Insomnia: We are NOT friends!

Simply put, Insomnia sucks!

That statement alone could be all I write here and this post would be complete. But I feel like talking about it a bit so here goes.

For me I either have Insomnia or a I sleep non stop. I’ve had a few stints where I slept normally and it was lovely. Right now its 5am and I have been awake since 3am so really the 3 hours of sleep I’ve had is a good night for me. My longest period of no sleep was 6 days. I was a mess at the end of it. After 3 days it starts to mess with your head a bit and by 6 you feel insanity creep in and your a walking zombie.

I have read all the literature on how to get to sleep and create a sleep positive environment and for me it doesn’t work. Simply by laying there trying to sleep, I will not fall asleep. I get frustrated too easily and it just keeps me awake longer and longer. It just doesn’t work for me, because damn Insomnia keeps getting in the way. I have found that if I am going to sleep then my best chance is to distract my self and the insomnia until I get drowsy and drop off to sleep. To do this I might read a book or on my phone. Watching a movie or Netflix is great as well. These are my go to distractions because I can just drop off when I need to without my brain/insomnia realising what’s happening because its too busy relaxing to a few episodes of Brooklyn Nine-Nine. (One of the best show’s ever!) I have to say that even writing this is relaxing me enough to make me drowsy and I mean that in a good way. I may get a little nap in before getting up. But I better stop talking about it in case good ole insomnia realises what’s going on.

I do worry about what this lack of sleep is doing to me long term. I always see articles about what lack of sleep can do to your health and I worry it gets in the road of the long life I had planned. Even now I am noticing the effect it has son the way I look. I have permanent darkness under my eyes and I am finding that I need heavier makeup to hide it when I don’t want to look haggard. I am even finding a few grey hairs creeping in and I put it down to being worn out. So it this is happening on the outside then I worry about the inside. Perhaps this is something I need to work on improving.

Anyway, Mini rant over. In short I wish that insomnia would take its self off somewhere else and I might try for a little more sleep.

Sleep well people. 🙂 Thanks for reading.

 

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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?

 

 

 

GARDENING with CRPS: I’d be lost without it!

 My life before CRPS (Complex Regional Pain Syndrome) was mostly
different to the one I live now, however in the year before, I started a small veggie
garden and loved every part of it. Especially that summer. My favourite memory
of that garden was made of Flat breads with fresh tomatoes, spring onions and
lemon thyme. Put under the grill with some sea salt and olive oil. YUM!! Now I
am really hungry… Anyway I didn’t realise just how crucial that first garden
would be for me. Not only did it introduce me to heirloom tomatoes but it
sparked a passion that would save me in so many ways.

Nectarine and Basil Jam from my first garden. YUM!

Nectarine and Basil Jam from my first garden.

The next summer I was facing a pretty dismal future. I had survived
a massive burn injury, my beloved horse Ernie passed on (It still hurts so much)
and just when I thought I was able to move on I had my first CRPS flare that
made sense of all the strange symptoms I was having. Suddenly this thing was

spreading through my body and I was losing control. Despite it all I just naturally kept gardening.

It hasn’t been easy. I get frustrated when I can’t do things or I
do them anyway and pay the consequences later. But then I know that each time I
go out there, that that night and the next day and maybe even the day after,
will be “off days” for me. But that’s ok because it’s better than nothing and I
would probably be I pain anyway and at least I enjoyed earning it.

Artichoke that I let flower. Amazing color

Artichoke Flowers with the most amazing colour

Emotionally, my garden is my saviour. I am not sure if I
would be here now without it. It gives my head the peace and space it needs
when I am worried or feeling helpless. It gives me hope when I am having a bad
night because in the morning I will be able to hobble around my beds and just
look at what has changed since last time. It’s my distraction from the crap. As
it is on the nights of researching how to make my garlic grow better, as I am
trying to ignore how hard and painful my super cosy bed has become. I have read
articles about how a chemical in the soil can have the same effect on you as a
typical anti-depressant. I really think that they are onto something there.
Perhaps it explains why after a few days in bed I feel depressed like something
is missing. It’s my garden and I need my fix. Over the past 3 years the amount
of gardening that I have been able to do has varied, but I am always thinking,
researching and buying seeds online. What would I do without it?

Physically it is my own kind of Physical Therapy that keeps my body
going. When I had my first flare, my left hand instantly froze and I lost use
of it for a while. It was the slight and gentle movement of picking cherry
tomatoes that slowly got it moving. I know in my heart that my body has benefited
so much from being outside and in my garden. Even just pulling weeds keeps my
arms moving and stops my muscles from wasting. My left arm might not do as much
but the important thing is that it does what it can.

Cherry Tomatoes saved my hand

My Cherry Tomatoes saved my hand in 2013

So far I have refused to get raised beds. Partly because I can’t
afford them and partly because it would feel like a setback for me. It did look
at one stage that I would be in a wheelchair and they were discussed. But for
now I really don’t feel that I need them. I am hypermobile in my hips and the
one thing I can do is bend over and reach the ground. So what was once great for
yoga now allows me to get down to my plants and I am quite comfy like that for a
while. If I need to I can sit on the ground or a stool to get to my plants and
so far I have only had a couple of issues where I have fallen and needed help
getting up. It’s the heavier work where I get frustrated. I can’t do it and I
hate waiting for help. I am learning to be patient and ask for help but I am
naturally independent and I had always been strong and able to do the hard
work. That has been hard for me to swallow

I know that I am so lucky to be able to still do what I can and I
dread the day, if it comes, where I can’t garden any more. I am not sure how I
would cope. For now, I am just enjoying being out there when I can. Being sick
has made me appreciate the small things and all. I know, what a clique. Mostly its
hanging out in the garden with my girls. Gemma (dog), Molly and Moggs (Cats),

Plus all of the cool animals and insects that have moved in since I
turned the orchard organic. Through gardening I have also met other gardeners
and built a little network of people to share knowledge and spare plants with.
I really love that I can provide food for my family and friends. Especially for
my parents at home and my Mum at her Cafe. I supply her all the herbs and greens
that she uses. After all they took me in when I got sick. This is my way of
contributing and it means the world to me.

gemma_zps2e6df28b

Gemma: Top dog in my garden and she knows it!

So that’s me and my gardening with a disability. To end this post I
want to leave a quote that I think sums it all up.

 

“To plant a garden is to believe in tomorrow.”

― Audrey Hepburn

Also posted in my other blog Grow To Heal

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

The Sweetest Xmas Gift Of All

I hope you all had a wonderful Christmas, surrounded by loved ones and with low pain.

 My day was a quiet one. We had lunch in Robe, S.A. with family and then home in the evening where I fell asleep on the couch.  It was the perfect day for me considering how exhausted I have been. We don’t really do presents in my family, except for the little ones. I am very close to my cousin, Alison who turned 5 just before Xmas and I love spoiling her rotten, so this was as good a time as any. I did not expect to get anything from her, but she gave me the best present that I could ask for.

 She gave me my gift and was so excited she had to help me unwrap it and before I could even work out what it was, she grabbed it out of the wrapping to hold it up for me. She had done a self-portrait and under her instruction, her mum appliqued it onto a patchwork cushion. I couldn’t believe it, I loved it.

Then she informed me that when I am having a bad day, I could lay down with the cushion and be able to cuddle up to her. My heart melted instantly.

So even though I wasn’t expecting anything for Xmas, I felt like I got the best gift of all.

I hope you all felt as special over the holiday season as I have.

*I decided to make this a pink post as its Alison’s fave colour

Things NOT To Say To A CRPS Patient: and yet they do!!

Ok, I know we all get people/idiots making stupid comments about our illness despite knowing nothing about CRPS/RSD. I have had quite a few myself. The one that outraged me the most was being told to “just get over it and move on with your life” WTF??? where is the button I get to press to turn this off??? I stewed on that one for a long time. I soon realised it was only me suffering. That person had moved on with her life two seconds after saying it. I will admit that I got quite negative towards this person afterwards and ended up cutting her out of my life completely to try and get past it. I’m not sure why this one got to me the most. It wasnt the worst said to me at all. Maybe that I was hurt that she had no empathy for me when I had empathy for her having a husband dying of cancer. I had been very kind to her as I knew her husband well and was deeply saddened by his illness and death. Maybe she couldnt see past her own problems. She could be a selfish person at times… ok she could be a bit of a b****! Either way she had to go because I needed to get past the negativity.

I was also recently told by a Dr that I am too young to be addicted to pain meds. My reply was that I am also too young to be in this much pain. FFS!!!

Today I came around this list of Things NOT To Say To A CRPS Patient. It was quite interesting. Its from a site called The Black and its RSD Links. A page that I am going to do some further reading on. Here below are a few of the things that are said to us. The majority of this list is things said by Dr’s. Im kind of horrified by this. Enjoy.

1. But you look fine.
2. Try not to dwell on it all the time.
3. It’s not a death sentence.
4. It’s not like it’s cancer.
5. Lose some weight.
6. Get more exercise.
7. It’s all in your head.
8. It’s probably the all the pills you’re taking that are making you sick and tired.
9. I’ve seen worse cases of CRPS/RSD.
10. You forget a lot. Try to pay better attention to things.
11. What doesn’t kill you will make you stronger.
12. Are you sure it’s not gout?
13. I knew someone who had something like that and s/he’s fine now!
14. It can’t possibly hurt as much as you make it seem.
15. Why are you on disability? Isn’t it your arm that’s sore?
16. I had a friend that had that. You need to eat a gluten free diet.
17. You’re going to become an addict.
18. CRPS doesn’t spread.
19. Does something like this run in your family?
20. RSD never spread the way you just told me.
21. An spinal block can’t give you RSD.
22. Why you have surgery in your back when RSD is in your lower limb?
23. Did you get all that for a simple ankle twisting? Gosh, you’re weak!!

To make this post a bit more fun, what would be your come back to the stupidity of some of these remarks??? Lets maybe keep it clean and witty. 🙂

Hope your all pain free. xx