kebsa

i live in australia and have had MS officially since 2004 and unofficially since the mid 90's- i am also wheelchair dependant having lost one leg and the remaining leg is MS affected. I have reflex sympathetic dystrophy that has been a big problem too- I have managed to work part time telephone nursing for the past 9 years and most of the time i have managed that well. LAst year was one of those horror runs in terms of my MS, i was hospitalised 22 times ranging from one week to 5 weeks, so i spent well over half the year in hospital. here in australia we have a government disability pension system and when last year was so tough eventually i was able to apply for the pension and qualified so that at least i had some income but i was too sick for the first 3 months and had no one to do it for me so quite literally had no income for 3 months. eventually some helped me deal with paperwork and then it has been suggested that i try to keep the pension active as a saftey net. I can only manage to work 15 hours per week- the rules for the pension state that your income must be under a certain limit (and that is definately not an issue as 2 days pay is not a great deal!) but the there is also a limit of 15 hours per week, so i am right on that threshold- i have had so much sickleave that i have been dropping below that so have just stayed within the rules but now i am trying to avoid more sick leave- work are beginning to lose patients and have threathened to make me casual instead of permanent part time- i can't pick up shifts at short notice as i need to fit around carers so casual work is not really an option- my supervisor suggested i apply to drop one hour so that i fit the rules for income saftey net so that when i am well i get no pension but when ill the pension kicks in again but i work for a state government agency and they have replied that 15 hours is the minimum for part time work, the pension is federal government and their rules are clear that i have to stay under the 15 hours even if it is only by 10 minutes. my choice seems to be drop down to casual but risk being unemployable because my health does not allow me to respond as a casual employee but i would have the pension ($560 per fortnight) or carry on working 15 hours so the pension stops and if i have another relapse i have to re apply for the pension when i am well enough to get to the department (so it could be several weeks with no income again) i also face the risk of the pension rules changing and such changes only apply to new applications- a few years back the cut off was 20 hours but they have cut it back and made it tougher now i want to work and intend to for as long as i can, but i have to face the fact that my MS has reached the point where that is gettin really tough- i am worried that i am reaching the stage where i am becoming secondary progressive rather than RRMS - at the very least it is picking up in severity- by the end of a shift my vision is getting ropey to say the least and i am so exhausted by by second shifts end that i sleep nearly all day the next day. i live alone with no family support, i feel so alone with all this stuff, work has been supportive until now but i seem to be in a strange sort of no mans land between being reliable enough to be employable or having to stop work. Its crazy when one government departments rule means you breach the others rule but if you comply with the second you breach the first ones rule! does anyone else find themselves in that strange no mans land between being disabled to the point of not being able to work and yet working just enough that as long as you don't have a relapse things are OK- i wish i could feel safe that i will have a few good months at least now before having another relapse but this thing does not work that way- i know that old saying that the only certainties in life are death and taxes, that life is always unpredicatble but i just know the person who came up with that little gem did not have to deal with the added uncertainty of auto immune disease! how do you guys deal with this kind of tight rope!

I had wondered about the open MRI's but I live in South Australia and it seems we do not have an open MRI in this state- I am waiting for my neurologist to call back tommorrow and perhaps go back to where i had my first scans done- it seems that the tube is a little larger than the one i went to today- it was still a snug fit and we did not get good spine images because they removed the coil that you lie on to make a bit more space - it did that but the films were not very good at all- not good enough to see if i had any new lesions or not. i guess i will just have to keep on plodding away at trying to lose weight but i still say that the facilities are behind the times and they should be allowing for people of larger builds- its carzy that someon elike your husband would have trouble getting a scan because of muscle bulk- i weigh a bit more than 265 these days but still less than 300 and it terms of bariatric patients thats almost a lightweight

well i can speak from the patients point of view, I hve been nursing for 28years- these days in a limit capacity as i am in an electric wheelchair, i have Multiple sclerosis and i am an amputee- unfortunately i am in the morbidly obese catagory. I did weigh 385 pounds at one stage and got down to 275 by calorie counting and limiting calories to 800. unfortunately last year was bad for me in terms of the MS, i spent over half the year in hospital. My Neurologist sent me to have an MRI of brain and spine to check progression and when i got to the facility they only got me half way in before deciding that it was too narrow, they were worried that the firm fit could lead to burns! I have regained some weight since being in hospital so much and not having the same degree of control on my diet - in terms of overweight and obese people i know i am no light weight but i ams certainly not that bad! i can't help thinking that a bloke with decent sized muscles would have shoulders just as broad! so there must be quite a few people who are too big to fit in the MRI tubes- i am not sure what my options are. And yes, i accept the lifestyle issues in obesity but if you look at any general medical ward you would find that the majority of patients were there because of illnesses that have a life style compenent to them, type 2 diabetes, cardiac disease, COPD, CVA, lots of cancers but for some reason these conditions do not attract the same kind of negative feedback that the obese do! I am notproud of my weight and to have to be turned away from having the scan today was humiliating! If people do opt for bariatric surgery, then they are subjected to taunts about taking the easy way out, again pushing the idea that being fat is being lazy!! given the fact that the population is getting larger there needs to be more done to help people deal with their obesity, and there should be better facilities to deal with the overweight- as for me, they will send me back the mri suite i went to a few years back as it seems their scanner is a little larger and if that fails i guess that will be the end of trying to assess what is happening with my MS my weight scares me silly, i am doing the best i can with diet but the MS means that excercise is impossible- using a power chair does not burn much energy and if i do try to do a workout to burn up more calories, the increase body temp means my vision goes, i get muscle spasms, i get severe fatigue, my speech slurrs etc- most MS patients are heat affected and even a rise in body temp of 0.5 degree celcius is enough to trigger a psuedoexaerbation that can take a couple of days to pass! this seems like an unwinnable battle