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Saturday, October 24, 2009

Chronic Pain Affects Daily Life

I have had many people over the years tell me that my pain can't possibly be as bad as I say it is. That it can't possibly affect my life intensely enough that I can not work. That it can't impact me emotionally and mentally deeply enough to cause depression. Depending on who is saying these things (and past experiences between that person and myself) and the situation in which they are being said, is how I choose to respond. With those who repeatedly says things like the statements above, I just ignore it and change the subject while hiding how deeply hurt I am and hiding the self-doubts and self-incrimination that occurs as well. If it is someone that is a new friend to me (or new acquaintence) then I will take the time to explain my conditions and take it from there.

So I thought it might be helpful to others if I start giving examples of exactly how my conditions have affected my daily life. That way maybe they will learn just how deeply chronic pain can affect a person, regardless of the condition that causes the pain. Not all disabilities are visible, but that does not mean they have less of an impact on the one living with the disabling conditions. I personally think an invisible condition has more of an impact on the one living with it because people just can't accept that something they can't see can affect another person's life so drastically. Instead they look at the person and see someone who looks "normal" and they can't reconcile what they see with what they are being told. Whereas if you see someone who is missing a limb (for example), or carrying an oxygen tank around with them, or in a wheelchair people more readily accept that the person is suffering because it is visible.

I wake up (whenever as I don't have a set time due to frequent insomnia) and depending on my pain level upon waking I have to sit and think of all the things that need to be done and decide what is most important. Then I have to figure out a way to do those things with minimal impact on my pain levels. It is a very rare day when I am physically capable of getting everything that is on my "to do" list done in a day. More often than not I am lucky to get half of it done.

Cleaning: I am not supposed to mop floors, move or lift anything over 10 pounds, I can not stand for more than 15 minutes so I have to work in stages by cleaning for a few minutes then sit down for a few minutes to guage my pain level. Many times I have to stop before the cleaning is done. Moving laundry is very difficult because carrying baskets of clothes is hard for me to do. Instead I have to push the basket accross the floor using my foot, or kick the clothes themselves into the laundry room. I can not kneel down and scrub a bathtub. I can not move the couch, chairs or tables to vacuum underneath them. Heavy cleaning (such as Spring cleaning) has to be done with other people to do the majority of the work.

Playing With My Children: I can't hold a bike and run behind them to teach them to ride the bike. I can not run around so baseball, basketball, or any other game that requires running is a no-no. The inability to stand for 15 minutes also affects many games such as board games, or sitting and reading, or watching a video. Children love to run around, play tag, hide and seek, and other physical games. They quickly get upset that we have to change the "running" part to "walking quickly", its not as much fun. Playing catch is done with both of us sitting down, so I don't have to bend over or chase the ball. Board games just require that I get up and move around for a few minutes. Anything that requires a lot of running around, someone else has to do it leaving me on the sidelines cheering them on.

Cooking Meals: For me my pain is simple, the more I move, the more I hurt. So by the time to cook dinner rolls around ( 4:30 to 5:00) I am often in more pain than I was when I woke up that day. More often than not someone else has to cook dinner. The only way I can guarantee that I can cook dinner is if I do little to nothing all day (no cleaning, or moving of laundry, or running of errands). This results in ordering take out food at least once a week on average.

Driving: I am banned from driving a standard shift (manual transmission) due to the fact that my left leg can just stop working without any warning. This means I can not move the leg or even wiggle the toes on my own. To move that leg I have to grab it and pull with my hands. Getting into and out of a car causes one to twist their back which is painful for me. I have to get out of a car every 30 minutes and walk around, so any car trip takes a lot longer than it would if I were normal. The vibration of the car often increases my pain because it causes my pelvis to vibrate.

Sexual Intimacy: For me, because of my injuries, sex is sometimes painful during the act itself, but it always results in increased pain levels after. After I make love and my body returns to "normal" my pain level goes up. There are many times where the day after I have had sex I am stuck in bed because my leg won't work or I am in a pain crisis. (pain crisis: uncontrolled extreme pain) This results in fear of sex. Constant pain is very tiring and it lowers the sex drive anyway so it is not a frequent thing for me to desire intercourse anyway. Even things like cuddling with my DH or spooning (laying with my back against his front) to sleep can be painful. When my pain is real bad just having that added little bit of pressure of his body touching mine hurts too much.

Running Errands: This is affected by my inability for stand too long, walk too long, and drive/ride in the car. When I do run errands I have to carefully plan how to get as much done with as little walking as possible, as well as doing the errands with as few instances of getting into or out of my car as possible. Pushing a cart that has a lot of items in it is difficult for me to do as the cart is heavy and thus it hurts my back to push it, though having the cart to lean on does help if my legs start to tremble.

Before the two fusion attempts failed, my pain level was fairly low and instances of intense pain were not as frequent. I could still do most things that a non-disabled person could do. After the two fusion attempts failed however, I ended up with greater restrictions on my abilities. So I went from being able to run errands, play with my children as much as I wanted, cleaning the house, cooking the meals, doing the grocery shopping etc. All the things other stay at home mom's would do, with only occasional interruptions or days where I had to stay off my feet. To where I am now, unable to do most of it unless I am willing to deal with the increased pain that will result from any of those activities.

When I need to do something, I have to weigh it against how much mental and emotional energy I have to deal with the increased pain (or outright pain crisis) that my activities will give me. Knowing that I can't do most of the things I want to do on a regular basis is very depressing.

This is already very long so I'll get to the emotional effects tomorrow.

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Thank you for taking the time to read and/or comment on my blog. For people who are chronically ill and/or in constant pain, it can be difficult to socialize as frequently as we would like to do so. Talking with others online is a way for us to socialize, chat with others, make new friends, reach out to others in similar circumstances and many more positive effects.

Knowing that someone has read my posts and commented on it, helps in many ways. The biggest two being that it helps ease the feeling of being "alone" and that no one could possibly understand. Secondly, it reminds us that others truly do care and that just feels wonderful!!

Thank you very much for taking the time to read and/or comment on my blog, it really does mean a great deal to me and is helpful too!