"A little consideration,
a little thought for others,
makes all the difference.
Or so the say."
During my time off, I have continued to have interesting experiences regarding people’s ideas of what being on a medical leave entails. I know for many people who work, the immediate questions regarding someone not having a job is literally “what do you do all day?” and “are you in bed all the time?” In response to the first question, I wish I could say I was bored at home but honestly this illness is tiring and time consuming. And to the latter, no I am not in bed all day. There isn’t a day that goes by I don’t experience the symptoms of DIGITS, but for me staying in bed does not help my symptoms. This is not to say that rest in not a vital component in me maintaining this illness.
I have also had many instances of people stating “it must be nice to be in a situation where you can afford to take a medical leave”. The thing about a medical leave is that it is NOT something that occurs as a result of that person’s choice. It is a decision made by medical expert. To be honest, I was very resistant to the notion of taking time off of work. It took many discussions with numerous doctors stating that I will not survive if I do not try and get my illness under control. The illness would win; it was only a matter of time if I continued on the road I was on. I had to make the change. I want to live a full life with my husband and family, but we live in a world that defines us by what we do and the more we can do the better. I wanted to be one of those people. I wanted to be one of those super women who can do it all (work, wife, and hopefully one day mother). But with DIGITS, it wasn’t going to happen. When it all comes down to it, I was angry. This is not to say that I am not grateful I have someone who is willing to support me and understands the gravity of the situation, but that does not mean that this necessity for a medical leave has not greatly impacted our lives. I needed to grieve for the life I thought I was trying so hard to create.
Presently, I have been off work approximately 5 months and when I think back to when I was working, I think who was that crazy woman? I gave myself no time to acknowledge and understand the needs of my body.
I think the best way to reflect is to share an example. One week prior to my series of infections and line problems in the spring, I had a work conference schedule out of the city. At the time, I was instructing, working 3 research contracts, pursuing my PhD, and had a lot of doctor’s appointments with trying to keep DIGITS under control. I knew that this particular day was going to be a long one and it was also at the end of a very long week. My husband was seeing lots of red flags with how much work I was doing and how my body was handling it. But I did not want to hear any of it, I was determined and I was going to make it. I decided to take the train to the conference to avoid the long commute. The downfall to the train was I had to leave really early and would be home later, but I thought this would be more
I attended the conference without a hitch and was more than ready to head home. I was waiting to see what platform the train I was taking home would be on (which meant the train would be leaving in the next 10 minutes) and all of a sudden felt a POP on my stomach. All of you ostomates out there no exactly the feeling I am describing. My bag broke. I ran, I mean ran to the bathroom and sure enough I was covered. I believe that is all the visualization you need. From electing to take the train, I could only bring what I could carry, which meant, what I needed for the conference and a lunch. I only had a wafer and bag for Oscar. No spare clothes or anything else that may have helped and by this time I had about 5 minutes. If I missed this train I would have to wait 2 additional hours. So I did what I could to clean myself up and ran to the platform. Lucky for me I made it on the train with tears streaming down my face. As I sat down, the doors closed and the train started for home.
Let me tell you that was one of the longest rides of my life. By the time I made it home, I ran right upstairs and into the shower fully dressed and sobbed.
I don’t like to focus too much on the specific symptoms I experience because I know each of our bodies with a chronic illness are different. But I think it is important to share with this story. I have an ileostomy that is extremely active, even when I am not active. So if I am really active and stressed so is Oscar. At that time in my life, I was not stopping and neither was Oscar. I knew once that had happened, it was a sign. Prior to this incident, there had been others that I had chosen to ignore. Within a week, I was in the hospital.
When I think about the experience I just shared, it brings me much sadness to think that I had pushed myself to that point. I know Oscar will have technical malfunctions in the future, it is inevitable and I have some since then but not to that extreme. Those long days I described are unrealistic for me and that is okay. Well, I am working on that being okay…
So yes, I am at home every day for 5 months and counting on my medical leave. I know I won’t cure DIGITS but I can make my life with DIGITS better and that is good enough for today.