working with the pain

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

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. 

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!

Michael

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

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

cat

Cat...

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

Cat,
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!

blessings,
frances

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.