working with the pain

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Regular Member

Date Joined Dec 2009
Total Posts : 184
   Posted 12/31/2009 10:53 AM (GMT -6)   
can I ask, are  there those who are able to  go to work and  have "productive" lives  besides the pain? I finally had to face it and  go on disability 4 years ago now. Now I just ramble around the house and feel like a useless blob as I watch the rest of the world go by. Suddenly all the people I worked with and knew no longer  know my name and it seems only the cats and the dog have any use for me.. How do the rest of you manage to find a reason to keep  trying?
sick and tired of being sick and tired

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3702
   Posted 12/31/2009 12:00 PM (GMT -6)   
Well Cat

I know where you are coming from, I have been on disability quite a bit longer than that! I use to try an take art classes at the local junior college, ( art classes was about the only classes I could handle due to the fact you can move around in those classes and not have to remain in a stationary position like sitting at a desk in a chair for any lengeth of time!) Anyway those classes were great! it got me out of the house, and around other people and for the most part the instructors were very accommodating to my needs. So if you can do that, then you might consider doing something like that. I ended up having to quit going to those classes and give the drawing an sculpture up because I could nolonger hold out my arms and use them to do the drawings and sculptures. Quite awhile ago this was cover, allot of us suffering with Chronic Pain tend to become isolated, ( that has been a really biggy with me, because of my pending divorce) it just tends to happen, and often you really don't realize it untill after the fact!

So no Cat you are not alone in how you feel! Good Luck to You! and Happy New Year!

White Beard

Veteran Member

Date Joined Jun 2007
Total Posts : 702
   Posted 12/31/2009 12:46 PM (GMT -6)   
I have been on disability for about a year. Its weird . I am VERY grateful I have it or else
I would be in a bad way. I used to be a vet tech. Its strange not to be the best at something. I was a very good technician at the top of my game. no I feel like a blob too. I tried taking up a hobby - beading. that has been fun, so thats my suggestion, get a hobby. I was also able to selll a lot of my work and made a few bucks.

sometimes its hard with arthritis and pain in my hands, but I try.

best of luck.
Chronic Lyme Disease
Chronic fatigue syndrome
Polycystic Ovarian Syndrome
Sleep Apnea
Adrenal Fatigue

Stella Marie
Veteran Member

Date Joined May 2005
Total Posts : 601
   Posted 12/31/2009 2:55 PM (GMT -6)   
I have a hunch you are going to hear the same story over and over.  Slowly friends drift away and stop inviting you because they don't want to hurt your feelings if you not up to a visit or an outing.  Co-workers stop calling, as you no longer have work related subjects to take about.  Volunteering is difficult because you can't always commit to times you might not feel well and then you are earmarked as undependable.  Sitting for a hour or more can be hard, so it is difficult to go to library and local lectures.  You find yourself just trying to make it through the day.  I enjoying quilting, so I to recommend a hobby that you can do at your own pace and get some satisfaction in still being able to do something rewarding. 
Homebased volunteer work can be rewarding to some - but when you are alone all the time it takes the fun out of certain activities.  Many of us are too young for any of the community senior programs - so that leaves a big void in our lives.  If it was not for my husband and pets, I would go crazy.  I have lost the majority of friends and feel very alone at times.  You might want to checkout volunter activities in your area - you can google volunteer matches and select your location and critria - there may be something in your area that is of interest.
One of the most understanding places to stay in contact with people is church.  You will find that they are much more tolerant about non-attendance when you don't feel good.  When you are feeling good, there are usually several side activities you can participate in - social needs - potlucks - etc. 
Just a few ideas.  But on the whole I feel like I have lost a good deal of my life. 

Stella Marie

Moderator for Chronic Pain and Epilepsy

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, myoclonus, central apnea, collagenous colitis, joint and body pain, swallowing and respitory  involvement,  Implants: intrathecal pump & neurostimulator.  Extra features: O2 & wheelchair.



Veteran Member

Date Joined Mar 2008
Total Posts : 3089
   Posted 12/31/2009 3:50 PM (GMT -6)   

I'm a full time undergraduate student & a part-time vet tech & have been dealing with CP for the past 3 out of my 4 years in college. Honestly, I don't know how I do it. I think I function on the lowest level possible to get by. My grades have dropped (although I really can't complain, because they are still very good). I've had to drop out of classes & probably should have taken time off, but I think I get through because I am very stubborn. I desperately want to finish my undergrad & make it to vet school. It's that dream which has helped me keep going. It's so hard, because you try to pretend that everything is okay when you are around other people & that in itself is exhausting. Add to that the fact that I barely sleep thanks to the pain & my quality of sleep is awful, plus the depression. It's a wonder I function at all. I do owe some credit to my visual aid devices, as they help me to read more easily by enlarging font, and/or reading to me.

I never had a large group of friends (I tend to be somewhat introverted & more academic than most). But like Stella mentioned, as a result of my CP I lost all of my "close friends" & now basically live like an invalid. I go to class, often take a nap, work in the lab, and then come back to my room and somehow manage to get the bare minimum of work done before I collapse from pain & exhaustion. I have no real social life to speak of. I rarely venture out of my room because I'm in so much pain & so exhausted from the day that the last thing I want to do is see people & pretend to be okay when I'm not. No one bothers to visit me or call me anymore. It can be very lonely. On the weekends I drive home, where I work as the senior vet tech in a busy country practice. Work is my oasis. I love my job & it helps rejuvenate me & reinforce why I continue to fight through the pain.

So, what keeps me going day to day?
my animals (3 dogs & 2 cats), although when in school, I only get to see them two nights a week, which is not nearly enough!
my family (despite their shortcomings)
my dream of becoming a vet
my HW family

You take one day at a time, one hour at a time, and somehow you make it through.


Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 12/31/2009 5:29 PM (GMT -6)   
Hello Houla! Welcome to our little part of the world here. You will soon find out how wonderful it is here. To answer your question....I work two jobs at the time....and I can tell you that Chronic Pain has almost destroyed my life and my jobs as well. I own my own business, and work for another company. Right now, I'm trying to close on my business,as I just could not run it effectively anymore. My business is thriving here in the middle of the recession, and I thought it was best to sell, while it was still worth something. Chronic Pain, can be very hard on a person, especially for one that is still working on a daily basis. People are people, and you will find out quickly who your true friends are through this process. I can tell you that in all honesty, that you will find that most of your true friends will come from right here on this forum. I do have many good friends, and really more than I can keep up with, but the members here are more than a "High, how are you doing type of friends" Their friendship goes much deeper than that here. We consider ourselves family here. Now, we don't always see eye to eye on some of the topics, and it is pretty much accepted that way, but when it comes down to when you need a friend to talk to, or need any help, these cats come a running! These are some of the strongest people I know. We can't get our family's to understand that we do not feel good, and will seldom check to see how you are doing, but the members here are constantly taking roll call to see if everyone is here with us. Stick around, watch, listen, and learn with us, and you will see what I'm talking about.

Your New Friend!


Post Edited (Screaming Eagle) : 12/31/2009 5:41:26 PM (GMT-7)

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3702
   Posted 12/31/2009 7:10 PM (GMT -6)   

You are so young to be suffering with the pain you have. But yet you really are an inspiration for us all! I am sure everyone here at this forum will agree with me that you have gained through your kind, caring, and compassionate post the admiration and respect of all of us! I do hope that you will be successful in your endeavors

Cat You know-Stella Marie and merrygir and skeye and Michael have all made some excellent suggeestions, it is so easy to end up isolating yourself, and if you find that happening to yourself, please do what ever you need to to do to get out of that type of situation! Because it really can come back an bite you! I have found that out the hard way! Being older but not quite old enoough to be ftting in with the senior citizen crowd, I have found myself in a situation that is not only lonely but also not healthy, without friends, and with no family close by, and if you have any unfortunate un-for-seen events happen that cause you to lose your support system, well it is not a good situation to be in! Suffering with chronic pain, you sure don't feel like going out and making new friends and trying to reestablish a new support system! I have found myself having to do that! It is not easy nor fun! Unfortunately none of use can live as an island, and we all are somewhat reliant on others for our health and well being, so please try to always keep that in the back of your mind.
Good Luck to You!

White Beard

Regular Member

Date Joined Dec 2009
Total Posts : 184
   Posted 12/31/2009 8:24 PM (GMT -6)   
i want to thank you all for your replies and it all makes such good honest sense. I hate to sound like a " yeah but" , ..But.. my problem is the getting out problem. My mind has so many great plans to do and go but  it just hurts. It hurts to see and it hurts to think. This all started when i was finishing my degree which I started 30 some odd years ago but swore I would finish. Unfortunately all the rules in Illinois changed and I had to take a slew of math classes, statistics in particular. Trying to concentrate was just murder. The neurologist said it only made sense that the harder I tried to use those damaged brain cells, the more it would hurt but the professors didn't seem to understand. I should be nearing the end of my phd now if i had been able to continue, I think thats whats the hardest..The mind is willing but the brain isn't, I can read for about 20 minutes before I have to shut down, it hurts to wear the glasses on my face, I have to stay back far from the computer because the lite from the screen hurts my eyes.  Gosh I sound like such a whiner. I keep reading all of your signatures after your posts and what you all are dealing with and think "what the hell are you complaining about"..forgive me for getting my whining out, i promise to get it out soon and then  turn into a listener. Its just so good to finally find folks who understand.
My brother got sick around the same time as I . He was/is a world traveler but also a bit of a drinker and picked up hep-c, had to have a liver transplant.  We were emailing back and forth, I thought comiserating with each other, keeeping up as we each shared doctor visits and meds, treatments etc..or so I thought..until he got his transplant, felt better and then wrote and told me that he was tired of me always trying to play "who is sicker" and that i was just a drug addict and should get into some kind of rehab while he had been "really" sick...and I haven't heard from him in 3 years...rather struck me to me core. He couldn't see anything wrong so obviously I must just be in it for the meds.
anyway..thank you all for listening..and for being there.
i wish you all happy and healthier new year
sick and tired of being sick and tired

Veteran Member

Date Joined Oct 2008
Total Posts : 2024
   Posted 12/31/2009 8:35 PM (GMT -6)   
Myself I have been off work for more than a year. I worked with my pain as long as i could then my body started to shut down. I haven't been able to do much as my pain is too great. I am mostly in bed with ice on my head as the pain is horrible. Each day I keep saying oh i will do something in my craft room but i am never able to. It's been like that for a long time. All I say is one day at a time. Thank you God for helping me get thru today, tomorrow is another day!!!!


Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 1/1/2010 4:09 AM (GMT -6)   

Hi... I've see a few of your posts, but haven't had a chance to welcome you here to the board. I'm sorry that you are suffering w/ pain issues, but I'm glad you are here for support.

As you can tell from all the responses you got... most of us can completely relate to what you are saying...unfortunately. First of all, though...please don't ever feel like you are a whiner! Living w/ all of this stuff is so frustrating...and, as you said, it really helps to talk to people who understand. I appreciate all the honesty in your posts, and...not for a second...did I think you were whining or complaining. Really.

Having health/pain issues has totally changed my life, as w/ most of the people here. I can so relate to what you wrote..."My mind has so many great plans to do and go...". I still have so many things that I would love to do in life...but, at the moment, can't. It's taken me a long time to accept the "new" me and the limitations that come with this new person. For me, it's meant putting away some dreams and things that I loved to do. As times goes by, things are a bit easier...I've been dealing w/ this stuff for six years now. But, I still have moments of extreme frustration...and sadness.

The things that get me out of bed each morning are my kids. Pure and simple. I would spend MANY more days in bed w/out them...I'm sure of this! But having six kids makes that impossible...and, in most ways, that's probably good for me. :) I, too, feel the isolation that comes along w/ long-term health issues. It's changed just about every relationship in my life. A chronic illness will do that, unfortunately!

Re: the situation w/ your brother... I'm really sorry about that, Cat. Unfortunately, I think there are always going to be people who just don't understand the issues we face. I know that's true in my own life, and many others here on the board.

Well, Cat... I wish there was something more I could say... but, mostly, I'm glad you are here.... keep posting and let us know more about you....

Happy New Year... --Tina
Pain Issues: Cervical/Thoracic back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; I also have Dysautonomia/POTS; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; etc etc

Meds: MS Contin; Dilaudid; Actiq; Soma ; Neurontin; Atenolol; Midodrine; Phenergan/Zofran/Reglan; Effexor; Synthroid; Prednisone; and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 1/1/2010 4:11 AM (GMT -6)   
Hi Skeye...

I just wanted to "second" what White Beard said... you really are an inspiration to us. I can see your fighting spirit just through the post you wrote.... and it inspires me to keep fighting just as hard in my own life :) So, thank you for that! You are very special to all of us here!

Pain Issues: Cervical/Thoracic back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; I also have Dysautonomia/POTS; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; etc etc

Meds: MS Contin; Dilaudid; Actiq; Soma ; Neurontin; Atenolol; Midodrine; Phenergan/Zofran/Reglan; Effexor; Synthroid; Prednisone; and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation

Veteran Member

Date Joined Jul 2008
Total Posts : 2317
   Posted 1/1/2010 2:01 PM (GMT -6)   
Have you ever tried Provigil or something like that? It is a prescription medication that promotes alertness. It is not as good as just being healthy & attentive, but it does work quite well. I was on it when I started my master's program at UIC. I also explained the accommodations I would need to my instructor -- being allowed to record lectures, requesting books & journals on tape, etc. I don't mean to say it was easy. It was incredibly hard & it wasn't my first choice for a program. I had prepared to go to NU & study neuro & psycholinguistics, but instead had to change to UIC's former program in bilingual literacy (which was dropped mid-way through my studies, so sad).

A couple of years ago, I signed up for an advanced calculus class through the community colleges of chicago's on-line learning program. It was a self-paced study program so I was able to do the work at my own pace. They also have some classes that are hybrid classes where students go to a handful of live classes & do the rest on-line. It's not quite the same depth of connection as live classes, but students do post to each other a lot during class, exchange emails & sometimes even arrange live study groups. Maybe something to consider.

There also are some glasses that are ultra lightweight. I finally saved up enough money to get me a pair of those 2 years ago. It was night & day. The frames are made of a very lightweight plastic & the lenses are those featherweight ones. My dad even was able to get featherweight bifocals, so even if you have really horrible vision, it might be a possibility. There are a handful of places where you can get free frames (used). Maybe your eye doctor can direct you to them.

As for me, I am working at a part-time temp job right now. When I'm feeling better, my client is happy to have me come in extra days. When I'm not feeling so well, I just have to be sure to make it in on the 2 days we agreed on. There are some places that will take workers for as little at 6 hours per week. Not sure, but maybe that would be an option for you once you get your meds a bit more under control.

In any case, everyone is different & no one is competing against you for who has it the worst. Ideally, everyone would be healthy, happy & strong, but often that isn't the case. The trick is to try to find something -- even if it's virtual work or at-home charity work -- that you can do well & feel good about. It's really hard to find that at first, but I think everyone would agree that finding something to keep our minds off the pain for even a few minutes at a time makes a huge difference. Good luck finding what works for you!


Veteran Member

Date Joined Nov 2008
Total Posts : 1037
   Posted 1/1/2010 7:20 PM (GMT -6)   
Hey Cat..... I haven't worked in over 8 years....I really have nothing to do. at least nothing I want ot do.  I can't clean the house much, I can't do any walking without hurting, so I have nothing left... I read alot of books, I watch a lot of tv...and I color with colored pencils.... I get those books of Mandalas to color,, I have about 60 that I've been through and need a new one as we speak....
We, as CPer's need to find something to occupy our time.  Something productive... I like to make jewelery with beads....I have made many but have to be in the Mood to do it... Sometimes I find it hard to just sit still.... without being in pain.  I also have a hard time sleeping.  My bed is fairly new, I bought it with my casino winnings a few years cost me about $900 but the springs hurt my back and hips....
We all have our demons....we just have to block them out....
We are here for you....

I have been a spectator for so long..Now it's time to participate.......
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   


Forum Moderator

Date Joined Feb 2003
Total Posts : 16753
   Posted 1/1/2010 7:53 PM (GMT -6)   

Hi Cat,

Yes many of us has asked this very same question. I became disabled in 2004 and it was because of the crohns disease, not CP. I have has the CP for over 20 yrs and did just about every kind of treatment coming down the pike short of sugery just to keep working. Shortly after becoming disabled my health went down the tubes and it was like a domino effect.

I am slowly beginning to get some of my life back thanks to a very good PM dr. I do mean slowly too, I still just take it a day at a time. What I have been playing around with is, if I get one thing settled down then one of the others crops up so I feel very much like that rat lost in the maze trying to get out. It gets real difficult at times dealing with it too.

Depression has also played a huge role in my life. Once I got on meds and actualy got some help, I was able to put things into a  better perspective.

I gave up a long time ago on anyone understanding CP whether its friends or family. Since its an invisible problem most just don't get it. I don't have the energy any more to try and enlighten a few of them. It takes a CPer to know a CPer as far as I am concerned. Thats the beauty of this place is being able to come here and pretty much say what I want and get it out there. And just to let you know, whining is allowed, lol. Usually someone likes to bring cheese and another brings crackers and we can just have a party.

Take care and keep posting, it does help to get a lot of it off your chest sometimes.




crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

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