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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Merry Christmas and a PAIN FREE New Year

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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

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. 🙂

MEOW: My cat is the best medicine

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Ok, sure her purring and weight isn’t ideal on a bad day where even my clothing can hurt my poor body, But I love my little girl and the comfort that she gives me is worth that extra bit of discomfort. I’m in pain anyway!  On a not so bad day, I feel blessed that I am “worthy” of her cuddles. Yeah, any one with a cat knows what I mean by that! On nights when I’m flaring Molly will come to bed with me or climb my window screen until I hobble out of bed to let her in. She has taken to sleeping next to me rather than on me since I’ve developed CRPS. On a bad day she sticks by me and has taken to leading me to the couch and waiting for me to sit before lightly climbing on. She seems to know before I do that I need to rest. Although, I do think she loves having me there to nurse her all night long.

IN THE MEDIA: Chronic Pain, 7.30 South Australia

“It is a common condition, patients suffer from it, doctors treat it but Medicare doesn’t acknowledge it. It’s chronic pain. But what causes it and why do traditional drugs seem to have little effect?”

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This is the introduction to a news story that was shown on our state edition of the Current Affairs program 7.40. Its really exciting that this show has done a few stories on Chronic Pain already this year and although not exactly about CRPS, It still relates back to the treatments and the health system that I and many other Australians rely on.

I posted about the first story here. Australia’s Pain Epidemic

This story by Mike Sexton and shown on 7.30 South Australia, on Fri, 21 Feb, 2014.  Duration: 6min 13sec. It starts as stated above and then leads into some horrifying, yet unsurprising statistics that Medicare (Australia) has found that up to 5% of patients in Gp’s clinics are seeking relief from Chronic Pain. It again mentioned that most Australian’s suffering from Chronic Pain wait 2-3 years for a placement in a pain treatment facility. This leads to Gp’s prescribing more and more opioid pain Medications and leads to dependency. Clearly there is a cycle here that must be broken.  I’m hoping that the Website will post a manuscript to this story as it has done in the past so that I can post it.

One exciting thing bit of information that I learnt from the story is of a local research project happening right here in South Australia at the Bionomics Facilities in Hindmarsh, is a focus on Ion channels and their role in Chronic Pain. The story went on to report of an investment of 170 million dollars (Aust)  being made into this study by Merck & Co. That is pretty exciting really. I went onto the Bionomics Website and found the following:

“Bionomics has entered into a collaboration with Merck & Co. to develop a novel oral treatment for chronic pain. Chronic pain is a severely debilitating condition with a large unmet medical need. Current analgesic medications which include anti-epileptics, anti-arrhythmics, opioids, NSAID’s and anti-depressants, are either ineffective, associated with a range of dose limiting side effects or have the potential for abuse and addiction. Our novel treatment which is expected to deliver greater efficacy and safety than existing pain medications is directed towards an undisclosed target that has been strongly linked to chronic pain in humans.”

www.bionomics.com.au/research-development/pipeline/cns-central-nervous-system

Well Im off to investigate further and see what else I can learn about this trial and even if I can participate in any way. 🙂

 

When Creina, Jim and Jezebel came to stay!

As much as CRPS/RSD is simply a big load of BS, the thing that I am so grateful for I the friends that I have made all because I have this horrible nerve disease. It’s easy to get bogged down in the bad stuff, but there is no denying that because of Facebook, I have met some awesome people that have been so supportive. For me the day I joined my first FB group was the day it all got so much better.

One of those people is my good friend Creina, from Adelaide. She was one of the first people with CRPS that I met and we have become great friends. She is at the beginning of a huge trip around Eastern Australia with her very supportive husband Jim and sweet little westie terrier, Jezebel.

One their way through to Victoria, Creina, Jim and Jez stopped off at our place in the South East for a few days to enjoy the cooler weather, go to the beach and relax. Well that was the plan anyway! We managed a walk on the beach the afternoon they arrived and then it rained until they left. So much for summer! It was so cold that winter clothes came out and there was certainly no swimming. We were really looking forwards to soaking in the water and taking in all of the magnesium that we could. There is always next time.

What the weather did offer was the opportunity to have a look around the town and take it easy. A quick breakfast and then a look through the shops. This included shopping in the chemist for pain killers and other options. Lol, that’s something only a person with chronic pain can relate to.  We walked the two dogs around the town in between stops. Gemma and Jezebel became fast friends, it was so sad for them when it was time to say good bye.

The thing that I loved about having Creina here, other than having her here…  was that we were both in the same condition and were able to do things without trying to keep up. It was fantastic. We just plodded along at our own pace. I didn’t have to drag myself around in pain because she understood when I needed to stop. I have found that even though others make allowances, it still ends up as more of a compromise and I crash in no time. I am learning to say no though.

Sadly in no time, it was time for them to head off on their trip. They are traveling in a Winnebago and towing a beautiful yacht that they will sail whenever they can. It’s really inspiring to see someone with CRPS achieve their goals and overcome such debilitating hurdles.

Have fun guys. xxx

All photos by C Krause

1, Creina and I

2, Jezebel and Gemma at the beach

3, The Big Lobster (aka Larry), Kingston SE, SA