Summer Survival: CRPS & The Heat. 2019!

Oh lordy, it was hot this summer. So hot that here in Adelaide records were broken. We had a day that was 48.6C (115.9F) freakin degrees. That day was so extreme that it made all following 40C (104F) days seem not so scary. It was Adelaide and any Australian capital cities hottest day recorded. Port Augusta, 300km to the west even hit 49.5C (121.8F). In short, it was crazy hot this summer. So add to that having CRPS to deal with in the heat of this summer, it wasn’t a great one for me.  My house is well insulated and was cool most days, but we did have a few nights where I moved outside and slept on a blow up mattress with my cat and my housemates bunnies so we could all cool down.

Besides the usual CRPS shittiness, anytime the heat gets near 40C my body shuts down and I am basically a vegetable until I can cool down and function again. Also, towards the end of summer and the lead up to my recent round of Ketamine infusions, I spent most of my time sleeping through some shocking fatigue. Just an hour or two of being out of bed and doing something gentle was enough to knock me out for a day and a half to recover. Its such a crappy feeling when you literally sleep through life in general and its suddenly a month later. But lucky it was only a month and I still got to enjoy the rest of summer… Of course though, my month of fatigue just had to coincided with the Adelaide fringe… FML! I did make it in on the very last nigh to celebrate my birthday and I was pumped (ketamine the day before helped) and then bummed because it was over for another year. But one night is better than none.

So here are some of the ways that I coped with summer this year.

1, A FAN. When I was awake, I spent a lot of time on my bed with a fan on me, which isn’t ideal for CRPS and my skin sensitivity. But as long as I could either cover any problem areas like my feet with  a sheet, or point the fan towards the wall near my bed to create air movement without the direct hit, then it was cool… well cooler anyway. lol.

2, A POOL. After talking about it, I was kindly girted a 10ft pool by my amazing landlord after I let people from their bank come in to value the house without warning. I was so grateful for this. On hot days I would go out and sit in the pool to cool down and read. I also put a bag of Magnesium bath salts into the water so I would get some added absorption goodness as well. I’ve talked about the benefits of magnesium a lot on this blog, so have a look here if you haven’t seen it. The cool thing about this pool is it was only $50. It comes with a filter to keep it clean as well. Really any type of pool works if you can handle it. Even a bath or cool shower works. The main thing is to stay cool. In the end, this pool was the best $50 I didn’t have to spend. The water bill on the other hand…

A badly photo shopped picture of the type of pool I have.

3, NETFLX. After not being interested in getting Netflix despite my housemates insistence that I get it because its the best, blah blah blah…. I went in halves with an account with my sister. I’m so glad I did because I was running out of things to watch and I did expect to spend so much time stuck in bed this summer. So even though its not keeping me cool, it’s keeping me from going insane.

4, COLD WATER. If your like me with your CRPS, holding a hot bowl of food or a mug of coffee, you over heat from touching the hot surface. Its so annoying. Well for me, its the same effect with cold water to cool me down. So there are two things I have done this summer that have really helped. I keep chilled water in my fridge and fill my water bottle up with it so I can use it to cool my body down, just by holding it. The other is having a wet face washer or hand towel. by hanging it around my neck or wiping it over my skin, I can use it to keep me cool. I did this on the really hot days and it did help a lot. Its great if you put it in the freezer for a few minutes to get a bit of extra cool happening.

5, PLACES WITH AIR CON. Leaving the house on a hot day really isn’t ideal. But if you have to then do it right. Places like shopping centres, cinemas and museums are always cool options on a hot day. So why not turn a potential crappy day into a good one where you can have an adventure as well. I did this a bit during summer on the rare good days. Mostly it was going to shopping centres and then hanging out as long as I could. I went to the cinema a few times as well. The supermarket over the road from me is always so cool, it actually shocks my body and can be a bit too much for my nerves to cope with. Getting to places was an issue for me as well. I don’t have a car and often walk as much as I can. I do use public transport but its not free so if I have the time and ability, I normally walk to add in some exercise. But, in the heat its worth the cost of a trip to have the air con as well.  If I plan the trip for between 9am and 3pm then the ticket is only 90c for me. I can catch the bus across the road from me, and go to Semaphore for the afternoon. Its a longish trip but the cinema is really cheap ($9) and cool. Plus if I want I can wander the shops, get an ice cream and put my feet in the ocean. Great for days when your able to be adventurous. The dangerous part is the plant shop I walk past (as if I don’t go in. lol.) on my way to the train. Its my favourite plant place in Adelaide. 🙂 Plus they have Parrots, chickens, and an Alpaca hanging out there. Awesome!

So here is how I got through this hot hot summer. It wasn’t pretty, but I survived!

How do you get through the hot days?

 

 

 

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SUMMER: Surviving the heat with CRPS

I love summer here in Australia but now that I have CRPS the heat really kicks my ass! Today is a scorcher and I am hiding away indoors with the air-con on. This is my second summer with CRPS. Well it’s actually third, but the first one I was only having minor symptoms, hadn’t had a flare and didn’t know anything was wrong until towards the end of that summer. Last year was my first full summer and it was a hot one. I remember a full week of days above 40deg. My mum actually helped/half carried me into the water at the beach one time as I couldn’t walk or hold myself up. Luckily we can drive and park on the beach here so it wasn’t far to the water. After 20min I was good as gold. Well kind of!
We haven’t hit 40 deg yet this year, but it’s the first day of hot weather we have had and I’m right back there again. I hide away inside all day and hopefully sleep right through it and be up at night when it is cooler and after my body had been soaked in the ocean and cooled. That’s where we will be heading late this afternoon. Straight to the beach.
So I was thinking that maybe I could compile a list of things that we can do to cope with the heat. This is what I have so far.

·         Stay cool: Do whatever it takes. Sit in front of the air conditioner, have a cool bath or shower, Go to the pool or beach to soak your body, put a soaking wet cloth around your neck, make sure any car you’re in had a working air-con. Whatever it takes. Even if it’s having a fan on and a sheet over you to stop the air from upsetting your body.

·         Go to the Beach:If you’re lucky enough to live near to the beach, it is going to be your saviour during a hot summer. I tend to go later in the afternoon when the beach is quieter. The movement of the water gently massages your body while it cools you down to a level where you can cope. The magnesium fix that you get will also help with your pain and other symptoms. Plus It’s fun to go to the beach, move your body around and you get outside and get some Vit D. Always take someone with you tough, so maybe make it a bit social. It’s a great way to spend time with a loved one. It’s also a good place to work on moving any part of your body that isn’t doing so well. It’s like Hydro therapy and really helps if you’re able to cope with being in the water. Even if you just walk along the beach or stand in water an inch deep. Whatever works?

·         Stay Hydrated:This is a must. If your hot your probably sweating and loosing fluids from your body. The extra pain meds you probably need will also be messing with your body and drinking lots of water will help you cleanse your kidneys when they are working harder in the heat. Really the body can’t work without being hydrated. I carry a one litre water bottle around with me and try to fill it a couple of times. Usually in the heat I will have about 2-3 litres. But don’t overdo it. You can do a lot of harm to yourself if you over drink. Some days I feel that I need something else to satisfy my thirst and water isn’t cutting it. I try an electrolyte replacer. Usually I will use a product that is meant to be for when you’re vomiting. Or I will just get a yellow powerade. I always have yellow because I am not allergic to the crap they put into it. There are plenty of recipes for making your own healthy energy drinks. If you’re interested, here is a link to an article with recipes.

·         Move your body:Sitting around staying out of the heat can lead to us CRPS sufferers seizing up. That is not a good thing. Maybe do some physio, Pilates or use some sort of exercise equipment. You don’t have to overdo it, just move. Maybe wait until it cools down and go for a short walk. I like walking on the beach. It’s relaxing and if I walk very shallow water it soothes me feet. Even watering the garden in the early hours or in the evening is moving your body and keeps it happy. I find that if I don’t move, I hurt more.

·         Make sure you have a good supply of all of your meds:You don’t want to be caught out with no meds and have to go out to get them. The heat will punish you.

·         Find something to keep you occupied:I try to sleep a bit, but I can’t sleep all day. Maybe have some DVD’s or TV shows to watch online. Have a craft, art, make a blog, read a book. Whatever keeps you busy.

·         Ice cream: go on, you deserve it!

So that’s all I can think of at the moment. I may add to the list if I think of any others. The main one though it to stay cool. Do you have any suggestions? Let’s make this list grow so we can all benefit.
Stay cool people. xxx