Thursday, May 30, 2013
For the Memorial Holiday we went on a camping trip and while preparing for our holiday getaway there were many concerns to account for in an attempt to allow for the most enjoyable trip.
Anytime I want to participate in physical activities, particularly away from home, I must consider a number of factors such as food, restroom access, breaks and the amount of physical activity. Each of these contribute to my health, severity of bothersome symptoms, and level of activity.
In Evils of Food, I discussed all the concerns surrounding food and how food affects my daily life. For our camping trip, I tried to stay away from just the usual camp foods of hamburgers and hotdogs as these foods are very greasy and almost always cause a SBS flare up. One evening we had grilled chicken and vegetables with a rice mixture. But even for this healthy meal, I still had to consider which vegetables to have as some vegetables such as fried potatoes are typically upsetting. I relented for one of our lunches to having Mexican food. I was able to combat the SBS flare up into a mild flare up by taking an extra Lomotil in the late afternoon, being careful of the timing in order to prevent an adverse side effect of extreme constipation if taken too late in the evening thereby altering the usual satisfactory effectiveness of my daily Lomotil on the following day. If I took an extra Lomotil too late, it would still be in effect the next morning thereby altering my whole medication schedule for the next day resulting in too much binding. Later that evening we made Smores, I had to limit myself to 1 Smore as another one would have pushed my intestine over edge especially after a Mexican lunch.
Restroom access is an absolute concern for any outing away from home. In Access Denied, the ongoing concens and fears of being denied restroom access and restroom restrictions were discussed. When we reserved our camp site, I made sure to reserve a site that was close to restrooms in order to reduce wait time when a restroom was necessary. Even with having a restroom within 100 - 200 feet, at night I had to drive to the restroom in order to arrive in time and to reduce the amount of physical activity that inevitably increases SBS. At times I even considered sleeping upright in the car parked at the restrooms during the nights but after 3 trips a night, I was able to endure until morning.
I also have to take care to watch my activity as movement increases my SBS and is futher complicated by restroom accessibility. There were many nature trails and hiking that we could embark upon and that I would have loved to have completed, but once again I had to mind the amount of activity and the proximity to a restroom in order to prevent SBS and accompanying misery. Even to go for a swim takes careful consideration of the timing of eating, walking to the swim area and the length of time between preparing for swimming and actually going swimming. The planning and participation of activities also depends on the severity of bothersome symptoms, if only slightly bothersome I'm able to enjoy activities for a longer time period and a fuller range of activities. However, if symptoms are severe then I'm rather limited to sitting still with little food or fluid intake or will be faced with increased SBS symptoms.
None of these concerns stopped me from enjoying or participating in activities on our camping trip, I just simply had to be aware of the possible side effects so that I could plan accordingly which allowed me to make decisions and alter activities to reduce the risk of such side effects for a more enjoyable trip.
I can't think of any activities that I haven't been able to partcipate in in some way because of my health.
Knowing our bodies and how they react to varying situations is vital for our survival. By being able to predict based on previous experiences, I'm able to make decisions to allow for optimal activity participation and comfortability.
Thursday, May 2, 2013
I'd group people into the following categories to describe their frame of reference for understanding chronic illness and empathy.
I don't really have any patience for the non-empathetic non-sick and dealing with this group is highly vexing for me. I don't mind and even typically enjoy educating others, answering questions and helping to better understand and support others in their lives. But when a person doesn't have any interest in such things and only feigns interest for their own hidden benefit, I don't really care to answers questions. I don't want to be a part of their games or help them in their games. I also don't really care for such people to pry into my life and know details of my health or my day to day health and symptoms. So it's no surprise that I have very little patience and a short fuse with such people.
- The Sick. These are people with chronic illness, not with bowel disease though. This group can relate to us with bowel disease because they too understand chronic illness. This group is usually very empathetic toward others with health issues and have a medical understanding.
- The Bowel Sick. This is our group of people, all with some bowel disease. We relate to each other better than any others with health issues. Again, we tend to emphasize with each other a lot.
- The Non-Sick with Empathy. This group doesn't really have any health issues but sincerely want to understand what we go through. They may or may not have any medical understanding, but are willing to learn. Someone with empathy doesn't require medical knowledge in order to empathize and often have tendencies to have a basic understanding simply due to their inclination to empathize and imagine what life is like for someone with illness. This understanding also tends to be present for not only physical but also emotional symptoms and effects.
- The Non-Sick with No Empathy. This group doesn't really have any health issues or experience and don't really care to sincerely understand or learn about our conditions or that of others. They may inquire but it is usually due to etiquette or to satisfy curiosity.
I don't have the energy nor the patience to teach an adult how to empathize or how chronic illness affects one mentally, emotionally as well as physically, especially when it's not a sincere interest. I'd rather maintain my privacy and steer clear of my health as topic of discussion. I've encountered several people like this and I don't trust individuals with such behaviors. There are people who will use knowledge about someone's health and chronic illness to manipulate the person, others involved with the person or a situation with such personal information. We must especially be weary of this with employers. Recently I had an individual ask about my PTSD and they didn't understand how I could have PTSD now when my physical health has been stable. This person was also trying to use my health as a tool for religious debate and manipulation. So I'm confident that this person belongs to the last group. It doesn't take a psychologist to understand basic tenants of PTSD as long as they know a summary of what PTSD is.
Simply, PTSD is the mental effect of a traumatic event causing an individual to have depression and negative stressful symptoms that are triggered by the trauma experience being relived. Such symptoms include night terrors, severe anxiety, fear, flash backs, emotional numbing and avoidance. Most people have a basic understanding of PTSD due to the prevalence among war veterans. Therefore, I find it hard to believe that an educated, aware adult doesn't have any reference to PTSD to draw from, especially if that person has a capacity for empathy.
My PTSD symptoms have subsided in frequency and severity over the years due to counseling and medication treatment. I don't believe that an individual ever truly stops having PTSD, just that symptoms can improve as well as better coping mechanisms may be learned and utilized. Although my health is fairly stable now and I don't have as many regular invasive tests and procedures, when I am placed back in that medical environment and those situations I begin to experience those same PTSD symptoms that I've had before although now I'm better equipped to cope with the situation so that the symptoms aren't as severe or debilitating as they were previously. But I'm never rid of it all and sometimes without provocation I begin to have symptoms again. I have to be cautious of what I watch, read, listen to and even what I think because I am easily transported back into time to any one of those traumatic medical experiences and am reminded of it all again. If I'm not cautious, I'll quickly be reliving the traumas. I'm so in tune with the pain and those memories are etched into my mind so deeply that seeing or hearing others' pain is physically felt on my body.
I also believe that one is never truly free of depression completely. A person may stop having depression but I've found that after having depression, one is much more susceptible to have depression again at a later time when under duress. I've found this also occurs with suicidal tendencies. Once a person has become suicidal, even after no longer being suicidal one is much more likely to experience suicidal ideations when under duress. It's as if once that those doors are opened, they're easy to open again even if not intentionally.
I acknowledge that these can be difficult things and notions for others to understand. Chronic illness runs in my family but it's still hard for my parents to understand how deeply I've been affected by my health even though my parents are better able to relate than most. My husband has a hard time understanding my morbidity, how warped my mind has become due to such traumas. Yet they empathize and support, they listen and they show that I am understood and accepted. A close friend with similar health issues probably knows me best as he better understands the mental effects during his years of medical traumas than anyone else I know and is as warped as much if not more than myself. Most people have capacity for empathy and if they don't you are better off befriending someone who does. Without empathy, there isn't room for a true friendship - only a one sided benefit.