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Posted 4/24/2013 12:44 AM (GMT 0)
does anyone work with lyme disease? I am a rn in a bad marriage and need to work. I have been in benzo withdrawal and now with lyme awaiting treatment.
Posted 4/24/2013 12:52 AM (GMT 0)
We must have posted at the same time! My job is giving me the blues. It's hard but I gotta work. So sorry about your marriage :-( you need peace. I'm sure your job is taxing. Just do what you can...I pray it will all turn around for you.
Posted 4/24/2013 1:01 AM (GMT 0)
I think this really varies from person to person. Personally, there is absolutely no way that I could have worked over the past 2 years of being very ill. I'ma stay at home mom and have even needed help at home with my kids on a regular basis. I think it depends on your symptoms also. I have systemic symptoms-neuro., pain, fatigue, etc. I have a lot of severe cognitive problems so that would also make it hard to work.
My mom is an RN. She has been diagnosed with MS (possibly lyme) and just went on permanent disability/retirement because of her cognitive problems. That made it really hard for her to be a nurse.
Posted 4/24/2013 1:31 AM (GMT 0)
I feel your pain. I was a school RN. I had 600 children and a very brittle diabetic to care for. After starting treatment there are days I am not sure I am going to make it not working. I believe if I worked a full 8 hour day I would be in the bed for the next week. I was undiagnosed for 12 years with a known tick bite. I have so many neuro symptoms that I cannot and will not put my nursing license on the line. As nurses we must multi task, be quick thinking in an emergency, etc... I cant mentally or physically do it. Fortunately I had paid all these years on short/long term disability and I have had no trouble getting it approved. Hopefully you have some disabilty through work you could look into. Best of luck to you. A person that does not have Lymes has no idea what you are dealing with mentally/physically!
Posted 4/24/2013 2:27 AM (GMT 0)
mxmom, yes, that's what my mom said. She said that being a nurse requires so much thought, multitasking, etc. She made 1 small mistake at work and that's when she decided to go on disability retirement. It didn't impact her patient, but she decided that she couldn't risk making a future mistake that would harm someone.
Posted 4/24/2013 4:35 AM (GMT 0)
wow thank you all. I will have to reevaluate my position in six months after tx begins. right now physically i cannot work I will have to get in better shape. mentally, I believe I could do a office job or a job passing medication, right now it would be difficult to multi task on a floor like I did 13 yrs ago.
Posted 4/24/2013 4:47 AM (GMT 0)
When my daughter was at her most sick stage, she could not attend school for about 1.5 years. Knowing this, there is no way that she could have been able to work if she had been an adult at that time. She couldn't walk, had severe pain and fatigue, and had debilitating cognitive issues. There was no way!

Don
Posted 4/24/2013 6:49 AM (GMT 0)
I've been ill for a long while - there were periods in the past that I stayed home for 3 months. Now I'm working full time (office job). I can barely make it working fulltime, can't do the housekeeping, no social life. I work and when I get home I need to rest, that's all. I know that it would be much better for healing to stay at home, but there's no chance that we can cope it financially without me going to work. Most of the time, I'm functionning on automatic pilot. Sometimes I feel as if I'm pushing my 'luck' though...

Since I have to pay for treatment myself, I can't afford staying home (after a while I would only get 60% of my income from insurance (I'm in Europe)). Then husband lost his job end of last year and only just found a new one (crisis).

I sometimes work at home, and my boss is really understanding about dr's appointments and bad days. And I make mistakes sometimes and forget a lot of things, but I don't care about that - boss knows what's going on and he understands. He can't do without me, I can't do without the money, we get along like that. (there have been days that I fall asleep at my desk...)
Posted 4/24/2013 12:04 PM (GMT 0)
Hi mystery 1 - I have worked all through my treatment and I empathize with you. I have to work to have health insurance for myself & my family but agree with other people that if it gets bad enough it can be impossible. For months I felt like I was holding on by my fingertips. I have no doubt that working when so sick slowed down my progress. Even though I am feeling much better, I have no doubt that a less stressful job or working fewer hours even now would help my health.

What I am trying to do as I get better is spend more time doing things that make me feel good and fewer things that sap my energy or spirit. I am also mentally working on having a clearer picture of what a balanced life would look like for me - every time I have gotten stuck when I have stayed open to what the next step should be - a person or something would come into my life and I would pay attention to what I was supposed to be learning from them and I would move forward. I'm hoping that will happen with regard to work too.

I am sorry you are feeling the pressure of working while ill and hope that things turn around for you with your treatment.
Posted 4/24/2013 8:05 PM (GMT 0)
thank all of you again. I am so sorry of all your struggles with this disease. my biggest concern is that I have been told I may have bartonella and I am having the bartonella rage. I also am in withdrawal from benzodiazepines, i.e. klonipin and I don't know if that is causing my rage too.

I have been in an unhealthy relationship with a older man for 12 years that I feel may have naricissitic personality disorder. waking up from being on a drug that numbed my mind and body and then being told I may have lyme on top of this has been devastating.

I thought I was going to get my life back after benzo withdrawal with takes 2 yrs, now I don't know if I will end up crippled on living on disability. I also keep thinking that I will never fully heal if I stay in an unhealthy relationship. I just want peace and to fill my life with people and things that make me happy.
Posted 4/24/2013 8:59 PM (GMT 0)

The Bartonella rage has been / is an issue for me too...

There's times I could just strangle my husband - but now I know why I sometimes feel or behave extremely angry or crazy, and that realization helped a lot. I can't possibly give you advice on your relationship, I'm just writing down what I experienced. If I would have followed what I felt in the past, we would have been divorced since. The times I really had to fight that angry urge to yell at him 'leave, now!!!!' ...

Not only in marriage, also in traffic, or in other situations, I would swear and insult... Before I was diagnosed, husband made a remark on that...

You made it through benzo withdrawal, that's huge, you'll make it through this too yeah !!

Posted 4/25/2013 9:23 PM (GMT 0)
I used to work 40 plus hours a week. I worked hard my entire adult life. This past year that has been a very tough issue to deal with, being so ill I could not work. I couldn't drive, I didn't have the strength to get out of bed, stand, sit up and feed my son, take a shower - let alone go to work and perform.

It is a scary road to be on and to have to explain that to others. Everyone (except my husband) in my life thought I was suffering from postpardum depression. The anxiety, depression and rage that comes with Lyme cannot be controlled. I had anti-depressant and pain meds given to me left and right at first. My Drs believed I was having a fibromyalgia "flare."

Looking back I realize Lyme has been in my life far too long. I am fighting everyday to take my life back and make it better than it ever has been.

Do whatever you can to heal from this, and make a positive change. Everything happens for a reason :-)

Posted 4/26/2013 3:09 AM (GMT 0)
thank you everyone.
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