Eliza, i have been more critical in voicing my frustrations with access to equipment and services and all i have recieived here is support and understanding- its not CP but certainly related issue. Grappers is right that our health system is struggling- i am sad to say that i have witnessed the effects of funding shortfalls not just in my life as a person with disability and CP but also in my life as an RN! But i do think chronic conditions like CP havve the additional issues partly because of funding shortfalls but also because of lack of understanding by the average person about what CP is and how badly it can affect lives.
when it comes to dealing funds for services they are past the point of being bale to consider the effects of CP on or lives to a certain extent- i think they are working on the same kind of system as medical triage- the conditions that are the more lethal more acute will get the bigger cut- with the hope that then the rest the ossues can be dealt with later on but sadly when there is a shortfall it means the rest of the chronc conditions have to take whats left over- thats where our second issue bites us so much - the sheer ignorance by many over the issue of CP- people just do not under stand, then add to it all the negative judgmental stuff when it omes to things like Chronic Back pain. My original leg injury dates back to 1983 but i was terrified of being labled as a chronic pain patient and because of that i did not push for referral to a pain unit and was not referred til about '95 and that was because of the way i had seen patients with chronic pain treated, even by people i general respected- things like if a cp patient had some kind of surgery, not even related to the original pain, they would have orders for pain control and i saw my own colleagues withhold medication well past when it was asked for because "typical chronic pain patient, they need to toughen up" and i experienced this myself. and i am sure you guys have seem or experienced this kind of poor treatment. well, when funds are so scarce om tjhe health system with so many worthwhile groups and conditions in the same kind of situation- this kind of lack of community understanding and support does not help us! But stoically put up with the situation does not help either- so we need to take every chance we can to try to get people to understand- we are not bludger, we are not compo cheats. slip and fall scam artisans or just out and out prescription drug seekers! that we are people with major problems that makes our lives challenging and also has a negative impact on relationships and our loved ones!
so expressing frustration is one of our few options to get the message across, hopefully guests visit and get information, find out about the difficulties in getting access to treatment- (and that does not meant just a prescription for antidepressants etc and little by little we might be able to break down some of the negative stereo types so that we can get some more community support- sadly the days of being able to be patient and be able to be sure that eventually your turn will come are definately over in most of the health system- it is a case of squeaky wheel gets the grease! so i am sure that as long as we are not being defamatory or crossing the lines that may damage our community this is a safe place to voice our frustrations- its better than putting a fist through the wall!
I just had my telephone interview and I start the course on the 8th of April. I'm very excited. :cheer:
Well done Di! Not long to wait either. We will all be waiting to hear about the course and how you are going 🙂
Mary
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
I was telephoned today and I was randomly allocated to the pain course group 3rd June...
She said the questionnaires start on the 8th of April.
I'm very Happy! Thank-Goodness...June is a wee bit off, but I don't mind. 🙂
Yes it will, thanks Mrs S...
Hugs to you too... :kiss:
Hi Di, I also start the course on the 8th of April.looking forward to it 🙂 I had the phone interview today with Melina,she was great and told me everything I needed to know.went to see Jimmy Cliff tonight, it was a really good show, but was a standing up event, so back and knees are killing me, but a least I got out and did something with my life for a change..the did three encores and everyone seemed to have a really good time.hope everyone is doing ok out there B) , Tom
I'm so happy for you both Tom and Eliza. That's made my day. :cheer:
I got in as well, I also start on the 8th so were in the same group.
🙂 🙂 🙂
“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.
Congratulations illeatyu! So good that 3 of you are now in.
Mary
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
Mary
Thanks, I must admit I'm very excited about this, it will be good to have some more tools in my box of tricks.
Ricky
“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.
You are SO right. The more tools the better. That way when one doesn't work, you can try another 🙂
I expect that you may be given quite a few tools. I can't wait to find out about it!
Mary
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
Thanks, and thanks to Di for putting up the link.
“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.
Gee, it's good quite a few of us got in, the lady who rang me ( I'm not mentioning any name here) told me there was 80 applicants so its taken a while to get to everyone. She said there are a number of different groups though we all start the questionnaires on the 8th April though my course which was randomly picked by the computer starts in June. I must admit I was a little disappointed when she said that however, she said by then the advantage will be that they will of fine tuned it with regard to the feedback from the other groups. I'm just happy to get in I told her because I want to try and learn how to self-manage this horrible never-ending back and nerve pain. 👿
I've had another horrible day and afternoon in bed because the pain is not letting me have any quality of life, even with the new meds I'm on they aren't helping it. I'd rather not take anything, I'm just so sick of medications... 👿
I wish I could be more positive though that's just the way it is ATM. I've booked back into physio to see if that might help, I haven't had physio for about 14 months now. I only went for about 8 months after my spinal fusion and she said its not helping you, so I stopped and just continued with hydro-therapy. I haven't done a thing today to have a flareup so I don't understand this anymore.
I'm just happy to finally hopefully get some tools to start living... 🙂
Yay.... Well done Ricky :cheer: and you're very welcome, thank you. 🙂
You're right Eliza, the group you're going in will have the added advantages from the previous trial groups no doubt. 🙂 It's all a great opportunity and well worth the wait. I'm sorry you're feeling flat and down.
Sending (((Gentle hugs))) strength and good vibes to you. xo
Congratulations to all those who are doing the online course, I hope you get as much help and tools learnt as we doing a normal course in the big cities, why should people in the bush so to speak miss out on what is a totally life changing event in helping control pain.
Don
