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

walking is nice to be able to do!!

Well I have had an interesting week! After last week’s activities I thought that I had gotten away with all the horrible flares etc that comes from doing anything. But no! I wasn’t that lucky and by Monday I suddenly was not able to walk. I could only just stand and kind of get around in a kind of pain that I hadn’t felt before. It was kind of like walking on broken glass but your legs wouldn’t move to get you safety. It was just too painful to stand, let alone walk. And if that wasn’t scary enough my dystonia, spasms and cramps had gone into overdrive and I was constantly felling like I Was about to go into a seizure. Oh, and I can’t forget my sudden inability to pee and …. I’d sit there ready to go and my brain wouldn’t send the message to let anything out. Basically I was “crapping my dacks” (no pun intended) because this flare felt like it had come from nowhere and was going to leave a permanent mark on me. I’d had days to recover from having my 4 year old cousin stay with me. I’d had the little flare to pay for that one. S really this felt like a cruel blow that had me feeling fearful of my future.

The only time I left the house was on the first day when Mum came home from work and told me I was going to the beach to soak my body in the ocean. The horror!!! Lol. So off I went, I managed to get my swim suit on by myself and get myself back to the lounge to wait for everyone else and I was stuffed. I really didn’t want to go. Sleep was the better choice for me. But mum dragged me out anyway. Lucky that we get to park on the sand here and it was only about 20 metres to the water. I was really touched when she helped me walk out to the water and into the sea. Mum surprises me all the time with the way that she helps me. Once I was in water over my waist I was feeling good and for the next hour everything was fine I love the way buoyancy looks after you. Funny story! I couldn’t do my bikini top up tightly because it hurt too much. Normally I like to be strapped in tightly. I didn’t know that boobs float. Haha!!! They really do and I thought it was really entertaining. At least I wasn’t going to drown. Lol. The beach was great and cooled me down, gently massaged me and gave me a big natural hit of magnesium. I was walking a bit better after but only for an hour or so and I went down hill again.

I will say that I’m so happy that I am in the half way area of my ketamine infusion cycle. The extreme CRPS/RSD pain that we all know so well was not a part of this flare. Not sure how I would have survived this one if I did have the pain. What pain that I did feel was cramping and shocks from spasms etc. My body still ached and hurt to stand and use, but it was only a small fraction of what I could have experienced. I’m really thankful for my wonder drug and that it helps me like this.

Lucky for me this only lasted 3 days and today I woke up able to move my stiff legs and only needing to wait for my morning meds to kick in before moving around. I’ve done some Physio today and loosened up my legs and even went to mums café for afternoon tea. I’m feeling really lucky because I didn’t see my situation improving. This was the kind of flare that hits you hard and feels like the next level of the disease, Scary stuff. I’m really grateful to almost be back to normal. I do think my disease is still progressing at a fair rate but this would have been too much.

To celebrate my legs getting back to work, I think an appropriate song is in order!

Hope your all well. xx