Wanting to chat with other nurses with ms

[Sylvielynn]

I was diagnosed 4-1-11 nice April Fool Day huh? I am 33 and work on ortho. Busy floor but I LOVE my job. It is getting harder to get through the days looking to try new meds to help. I would love to chat with others that are going through this as well and understand and know what I am going through.

[sattrles]

been there

Hi and welcome
First, I've been a nurse since 1991. Worked alot of different units in the hospital but, LOVED Ob-gyn and nursery. Worked most of my career there. Was dx in 2003 but have had sx since 95. Worked 12 hour shifts at 2 jobs at one point in my life. Then, bam, could hardly work 8 hours without needing a nap during the day. My hands would be numb so, Ivs got really tough. My back and legs would spasm and I got stuck when I would squat to help pts.

So, yes I understand where you are. I know how it is to love a job and not be able to do it. And I know how it is to be on disability from that job. Not only b/c I can't do it anymore, but, b/c it would endanger pts.

I hope you are able to cope with your job and physical needs. It is a balancing act.

[Sylvielynn]

It is hard we just had to go to 12 hour shift from 8's. I then had to go to part time cause I don't think I can handle 3 of them. I get soooo tired and my thighs get tingly and my back will spasm bad, I also get goofy and stumble. Usually if I can go on a break and sit down for a bit and regroup I do ok. I am having a hard time sleeping at night so I already start off the day OFF. Hands are good so still starting IVs and such its more fatigue and the cogn, tingling, headaches, spasms. Not bad huh? I do have a good sense of humor about it and so do the nurses I work with. They have all been going through this with me when I was diagnosed. As you can tell I also tend to ramble on and on. sorry

[ms er since 06]

Sorry - I'm not a nurse, but I was the assistant to the CEO of a hospital for 20 years. I loved, loved, loved my job, but an assistant still needs to walk, bend, be not in pain, be there every day and not at a doctor appointment, attend meetings without leg spasms jerking my feet and legs under the table, being tired all the time, etc. Also, it was getting to the point that other employees had to do things I couldn't, and there was some resentment starting. I know exactly what you are going through. Fortunately (or unfortunately) the hospital closed just in time for me. Stay as long as you can stand it, as long as it is safe for you and the patients.

[Dawnrnuk72]

Nursing's not an easy job....

Hi,
I know how you feel, having to work even though you're in pain, numb etc etc. I've been a nurse since 1994, and always worked. Had time off over the years having children and relapses but ths year I had to give up work. I've not officially retired yet, I'm still off sick (since march) but I will be retiring in January. I'm 39.

I've had 2 bad relapses this year and now my leg is very weak. I need to use a stick when I go out due to my balance. It's going to be so hard to give up nursing but my health, and family, are more important. Nursing is a physically hard job, and as we know with MS, stress isn't good. I think it's finding the right setting that's good for you.

[ricanfemale30]

i feel ya

Was dxd at 20...worked dialysis when I started to get sick..worked the usual 12-14hr shifts I miss my Job..I'm only 27..I miss running around be yelled at by docs when i don't agree with them...saving lives...sigh I know what it's like...my patients used to call me nurse house cuz I worked with a cane for a few mths b4 I called it quits...I'm not adjusting well. It's been a yr n it sux..I hope to work again...but my odds are slim..

[Sylvielynn]

I'm sorry. Your only twenty seven. Wow so what's going on with you? I know I do love my job and pts it makes it so worth it. I love to laugh and make them feel better.

[laurarudge123]

hi, i was diagnosed with rrms in may 2011 in my last year as a student nurse, im due to qualify in march and im very lucky to have been offered a job in the surgical area. i am having rebiff 44mcg 3 times a week which still gives me bad side effect.only been on it since aug 2011 so hoping they ease off...can i ask how your employers have been with you? if u have had to have time off etc its worrying me with it being unpredictable how they will be wiv me.. will be nice to hear back from any other nurses xx

[Dawnrnuk72]

hi, i was diagnosed with rrms in may 2011 in my last year as a student nurse, im due to qualify in march and im very lucky to have been offered a job in the surgical area. i am having rebiff 44mcg 3 times a week which still gives me bad side effect.only been on it since aug 2011 so hoping they ease off...can i ask how your employers have been with you? if u have had to have time off etc its worrying me with it being unpredictable how they will be wiv me.. will be nice to hear back from any other nurses xx

Hi,
I've had lots of time off over the years from having relapses. I always told my employer so that they knew why I had to take more time off. They should be more understanding 'in theory' if you're honest about it. Here in the UK they can't fire you for being off sick if you have a disability such as MS, it's against the law. I'm not sure about the US but someone else on here might know. Your health is more important so make sure you look after yourself and don't try to be superwoman

I'm on Rebif 44mcg too and it really helps with the side effects when I take 800mg ibuprofen (with food) before I inject. I usually wake up a bit stiff but I just take another 200mg and am fine the rest of the day.

[nursefairy]

I am struggling with that myself. While I love my job, I feel it is really taking its toll on my mentally and physically.
I dont' sleep well (like most of us MSers) so I take Provigil to keep me moving during the day. If I have a busy shift, I can barely move afterwards.
One day I bent over to empty a foley and thought I was going to have to call for assistance. My legs turned to jello and was having spasms from back through hip.
I do need to cut my hours but am afraid I won't be able to support myself and my youngest daughter, who still lives at home.
Ahhh...decisions, decisions. I can't make them beforehand...they just seem to come to me at the right time

[Dawnrnuk72]

@nursefairy.....have you thought about looking for a job say in a clinic, or office? Something that isn't so 'physical' on the body. I'm still trying to find a phone type job, such as a nurse advisor. They come up once in awhile.

[mstish48223]

TO NURSE CHAT

I'M A NURSE THAT HAS MS AND I HAVE HAD TWO BAD RELAPSES THIS YEAR IM CURENTLY OFF TILL I RECOVER HOPELY SOON. HAVING MY FAMILY SUPPORT AND MY BELIEF SYSTEM HELPS ME THROUGH THIS TRYING TIME. I WAS WORKING 4 DAYS A PAY PERIOD NOT ENOUGH MONEY BUT JUST ENOUGH. MAYBE CUTTING HOURS OR DAYS BACK WILL HELP YOU. I HOPE YOU GET BETTER SOON AND TO ALL MY FELLOW MSERS STAY POSITIVE, I KOW I DO.

[nursefairy]

Hi Dawn,

I have thought of that but the pay is just so horrible. I could cut down to two days at my current job and still make more than a clinic/doc's office would pay. Plus, if I went out on disability, I would rather have it be from the higher paying job.

I am going to start working on my master's and maybe I can do some teaching or something when I am done.

Either that or maybe I could braid hair on a caribbean island somewhere

I'm a nurse, but I transferred to a desk job many years before I started getting sick. I couldn't go back to the floor if I wanted to, as I get a tremor in my right hand trying to do certain tasks. Can't start an IV like that. I can't imagine how y'all get through the day still nursing. My hats off to you.

[kimik1]

Jodi, I'm laughing out loud at your suggestion about braiding hair on some Caribbean island somewhere; I'm SO IN girl!

I'm peds and neonatal ICU nurse, currently working 12 hour shifts. i was just diagnosed last August, with a very atypical presentation (meaning nothing "MS Normal" about it), and have just gone through my first true exacerbation (I kind of thought I would be immune, because I didn't have traditional symptoms or presentation initially). I have finished a three day course of IV solumedrol and am now suffering through the aftermath of that, though I must say, the MS symptoms which prompted the treatment have largely improved!

I struggle with loving my job, needing my insurance, needing the income, etc. Because I have a partner, not a husband, insurance through her work for me is not available. I MUST keep up employment where I maintain insurance, and unfortunately, braiding hair in the Caribbean, though long a dream of mine (I could place 26 perfect braids in one Barbie's head and the young age of 8! ) doesn't provide that type of coverage that I know of.

Anyway, just thought I'd jump in on the conversation. So far, I'ma ble to work, this week has been highly difficult with the infusions, lack of sleep and now withdrawal from the Solumedrol. I'm hoping for rapid improvement of those symptoms, as they're profound!

Take care, y'all, and happy braiding dreams, Jodi!

Kim