We will be back in Baltimore on Monday, December 1st. I will let you know what the doctor has to say.
When I first started writing this blog, I typed a few posts about the holidays and how they can be one of the toughest times for people who are chronically ill, especially with a never-ending stomach issue that has completely sapped you of all of your energy and your ability to do the things that once-upon-a-time were routine. For Colleen, the routine would be baking a pumpkin pie on Thanksgiving Eve, baking cookies and wrapping presents on December 23rd, etc. This is not to say she doesn't partake in other routines we have done through the years: We do our annual "Christmas Light" tours around town (which is typically a mix of "Nice house!", "What the heck were THEY thinking?" and "Such a huge house - and they don't have one freakin decoration outside?") Hey, it is the spirit of the holidays, right? She also still does her outside decorating, typically on the coldest day of the year (not sure if that is just tradition or plain bad luck).
The point here is that for people who are very ill, sometimes the little traditions can still go a long way in an attempt to make the holidays feel "normal", even when they are not even close to being as normal as they once were.
As a loved one, this may be tough to watch, especially if you are experiencing it for the first time: "Oh my! He/she was once so into the holidays, but this year, they just don't have their usual spirit!"
What does the sapping of the spirit typically come down to? Well, for someone with a sick stomach 24/7, the sapping of the spirit typically comes from the fact that holidays are filled with one more tradition: Food. And lots and lots of it. The very thing that helps bring families together during this time of the year is Kryptonite for many with Gastroparesis, or any disorder dealing with the digestive system.
But it goes beyond that - because they can't eat like a normal person can normally eat, their energy is sapped. And when their energy is sapped, it can affect their desires - think about the last time you went 24 hours or so without sleep. That happened to me recently, and I was down for the count for 12+ hours when I finally was able to get to bed. Now, you have to think about having that type of feeling almost constantly; a low energy level coupled with a bad stomach which could be leading to other issues within the entire body. I always talk with Colleen about the "vicious" cycle - and that is the best way to put it. When you have a disease of the digestive system, it doesn't just affect the digestive system - the human body is designed in a way that everything needs to work together in order to have a healthy outcome. If one "switch" gets turned off, your body is "smart" enough to know to try to compensate - but just like in real life, that can only get you so far and eventually, the entire system starts going haywire.
So, what does one do during the holidays if you are caring for someone with any horrible disease? It is hard for me to speak about that in general, because everyone is different. Even people within the Gastroparesis spectrum are different. But just be aware that you should take care of the needs of your loved one, first and foremost. If your loved one is too ill to attend a family get-together, you need to understand that, and not resent it. What you can do (and is something I kinda like to do) is encourage the activities that your loved one can partake in RELATIVELY easily. Whether it is going out looking at Christmas lights, or a stroll through a store, or whatever the patient is in the mood for on that particular day.
The bottom line is to remember the fact that as hard as it may be to watch a vibrant, full-of-life person fall down due to a terrible disease, that the person suffering the actual disease still has it many times worse than you. We all have little, petty complaints in life - heck, as Colleen knows, I still have mine. But life should take on at least a bit of a new perspective when you are watching as your loved one is in bed, or throwing up, or feeling uncontrollable nausea, etc. The list goes on and on - pain, feelings of fullness, nausea, trapped gas, not going to the bathroom for days at a time, etc. Colleen doesn't suffer from all of that, but the symptoms she does have are still what I would consider severe. And this is now a three-year journey - not a 1-week case of a bad flu.
Have a happy and safe holiday season - remember, you don't have to make a choice: You can have both a happy holiday season combined with the feeling of sadness that your loved one is not having such a happy season. The bottom line for you is this: Even though your loved one is suffering, you can still try to make it a very happy season for them. Sometimes, the little things can go a long way. And in the end, whether sick or healthy, aren't the little things typically what matter most?
