Wow! It sounds like you are between a rock and a hard place. Fortunately my wife drives, or I'd become a hermit.
Good Luck & God Bless!
Henry
Hi
Unfortunately, my husband was diagnosed in February 2012 and has been unable to work since August 2012. He can no longer get himself out of bed or off the toilet, despite a commode chair. He cannot go up or down stairs alone and is housebound unless someone takes him out in a wheelchair. He has been having IVig since February, now increased to every three weeks and has just started on steroids. We have been told that the diseases is still "active" so do not know yet how much further it will go. I think you are very lucky to still be able to work, although it is exhausting for you. I do hope you continue to be able to work in some way as the lack of income and stimulation is very depressing.
Best of luck!
Henry, I can so much identify with you. I drove a short distance yesterday for the first time in 3 to 4 weeks, and was able to spend about 2 min. in the grocery store, which is an improvement. In fact, I consider that a major event. Fortunately, when my wife is at work, I have friends or my daughter who just got her Operators permit drive me to where I need to go. Still, being at home all the time, I do feel like a hermit, and know that it is causing further debilitation.
I've gotten to the point where I can't separate the physical symptoms from the psychological symptoms. I guess that's true for most of us. Thank God for the spouses!
Henry said:
Wow! It sounds like you are between a rock and a hard place. Fortunately my wife drives, or I'd become a hermit.
Good Luck & God Bless!
Henry
Lisa, Where about in Michigan? I live in Michigan. I live in Standish. I would love to find someone close by. But I doubt will ever happen. It's been almost 4 years...haven't found anyone close by.
Jeanbell said:
Lisa, Where about in Michigan? I live in Michigan. I live in Standish. I would love to find someone close by. But I doubt will ever happen. It's been almost 4 years...haven't found anyone close by.
Lisa Jakee Hilton said:
Jeanbell said:Lisa, Where about in Michigan? I live in Michigan. I live in Standish. I would love to find someone close by. But I doubt will ever happen. It's been almost 4 years...haven't found anyone close by.
Teresa, please tell your husband that he needs more aggressive therapy. Check with Mayo Clinic. I was paralyzed. Couldn't move from the waist down and could barely move my arms. I walk now, even my face was affected. I was taken off from IvIg and put on extremely an extremely high dose of Cellcept and steroids. It was really hard as I had effects from the high dose of steroids. But I got through it by them giving it at a slower rate and by drinking tons of water before the IV infusion and taking 2 extra strength Tylenol and a Benedryl.
Teresa Carr said:
Hi
Unfortunately, my husband was diagnosed in February 2012 and has been unable to work since August 2012. He can no longer get himself out of bed or off the toilet, despite a commode chair. He cannot go up or down stairs alone and is housebound unless someone takes him out in a wheelchair. He has been having IVig since February, now increased to every three weeks and has just started on steroids. We have been told that the diseases is still "active" so do not know yet how much further it will go. I think you are very lucky to still be able to work, although it is exhausting for you. I do hope you continue to be able to work in some way as the lack of income and stimulation is very depressing.
Best of luck!
My CIDP started about 6 years ago. I work as a Project Manager in the Engineering enviroment which means sometimes going to sites and climbing to top of structures. I am absolutely wiped out after a days work and if I was in a better financial position I would more than likely retire. Having said that I do enjoy my work but the exhaustion is debilitating.
I know exactly what you mean and what you are going through, I loved my work but when it got to the point that I couldn't run up and down the courthouse stairs, after over 20 years, I had to re-examine my position and decided to retire. Gary
Thank you for bringing this discussion out. I am new to this site but have been living with CIDP for about 12 years. When I was diagnosed I was working full time as a Massage Therapist, building a wonderful private practice working with terminally ill children and their families. I had an office where I saw the parents of the kids and then I did home visits to work on the children. I had a table in my car that I commuted with and I loved doing what I was doing. I continued to work full time aithout any treatment for the cidp for about 5 years, and then everything came to a crashing halt. Because I was pushing myself so hard and was so fatigued every day I became more and more symptomatic. one day while massaging a client, I tripped and fell. I knew then that I needed to start getting treatment. So I started IVIG but after a couple of treatments I got septic menengitis. so we stopped that and I was put on cellcept. Meanwhile I kept pushing and working. My muscles were exhausted and depleted with no repair time in between sessions so I started to get pain in my neck and shoulders. The pain was getting unbearable. But I kept going. One morning I woke up and my left ar m and hand were completely numb. It turned out I had cervical stenosis and exaserbated it by working so hard.So literally
overnight my business ended and I had to go on disability which I've been on ever since. Its taken me 6 years, so at to adjust, as I was only 40 years old and not ready to retire just yet. But not working allowed me to get the proper rest I need and figure out the right treatment for the cidp which ended up being Methotrexate. Its been a long and winding emotional road to this place now of acceptance of being "retired" and rebuilding myself. I have regained much of my strength
Thank you for allowing me to share and I wish you a peaceful journey.all my best, Linda Cala
( I had to finish my previos post in this new one. )
Hi just a brief note - i’m still working full time.also a single mom w/2 boys at home that have no clue or very little compassion to help.Was receny dx with Cidp but have had issues since 2008. I have been able to continue to work w/assistance from a Mobility Servicr Dkg. She kerps me from falling no matter how badly i trip! And she pulls me along down the hall at work when i feel too tired to keep going. That unconditional love from a dog & her wllingnesd to jump up at any instance ( as she cat naps next to me) to help me walk wherever has helped my heart & mind to keep going. I start my IVIG treatments soon as the steroids have helped a little but not enough. I really cant retire yet but who really knows where we will be next month.
Best Wishes to you. I hope you get some good news soon. A Mobiliy Service Dog is an option that employers must allow if that will help you. Just a thought… Mine has been a life saver to me to continue to work.
Best wishes to you all,
Terri
Sorry for typos - my vision or ability to focus goes in & out. Have any of you had that problem too? I wear contacts & wonder if that is part of the problem. 1 is for reading & 1 is for distance. Any ideas?
Thanks
I agree exhaustion is a huge problem. I have frequent vacations and am learning no to over schedule myself. I used to be able to go 24 - 7, now my disease dictates what I can do. Have patience with yourself. Get adequate sleep and if you can't do it, admit it and decide on a SW job that is less challenging but pays the bills.
Thank you everyone for your comments and suggestions. This being something pretty new that I am still learning to deal with (especially the uncertainty party) I appreciate your help. I'm sorry it has taken me awhile to respond. I've actually been in the hospital with a blot clot in my arm due to IVig therapy. I'm so upset because I go to see my neurologist tomorrow who wants to take me off of IVig again and continue to keep me on the Imuran and Prednisone. I'm at my maximum weight from the prednisone and starting to get a very light set of sideburns (or what appears to be). The prednisone has messed with my blood sugar and I don't want to have to go on insulin to control another side effect of another drug. I was put on blood thinners (coumadin) for 3 months until my clot dissolves. This is all so overwhelming and disheartening at the same time. I read of how much the IVig helps so many of you and I know how good it makes me feel and then WHAM, some stupid side effect sets me back. I'm afraid my employer (a hospital) is going to get weary of my continual absences due to all these ups and downs and "uncertainties" of this disease.
Lisa in Mich
Lisa Jakee Hilton said:
Hi Jeanbell: I live in the Novi, Northville area. Approximately 1/2 way between Detroit and Lansing.
Lisa Jakee Hilton said:
Jeanbell said:Lisa, Where about in Michigan? I live in Michigan. I live in Standish. I would love to find someone close by. But I doubt will ever happen. It's been almost 4 years...haven't found anyone close by.
Hi Bill:
Yes, I noticed there were many who responded who work in the Mental Health/Human Services profession as well! Very interesting!
Bill said:
Hi Lisa.
I was diagnosed two years ago with CIDP, 12 months after major spinal surgery. In hind sight I think the spinal problems camouflaged the CIDP so now we (the specialist as well) assume that CIDP was there prior to the surgery. I am semi-retired so have the luxury of picking and choosing my hours and days. I find that fatigue fluctuates from day to day and am likely to “measure” myself first thing in the morning and then act accordingly. I was on IVIG last year but that ceased due to other side effects. I have recently re-commenced with another type of IVIG (so the specialist states) and this has not brought about the previous side effects although I cannot feel any changes in my symptoms. Due to the weight problem associated with some of the meds, so far I have been able to remain “med free”, not sure how long this will last as one of the consequences is very disruptive sleep. I have tried Physio but find that I use only some of the exercises so do maintain these at home rather than through a clinic. As with the others, this CIDP seems to present differing symptoms and restrictions for each of us. It would be great to actually read of someone else who has exactly the same symptoms. I also have sensory Ataxia as well as “getting older” so there is some level of questioning regarding what is effecting me today, is it CIDP, aging (I need to be honest with that) or the sensory ataxia. I am thankful that I have a very supportive wife and family. I do persist in achieving my goals each day as for me, I need to have some level of accomplishment in my days. Interesting how many replies are working within the human sciences field (I was in Child Protection for over 25 years and now manage a Church Community Support service network). Blessings to all of you over this Christmas season and don’t give in or give up.