I am sure many people who read this blog have Facebook accounts, Twitter accounts, etc. You read posts from your friends, acquaintances, and whatever the other 99% of your Friends list represents, and wonder why so many seem to complain about such trivial things sometimes. Of course, deep down, you realize that if you were healthy, the fact that it is raining today, or there is too much snow on the ground, or that your PopTart didn't have as much frosting as you like would probably be the stuff you would be complaining about as well. We all complain based on our current situation in life. If one is healthy and able to get through their day without any pain, suddenly other things going on around them become a source of complaint, or irritation.
Even as a spouse of someone who is very sick, I can sometimes fall into this trap as well. As a big-time sports fan, I will complain about my teams from time to time. As a computer/tech guy, I will complain if my PC isn't performing well or my iPad is giving me trouble. I have tried through the past three years to temper these admittedly trivial things, but even I slip up from time to time - it is human nature.
But here is the thing: People who are chronically ill, such as my wife, tend to be the people who complain the LEAST about their condition. I am not a psychiatrist or anything like that, but there must be a reason for that, whether it be not wanting to show the world just how sick you really are, or not wanting your illness to be the focus of everyone's attention. Perhaps you don't want people who are having a good conversation on Facebook to suddenly stop what they are doing to read about your day of dread. Or perhaps the bottom line is that you feel Facebook or social media is not the proper forum for such talk; that personal relationships, support groups, etc. are better places to vent and get out your frustrations.
Even in private, my wife doesn't really "complain" about her condition in a traditional sense - not in the same way one may complain about a baseball manager making a wrong decision, at least. She vents, she cries - she does everything one with a terrible illness does. But a true complaint? Other than about her myriad of bad doctor experiences, not really. She is more focused on her pain, and her next steps, and all of the stuff people with bad illnesses think about not only daily, but often by the minute.
As someone who is sick, you need to put yourself first...and express exactly how it is your feeling when you are having a rough time. I know it is difficult for Colleen to actually tell me when she is having a relatively good day - the whole jinx thing - but those days are unfortunately not very frequent. But sometimes she also may hold back when she is having a bad day, which I think is a natural thing as well. She will use words at times like "burden", which I tell her she most definitely is not. As a loved one, you should be able to pick up on signals that your loved one is having a rougher day than even a typical rough day. It can often be seen in their facial expressions, their overall look, their energy level, etc. Sometimes, the clues can be subtle - but they are there. Watching a TV show you both enjoy, and your spouse not being "into it" as much as usual. It shouldn't always been a one way street - obviously, you can't always be a mind reader, and only your loved one knows how he/she really feels at any given moment. However, you should try to always ask how they are feeling - first thing in the morning, a few times during the day, before bedtime, etc. and let them vent and get it all out if they need to. Venting doesn't necessarily make a sick person feel physically better - but the MENTAL aspect of living with a bad disease can be just as damaging as the physical at times - they feed off of each other, and venting/crying/lashing out is something that helps with that aspect. It gives them a release.
When someone in your household is chronically ill, the very least one can do is lend them an ear - it isn't difficult to do, and the person who needs the ear is in much worse shape than you are. Let them vent - say some encouraging words, if you feel it to be necessary - but sometimes the vent itself is what releases the most pressure from a true mental standpoint.
For those who are sick, you are not a burden - you most certainly are not worthless, or a waste of anybody's time. You have just as much right to live a life as everyone else does. If someone makes you feel like a burden or a waste of their time, move on - find people who actually care. They do exist - to be exact, you may even be surprised just how many of them do exist. You were given a condition - in many cases, an evil condition that may or may not be curable. The best you can do is keep trying - persevering - trying to keep your head up high even when you are feeling your absolute worst. And never be afraid to tell anyone how you feel or what is going on inside of your body. It is very important - necessary -that you let that stuff be known. DON'T BE AFRAID TO BE SELFISH from time to time - in many cases, it is your life that is at stake - and no stakes are higher than that. People who love you and support you will understand when you have those times where you simply MUST put yourself first and foremost without worrying about what everyone else needs.
Colleen's journey has been a long one, obviously - and is obviously still continuing. I have said in the past that if any doctor, or non-doctor for that matter - were to ever give Colleen something that would ease her pain and make her feel better again, I would write up several blog entries on their greatness. Unfortunately, we have yet to find that magic person. She is currently in the care of a chiropractor, with three treatments thus far. It may be a bit too early for us to draw any conclusions from those visits, but when one has been so sick for so long, patience does tend to run a bit thin with anything that doesn't show much, if any, initial relief. I will update on that further as she goes through more treatments.
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