Work?

Hi there. I thought I would start a discussion about work and Chiari

It is very hard at the moment as I have so much time off work and now when i spoke to the manager he has said that I really need to look at my hours and that I may need to reduce them. It is such a hard decision and I am at a lost of what to do. It not helping that I feel like crap as well.

He said that I need to think about how many hours I will be able to do. But it is hard as with chiari you don't know when it is going to strike.

My workplace are so kind and caring and they have been there for me and offered so much support.

It is so hard.......so any ideas or suggestions and if you are working and or had to give up because of it.

So any ideas.......

Work can be difficult for sure. I'm having repeat Chiari symptoms, I've had a headache since August 29th and I work under fluorescent lights and on a computer... However my boss today bought me a hat to wear at work to help reduce the glare from the fluorescent lighting. It helps a lot for me. I do have days though where absolutely nothing helps.

I guess it all depends on the type of work you do, if you have a sales floor position where you are walking around all the time it may be harder to work more hours than if you were in a desk position like I am.

I have decided against taking Narcotics for my pain as it would prevent me from working at all... my head hurts a lot and my other symptoms suck but having a family and finally a workplace that is supportive of my condition definitely helps.

Yeah I am a retail assistant and i do 4 days a week 3 day on the shop floor walking around and then I am on a computer putting sale through but yeah very hard. I just dont know what to do. My family have been awesome but yeah it just hard to get on when you feel louzy.

Work is always hard. Right now I'm attempting to work full time and I've been struggling with it. The main benefit for me (besides financially) of having a job is that it really helps with the Chiari/illness related depression, to be able to feel like I'm accomplishing something. When my symptoms flare up and interfere with the job, it's devastating, because I feel like I'm letting the team down, and then the guilt and stress make me feel even worse. It's a vicious cycle. My boss is being very understanding and flexible, however, so I'm trying to think positively and tough it out.

Obviously working can be very difficult or even impossible with Chiari. I take 2 narcotics and they are a god send. The right medications don’t drag you down. they return you to a functional state. Midrin and butal are the 2 I take, no drowsiness or high effect. A pain specialist should be able to help you decide how to manage your pain so you can continue to work.
By the way, I saw Dr. Oro today for the first time today and I love him! Compassionate and a listener. Open to your specific situation and needs. I highly recommend him.

I know Chiarians that work full time without out problems.

I also know Chiarians that are never able to work again.

It is very subjective and like all things CM depends on the extent of your Chiari pre surgical and your post surgical symptoms. It's positive for some and horrible for others.

I wish I could make it sound nicer or more positive but it's not. I am very happy for everyone that can return positively back to work.

Do you have LTD Insurance at work or privately? Have you thought of filing for SSDI?

I can help with ins. questions. This is a tough subject for many of us on every Ben's Friends Forums not just CM.

When I was diagnosed, I was also concurrently diagnosed with Lyme Disease. My life career was in the medical science field and I was losing my ability to do that SAFELY for the patient. SO, I chose to voluntarily not go back. It was an awful decision and we suffered financially for a year, but I then took a job doing career awareness training, and I did much better. I still had some bad days and called in a few times, but mostly...it worked. Well, since then, I've become a college professor. I do online instruction and the occasional classroom (usually one day a week) and it works for me. However, my Chiari is small thus far. I deliberately altered my life to ensure I had skills that would permit me to work either flextime or from home. While that's not making me rich, it IS easier with the Chiari. There's days when I can't do as much on the computer, but it has been ok so far. I just have to alter things on the fly sometimes.

There's no way that I can possibly go back to work in the medical science field. My quick recall isn't always good enough for that, but I think the idea is that if you have to reinvent yourself, do it with the future in mind.

It would be nice to be able to take time when my symptoms come on. My employer not at cooperative.

My only advice is try to stay hydrated. My wife is usually able to manage her headaches By drinking lots of water all day long

For me its very difficult because I’m on my feet all day. I’m a second grade teacher. Every day seems to get harder and harder. I’m still trying to manage but my meds(tramadol) make me so doppy I can’t take them during the day. I try to manage the pain with ibprofen.

I work for Caterpillar and they have been really supportive... I had surgery in January and I returned back to work 3 months later but I couldn't do it, it was very loud and the lights made the pain worse. so they let me go to 4 hours a day so I could work myself back up to full time but it didn't work I was put back on disability a month later and I have been on it ever since... Doctor's don't think I will ever be able to return to work so now I am trying to get on SSI but that is proving to be very hard...

I work as an assistant manager at a retail store in a mall. Believe me, I know how you feel. Because of my problems, I was pretty much forced to go to part time by my district manager. Not my store manager but HER boss. It was either that or quit, whicn I cant afford. Going to part time has not helped much. My PCP as well as my neurologist both want me out of retail asap. But I have done that for 15 yrs and I dont have the degree needed for some office jobs. I have been applying for some office assistant jobs where I just sit there and do paperwork and work the office phones like ina drs office. But so far I keep getting a "we have found someone more qualified" response. It is very disheartening to say the least. Just know that you are not alone. I am still doing the retail job until I find a new job but it has gotten worse since I have to vacuum and steam (both of which make my back pain worse). Its a little hard money wise but the extra hours off lets me rest a little more. Talk it over with your family and look at it from all ways. If its what you must do, you can always cut back spending by going with store brands for groceries and the bare necessities elsewhere. Hard yes but we do what we have to do. Good luck!

I work in an office job and trust me it doesn’t make it easier.
I still work full time but spend every night crying in pain cause of all the stress that causes so many problems. It would be so nice if employers and doctors understood more of what we go through. For instance some days I have to use a cane to walk and others I can be ok but they act as if I am faking it. I just pray that some day someone finds a way to help us all, something other then sticking us in another machine or giving us another pill. It would be nice to have ability to play with my son who is only 8 the way I did with my older kids. I hope you all find peace.

Thanks for your reply. I did feel alone alot before finding this site as there is not many people over here in New Zealand with Chiari. I think there is a bout 9 people but I personally have heard about 3 or 4. This site has been awesome and I dont know where I would be today with out it.



Furie18 said:

I work as an assistant manager at a retail store in a mall. Believe me, I know how you feel. Because of my problems, I was pretty much forced to go to part time by my district manager. Not my store manager but HER boss. It was either that or quit, whicn I cant afford. Going to part time has not helped much. My PCP as well as my neurologist both want me out of retail asap. But I have done that for 15 yrs and I dont have the degree needed for some office jobs. I have been applying for some office assistant jobs where I just sit there and do paperwork and work the office phones like ina drs office. But so far I keep getting a "we have found someone more qualified" response. It is very disheartening to say the least. Just know that you are not alone. I am still doing the retail job until I find a new job but it has gotten worse since I have to vacuum and steam (both of which make my back pain worse). Its a little hard money wise but the extra hours off lets me rest a little more. Talk it over with your family and look at it from all ways. If its what you must do, you can always cut back spending by going with store brands for groceries and the bare necessities elsewhere. Hard yes but we do what we have to do. Good luck!

I work full time and now that my balance issues are controlled I am doing much better. I have not lost much time off work thankfully because it is very hard for me to take off. I did physically therapy at my insistence of giving it a try and it really did help with balance. I figured it was definitely worth a try. I unlike many do not have severe headaches, but I did get such severe balance and coordination problems I could not walk a straight line. Very scarey. They thought I was having a stroke. I will be thankful for the fact that the symptoms are now controlled. I have a mild nagging headache pretty much all of the time and pressure in my eyes, these are not enough to slow be down from working. I do find fatigue at the end of the work day is pretty limiting for other activities.

I am going through the whole work thing too. I just had another set of MRI's on Friday. The NS is telling me I need to have the decompression surgery soon because the SM is getting worse. The problem I have is in PA employers do not have to have short term disability insurance for employees. Finding this out, I picked up other short term insurance, who has now told me that I have to wait a year because the CM and SM have already been diagnosed. The major problem with this is, I am the main source of income into the house and without my income, we can't afford to stay were we are. So now I have to ask myself, do I have the surgery or do try to wait?

Wow this all sounds so familiar. I am a Registered Nurse in a family practice and I have been out of work now for a month because the headaches got so bad and i episodes of dizziness and blurred vision. Sometimes my hands would go nmb and when you are about to draw blood or start IV or give a shot...this is a huge problem. I have used all PTO and while I do have LTD its after 12 weeks. It has really been hard as I know I'm letting the team down. I miss my patients, and I am the primary provider for my household so it has really been stressful. I am only 43 and I really dont think Im ready to be labelled disabled I want to try to work as long as possible.

just curious...how did you get your balance issues under control? That is my problem with Chiari. I fall over constantly, even with a walker! It's almost like I'm drunk! I have so many bruises from banging into things and I end up sitting and crying because this is not only putting me under emotional stress, but I'm starting to really hurt myself by bumping into things...



Patty said:

I work full time and now that my balance issues are controlled I am doing much better. I have not lost much time off work thankfully because it is very hard for me to take off. I did physically therapy at my insistence of giving it a try and it really did help with balance. I figured it was definitely worth a try. I unlike many do not have severe headaches, but I did get such severe balance and coordination problems I could not walk a straight line. Very scarey. They thought I was having a stroke. I will be thankful for the fact that the symptoms are now controlled. I have a mild nagging headache pretty much all of the time and pressure in my eyes, these are not enough to slow be down from working. I do find fatigue at the end of the work day is pretty limiting for other activities.