Welcome to my life. I live in pain 24/7, even on my "good" days I am in pain. Anyone who has been treated for any pain knows they rate it from 1 to 10. 1 is great 10 is screaming in a ball. My normal day is spent at 5 or 6 if I have a good day. My bad days I am at 7 to 8. I have learned to live with it. I don't like it but I have learned to tolerate it.
Just think of what it would be like to walk around all the time with a broken bone. That is my NORMAL pain level. That is what my freaking pain medicine brings me down to. But wait ! That's not all ! I also get a life sentence of increasing pain from my deteriorating spine. Just about 16 years ago I injured my back at my job. I had herniated a disc and had surgery to fix that. Since then t has been downhill. I have had a 2nd surgery to fuse my spine from L3 down. I have just recently found out that I now have at least 4 herniated discs at T12, L1, L2 and L3 I don't know if anything above T12 is injured, that is as far up as the last CT scan went. I have also started to have some wonderful pain shooting down my right arm to my wrist that makes it almost impossible to type until it goes away. Lucky for me they only last about a minute. During that minute I think my arm has been stabbed with a red hot knife. That is what it feels like. It's enough to bring tears to my eyes.
So basically I am screwed. I get to have this wonderful pain for the rest of my life. I'd jump for joy but I can't. So if you can jump on down below the orange snow doodle while I slowly crawl down a ladder to get to the next section.
Sorry it took me a minute to get down here . Hope you haven't been waiting long. For those of you who have not had the pleasure of living with any long term pain, let me explain some facts of my life. They are pretty much similar to others who do live in pain daily. I have "good" days and bad. My so called good days are when my pain just kind of stays at a nice level like 5. I can go through most of my normal life then. I can work at my job at an insurance company. (Okay I know a lot of you who have chronic pain hate insurance companies. Please don't hate me. They at least have worked with me to accommodate my situation. I have to make a living somehow. I sure can't afford to live on freaking SSI. ) My normal work day is broken up by me laying down during my breaks. I work at home which allows me to do that. This is the only way I can last a whole 8 hours or more. Sitting for 8 hours a day sucks when you have a spine injury in your lower back and have a flat butt.
By the end of my day I lay down to try and get my back to unlock. I am usually exhausted by then. Living with chronic pain drains the energy out of you pretty quick. My wonderful wife usually has to wake me up for dinner since I fall asleep most days. Now before you start in with the suggestions, listen up. I really am exhausted. I don't sleep well most nights. I wake up tired and then expend a lot of energy just getting through the day. I don't have energy to exercise even if I was able to physically. Most things are forbidden including walking outside as I am a bit unsteady and can fall. I can swim and would love to be able to go to the YMCA a few times a week but can't afford it.
So that is my daily routine. Kind of boring. I get up most days around 2 am if not before. My idea of sleeping in is sleeping until 4 am which is very rare. I bet that makes you appreciate your life a little bit more. I sure didn't plan for my life to end up this way . I don't think any of us who ended up with chronic pain from any source planned this out. Whether it is from an accident, illness or whatever, we have to live with pain 24/7. Our lives have changed. I know I have missed a lot of things I didn't want to. This last summer I was unable to go to our family's summer get together. I was having a horrible day. That was the last time most of the family saw Uncle Bill. He died just about a month later. I really wish we could have gone. I bet there is many more stories similar to that for everyone who lives with pain. I can't plan anything. I may be having a good day or I may be having a bad day.
There are tons of things people who aren't living with pain do that they don't realize piss us off. I get a ton of suggestions from people that I should exercise more. Hell yes I am over weight. First I am on medication that has weight gain as a side effect. I can't stop that or I get to lose the feeling that has finally returned to my legs and go back to numbness in both legs from the knee down. I would love to be able to walk around the block with my two loving fur babies Kyra and Buddy. Problem is I have a bad habit of falling down. My medication makes me a bit dizzy. If I had the energy to go to a gym I couldn't use most of the equipment. I have been told I can use an exercise bike but only the recumbent ones. I can also use the treadmill. That is about it. No stair master. No weight bench, no eliptical machines allowed. So joining a gym is basically a waste of money. Now there is swimming. I can do this in the summer. The local pools are open and I do take advantage of it. I don't actually swim. I do exercises I learned in PT after surgery. I do this for a couple of hours then go home and take a nap. I can't afford to join the Y or a gym that has a pool. The rates are out of my reach.
Besides recommending exercise, I get a lot of suggestion to relieve my pain. I have heard everything from the idea of sleeping on a board to crystals and copper. I have seen a million infomercials for new products designed to relieve back pain. If I was rich I would probably have one of each just on the off chance it might work. Believe me when I say I have tried everything. I am deeply involved in my care. I know what research is being done and I know that there really is nothing in the pipeline at the moment that will help. SO please keep your ideas to yourself. It doesn't help. Now if you happen to be living with chronic pain and have an idea I am wiling to listen. You know what I have been through even if your pain is different.
If I hear one more person say "it is just an issue of mind over matter" I will hurl on you. No freaking joke. You say it you're going to get sprayed. I am one of the most stubborn people I know. If I wasn't I wouldn't be here. I would have checked out ages ago. I have chosen to go on living with this damn pain. I force myself t get up every day and go to work at my job. So it is not a matter of lack of will. If my will was that strong you wouldn't be standing there after saying that. I would will you out of my existence. Besides my will is strong enough to keep me from strangling you when you make stupid suggestions. Now that takes will power.
Your life changes when you live in pain. I can't really make plans. I don't know if I will be physically able to do them on that day. I can't fly in planes. Those narrow seats with no leg room suck. I believe they were invented by the people who designed torture devices during the Inquisition. I can't sit in the back seat of most cars. Heck I can't stand to sit for very long even in the front seat, though I have to admit that car seats are better designed than desk chairs. Those have also been designed by people who have minored in design of torture devices. The padding on them is nonexistent. That so called "Lumbar support" is just something to add an extra $50.00 bucks to the price. Heck I have designed a desk chair that has actual padding on the seat, not just a couple of inches of foam rubber over a metal plate and allows the back to move to provide true lumbar support for all and not just an average sized person. Too bad I can't get the damn thing made.
Speaking of changes, you learn that you can no longer do everything for yourself. I have gotten very good at approaching complete strangers for help getting stuff from the bottom shelf of stores. I am really lucky that I can still dress myself as well as take a shower though I have to be careful that I don't fall. I sometimes do have to have help putting on my socks. Good thing I don't need to wear them every day. I can go to work in shorts and a t shirt since I work from home. I can still drive though I am not one for long trips, anything over 45 minutes is not good. Overall it is kind of humiliating to learn you can't do basic stuff for yourself anymore. I can't cook anymore. I haven't lost my skills in the kitchen but it is now impossible to stand at the counter and do the prep work for much longer than 5 minutes before my back starts to scream. I used to love to cook a huge pot of chili or chicken and dumplings, now I dread it. All that prep work makes me hurt so bad I will not want to eat what I just cooked. Still I think I am lucky because I can still grill. BIG MAN GRUNT !!! lol.
I am still learning to live within my new limitations. I know my condition will deteriorate, What I don't know is how much time I have left before it gets real bad. I want to live my life but know I can't do what I want. No more doing bananas into the pool. No more diving into the pool at all, no more jumping in either. Now I do the slow climb down the ladder to get in. I can't do my gardening anymore. I used to have the nicest front display in my whole subdivision. Now it is over run and growing wild. No more golf or just going to the driving range. Though the metal rods would help me keep my back straight the twisting of the torso would kill me.
Maybe I will come to grips with my back in the future. Maybe I won't. I do know I will keep trying to do as much as I can for as long as I can. I will grit my teeth and deal with the pain as best I can every day. I will keep myself from strangling someone who comes up to me with some harebrained scheme that will cure my back pain. That is all I can do for now.