't look so weird but at this time of year it's a pretty weird thing to be doing. Part of me is really angry and upset about it. But there's a bit of me that is laughing a little (a very, very little) at the absurdity of how I look.
I know some people, in worse pain than I am today, would be reading this and thinking she's doing okay. And I know some people would be thinking that they are happy that today is a 'good day' by comparison. I'm thinking of you all. It helps to know that people know what I'm experiencing although, of course, I wouldn't wish this illness on anyone.
It seems my fan is my best friend today. That and mindless foxtel/cable tv. I never thought I'd watch 'Wipe Swap USA', LOL and be interested but it's about all my brain can handle - it's distracting me in it's weirdness and does not deserve much effort in concentration.
Have to get up at some point and prepare hubby's dinner. I hate to start cooking when I feel hot already. I guess I'll be taking the fan to the kitchen.
Who knows? Today could turn out to be a good day. Two days ago, late Saturday afternoon, I went for a short walk along the foreshores of part of Sydney Harbour. It was a beautiful day. I might be able to do that again later today..
Actually, last summer, I was thinking of the people living in South Australia. You had a record breaking number of days of extreme heat days, didn't you? It was a long, long summer in Sydney but we didn't get too many 'stinkers.'
Today it got up into the 80's in Colorado. Everyone was basking in the sun and doing their running in the parks. I can't run, walk or even stand very long. I make simple meals ( mostly frozen dinners) because I can't stand to cook. I use paper plates and bowls so I don't have dishes to do. My life is dominated by my EM and my low back problem. I made it to church today but by the time it was over my feet were burning. I swore I should have taken my Gabapentin before I left, but forgot. As soon as my feet are elevated the burning goes away. I have fans going now that winter is finally over. It has been snowing and raining most of May. I don't mind cool weather. I have to keep my house at 62 degrees year round. If my shoulders get cold I put on a sweater. My RA doctor put me on Cymbalta (the generic form) as well as the Gabapentin. I think the Cymbalta helps some so I am backing down on Gabapentin as I am at the max dose on that. I just don't like the price of Cymbalta. It cost me $45.00 for 30 pills. They said it would go down after another year. I am on a fixed income so I really hope this happens. I live alone with my cat and we watch Netflix movies and TV shows that don't have commercials. I just finished watching Downton Abbey Season 4. I love that program. Reminds me of the Southern women in the USA in their plantations and rich husbands who support their every need. I love the accents of the actors, but sometimes they talk too fast for me to catch what they are saying. Sorry to hear about your bad days, but we all have them and fans do help. I have learned a trick over the years to fight pain. Your mind can not focus on more than one thing at a time, so keep the focus off your pain and it goes away. Hope that helps. Blessings to all
I haven't yet seen season 4 of Downton Abbey. Being Australian and interacting with a lot of Brits I can understand the accents. I adored season 1 of Downton, for sure. The thing I like most about Downton is the actual house and the clothing and maggie smith of course, who plays the 'grannie.' She's a fantastic actress and I just watched a movie she was in, this morning. Filmed in India. Absolutely beautiful. I adore all those gorgeous 1920s clothes in Downton Abbey. My sister is a big fan of Downton and owns the boxed set.
I agree with you about focus. Focusing on something other than the pain does help me most times. Sometimes I just can't focus, however and the pain holds me hostage.
Interesting that you said you keep your house at 62 degrees farenheit. In the past few weeks I've read of at least 3 people that keep there home temps around that level.
I once spent a whole 24 hours in Denver and part of the rocky mountains nearby. We were on a stop over flying back to Australia. It was a beautiful blue clear day but cold. I saw my first buffalo (plural) in the mountains. It was all so beautiful
I had a night just like yours Blue. I so recognise the frozen feet bit too. I try to catch them just before the freeze because they can take hours to return to normal and if pushed will then flare again. We are having a 3 day hot spell in UK. Lovely to look out at but I keep well out of the sun. Last night I wanted to go out and walk barefoot on the cool grass but my fear of stepping on a snail or slug wandering across my lawn puts me off, even more than the foxes which use my garden as a playground at night. I have to keep moving so tidied the kitchen instead though you wouldn’t know it with all the baby paraphernalia which has taken over the house.
I am glad you people like Downton Abbey.
to Myself: you need to turn subtitles on on your TV to get round the problem of the English accents.
I’m not offering helpful advice I fear except that to keep active in a cool area, even when dropping with tiredness, works best for me and I have come to accept my nighttime perambulations.
I totally understand! Everyone is so happy to have the warm weather here (in Boston) and I am dreading it. The inactivity is hard. I get so annoyed sometimes with my sedentary lifestyle. It is especially annoying to look at all my friends posting about their glorious daily runs on social media and I can barely walk in this weather!
After the most frustrating day yesterday, hours of feeling too hot, skin burning in places, feelings of skin sensitivity to my clothes, followed by feeling too cold and then going through the cycle again. But I ended up having a pretty good night. I woke a few times feeling overheated but skin was not burning and also my skin was not sensitive to the sheets. There is really no predicting this EM times. I have been taking 4mgs of cyproheptadine (a first generation anti-histamine the past 4 days). It has done nothing for my skin but it does make me tired and last night I think it kicked in and helped me get some sleep. I'm taking it in hopes it will help with my migraines. It has in the past, and then stopped working. I'm retrying it again in hopes it will kick in and help with migraine again. I do dream very vividly on it but at least I'm dreaming and, therefore, sleeping.
I can relate to your night time 'rambling.' I used to do this a lot but when we moved into this second floor apartment just over 4 years ago I became aware of how much I can hear the neighbours moving around (not so much voices, unless they are on their balconies), rather when they use the bathroom, have a shower or move around in the kitchen etc. I can hear this stuff coming from the apartment below and above me. Therefore as I move around in the night quite a bit, just to use the loo or get something to drink, I try not move around more than that because I'm aware that I'd be disturbing them. My husband says not to worry about them. But I do. I miss being able to do things at night when it's cooler.
So, hopefully in a years time we will move back closer to the beach (not sure which one) but it will be a ground floor apartment next time around.
blue
Nel said:
I had a night just like yours Blue. I so recognise the frozen feet bit too. I try to catch them just before the freeze because they can take hours to return to normal and if pushed will then flare again. We are having a 3 day hot spell in UK. Lovely to look out at but I keep well out of the sun. Last night I wanted to go out and walk barefoot on the cool grass but my fear of stepping on a snail or slug wandering across my lawn puts me off, even more than the foxes which use my garden as a playground at night. I have to keep moving so tidied the kitchen instead though you wouldn't know it with all the baby paraphernalia which has taken over the house.
I am glad you people like Downton Abbey.
to Myself: you need to turn subtitles on on your TV to get round the problem of the English accents.
I'm not offering helpful advice I fear except that to keep active in a cool area, even when dropping with tiredness, works best for me and I have come to accept my nighttime perambulations.
I am glad you had a better night Blue. Even the odd good night helps. I was better prepared for last night and was only up once for a short cooling. Barefooted you shouldn’t disturb the neighbours but having said that in my daughter’s flat you can hear more than you would like to from the people upstairs. We were in an upstairs flat when we had our first baby and she was a howler who never slept. It was a tiny flat with no washing machine and a regulation prohibiting hanging washing out of the window. No disposable nappies in those days. Our downstairs neighbour hated us and I could hardly blame her.
I hope you get back closer to the beach. I was brought up at the seaside and miss it, however much I love London with its rivers and lakes.
I hasn’t heard of cyproheptadine. Do you have a lot of migraines? Funny thing but since I came out of hospital on Warfarin I haven’t had one at all. I wonder if there is any connection.
I went to a hospital appt. in town yesterday on one crutch. Very hot day, two buses and a train each way. I had doors held for me, people gave me their seats, a train driver waited for me (NEVER happens!) and bus drivers checked I was sitting before moving off. I went barefoot in the hospital but had to wear sandals outside and my feet had a really bad time but have recovered by this morning. Happily my next appt. is a month away by which time I might not need the crutch.
Blue ....That was Beautifully and accurately put. You should be a writer! Sure it helps that every word you speak rings true but I am sucked into your writing as if it were a good book!
I know what you mean about the night times. I am so happy to have just gotten central air-conditioning in my home! Where I live most homes don't have it because normal people don't find it too hot enough days of the year to make it worth the money but I use it just about year round. Still at night It still comes and there is nothing you can do. I didn't understand it as my husband tried to explain that the AC won't cool it any colder than 60 degrees and that is pushing it. He said any colder and it would freeze the coils and shut it down. I responded with..... why do people have AC if you can't make it colder than 60?????? apparently normal people find temps 60 and under uncomfortable! Go figure!
Last night it did just that and froze up when we had it at 60. I woke up to burning feet and hands then I noticed the sound of the heater running. I woke my husband and apparently the heater kicks on to thaw the frozen coils when the AC gets too cold!!! Not the best night ever any way.
I am grateful to have the AC though because as long as I minimize my activity. I do things in 5-10 minute spurts then rest with legs up I am almost pain free ( almost) most of the time. I still have regular problems at night and first thing in the morning. First thing in the morning isn't so much burning as just pain and stiffness that is difficult to move for the first two hours or so. In between those times however I am golden and have that to look forward to everyday.
Thank you for sharing your evening with us Blue. I know it wasn't great but I am glad it wasn't too bad.
I used to be able to write quite well -- not professionally but I had a number of pen friends and journal-ed quite a bit. But a combination of exhaustion and depression from my health problems caused me to drop off writing to people. As for journal-ing...well this ill health stuff makes for a pretty depressive read. I seem to have lost my imagination somewhere along the way, too. My daughter is a journo, though. She's a very good writer, having learned her craft over years.
Oh dear god, the heater on your air-conditioning unit kicked in? How horrible.
We don't have good air-conditioning yet but I have an Italian portable one that I can move from room to room. It's bulky and extremely noisy but it does the job as well as I could expect.
My poor husband feels the cold. The other day we were both watching tv and I was stripped down to underwear with a fan blowing on me, windows open, letting the 'almost winter' air. He was rugged up with his outdoors work jacket on and a blanket covering his legs. He doesn't complain about it though. Bless him.
That was a pretty arduous journey you underwent yesterday. At least people were nice. That always helps.
Yes, I get a lot of migraines. They are a symptom of POTS. But I also have quite a number of allergies and intolerances to foods and meds etc. The cyproheptadine (periactin) is a h1 anti-histamine that also helps some people with their migraines. It used to work beautifully for me but stopped. So every now and then I've tried it again over the years. Sometimes it helps for a while. Sometimes it doesn't help at all. I'll know within a week if it's going to do any good this time around. It's also used for people with anorexia (NOT my problem), it causes hunger and consequent weight gain. I could do without the weight gain, having put on a lot of it since I've become ill.
blue
Nel said:
I am glad you had a better night Blue. Even the odd good night helps. I was better prepared for last night and was only up once for a short cooling. Barefooted you shouldn't disturb the neighbours but having said that in my daughter's flat you can hear more than you would like to from the people upstairs. We were in an upstairs flat when we had our first baby and she was a howler who never slept. It was a tiny flat with no washing machine and a regulation prohibiting hanging washing out of the window. No disposable nappies in those days. Our downstairs neighbour hated us and I could hardly blame her. I hope you get back closer to the beach. I was brought up at the seaside and miss it, however much I love London with its rivers and lakes. I hasn't heard of cyproheptadine. Do you have a lot of migraines? Funny thing but since I came out of hospital on Warfarin I haven't had one at all. I wonder if there is any connection.
I went to a hospital appt. in town yesterday on one crutch. Very hot day, two buses and a train each way. I had doors held for me, people gave me their seats, a train driver waited for me (NEVER happens!) and bus drivers checked I was sitting before moving off. I went barefoot in the hospital but had to wear sandals outside and my feet had a really bad time but have recovered by this morning. Happily my next appt. is a month away by which time I might not need the crutch.
I knew you had some experience writing Blue. I too had one of the portable air- conditioners you can move room to room as a matter of fact I still have it. I use it in the kitchen if I am trying to cook for an extra burst of cold air when the central air isn't enough to combat the heat the cooking makes! I don't know how your house is set up but may I offer a suggestion that helped me when all I had was the portable AC? I hung up Blankets in the entryways leading to my living room to block off the hallway and kitchen so that my little ac could do a better job at cooling my living space. Yes ... during the summer months I was all but confined to my living room but it really kept it cool enough. Before I did that the whole house was cooler yes but not cool enough to stop my flaring. I would just resort to microwave meals or other family members would throw something on the BBQ so they didn't heat the house. I personally slept in a recliner in my living room in the summers but my flaring was extreme!! Now with central air I can sleep in my bedroom again.
I am so glad you have such a supportive husband. I gave my husband this beautiful faux minx blanket for a gift and it is his favorite gift ever! He lives in that thing from the moment he walks in the door and bless his heart rarely complains. I mean RARELY ... maybe twice in 4 years then he feels bad afterwards! I am a very lucky woman :)
I am glad your daughter has caught your writing bug as well. If she is anything like you she writes beautifully. I know you said your writing was depressing but for some reason it just comes across poetic and moving not like a depressing woe is me story. Keep it up. I know writing your feelings out like that is also good for your soul.