How many of us work?
October 16, 2013 at 10:43 am
Hi everybody, while laying in the hospital bed my neurologist did a short exam and proclaimed me fit to work. I think my strength and balance problems will keep me from working and am wondering how many cidp patients work either a labor or management job. I have only worked 6 weeks since 4th of July, my job is very active and I lift a fair amount of weight.
October 16, 2013 at 3:27 pm
I wouldn’t try to second-guess your neurologist, but such a question is a matter of judgment and depends on what kind of work. A sample taken here wouldn’t be representative anyway, because those who are fully recovered and back to work are less likely to be here posting.
I could work at my previous employment, which was not physical labor, but I am retired.
October 17, 2013 at 2:26 am
Harry, I seem to recall in another of your posts that you work in construction. That can be very physically demanding work, especially for someone challenged with CIDP.
Unlike GBS, recovery from CIDP can be very slow and many of us never get back to where we were physically before being stricken with CIDP.
I was stricken before retirement age and had to fight my way through several disability rejections before finally getting accepted. As soon as I hit retirement age I applied for social security.
I had my own business consulting service before GBS/CIDP/MFS. I had told friends and family I would never retire, just take on fewer clients from time to time. I had just cut my work schedule to 2 weeks per month and joined a Tennis league, planning to play as often as I could (I was in good shape and used to play semi-professionally).
Thanks to CIDP, I am now a wheelchair bound paraplegic and in complete forced retirement. I’m not a good example of a typical CIDP patient and I think most CIDP patients recover better than me and quite a few return to work.
I hope your neuro is correct and you are able to return to the work that you enjoy.
October 17, 2013 at 2:45 am
I agree that physical labor should not be overdone while recovering from CIDP. My rehab doctor advised me not to overexert myself and she was right. Overexertion can be exhausting and it can take a day or more to recover from work that a normal person would bounce back from with a short rest. It was a year and a half out before I felt I didn’t have this effect. A few times I did some heavy work prematurely, and it was much more difficult than it would be for a normal person because people with CIDP reach exhaustion so much sooner. If your work is of this nature, then you need to get back into it carefully to see what you can tolerate.
Another aspect is how long yoy can stay on your feet. Although my recovery has been good, and I can walk with only minor disability, I cannot stay on my feet for a long time because the pain increases the longer I am on them.
Then there is the pattern of your disorder. If you are fortunate and do not have relapses it will be easier than if you are frequently fighting off relapses.
October 17, 2013 at 9:42 pm
Harry, I have GBS and not CIDP. Been off from work since mid-May. I too work in the construction industry but don’t do the physical labor type work you do. I’m a safety consultant and do more inspection type work than manual labor but I still need to be able to climb ladders, scaffolding, and into manholes. My knees are still kind of weak. I’m aiming for Jan 2014. Hope you recover so you can go back to work. Staying home sucks.
AnonymousOctober 27, 2013 at 1:11 pm
I’m a 52 yr old male executive, in the Financial Services industry, and, at first, I kept going into the office, stumbling and falling on the way to the car.
Then, while still searching for a diagnosis, I began working remotely, overseeing a growing department from home and attending meetings via conference call. With all the changes going on at work and a relatively new management team, I was online 12 hours or more each day. My boss is located 2 time zones away.
Once I had my CIDP diagnosis and began treatment, I made the assumption that I would immediately begin feeling the effects and instantly “get better”, so I went back into the office, using a cane to navigate the treacherous parking lot and my new handicap placard to get closer to the door. Again, I worked tirelessly but struggled to avoid falling in front of my growing staff, limiting face-to-face meetings. I had lost nearly 40 pounds and I watched the shock on the faces of co-workers and staff, when they saw my clothes draped across me as though I were wearing hand-me-downs. Mostly, I was mentally on top of things, but the pain would regularly distract me and have me running at 60-80%. I’d kick my shoes off the minute I got into my office and make people come to me, which is a deviation from my standard of Management by Walking Around (MBWA).
Eventually, during a visit to my location, my boss suggested that I either take a less stressful role, until I healed enough, or take a short term leave of absence, using the company paid short term disability insurance. I was already using FMLA benefits so I signed up for LOA, which I am currently on.
I’m currently on reduced income and it’s not easy turning my department over to another, while I am out. I have no guarantee that my specific job will be available when I return, but ridding myself of the daily stress has been very helpful. Now, all I have to do is keep myself occupied, manage treatment (IVIG and Solumedrol every two weeks), and hope that significant improvement occurs before the end of March 2014. At that point I must deal with the possibility of long term or permanent disability.
AnonymousNovember 1, 2013 at 12:43 am
I have had CIDP since 1996. A one time shortly after being diagnosed and doing IVIG treatments I couldn’t walk and couldn’t stand on my own. I did spend 3.5 weeks in the hospital being discharged using a wheel chair and walker. Slowly with steroids, physical therapy, and a great pair of AFO’s I started walking again. It took me a few months but I did it. I did go back to work about 4 months later- thank god I work for a caring company- work for a company that cares for the MR/DD. Anyways I still have trouble with my balance (I look like Im drunk at times esp when its dark where im walking ), I still don’t have reflexes in my legs, and I do get tired very easily. Im lucky in the last 10 years Ive been a area coordinator in my company I do a lot of paper/computer work, drive to different locations and use my brain rather than my physical strengths. I do have problems with the numbness in my hands and feet everyday. Sometimes I get very tired and wonder how long I can do this. I don’t look like I have a disability but I do. Ill keep going as long as I can. I wonder what the future holds for me?? I just take it one day at a time. All you are in my thoughts and prayers!
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November 14, 2013 at 2:11 pm
I was diagnosed with CIDP in 2011. I work full-time 10 hours a day. I do feel fatigued and feel some pain and tingling but not so much that I can’t make it through the day. I do notice my legs feel heavy when I have to walk any distance for running errands. But I mostly stay in the office and sit at a desk. Fatigue sets in at night but I can’t rest when I get home. I have a 10 year old daughter that requires my attention. So I am coping and trying to get along with CIPD and not slow too much. I was lucky that I was diagnosed within 5 months of my first symptoms and got IVIG started as soon as diagnosed. I think this has kept my symptoms more mild as I have not had a lot of permanent damage to my nerves. Fitting the infusions into my busy life is a drag though. I hate to give up a whole day every 21 days. Especially one of my precious days off. But I do what I have to do. Good luck to all who try and juggle work and this horrible disease. It is hard but I am blessed that I can still keep it up. I pray I continue to do so as my husband is unemployed and has been for over a year.
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