I thought I would start this thread hopefully for inspiration, and so we can see how many of us have to get ourselves up everyday despite issues such as fatigue,malaise,pain, and so on.

I have to get up every morning around 6 am to start my day. I make my one and only cup of coffee, and go into my computer room. Once there I like to look at the sharemarkets around the world. That can either make me happy or depress me a bit.

Then I get on Braintalk and look at the threads and see if I can offer support or anything to them.

Next comes my shower,dressing, making kids lunch & dressing kid, and then out the door we go to the big city job.

I like my work,but mostly these days I work for the money. Meaning that I can't afford not to work,and I would loose everything if I stopped. Even when I was very ill last year, I had some modest time off from work, but had to go back and just grin and bear it. I don't have enough savings yet to consider retirement, and my house is still mortgaged. I also don't have any family that would assist me financially.

But I beleive that although I got bodywide PN, I got only up to what I can truly bear, and keep going. So I am thankful for very small miracles today, and I hope others will also share their stories for the new comers.

Have a great day-

Aussie

Hi Aussie,
I am one of those that gets up and goes to work, I start my day at 5:30am
slowly. I have degenerative disc disease and mornings are very painfull, so I read the paper, sip coffee, read my new stuff on the computer, sip some more coffee, wait for my pills to kick in and then off to the shower.
Most days since I started Lyrica are okay, but there was a time this summer when I discussed disability with my neuro. He says I have the documentation to go "out" on disability, but I prefer to plug away as long as I can. For now, Lyrica is working for me and I can manage my back pain most days. Sure do miss those painfree days I took for granted though.
Janna

--but being a teacher/tutor who does primarily test preparation and college advisement, my job tends to be much more an afternoon/evening/weekend sort of thing (which is when my students are free from their OTHER educational activities).

It is also somewhat seasonal (though there is more year-round prepping than there used to be). Still, during peak times (such as early autumn), I may well work all seven days a week, and total 60+ hours. Fortunately, I do have considerable latitude as to how I set my schedule.

It's important to remember, though, when this acute-onset body-wide condition first hit me, I was completely poleaxed for approximately two months, and only gradually built back up to the schedule, as my Neurontin dosage was titred up sufficiently to get decent pain relief and my increased supplements were also building up. (It's also probable that the condition was monophasic and most of the damage had been done by then, and I was able to start working again due to my body being given the chance to begin repairing damage, though that repair was and is slow and incomplete.)

While I don't have to get out of bed early for employment reasons, I do have to for family reasons; my wife is gone to her job by 7:15AM and I get the 8-year-old ready for and off to school, which we walk to every morning.

I work nights, mostly. I have always worked, no matter my pain levels. I find ways to minimize my discomforts..as many of you know. Nights are easier if you have pain, I have discovered.

I worked thru my right knee issues. I worked thru my leg injury (luckily I found a place
that would let me sit sometimes). I work thru my foot issues (I wear unglamorous shoes now).

I am working NOW...stupidly...since I want to retire.

I am very stoic. I do not normally work full time however. Lately I have been though and this is changing in November. I used to average 32 hrs/wk or so, sometimes a bit less. I no longer do overtime, however. My schedule now is fairly flexible for me..I choose usually to have a day off in between instead of in a row..I can handle that better, but it leads to working weekends and holidays. Having a day off and not working all in a row is easier for me.
Since I have no kids at home now, it doesn't really matter..and my hubby does not complain. (that helps a lot). I don't think I could do 9-5 40hrs/week in a row anymore. I confess I do sleep a lot on my days off, and sort of waste them sometimes. I pamper myself much more these days.
I credit my SAMe for most of my abilities today. SAMe really turned back the biological clock for me. My body cannot take any of the credit anymore! LOL

I work fulltime in a doctor's office and yes, I too must work, I am my support. My worst day is Thursday, we are there from 9-8 and I work the entire time frame and Friday's, I am putty. Friday has been deemed my day of rest.

Aussie, I never heard it said this way: "bodywide PN"! That's me too, now I have a name for it. My worst problem is the headaches I get from the PN in my neck and shoulders, except for the days when it feels like there is a pinched nerve in my shoulder and my arm and hand ache terribly.

We each do what we have to do and go from there. There will be a day and I'm thinking it won't be too far into the future, when I will have to request fewer hours on Thursday. The other 8 hour days are doable, but that 11 hour day does me in. It's a busy office and my multi-tasking is slowing down. I just keep saying, "YOU CAN DO IT!!!!"

Hi Aussie,

It's laurie, I finally found this site and I am so happy!!!

I am here at work right now... I work 7:30 am - 3:00 pm, Monday - Friday. Mornings can be rough, but not so horrible that I can't get up and start getting ready for the day. I too have body wide PN. My legs have the worst of it. I can stand all the aches and pains in my face, neck, shoulders, arms and hands. But, my legs now that is another story. Fortunately my med regime has given me my life back. I actually weaned my evening Lyrica pill. I have gained so much weight on Lyrica. I am more disturbed by that now then anything else.

But, back to work. It is hard for me to concentrate. I get very tired too. It is hard to sit in the many meetings a day that I have and not dose off. I am so disorganized too and procrastinate. I was never that way at all. But, I plug away and pray that with each passing day, month, year that things will get better!

who continue to work despite this illness,continue to raise kids,continue to soldier on. I have thought of throwing in the towel once or twice myself, and then the almighty sent me a "sign" if you will.

So that got me thinking..

I am probably not the only person who is tired, I am probably not the only person who feels pain, I am probably not the only person who has symptoms, and I am probably not the only person who wants to go home early. I bet everyone in the office wants to go home early. LOL!

Well I hope this thread offered some new comers some inspiration, I know it has for me. By the way I found my old Avatar! One day I may replace it with an actual photo of myself, although I dare say the current picture has actually captured the expression I usually have anyways.

PS. Laurie I am very glad you are back!!

Another worker here i do a long day as a deputy headteacher in a large school.like yourselves i am learning to adjust to my condition.my pain is considerably worse after a very long day--8am to 10pm if we have evening meetings etc but like you i try to be positive,take inspiration from yourselves,particularly 'wings' who took the trouble to write me when i was at a very low point.i am forever grateful
a great post Aussie welldone
David

There has probably been a person or two, who looked after us and kept us going when we were at our lowest. I too have such a person that I am very grateful too.

I hope that illustrious Angel you speak of "Wings", will post a little something about inspiration on this thread too.


Have a great day

alot depends on your age, and experience.

It is easy to get discouraged/depressed. I have been there and done that.

When my foot PN was at its worst I was hypothyroid, but my tests did not
show it clearly. That was over 25 yrs ago before my son was born. Then after him, I was so tired, but busy with the new baby. My carpal tunnel resolved after the pregnancy, but my feet did not. In time I finally got the thyroid fixed, and my feet really woke up and the walking on cut glass went away.

For me PN has been a changing thing. It has been mixed in with arthritis and
MP (a side effect from my C-section), then it was overwhelmed by my right knee issues (for several years), then my leg injury.

Each time I pass thru a transition, I have been lucky that my pain has
ebbed and that experience has always given me HOPE. When I started supplements, EFAs and Thiamine years ago, I had another remission.
So I see waxing and waning in my own experience, and I think that keeps me going. I never have felt truly stuck...with no hope of improvement. This may take a while, years, in some cases, but I have always rallied. When I have a bad day/week, or month, I just hang in there and expect it to fade. Many new patients with PN get discouraged or trapped by this syndromes elusive character, or wish for the magic pill/potion to make it go away. And that just does not happen, for most people.

It can take a LONG time to develop PN. So one must understand that one must try many things, before targeting their own situation. It can take a while to get better. Or it may take a while to find the most effective pain treatment that works for you. This is more of a commitment than with blood pressure control, or antibiotics, or several other disorders. PN makes us have to cope and deal, and be more involved I think.

It is this aspect that keeps me going!
P.S. I expected to be off next week... duh? But I just got more shifts, and since this place was so good to me when I was disabled, and let me work, with adjustments, I haven't the nerve to decline! But that means I will be sleeping, and resting much more than usual. No more 13 hr shifts for me, standing anymore however. That is definitely off the table!