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

Merry Christmas and a PAIN FREE New Year

merry%20christmas

Merry Christmas to all of you amazing CRPS sufferers and supporters. I hope that you have a pain free day and are able to enjoy your day with family and loved ones.

I know that the lead up to the big day can be quite stressful for us and that stress often leads to more pain.  So please consider taking it easy and pacing yourself so that you can enjoy yourself.

I’m kind of expecting to be in pain after not taking my own advice. OOPS!!!! I did also try to rip my little toe off with a door. It hurt like hell and was the better of my two CRPS feet. But, I will make the most of the day anyway and spend my day sitting with family and enjoy spending time with them, watching the kids open their presents eating more than I should and drinking my elder flower cordial and sparkling mineral water.

Have a wonderful Christmas. xxx

P.S. This is my fave Xmas song.

Wham: Last Christmas

 

FULL MOONS and PAIN

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Something that I noticed early on in my life with CRPS and Chronic pain was that my pain and other sufferer’s pain would always rise during a full moon. I’ve always found that a Full Moon effected my moods and sleep so why not pain? After all how do you also explain our pain being greater at night than during the day? Isn’t it equally plausible that the moon cycle could effect us in a similar way?  I did a little research and found that I might have been on to something.  I read how people with arthritis often experienced more pain around a full moon and that epileptic’s had more seizures.

I am in an Aussie and Kiwi Facebook group that chats on a daily basis and it was due to us all being sick with pain flares and my noticing it was always a Full Moon that all of us were online complaining of a shocking flare. So for the next few months I didn’t allow myself to know when the next full moon was unless we were all syncing our flares again. After all its only natural for women to sync up. Lol. Sure enough there was a pattern and over time even the non-believers in the group now whinge about Full moons. Especially one person in particular, who bullied me for my theory and is now the first to announce the arrival of a full moon as if it was him all along who brought it to the group. Oh well!

TODAY 14th MAY 2014 IS A FULL MOON HERE IN AUSTRALIA

Basically it’s all to do with Ions in the air that are either positively or negatively charged. During a Full Moon the air is positively charged and this causes a hormonal reaction in our bodies.

“Ions are floating in the air around us all of the time and have either negative or positive charges. Changes in their concentrations or in the ratio of positively to negatively charged molecules can have remarkable effects on plants and animals. It is known in science that ion depletion is the source of a wide range of human health problems, both mental and physical.

These air ions are important to you because if they have a high proportion of negative ions in the clusters you will feel lively, uplifted and enthusiastic. Too many positive ions in the clusters will have you feeling depressed, lethargic and full of aches, pains and complaints.”

Read the full article at www.quantumenergywerks.com

So what do you think?

I hope the Full Moon is kind to you. xx

TWO OUTTA THREE AIN’T BAD! Three pain conditions suck worse than yours!

“Got pain? These three pain conditions suck worse than yours.” paindatabase.com

Ha! Dont you love it when these lists pop up. Designed to make the average person feel better about them self. Sure if you have aches and pains, migraines or any other type of pain reading about these horrific conditions would make you feel better. Unless you suffer from two out of three of the condition in the list your reading, as I do! While I am used to seeing the standard lists with CRPS, my other condition rarely rates a mention, but here it is. and when you cover most of a list like this one, where do you go from there to make yourself feel better? Most of the time I think “at least it wont kill me!”

Here is how the article started but you can also read it in full here

Oh humans. We vile creatures, who feel better when others are doing comparatively worse. Rest assured, reading about these three painful conditions will not make you feel permanently better. But it might give you a bit of temporary perspective. 

no 1, Cluster Headaches: Check! yep I have these mean and nasty things that make me want to cut my face off. They come around every 6 months and make my life hell for anywhere from a day to a week. They are mean and I should probably do some posts about them on here. I have just had a bout in the last few days which is why I had been looking on line for info and came across this article. I woke up three days ago thinking that I had a tooth ache and then realised it was on all of my teeth on the right side. In no time at all it had spread into my ear, my eye, down my check and into my throat, all on the right side and all beyond intense. Lucky i also had a Doctors appointment on the first day so I could finally have it looked at. Yet the past three days have been a walk in the park compared to some of the attacks I have had. Lucky me!

No 2, Complex Regional Pain Syndrome, I dont really need to introduce this one. Most of us know it all too well. I did learn one thing though, That TV show House, The lead character had CRPS apparently. The article said to watch seasons 1-4. Ill pass on that. Perhaps that could go on my new “it could be worse” list. lol, Not my cup of tea really.

“CRPS is a strange condition because it can range from fairly mild to absolutely debilitating. I learned about it after watching House MD, in an episode where Dr. House got shot and forced himself into a coma using a hallucinogenic drug called ketamine. He miraculously wakes up pain-free for the first time in years. “

I will admit though that while “normal” people would look at this list and feel so much better about their own pain, I look at it and feel justified for getting annoyed at those annoying people who post on Facebook how hard they have it when they have it so much easier yet dont realise how much they have. Their health, freedom, ability to work, socialise, meet men, etc.  I guess ignorance is bliss and I may have also been that person once.  Thinking about it, if I could push a button and make all of this go away, Im not sure I would. My pain has changed me for the better as well as the bad and I’m clearly going through this to get to where I need to be. Really though, How tough am I??? 🙂

And I just gotta do it, ever since I wrote the tittle this has been in my head. 🙂 Enjoy!

PAIN SCALE: Here is a good one.

I found this fantastic Pain Scale the other day and thought that I would share it with you all. I do not know where it originates from but it is too good not to share. I have in the past found it hard to find a good definition of each level of pain. For my own pain diaries that I have been asked to keep by my Doctors, I have merged many together and made do with what I had. I like that this one justifies what is minor, moderate and severe pain.

PainScale

If anyone knows where this chart originates than please let me know. I like to give credit where credit is due. 🙂