Christmas

You should have drunk the rum and just taken balls in coated in coconut it would have helped with the pain.
Johnno

Merry Xmas All 🙂

The 7 P's ... ProperPriorPacingPreventsPainfulPartyPeople 😆

Illeatyu 😛 😆

Merry Christmas to all members of the Forum. Particular thanks to the moderators for their seeming unending ability to turn up every day and offer guidance. To the new members who thought there might be a magic bullet for chronic pain by joining do not be put off by finding otherwise. Sometimes having a VENT can do wonders. Sometimes you might pick up a bit of info that may help your every day, like learning to PACE and keeping your emotions as calm as possible because stress is Chronic pain's evil twin.
Remember when you wake up Christmas morning do not wait for pain before medicating because it is one day that not only your family deserves a break but so do you. Outlast.

Thank you from all of us Outlast. And what great advice you have given all of us for Christmas Day.

I hope you all have a wonderful Christmas and New Year too. May 2014 mean lower pain levels for all of us.

Mary

imust admit that i tend to struggle at christmas. it was always a big family event but i have no family left now. i have also worked most christamses in adulthood as i was an rn and happt yo work so collegues with kids could have time with them and as Mrs S refers to, work was nice on christmas day- i woked on heavy medical wards with elderly and palliative care patients- it was usually a great shift but i have not worked now for a few yrs which means i have lsot many social contacts too , my medical expenses are high nad certainly not covered by the pension so i am budgeting down to the last cent. i have gotten used to having no cash for the last 4 or 5 day of each fortnbight but this fortnight its worse as my pension gets paid on christmas day and they are only bringing it forward to the tuesday- the problem with that is that it means i have to try to do my usual fortnightly shopping on the busiest day of the year and mostly in that one day instead of breaking it down into smaller trips over a couple pf days.

i am still having severe back pain and it seems i have had another relapse of the MS and now am struggling to transfer from chair to chair etc. i am scared to death i will have another fall last one crushed 3 vertebrae. the OT's have requested a slide board but it has not arrived yet. they also requested a review of my electric wheelchair at the seating clinic but i d no have an appointment yet. After all the problems i had trying to get into see my pain clinic specialist earlier in the yr i had been promised that i would be reviwed every 6 months at a minimum but my las appointment was back in june, i did not have a doctor review booked yet - so when i went for my pump refil last week with the nurses, i asked about the chnace of seeing the doc soon as i am not coping, the increased difficulty with transfers has aggravated the back and leg pain to the point of having to rsort to ordine from my gp again but the told me my next appointment was late april and could not be brought forward. my gp is tring to ut pressure on themfor a much earlier review but they are closed til the new year now. something has really chnaged at this chronic pain unit- i have been going there for some 15yrs or so and owe them a lot but now, all i get is my regular pump refills- thats it! i can't understand how the doc is allowed to right scripts for opiates for the refils ever 3 months or so when he has not seen me for since june and will not before april before last june it had been over 18months since last review. it is a differnt director now but they keep blaiming budget cuts

anyway, i started saying i find christmas tough as i am basically alone with only my little dog and that already pulls my mood down but like lasy year, christmas finds me struggling more than usual with my health, this yr in terms of pain and decreased mobility with financial pressures on top- i want my nice christmases back!

kebsa, words fail me! I simply cannot believe that we have reached a point where people like you are left in limbo without proper equipment and adequate care while we build monuments so that the present government can try and assure it's re-election. Those monuments will be used by only a very small percentage of the population and it is simply not good enough.

Do you think that it's time to go to Today Tonight? I am at a loss to know what else to do. If you wish, I am happy to send your what you have said in your post to anyone that I can think of who is in power. Obviously they are all on holidays now, but it won't hurt them to read it as soon as they get back. If you are happy to PM me with your location, I can include that as well.

Do you have neighbours who you might share Christmas with? I seem to recall that you moved sometime during the year - or was that last year? If you contact someone like Anglicare they may be able to put you in touch with others who spend Christmas alone and they maybe able to help somehow.

Please let us know what we can do to help

Mary

thanks Mary, i have been thinking about things a great deal and in fact i was invited to an event the other day that was attended by people working in the health and disability systems and also people depednat on those systems, it was run by the fleurieau institute (south australia) and askedus things such as what do we want to be able do but cannot due to lack of a system or fault in a system, what sytems or equipment are not user friendly or simply to complex to use, basically any other problems we have come up against that affect day to daY living and quality of life. One thing that cam up time and time again was poor communication, as shown by the fact that those of use with continence problems get approx $500 per federal funding to help purchase pads and catheters, but for severe inconinence that only covers a small amount- however here in SA disability SA has a program that will supply the products required through domicillary equipment services once we show that we have used our federal funding- now, i have been recieving the federal funding for around 5 yrs, it covers about 1/3 my costs but i had no idea that the other program existed, neither did my continence nurse, my disability sa case manager had never mentioned it to me and there were many others in the same situation. I have weight issues that i need help with but i cannot afford dietican fees and use the funds through the gp (5 visits) for other essential services, it seems that Assist program - the program that funds disability services to adults in SA has started a weightloss clinic- i found out it existed only recently when i saw it mentioned in minutes from a committe meeting from a consumer advisory committe i am involved with but my case manager has never heard of it, the OT dealing with my equipment prescriptions had not heard of it, when we requested funding for the adjustable bed and recliner chair that cost more as they came under bariatric equipment, even that did not trigger anyone ask if i knew of the service!! as it is i had been asked to find out more so i could tell my case manager how to refer me- at least i met someone at the conference who can fix that but time after time these kinds of situation were described by others as well. they really need to make information more freely available- there seems to be a bit of an attitude that if we are told potentially that help may be available down a slightly different pathway, that we may actually take the option and it will cost money - but if they can help me lose weight, even supply me somewhere i can weigh regularly given i am completely wheelchair dependant- hampstead centre is the only option i know of, they have a mini weigh bridge for motorised chairs (or they used to have one)but the moment requests are made for equipment that meets bariatric standards that should have automatically referred us to what ever resources are out there.

as for current difficulties, i was referred to the rehab programs at one of the public hospitals and that is probably going to be useful- firstly i was sent to the MS specific clinic, where i had expected the help as transfers from chair to chair etc due to decreases control of my remaining leg and increased pain in that leg. they felt thjey could not help, which seemed odd, i was expecticing intensive physio/ot involvment short term to re assess transfer abilities and options or have i reached the stage where i need a lifter/hoist- they sent me to the prosthetics clinic which i knew would not be appropriately as when i have been able to use a prosthesis it has been above knee- it requires good control of the othe other leg! anyway, the consultant i saw in prosthetics was very sensible. very pleasant- she has put me on the waiting list for an inpatient program to re assess transfers but it just could not happen before christmas. in the meantime if things get too desperate i guess i will just have to front up at A&E and hope i get a sensible and human ED doctor! so that would be last resort. when it comes to the pain unit i will give them one more try as soon as the clinics re open. My GP has given me copies of the last letter from the pain unit after the problems trying to get an appointment with my pain consultant las summer when i hit a rough patch- he had been co erced from another practioner in the unit to commit to seeming at least 6 monthly, thats in his letter (not the coerced bit, he just makes it sould like it was his idea) but then no appointments were made, i also have a copy of a letter sent to my GP by the person who put pressure on my pain specialist and he had said that best practice would require rview 3 to 6 monthly at least! SO i will quote these figures to the staff when i ring and ask for an appointment for a more urgent review (my gp will give me a letter of support) and if they still can only offer late april i will be making a time to see the patient advocate at the hospital. its just sad because under the previous doctor in the same clinic, i had great care but he was the director and things changed when he retired, i hear stories of budget cuts so is it cuts or just a physician who is not pulling his weight.

AS for christams day you are right that i moved house and thats when i really became so isolated- losing work contacts plus neighbours when i have no family left to speak of, means i am quite socially isolated. work was my main social contact in recent yrs. i don't know how many of you find the same thing but when you have major health problems the normal social life just stops- when i worked for RDNS i used to see it with clients but now i live it! I did find out about some options through salvos and perhaps anglicare but i could not get access cabs et as they need to be booked months in advance- but certainly for next yr i will be making sure i do not spend another christmas alone. As it is I have asked my care attendant if she can help me lay and cut some patterns and fabrics as i need some new t-shirts and lightweight trousers, i take sizes a bit over the 24/26 which means options are less but more expensive- i can sew for myself but hav trouble with cutting out so if sh does that for i can have a productive day at least- that should stop me falling into the really down moods

thanks for your offer to past on possts to people in power but i cannot think of anyone at presnet- i thin ultimately the panels lke that one i went to last week and also the consumer advisory committee will get the problems heard in a general way - at least tht means its not just try to fix my issues but more systemic issurs which ultimately is better. it really does seem as though only the squeaky wheel gets the grease so i will just have to squeak some more in the right direction. if i still cannot get any better response from the pain unit after the holiday breaks by trying the patiernt advocate pathway, i might ask for your help then mary, i guess based on their past very good treatmernt and support i need to give them that one last chance

Hi kebsa - again words fail me. I thought that we had improved communication. I think my cousin who had a severe stroke 3 years ago must have a wonderful Disability SA case manager, because he has had really good information and communication. It hasn't been totally smooth but certainly a smoother path than you have had and are continuing to have.

I know the doctor you are talking about I think (the one who retired). It's funny because I had absolutely no help from him at all. He scared the daylights out of me actually! That pain unit did nothing for me at all actually. Even when I finally got Lyrica, it was because my general physician thought it might help and sent me back there. He also sent them a letter to ask them to prescribe it for me.

I was speaking with a person (can't say who) from the RAH pain clinic at a conference last week and he was saying that they have once again been refused extra funding. SA is the only state that has not acted on the National Pain Strategy of 2010. Every other state has allocated funds to set up or expand pain management programs. We have nothing.

I hope you get your materials cut before Christmas Day and that you enjoy the work that you will get done.

If we can do anything at all, please let us know.

Mary

Mary I have stopped receiving updates on when refresher courses are being conducted by the pain clinic, even on my last visit what is usually a very busy place was dead as a doornail, all up there was one person in the back treatment cubicles receiving what looked like a ketamine infusion, the waiting room was empty, seeing it takes years just to get into, something is going on and it's not good.

Kebsa what can anyone say, you are a prime example of how utterly stuffed our health system is, we are still finding out services available to our granddaughter through Disabilities SA, when she turned 18 she was transferred to the adults department, and boy dealing with them has been fun, they fail to understand mentally she is nowhere near being of adult age and yet her new case worker is treating her that way frustrating to say the least, and our granddaughter trust for them has gone backwards and she doesn't like her case worker, we do have a complaint in with higher administration as yet no reply, just hand balled from one section to another.
Christmas Disabilities SA should have organised a group lunch or something knowing all too well you are on your own, and transport there and back, what's happening to all these services that use to be in place, if you want to chat on the forum on the day, I will be home, we are not doing anything this year, I will be logged on.

Don

Kebsa,

I can't add anything else that Mary and Don haven't said. I sincerely hope things will improve for you. But just remember that if you are on your own on Christmas day, someone will be in here monitoring the forum. If you want to chat, just post something in here and we'll all get the post, then someone will soon get back to you.

I do however share in your frustration and am also angry that the system and govt, with all it's bean counters and red tape producers. These people will answer for all the harm they do to others. Wasting money on football stadiums like in Adelaide and in Perth, plus the billions of dollars wasted on destroying the Perth foreshore, instead of spending it on health and public transport.

Anyway, enough of the complaints from me. Take care and keep talking to us.

Peter

Hi Kebsa,

Ill be on line also

Johnno

Hey Kebsa,
You are not on your own mate. I may not be online for xmas but you will be in my thoughts. 🙂

Hi Kebsa,

My heart breaks for you and your story is one hell of a tough life. I am so, so sorry things are just so incredibly difficult no matter which way you turn.

The only other thing I can say is, I have found the whole journey of living with CP x 2 very isolating in the sense that there has not been one medical professional who has ever given me tips on pain clinics, support groups, forums etc, etc. Everything I have found out has either been through my own research or information from other people. It astounds me that we have to educate ourselves about available services.

I am so sorry you will be spending Christmas alone. I hope you can make yourself a really nice new top which in turn gives you a morale boost. I certainly hope 2014 brings some radical improvements for your daily life.

All the best and take care Kebsa 🙂

Hi Florrie ,
How right you are, not all in medical profession are knowledgable enough to understand CP , I found an absolutely wonderful psychologist who was able to drag me back from the brink.
She was also able to advise and inform me of ways to handle what I have been left with including the reduction of my work hours by one day a week.(including the drafting of a letter to supply my employer).
Perhaps the moderators could get a list of psychologists / medical professionals from all of us on line who could be a list of core advisors in regards to our individual needs.
I apologise for putting the moderators in this sort of position but whether they could have a separate site for those of us who have found awesome people who are able to help ,besides lifeline etc
I know we are all over the country but if we could share any positive practitioners I feel this would give a lot of help and hope to some who have lost the way.
I had surgery on my arm on Friday to remove the plate holding the bone together and carpel tunnel release also so am suffering with severe pain (arm) chronic pain (hip) topped off with humidity .
I could have had the arm done when it is cooler but due to the lack of sick days due to pain course I have attached it to Xmas break to give me two weeks off .
Johnno

Hi Johnno,

I agree with you and Florrie on this. This very subject came up at a conference I attended a couple of weeks ago. I think that we need to discuss this at a Board Meeting. There are a few ways that this could be approached, so if you bear with us, we can get back to you all after we have a meeting in the new year.

Thank you for your thoughts on this. It is a major problem and we may be able to contribute to it in some way.

Mary