Well, crud. My joints don't like it hot, either. - NRAS

NRAS

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Well, crud. My joints don't like it hot, either.

Azabat profile image
11 Replies

Okay, so it's early June and we're already hitting 33 C. I thought my joints would be happier with the heat and low humidity, but they're just determined to be wretched at me. RD is so humbling. I've been able to stubborn my way through many health difficulties, and I keep waiting for stubborn to be enough. It isn't. I'm trying to stay cheerful, but the heat is absolutely oppressive, and I dread the forest-fire season already. I'm angry and frustrated, because I had hoped that summer would be better for me. I sunburn in minutes, so even the lake is out of bounds. I guess I'll stick to my mornings and evenings, and leave the afternoons for a book and a siesta.

(pictured below is the Okanagan Mountain fire of 2003 - my first summer here from the prairies. I traded tornadoes for floods and fires, it seems.)

-Bats

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Azabat profile image
Azabat
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11 Replies
Jora profile image
Jora

Poor Bats, that sounds miserable. I've worked out that my joints like very warm water, but mild air. but right now, I'm too tired to go and hunt for that combination.

I'm not in a good place, but more of that anon.

Factor 50 is essential on Methotrexate, for me at least. I really don't want to add skin cancer to the mix.

Take care

Good Nighting

X

Azabat profile image
Azabat in reply toJora

I think mine like the same things. Just remember, whatever place you're in becomes better by virtue of your presence. Take care, too!

Aftermorn, xx

This post makes me feel lucky that it's sunny but still very cold up here in the north of Scotland. Not t-shirt weather at all - I had to get my gloves on last night while waiting for doors to open for a concert. Gloves in June?! I have Raynauds so am finding the lack of warmth up here hard going. However I wouldn't exchange it for the kind of heat you are experiencing - something in between both of us would be very lovely.

I don't have RD in the way you describe now but when I did I gravitated to warmth always and now, with the trouble in my jaw and mouth I'm using a warm wheat bag on my face to ease the neuralgic pain. No suggestions but enjoy your siestas if you possibly can and try to keep cool. Prednisolone 20mg is propping me up very well re pain.

Twitchy x

Azabat profile image
Azabat in reply to

Twitchy, I think we need to find a happy medium! We could live on the coast, but it rains all winter. The Rpckies are cooler in summer, but brutally cold and snowy in winter. Hawaii perhaps? I'm thinking about asking my rheumy about a higher dose of prednisone - every time I start to taper down the pain goes bananas. I know I'm waiting for the leflunomide to kick in, and she probably won't want anything to mask possible improvement. I'm sure glad you're get some relief, though (finally!). xx

-Bats

nomoreheels profile image
nomoreheels

I know how you feel Bat. My friends in the UK used to say that I must be so much better in the heat but it's not the case is it & it's so difficult to explain without sounding ungracious that it's not as beneficial as it would seem. Oppressive, certainly is the right word. It's just something else to contend with & seeking shade is a must, then there's the nighttime to come, even more oppression. We used to walk on the sunny side of a street when there on holiday but living there we habitually walked on the shaded side. Forest fires were frightening, especially when they're close to where you live so I really feel for you there. It doesn't take much for them to happen when everywhere is tinder dry.

Siesta, yes necessary. Enjoy yours, rest your aching body. x

Azabat profile image
Azabat in reply tonomoreheels

Oppressive is *just* the right word! This is my first summer after dx, and I honestly expected it to be better. (last year I was just sort of achy and tired all summer). It's still getting fairly cool in the night, though that won't last all summer. I'm back on cannabis-infused honey (doctor's orders, here) which helps more than codeine did. Striking the balance between manageable pain and being too drugged to think is taking a little work, but I think I've about got it. And yes, shade is my friend. I've always burned fairly easily (my Poppa was a ginger, and I got the colouring without the beautiful hair), but this is just silly. Ah well, time for lunch and a nap before I brave the heat! xx

Smiler53 profile image
Smiler53

I'm the same Bats, as soon as I go out in the sun, it's instant burn, so always use high factor creams and try to stay in the shade. I feel a right party pooper at times when everyone else wants to sit in the sun. So I always take a parasol with me too. I do get some funny looks but I don't care anymore. Also my joints really play up in the hot weather. People always say to me "I expect you feel a lot better now the warmer weather is here" Nooooooo! Sounds scary where you are bats. I hope you find some relief soon. X

Azabat profile image
Azabat in reply toSmiler53

I'm going to get a parasol as well, I think. I don't mind funny looks (there are advantages to blindness!) Kelly gets brown just by thinking warm thoughts, so he always wants to be in the sun, too. Ah well, between the sun sensitivity and the heat sensitivity from my anti-convulsants, I think I need to live somewhere in perpetual autumn and spring! It does get scary here when fire season starts, and especially when it starts early. We don't live on any forest boundaries, so we're pretty safe, but I have friends who were evacuated last year for 3 weeks. Everywhere a person lives there are risks, no? I have a membership for the pool, so I may move in there for the summer :) x

Smiler53 profile image
Smiler53

Autumn and Spring are my favourite seasons too! I just hate November, it's always so gloomy, damp and boring! I got my parasol in Malta years ago, it was beginning to look a bit grubby and tired, so I bought another one when we visited Medina last year. I know it's meant to be ornamental, but it does me! There's nothing like a pool when you feel overheated - bliss. X

earthwitch profile image
earthwitch

If its any consolation, I don't do well in heat either. It absolutely wipes me out and makes me really achy, as well as me ending up with rosacea flares and extremely sun sensitive skin, to the point where lupus has been investigated. I actually do best at a temperature around 16-18 degrees Celsius, which most folk would not find summery at all, but in the very north of Scotland its just about right for me.

Azabat profile image
Azabat in reply toearthwitch

Earthwitch, that actually sounds fine to me, too. Perhaps I need to go be Canadian in Scotland, eh? :)

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