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.
“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?”
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.”
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. 🙂
Pain is no fun! Clearly, It really hurts!
How much more fun is it when you compare your pain to Lego?
I found this pain chart recently and thought it was the perfect tool to make things just that little bit more cheerful. I believe we have the option to make the most of a situation or to just be miserable about things for the sake of it. But being miserable kind of sucks so who wants to do that! Adding a little cheer to these situations eases the misery and is by far the better option.
Today my pain is so far sitting at a 6/10. My leg is bloody sore and getting worse, but I’m choosing to ignore it by distracting my self with fun things like this chart. I’m hoping to get my pain under control so I can go out and play in my veggie garden for a while. Sunds borring? two words: Fresh Strawberries! lol. That’s what I look forward to each day, even if its just a little wander around admiring how things are growing. I hope you also have something to motivate you each day. xxx
The Doctors 10/2013
Facebook has been a buzz with the 3 part story about this woman with a severe case of RSD and is full of great info one what RSD is and what it does to us. It also looks at the woman’s story on living with the disease and advice given to her on the diet that she needs to assist her body lower inflammation.
The first part of this film is what all of our family and friends need to see to get whats wrong with us. Im just trying to pin a few of them down. lol. I posted it of Facebook and as suspected most people ignored it, but there was a few that watched it and in come the sympathy and horrified comments. lol. No my limbs do not look like that!Im having trouble loading the footage onto the post but ill work on getting it there, but for now on the above link is to the story on the website for the show
Last night I was switching through the channels on the TV and come across a Documentary on pain called The Secret Life Of Pain, made in the UK by the BBC in 2011. I decided to watch hoping to learn something and was hoping for a mention on CRPS. I wasn’t disappointed at all. The film talks about pain in many ways from the woman who feels no pain at all (I was a little jealous lol), to another with CRPS in most areas of her body. My mum was also watching with me, so as the CRPS girl was being introduced I was saying to her that I was sure she had CRPS and then they said it. It was Awesome to hear those words and to have a member of my family see what I was going through, through someone else’s experience. It was also a great insight into pain in general.
I originally posted the full film on this post, however it is no longer available through that link. So here is an alternative way to watch the Docco in full.
Hope your having pain free days. 🙂 xx
Not only do I suffer from CRPS but dare I say it, I’m a vegetarian. There I said it please dont think any less of me. lol. Anyway I was just thinking back an a funny thought occurred to me recently that is to do with both CRPS and my choice of diet. There are many people out there who have misconceived ideas of how my not eating flesh effects their life and throw idiotic, generic and un-thought of remarks my way as if I have never heard them before. Anyway my pet hate is this one, probably because I hear it the most.
Annoying Person: How about all of the vegetables that you are murdering, what about their suffering and pain?
Me: Well actually vegetables do not feel pain because research has shown that they do not have a central nervous system and therefore can not feel pain.
Now normally Annoying Person would be stumped on this one but all of a sudden I find myself thinking “THOSE LUCKY BASTARDS!” lol I wish i didn’t need a central nervous system! But then some Vegetarian would probably feel justified in eating me!
With all the medication and pain killers that we need to survive CRPS, I worry that there is a negative effect on out bodies and what it will do to us long term. One thing I like to do is make yummy, healthy juices that give me a burst of vitamins and help cleanse out any toxins. I wouldn’t say that I am an avid juicer. I tend to juice a lot then not for a while, but I do know that after a few days of it I feel fantastic.
I love growing my own food and its awesome when my juices come from my garden. Today I picked lots of spinach, celery, pea shoots, leaves off of my broccoli and cauliflower plants, parsley and beetroot leaves to make a super healthy juice packed full of greens and all the goodness that come from them. But of course I sweetened the deal a little with some apple and carrots. I love the way fresh juice fills your tummy up and keeps you full for a long time.
Fresh from the garden and my helper, Gemma
Of course I use the pulp from the juicer for compost. Its part of my sustainable philosophy to gardening and eventually what I take from the garden will go back to the soil. Plus with the energy I have from juicing I will have more energy for pottering around and caring for my plants. If only it gave me the strength to dig some new patches this weekend. I think I will need to enlist some help!
Have a great weekend everyone. xx
One of the worst parts of having CRPS is the insomnia. When I’m in a pain flare is when it’s worst. Last week I didn’t sleep for 3 night’s straight and by the end of the 3rd day I was a mess. Apparently where the cranky nerves run up into the brain, it causes certain areas to get just as angry. One of these is the sleep area of the brain. It’s like my brain knows I’m sooooo tired, but it won’t flick that switch.
I won’t write too much tonight. Oops, its 4.45am so not night after all. But my fingers are just too cranky and not liking me typing. So Ill add a few funny things I found on pinterest to amuse you. They made me smile, but then I understand. I guess in an hour I’ll get up and walk the dog to the café for breakfast….If my feet allow me. Lots of coffee!!!
I haven’t ridden my horses much over the past few years. They have all aged quite a bit and are now considered seniors. My oldest and beloved Ernie left us back in January at the age of 25 and the other two Doozy and Angel have now hit 20. I’m starting to look for “senior” feeds and finding ways to keep their older bones warmer over winter. The thing is they are not old for their age. Ive had both for nearly 10 years and they have lived well. in the past few years they have been more of a pet than a work horse and the most work they have done is mowing the grass in the house paddock.
Seeing as my health has forced me back to living in my home town and with my parents, I have had the pleasure of spending more time with my boys and I have been feeling an overwhelming need to not just start riding again, but to train and one day compete in dressage.
Here is the catch! I now have a neurological disease called Reflex Sympathetic Dystrophy (RSD) and while im not crippled at this stage, I’m also not as able bodied as I once was. I’m also still having my neurological symptoms looked at and the possibility of a multiple sclerosis diagnosis is hanging over me. At this stage things that will be a hurdle for me, besides chronic pain, will be weakness in my hands and legs and days with my hands having constant tremors and reduced movement.
As far as my horses go, they are getting too old to really compete with. They are still able to be ridden, but to compete I would need a much younger horse. I’m not really interested in Riding Angel, while he is a dream to ride; he has a habit of rearing when things get too hard. I really need to consider my safety with him. So that leaves me my boy Doozy. He is my reliable one and I trust him to take care of me. However, over the past couple of years he has developed intolerance to too much protein in his food and he now has a few problems from it that we need to manage. Despite this, he is going to be my trusted steed and get me going again. Ill consider him my school horse.
On the positive side, horse riding is great therapy for people with neurological problems. There are lots of people with MS who ride as part of their therapy and I’m so excited to have the excuse to train again. I’m not looking to compete until I have a new horse and feel I’m Riding at a decent level. Really I just want to ride and be with my boys. At the end of the day, you need to make the most of what you have.
So far I have just started lunging Doozy. I want to get him listening to me and build up some top line before I put a saddle on him. I also want to wait until I get one more check from the vet to make sure he is good to go. I also want to talk to my physio about it before I get on. Really it’s tempting to just hop on, I hate lunging and so does Doozy, but I think this is something I need to take my time with.