Health Organization for Pudendal Education

Hi all, I am having a very painful day today, 7-8/10 and working whilst suffering like this is as I'm sure you all know, very difficult. My question is, do many people manage to continue working, or do you have to take time off on a long-term basis? I don't want to lose my job, daughter getting married next year and so need to keep earning, but it's getting difficult. I've been taking it one day at a time so far, but not sure how long I can continue.

John

Hi John,
I'm sorry you're having such a hard time but I certainly can relate to your difficulty! I'm working full time through this and it's so hard. However, my husband has been unemployed for the last 4 years. He just recently got a (very) low paying temporary job. The only time I've taken off is for doctors appointments. I'm an Admin, so I basically have a desk job. I do as much standing as I possibly can throughout the day. I found working while on meds much more difficult and I've been med-free for just over a year now. I had a much more difficult time concentrating and simply trying to understand what people communicating to me while on the meds. I work for a municipal Highway Department and it was humiliating to have the Operations Manager give me instructions, and I'd forget them as soon as he left. So, I would write things down as he was speaking. Unfortunately, that didn't work for me either, because I would write down the same 2 or 3 words over and over again (thinking I was writing accurate information). Finally, Operations would give me orders, tell me to write down what he was saying, and then stand behind me and look over my shoulder to see what I was writing. I still have a hard time concentrating some times because of the pain, but I do feel more in control of myself. On a more positive note, although it's difficult, working provides me with a much needed distraction from this horrendous pain. Admittedly, I'm total junk late afternoon/evenings. But I'm up and out every day and I really do think it helps me to manage the pain.
I don't begrudge ANYONE who is housebound. I understand that, too. But for me, I'm doing what I have to do to get by.
Warm and best wishes to you, John!

Hi Karyn, thanks for your reply. I guess I'm having a weak moment with the pain level as it is today, but I'm here at work and persevering. Trouble is as you so rightly say, by late afternoon I'm shattered, and then at the end of my working day I have a 40 mile drive to look forward to, so Meds are out of the question. Overall though Karyn, you put me to shame, you've obviously had so much to cope with, and by the sound of it, you've done so admirably. I need to pick myself up and get on with it.

I'll say again what I have already mentioned on the forum, having the opportunity to communicate with others who share this awful experience is an absolute Godsend, it gives me some strength in weaker moments.

Very warm wishes.

John

John-

I also work full time. It's is absolutely a struggle but I have no choice sine my husband is also unemployed right now and my health insurance for me an my whole family is through my job. I am an executive at a large company and it's very challenging to work while taking all these meds. I'm not the top performer I used to be -but I do my job to the best of my ability. I alternate between a standing work area and sitting and when i sit - i do so on blue gel ice packs that are cold but not frozen. I worry how long I will be able to continue to do this though.

Merrie

Yes, it certainly is difficult and you're entitled to your weak moments, John. I'm fortune enough to have a short commute. I only drive 20 minutes each way.
I used to love driving but now I hate it, because I can't easily shift my position and there are many days I cry all the way home. My advise to you about your grueling commute is to find an upbeat radio station (or cd), crank it up as loud as you can tolerate and SING AT THE TOP OF YOUR LUNGS!!!!!
[quote="johnd.h"]Overall though Karyn, you put me to shame, you've obviously had so much to cope with, and by the sound of it, you've done so admirably. I need to pick myself up and get on with it.[/quote
Thank you, John. Very kind of you to say! But everyone is different and everyone copes differently. I really don't think there is any right or wrong way, nor do I think one's pain is worse than anothers. In my opinion, pain is pain. We each need to do what we can to get through it.
Hoping for better days for you!
Warm regards,
Karyn

merrie wrote:John-

I also work full time. It's is absolutely a struggle but I have no choice sine my husband is also unemployed right now and my health insurance for me an my whole family is through my job. I am an executive at a large company and it's very challenging to work while taking all these meds. I'm not the top performer I used to be -but I do my job to the best of my ability. I alternate between a standing work area and sitting and when i sit - i do so on blue gel ice packs that are cold but not frozen. I worry how long I will be able to continue to do this though.

Merrie

Merrie, I am in exactly the same position with my Health Insurance being through the Company, it's an added burden to what we already have to get through. Reading through so many posts I feel so sorry for all who have to go through this, but get through it we must to the best of our ability I guess. Boy, I wish I could make it better for you all (and me too of course )

Karyn, funny you should talk about listening to music and singing at the top of your voice, I did exactly that this morning, and tbh I felt a bit better after doing it. It really saddens me to read that you sometimes cry all the way home, must admit I have to really dig deep not to do the same at times, and now is such a time! But, I just try to believe it will get better, and take it one day at a time.

Kind regards,

John

Hello Everyone,

I worked for two years. It was excruciating most of the time. I had to increase the dosage of my meds until I too had to admit that I was getting forgetful, couldn't concentrate, and felt very defensive when it came to the quality of my work, I was an overachiever. Long story short, I was going downhill real fast! I honestly believe I was on the way to a nervous breakdown. I finally couldn't take it and went on short-term disability, I'm waiting to hear from long-term. This new forced retirement has really made me take a look at myself.

So many of us base our self worth on what we do. That's such a shame but it's so true. When we no longer can function, we feel as if we have no purpose. I'm going on six months of medical leave. The isolation has been terrible. I crave conversations with folks, and social interactions. One good thing that's come of this, it sure doesn't take much to make me happy anymore. If you can, give yourself the permission to quit working and come up for air. Don't get me wrong, we're struggling to make it but we're making it. It was a toss up for my hubby. Did he want a wacked out wife who still helped bring home the bacon, or did he want the wife he used to have prior to the surgery? I'm not the same person but closer to what my personality was prior to the chronic pain.

Hi John,

I am so sorry to hear of your pain, especially the rough day today. I am also a working PN sufferer. I do believe my symptoms are more mild that others' on this forum, due to the fact that I am not bed bound and am still decently functional in terms of daily tasks. However, it is very difficult to work with pain. My commute puts me in the car for just a little over an hour each day, and that's not fun. I teach high school, which is an easy job to do standing I do sit occasionally to answer emails, input grades, type lectures, but I stand much of the day.

Last winter I was in so much pain I would go to the bathroom and cry in between classes. On my commute home I would call anyone I could think of to distract me from the pain. I also listened to books on tape in the car as a distraction. I used to take meds, but simply couldn't function at work. I would get confused in my own lectures, forget deadlines, forget students' names, etc. I prefer pain with a clear head, although I know others' pain is so great they must take meds to stay at work. If I must, I won't hesitate to try them again. One can only handle so much pain. I currently rely on the muscle relaxing properties of my 5 o'clock glass of wine.

My husband is in PA school, so I also carry the benefits (not to mention the income!). Quitting is not an option right now.

Take care,
Lauren

I teach and carry the insurance. I commute 40 mins each way. I do take Nucynta at work and so far I am okay but by noon I am ready to go home and lay down. I take a zannax mid day to help me through the day. Some days are worse than others. I use an electrical wheel chair to go long distances at work. It was for another teacher. It helps on days I can't walk my class to lunch. Hang in there John we understand how you feel.

WOW!! John thank you for starting this thread. While it is sad that we are all suffering like this it is also amazing to find a group of people that understand. I am an Exec Asst and still working. I commute 40 mins each way and am in agony by the time I get to work. Luckily we have an awesome Furniture shop and they made me a couple of boxes for the top of my desk, one holds my computer and the other I can work from all while standing. I so rarely sit anywhere any more. Even my co-workers know that if I'm to join them at lunch it needs to be somewhere with high top tables so that I can stand while we eat.

I too tend to jack up the radio on the way home or call friends/family to chat with. I'm a single mother with a teenage son, so I am the sole income with the medical benefits. I do have short term disability but I'm trying not to give in on that one yet. My DO suggested I learn to live with the pain but finally gave in and wrote me a note for intermittent leave. So now I take one day a week off from work. There is just no way I can work, standing, five days straight. As if the pain isn't enough, my ankle swells up to the size of a softball.

My boss has been pretty understanding. She just keeps saying she's glad I keep coming back. As I up the meds though I am really worried about the memory issues. I've always written everything down, now I'm having a hard time focusing in on what I'm hearing long enough to write it down. I just keep on trying.

I want to thank all of you for being here and sharing. It does make a difference.

Tracy