Australian MS Bandsters

[susannah 2]

Karen, I have also heard about the bath test of days gone by. I have had 2 evoked potentials tests. Love those checker board patterns! :biggrin1:

Do you think MS decreases your libido? I am sure it is effecting mine, my sex drive should be greater for someone my age. Not that I have had the opportunity or inclination for a while!:biggrin1:

I don't want to talk to my male neuro about this, because I would feel embarrassed to be honest.

Susannah

[kebsa 1]

THe inclination is still their but sensation etc is not good these days, add to that the fact that orgasm triggers the abdmonial muscle spasms and pain - it works pretty well as aversion therapy!

I am not in a relationship at the moment and to be honest, the whole dating thing is tough at the best of times- add the effects of morbid obesity, amputee, disability and the challenges the ms causes with sex- It seems just about impossible- the bladder problems worry me when it comes to personal stuff- it would have to be one specal person to deal with all this - and at what point do you bring it up. I think I have just automatcally put it in the too hard basket!

I can understand your reluctance to talk to your male neuro, I have discussed things with the RN's at the MS society- they are a good source of referrals to other resources

http://www.msif.org/docs/MSinFocusIssue6EN.pdf

don't know if the link above may lead to some suggestions- its a 28 page booklet so takes a while to open- most of the stuff they put out seems useful

[bronnie70 0]

mmmmmmmmmm... i didnt know about the concession. How do i organize it???

[susannah 2]

Bronnie, To get the concession you ask for a form to be sent to you from your electricity provider. You then get your gp to fill it out and sign it to the effect that you have MS. It is called the summer MS concession. Not sure if every provider has it.

Karen, There is somebody for everyone out there. A relationship is about love and companionship also, not just sex.

Susannah

[kebsa 1]

Yeah I do know that and to be honest, companionship would be great but I guess I have taken the approach ( at the moment) that if it happens it happens, I am not going to agonize about no mr right- too be honest, the past few years were pretty rocky for me emotionally for a lot of reasons, things are better theses days and I feel pretty positive these days, but I think I need to do more about being happy with me before I even think about relationships

I am going to check out about the power concession though, every little bit helps!

[susannah 2]

Hey Karen, You are exactly right. Well done with the weight loss by the way. What's your secret? Any tips? Susannah

[kebsa 1]

Hi susannah, I mssed this post somehow. I had a relapse of my MS in sept 06 that basically paralysed my left leg ( my only leg!) and the thought of beng close to 400 pounds and unable to transfer from chair to chair was just the kick in the tail i needed! I was lucky and got most of the use of my leg back and proceeded to clean out the cupboards and freezer of any "problem foods", I went back to journalling and calorie counting everything. I avoided highly processed foods, higher GI carbs and low and behold I started lsoing weight!

I had not had any Fluid in the band for over 18months because of MS related swallowing probs and was threatened with losing the band. I had been gaining weight very gradually. My epiphany was in nov 06 out of pure fear first, then the realisation that just because the challenge to lose over 200 pounds seemed huge, it was not impossible. I set small goals of 10 to 15 pounds at a time, take measurements regularly as well as photos so that eventually I will be able to see the difference.

2 weeks ago I had a small fill as I had been advised that due to inactivity I would need to stay on 600 to 800 cals per day, i was doing it but felt hungry a lot. I worried that long term being hungry a lot of the time may lead to backsliding.

I have now got used to the fill, and seem to have the swallowing problems under control ( have to be careful when the weather is really hot as it makes the swallowing a bit worse). I will still keep journalling, I use fitday and it helps me keep track of varous nutrient levels too.

How are things going with you, I thnk you got our really hot weather yesterday ( was 42 here on sat!!). How are you managing the post op diet etc- I assume you are on Mushy stuff about now, feels good after lquids only doesn't it!

[susannah 2]

Hi Karen, I am so lucky that I have not had any swallowing issues with my brand of ms. You are incredible the way you just keep on soldiering on with this wretched disease. I have nothing to complain about next to you.

Do you think it is possible to have little depressive spells due to lesions in your brain? I have moments when I feel so overwhelmed and my brain feels like it is in a fog. Today for instance I am feeling happier than yesterday, but am feeling weak and tired. Other days I fly through the day.

Karen keep up the good fight with the band.

Good on ya.

Susannah

[kebsa 1]

Hey susannah

the lesions can ( in theory) affect any past of the CNS. MS sufferers do have a hihger rate of depression than the general population but t s not certain wehter that is due to lesons or to havng to deal wth a chrnoc health problem. THey are recognzing that various cogntive problems are more prevelant in ms than once thought but most are susually subtle. I have had bouts of depression and I am fairly sure that it is jsut dealing with the physical issues that causes my problems- I have used medication at times and it does help. I have had some wonderful support from the councillers at the MS society, they did refer me to a psychologist ( in the public health system- no cost) and that has been very useful. I get more emotional about things than I used too, I think that is MS related but it s only subtle.

I actually think that the MS fatigue can make you feel pretty low too- its been so stinking hot recently that I am not surprised you are feeling weak and tired! talk to the councillers/RN's at the MS society

feel free to PM me anytime, not promising answers but I'm happy to try ot share a load if things are tough- I start back at uni next week but will stll check the boards at least once a day and I will get back to you as soon as I can

Not saying that I enjoyed finding out I had MS but I think it was easier for me to "adapt" to the idea as I already had significant disablities. I started accumulating all the strange MS stuff without knowing what was gong on so once I had a name to put to it i was almost relieved- its easier to fight a known enemy than an unknown one. Knowng what the issue was has allowed me to be as proactve as I can. I do feel as though I am better off since I started the betaferon, i can't cure it but I can slow the bastard down!

[ajtonya 0]

HI ALL... I have M.S. too. I was diagnoised in 1997 at the age of 25. I was banded feb.28, 2006. I feel great and only have had one exacerabtion. Lost 68 lbs. I would love to communicate we have two things in coman. You can E-mail me to if you would like. I am so glad you wrote in about M.S. Have a blessed day!

[kebsa 1]

H lady T

Nice to meet you!

I think we may have a 3rd thing in common besides the band and MS, I note your profile says you are in the medical profession, I am an RN. 25 was young to get diagnosed but it sounds like you have been lucky in having only one exacerbation! Congratualtions on the weightloss- I am down 63 pounds as of this morning!

[bronnie70 0]

This is co-incidental.. Im an RN also currently working at a large hospital 1 day a week. i agree that the MS thread was a gread idea.

2 weeks to go today until im banded

[kebsa 1]

Hi Bronnie

Ether MS is being diagnosed more often these days or it seems there are quite a few RN's around who just happen to have ms- I know 3 other non banded ms RN's another 4 who have Lupus. I met someone at the cinemas yesterday who was struggling to get her wheelcahir up a ramp, I gave here a tow with my electric chair- we got talking and it seems she is an RN with MS too!

I work 2 days a week ( sat sun lates) in a health advice call centre.

dont forget to remind us as your surgery date gets closer

[susannah 2]

Hi, Hi Lady T and welcome. I know of only one other nurse who has MS. I work in child care. I think I am getting a bit beyond it physically now, working with children. I am contemplating a change of career.

I am still able to work, and I imagine that will not change for many years. I was on sickness benefits for most of 2004, but I was able to go back to work and I was glad. While I am able to work I prefer to. I am glad Centrelink is there when we need it re benefits, but I am able to work now so I prefer to.

Susannah

[kebsa 1]

I agree with you totally, I was on a disabilty pension for 4 yrs after my amputation/chronic pain stuff- I am grateful for the fact that we have access to beneftis. I had been buying my own place back then too but lost it due to my health problems- I was homeless for about 4 months (went from friends to friends sofas)- I was granted a housing trust unit (same as housing commission) and have been here ever since. I like the security of knowing that my rent is based on my income. As I have needed alterations they have been done with minimal fuss. My unit is in a nice areas with great neighbours- we are lucky here! Even our health system is pretty good- When I hear our US commrads talk about how tough it can be to get their health funds to agree to care I thank mylucky stars that the funds don't have that degree of power here (yet). Even meds- thanks to the PBS we have ready access to the meds we need. I still have a healthcare card so get my meds for $4.90- the betaferon alone is worth over $1100 per month.

OUr system has flaws and cracks but it does its best and works quite well most of the time.

Speaking of centre link, if any of you are working/studying etc, Do you know about the mobility allowance?? its only about $72 per fortnight but it s not income tested, meanstested, its not taxable and it gives you a health care card - thats the big thing.

As for the career change, i understand that- its scarey though! I was lucky to get a job as an RN despite being in a wheelcahir but have been acutely aware of how vulnerable i am in terms of employment. There are not many RN positions around for a a morbidly obese, one legged, wheelcahir dependant person with MS! I actually got a redundancy note last year along with about 160 others ( government contract went to a different company)- I was one of the lucky ones to be able to get my hours back at the same place ( made unredundant). I haveonly ever been a nurse! Anyway I had already started doing a Bachelor of information technology at flinders uni ( very part time)- its skills I can use in my current role but also gives me a different option for the future.Thankfully IT is very adaptable for people with disabillites - I start back on tuesday!

I'd hate to be stuck at home again- i need to work to maintain my sanity