A Journey Through Chronic Pain

Today was one of those days when I wish I hadn’t gotten out of bed.  Having muddled through the past couple of weeks with varying degrees of GI distress, I have been feeling pretty frisky the past few days.  Things have settled down to the point where my diet was beginning to approach something more normal. That is until today.  For lunch we stopped at a mom-and-pop Greek place and I ate a pita stuffed with Falafel,  some yogurt, a bit of tomato and lettuce.  By the time I got home I felt as though I had been kicked in the gut by a mule!!! I was nauseated, sweaty, and very uncomfortable.  After several hours of feeling sick the sensation began to subside a bit, but not totally. Was it what I ate? Was it a poor choice based on what I have experienced recently? I am not sure.  But sometimes, regardless of how I feel, the urge to eat something other than gruel is overwhelming. I have subsisted on Boost, carbs, yogurt, and some soft cereals for nearly 3 weeks, which normally puts things to rest rather nicely.  I have avoided the antispasmodics for the most part because they have such a huge drying effect on the oral mucosa! I hate that feeling and would rather be a bit crampy rather than have terminal cottonmouth!!

Here again I look back to the days when I had this sort of cast-iron gut. My favorite food on earth was the Jalapeno Poppers at a place in KC called “Thirsty’s Cantina. OMG they were delicious, and I have never found any better, bar none! They were stuffed with a blend of cheeses, shredded chicken and spices. They were then dredged in flour and deep fried. One night I went with my brother who is the king of spicy foods. We each ordered poppers, 6 to an order.  Well, I ate mine, and half of his! Oh did I pay for it the next day!! Can you say “flame-on”?  But so delicious!! Today eating one of those would probably kill me!!  But I guess as they say, it could always be worse! I could be sucking down TPN as an alternative to food! Not a fun place to be.  And dragging around a G-Tube and collection bag was not much fun either!  I don’t know if I could go through all of that again. After two rounds of relatively long term G-Tube placement, I don’t really want to go there again.  But I guess we do what we have to do, right?  No matter how uncomfortable, no matter how protracted, sometimes it is the only choice.  Have never been one to dodge a good challenge. But some days, I would rather be a bit less challenged, if you know what I mean.

One thing I haven’t mentioned here so far is the whole problem with travel. Don’t get me wrong, I love to travel. Love seeing new places, experiencing new cultures, etc. But the issue comes in when I think about the complexities and considerations that face me when traveling. Having chronic pain is one issue. Spending long amounts of time in a car or on an airplane can exacerbate orthopedic issues. Having a fused knee adds another layer to the whole problem. Finding seating that is comfortable in restaurants, on buses, trains, planes, cars. Most of which don’t afford enough leg room based on my height. But also, most seating is wide enough that it hits me mid-thigh. This compromises circulation and in some cases, puts undue pressure on nerve roots. Try this some time. Sit in a booth in a restaurant, extend one leg or the other and lock it at the knee. Now sit there for the entire time and don’t bend that knee. See how your leg and foot feels at the end of an hour or two.

I have always been very stubborn about not giving up what I like to do and concede to physical issues. Now I am prudent about what I choose sometimes, but think that anyone who has physical issues should not give up what you love to do. Find a way. Life is too short to put off those things because you hurt or it is not convenient. But the truth is, as I get older, some things do get more difficult. Even though my energy level is basically very good, I sometimes dread going and doing certain things. And maybe it is more “anticipatory” than actual, but I don’t think so.

I am a big guy and have been shoe horned into various planes, trains and buses over the years, arriving at destinations worse for the wear!! I have often experienced incredible amounts of pain, numb extremities, and exhaustion, based on how far it is necessary to walk through some airports! Walking with a stiff leg requres use of different muscles and expends more energy than normal walking. Walking on uneven ground or on un-mowed grass is exhausting.

One of my favorite activities is driving.. not that it is comfortable most of the time, but it is not stressful and in fact can be quite relaxing. My primary care doc some years ago made the recommendation that I stop and stretch AT LEAST every 2 hours. And I do try and adhere to that recommendation, but not always. Sometimes it is easier to do than others, depending upon time constraints. But, it is advice well taken by anyone!

As I think about making choices for activities that are fun yet relatively safe and without much risk, I find that as I get older I tend to take on more rigorous things physically. I feel like if I don’t do some of the things I love to do now, when will I? The day will come when I will have to choose even more prudently than I do now.

Pain has a funny way of helping us choose our battles at times. Not that I have ever much given in to it. But at times it is totally necessary. I find the times that it is most necessary to enter into this agreement with pain is when it is accompanied by other symptoms. For instance, when I am having neuro symptoms in my legs along with increasing back pain, I know that I have to tread lightly for a bit. It usually passes by mid-morning, but not always. On those days, it is crucial that I spend some time just sitting. Standing is always awful unless I can bend somewhat at the waist. Sitting relieves some of the pressure on the nerve roots, at least for me it does. Other times, sitting is the worst thing I can do. Moderation is usually the key. Not too long standing, not too long sitting, and of course, not too long lying in bed.

Right now, I am having a fair amount of nerve pain and numbness. It is disconcerting because last summer, I was about to have surgery to decompress some of the effected nerve roots. Then had some improvement, and now have backslid a bit But I am determined not to give in to the possibility of an easy fix. Back surgery is iffy at best. Less than 50% of cases have little or no improvement, and in some cases, it is actually worse!

So travel is problematic at best. In the case of air travel, less than 3 hours is preferable. Over 3 hours, depending upon the seating, the level of discomfort can be considerable. And I usually choose a window seat for comfort, which further complicates moving about. It is difficult to stand every hour or so when you are on the inside. I truly hate to inconvenience my fellow travelers unless it is absolutely necessary.

For some reason, I am having this awful time putting this to rest.  I keep coming back, maybe because it is hard for me to admit that something in my life is getting harder for me as I get older.  But those of you who suffer with chronic pain know exactly what I am talking about. And for the most part, there are few things in life that I intend to give up because of any physical infirmity.  But the day-to-day grind sometimes gets the best of me.  Too little sleep, too much hurting, not enough time to recover after particularly stressful events. Like traveling for 10 days and feeling for the next week like a bus has rolled over you?  Ever feel like that?

So I am going to publish this and see what kind of comments come.  Am interested to see how many others share a touch of any of this.