First of all - Hi, I am Jenn. I'm so happy to have found this site. The information and support that I see here is overwhelming. In a good way. : ) This is my second post - I'm hoping that I do this correctly. My question....
Did you disclose your illness to your direct manager and co workers? I work from home in a relatively stress free job, but I also have deadlines, and I do alot of reports that excutive management read. I am on such a low dose of meds, and I feel like my brain is slow - that I am slow, and I don't know how to compensate for that. Right now I am so far behind in my work from the depression I found myself in when I was diagnosed and now these meds.
Jennifer, I won't lie to you and say it is easy to work with TN, far from it. I do work and have a real struggle sometimes. And yes I have told my immediate boss and co-workers, I have had to as my attacks are too severe to hide. Depression goes hand in hand with TN but for me, I would be more depressed not working. I would consider long and hard before telling all. Try popping the words Work and Disclosure into the search box at the right hand, top of the page and you will see previous discussions. I am sorry this is yet one more problem for you :(
Hi Jenn! I am so sorry to hear about how hard it has been for you. I completely understand. I am a Realtor and have been blessed with being able to work from home but the drs keep changing my meds and my body has not been taking well to them. I can’t function at all most days. I am exhausted, my mind is foggy, I’m very slow and I can’t determine if I’m depressed or if it’s all medication and pain causing my emotional state of mind. I have had to be up front with my broker and some of my clients. I have had to let go of some potential clients because I couldn’t get out of bed. I am blessed to have an amazing company that has supported me all through out my illness. I have found most people understand but there have been a few that don’t care what problem I have they just want to make sure they are getting the best care! So definitely be careful who you tell. Make sure you feel comfortable that the person you tell is going to be understanding and compassionate. These people will help take some of the load off you and get someone to help back you up on the days you need that help.
I wish you the best of luck and pray healing over you!
Hi, Jenn, Ten years ago, when tn came to visit my face ( sounds funny, yes?), we were at a peak in business. My hubby worked with me and things were hopping. It was much brighter than I had imagined and we were beginning to lay hold of a whole new adventure. We had worked and planned for a decade or so for this time in our lives. Then, BAM, tn came knocking! My hubby knew before I that the cost for tn would be high if meds and procedures failed. So he planned to go back into the work force under a large company. I talked to my clients, whom I had known for about 12 years by this time, and let them know that to be safe, I would be taking my workload down to about 50% over the next three months (once I finished out my deadlines). I hired colleages to help me finish and basically worked through them. For the work that followed my own demotion, I asked for soft deadlines (where I could have extra time to account for the time tn steals!) and my clients helped in this way. This has worked well for me all these years. I will say, with my clients being pretty sharp, they have commented at tiimes on the difference in my approach to work and the seemingly slower response tiime I have now, but it’s usually in the form of a joke. I don’t mind since slowness on the max amount of meds is nothing I can change, I am grateful these folks still support me, even through humor, after all this tiime. When you have a high functioing job with tight deadlines, it brings stress. The key is figuring out how you can function well and with what size workload. I’m with Jackie in that if I did not have tutoring or graphic art project challenges, I may be more depressed. With the responsibility, though, there are tiimes when I completely forget about this visitor, tn, and enjoy the design process or being part of a young person’s life when the light bulb of understanding goes off BECAUSE of my efforts. My life is beautiful and manageable, even with this unwelcomed visitor! I wish you the best of luck as you map out the next few months and year, perhaps. This is a hard road, and one that winds with remissions and then high pain, so we must be careful, and thoughtful with how we manage our choices. I pray you find the right treatment and/or meds that bring you back to a place of thriving in your life. Many blessings, my Friend!
Depression is our unwanted companion. It is a common experience for TNers. It comes and goes. Even after I received meds that reduced pain to tolerable levels (much but not all of time). I grappled with depression. One afternoon, while hiding out from the world and roaming around cyberspace, I found this site. It helped me a lot to get back into the world. Perhaps, if I hadn't been depressed that day, I might never have found, Living with TN. So there, a reward from depression. Most of us gain some kind of acceptance of this miserable disorder. We move on the best we can. The personal and informational interaction of our site provides overwhelming comfort and companionship.
I'm a Taxi Driver and I benefit from a great deal of independence. I don't have to make an issue of it. Some people know, some don't. My fear is that if I ever have to increase the Meds, my driving days will be over. So far so good. Before I was properly diagnosed and medicated, I hardly spoke at all without pain and effort. Now, I'm back to being a blabber-mouth.
Most of my friends tell me they prefer my pre-blabber mouth days. ( breakthroughs still occur-and the lower trigeminal nerve which is always painful but tolerable occasionally stiffens up causing great discomfort brushing teeth, chewing talking, cold weather,walking talking etc) Today, I took the day off. I'm tired, sick of it all but not depressed. I get to hang with my TN Family. Not a bad day!
I made it a point to let my boss know that I have a "nerve condition" and I told her the medicines that I take "in the event anything happens to me at work". I didn't make it a big deal, I just told her that the doctor said I should let someone know- I don't know if your work has an HR person but that would most likely be a good person to talk to. I understand what you mean with the depression, you just have to keep looking forward and focus on the positives. I know thats easier said then done but I try to think of my job as a way to keep my mind off of what is going on, and honestly I dont really tell anyone whats going on with me unless i want them yo know... hang in there, I hope that you start feeling better soon!
Yep...totally get where you are coming from! I teach high school and was diagnosed one month after school started this year, the last of Aug / first of Sept 2011. I have since missed LOTS of days with excruciating pain and trying to adjust to the meds...been on a plethora of dosages and three meds; ending with Trileptal - this works fairly well...most of the time. When you asked about if we disclosed our disorder with our 'bosses'...well...I did tell my principal and assistant principal so they would know I DID love my job and was just unable to do it at times. I have 120 students that are between the ages of 15 and 18...and yep, I'm still sane (most of the time) :D I told my students a miniscule tidbit about this and that I would need them to understand and help me out. Okay, that was a while back - since we don't have symptoms that 'show', it is hard for people to remember that this is an ongoing thing we deal with daily. I try to keep that in mind when I have those 'bad' days when I'm at work. Sometimes we feel so bad that we just can't help to get either depressed or have our nerves just become UNWIRED... ugh. I agree with others; this site has helped me immensely with having a VOICE to talk with others that 'get it'! Hon, please take it ONE DAY AT A TIME, do one thing at a time and give yourself permission to accept that the ONE THING that you get done is just fine; you will do the next ONE THING in a little bit...honestly, that's the only way I can get my teaching / paperwork / lab / etc done - period. That mountain is just tooooo big to try to climb in one big step! Take care of YOU, my friend!
I hope this moment finds you having less pain (and everyone else on this thread). My pain started while I was working full time as an office manager of a medical office. It was luckily only one doctor and massage therapist, but we were a very busy office. I was able to silently cry at my desk between patients or run to the restroom to throw up from percocet. He ended up being very selfish and not caring/understanding in the least. This past August, I was absolutely blessed with getting a job at another office - and I told the doctor and his office manager up front about my condition. At that time, I was still able to control it with percocet. In November my pain stopped responding to the percocet (and then dilaudid), and my boss was kind enough to work with me and we cut my days to Monday, Wednesday, and Friday. Ultimately, it's your decision and what you feel your boss/prospective boss would be ok with....but we all know it is hard to hide the pain!
I told my boss as soon as I had a diagnosis (which was really quick considering). She is being really good. I am kind of lucky that I am a registered nurse and so I work with people who know what it is like to deal with a chronic illess and pain! I am also quite lucky in the fact that if we run out of sick leave at work the managers often will offer you annual leave instead so you will still get paid. My boss has offered to cut my hours if needed. When I called in sick a few weeks ago the duty manager I talked to (we have to call our ward and then the duty manager as well) had had TN before and totally understood which was awesome. I don't want to give up my job and I hope it doesn't come to that. Though in my profession again I am lucky that I could find a local job (my job is in a major hospital 40mins drive away) with less hours.
it started for me 2 years ago. working since then.
everybody knows. and i get more understanding from if i were at any other job.
on the other hand - i runinng out of strength. don't think it will last long. talking makes my pain much worse. and no metter how "understanding" people are - you can not be around people at work and not talk.
sometimes i feel like a nightmare - when bieng at work... manging there and talking at condernces while people can't imagine how worse my pain is at that time.
i sit in front on my boss. looks relaxed. and the pain is like a HORRIBLE TOOTH PAIN.. and he can't notice anything . nobody can.
also a bit "mad" about my parents.. i know that only when i stop going to work.. they'll notice or understand something wrong with me. only than it will really bothers them. i can suffer 24/7 a day.. but if i go to work than "it's all ALL-right".
went to work for 2 years now (except taking much more "illness days" ) . don't know how much longer i can deal and still go to work .
hope made myself clear. can't even right clear nowadays.
I have struggled with trying to keep up without help and unless you are going to change your meds it will not work. The stress will make the depression worse, the depression and stress will make it more difficult to meet deadlines and missing deadlines will make stress worse, bringing you back where you started but with a bigger workload. Eventually you will be so overloaded you will be in jeopardy of losing your job, losing your sanity or both. I have been there.
You need to make some type of disclosure
If you are not behind yet, you need to find a way to redistribute or redefine your workload to allow for flexibility. Linda called it soft deadlines. I love that term. I sometimes use a co-worker to proof read some items before they go out because one of my meds turn me a bit dyslexic on real bad days.
If you are behind you need to figure out a way to use help to catch up so you can re-start with a clean desk.
This may be the hardest part - If you are a real go-getter: you might have to accept the fact that the promotion, the high end job, the top dog position may not be in the cards. Those jobs and TN are not a good fit together.
You will find great relief when you get rid of the stress of trying to do it all on your own.
You will figure out. There are some great suggestions here that will fit your job and personality.
Thank you all for your replies and experiences. They all gave me something to think about. For right now I am going to hold off telling anyone. I've just begun this journey, and I'm afraid if I speak too soon, I may jeapordize a really good job. For now I'm pushing ahead, like all of you, to make this work.
LyndaS - I will take a look at those links - thank you!
Thanks for the reply MinC. My husband tells me that at any time I feel like I can't do it anymore to quit. I'm fortunate that I don't have to work, but I honestly like to. I like the sense of freedom it affords me, and that I am contributing to my family. It's just been a hard adjustment, and I worry about how I will do this if my meds have to keep increasing and the side effects. I guess I'm getting ahead of myself. : )
No, your not. It has been a really hard adjustment for me. Not easy at all. But with Trileptal...I cannot really have a job that entails thinking processes. I keep thinking about performance reviews and not being able to concentrate and...it's just not worth the stress. Ya know?? Stress is not a good thing for us TN'ers. So it has been hard on both my husband and myself, but I am still contributing, for now anyway. Thank GOD. One day at a time, is all we can do with the pain. Min
That's my problem.... The thinking part. I'm SO slow. I have to double and triple check myself on things that I normally wouldn't have to, and then I'm in the middle of something and I forget what I'm doing. It's frustating.