Tell it Like it Is

Well, my people, it is Sunday afternoon. I’m really happy I survived this past week. I hope all of you did too. I am feeling much better today. Thank you all for your support. Today, I was pretty productive if I do say so myself! After a week of being too sick to do anything besides lay in bed, I was up and fairly active today. And no nausea! Which makes this day even better. Since I was way behind on grading, I told myself that if I could knock that out, I could come and write here. It was a great incentive!

I’ve been thinking a lot about this blog, and its focus. Yes, the focus is on Lyme disease and more specifically, my own personal experiences with treating and living with this disease. Over this past month, I have run into some people on social media and people in in my day to day life who also deal with a chronic illness and that, for the most part, has been a wonderful way to connect. However, it has also made me reflect on my decision to begin telling others about my illness. Coming out of the closet, so to speak, about having Chronic Lyme disease.

When I was first diagnosed with Lyme disease, I told my immediate family and my boss. In the beginning, while I knew I would have to treat for awhile since I had been sick off and on for about 3 years before the diagnosis, I had no idea that this might be a chronic illness for me. And, as I was so very sick back in 2013 when I found out finally what was going on, I thought it only prudent and honest to explain what was going on to my boss. The support was overwhelming. I also shared with a few colleagues who are dear to me. Otherwise, no one else knew, and I was happy to keep it that way. In my head, I felt that telling other people was a burden to them. It almost felt like by telling them, I was making excuses about why I couldn’t keep doing everything I had been doing. Being sick, to me, was a sign of weakness. Not that I thought that about other people. That only applied to me. Always the perfectionist, I am way harder on myself then on others (although I am sure my students would beg to differ!).

This strategy, the one of silence and limited sharing about my health, worked for a bit. Well, almost 2 years. And while I did make progress in treatment, I just could not continue with all of the responsibilities I had at work. I was in a leadership position and a club sponsor. These along with teaching 5 upper level junior/senior classes every day. I just had to make changes and move some things off of my plate so I could focus on improving my quality of life. This treatment thing was taking much more time than I had anticipated. Making the decision to no longer sponsor the club I had started back in 2008 and then also stepping down as a leader, these were tough, tough decisions. I struggled with feeling less than, incompetent, weak…oh, the list goes on. Reorganizing my priorities was a challenge. But I knew that I did not want to end up sacrificing my work by becoming more ill or vice versa. Something had to give.

bull

Taking the bull by the horns, I relieved myself as club sponsor and my leadership position at the end of last school year. But in order to do this, more people were going to have to know the reasons why I was making this decision. Uncomfortable to say the very least, at least for me. I’m not big on sharing private things unless it is with close friends. In order to move on though, I did indeed share the basics about my health issues with my colleagues and my boss. I am chronically ill at this point, I have good times and then I have some really bad times, such as this past week, and I cannot make it to work. Communicating with others what was/is happening to me has become a huge relief.

Looking back, I honestly can say that I wish I had done so earlier on. Being more open and honest about my health has actually led to some great conversations with others. It has humbled me in ways I never knew. The kindness and understanding people have is truly amazing. Do I still have days where I feel like a burden? I sure do. But opening up has been a truly important step for my recovery, I believe. Thank you all for joining me on this journey!

Have a great week! -b

Accepting or Embracing Chronic Lyme

Howdy, fellows!

Loss for words
My brain on words!

I think I may have mentioned before that I am in the process of accepting, or at least trying to accept, the fact that this disease is going to take a while to shake off. Not only am I struggling to come to terms with that, I am also struggling with the notion that this is a chronic condition (even though the CDC denies this fact).  For me, there is a fine line between acknowledging the illness and embracing it. What I mean is that in my messed up brain, I feel like acknowledging  that I do have chronic Lyme equals giving in. And, I am not a fan of that!

It is ridiculous, I know. Accepting does not equal giving in, but again, in my lymie brain, getting over the semantics of it seems to be a real challenge! Plus, I just read an article about Debbie Gibson in which she states that she doesn’t call her experience with Lyme Disease a battle, she calls it “overcoming” Lyme Disease. See here: http://www.people.com/article/debbie-gibson-lyme-disease-recovery. She says that referring to Lyme Disease as a battle gives it more power. Maybe. Maybe. So, I guess for me, maybe this is a similar conundrum.

Yes, there are bigger and more important fish to fry! But the reality is that I have been dealing with this disease for several years now. I spent about 4 years sick with no idea what was going on, and now I have spent another 21 months in treatment. Sometimes, it is difficult to think about all of this time spent “overcoming” this illness. Although, many people out there have suffered way longer than I have for sure. I just feel like the words I use in my self talk are really important. Do you feel this way? Or am I wasting time on something that really means nothing?

At first, when I started treatment, I did feel that it was a battle. But now, almost 2 years later, I feel battle weary. I was really hoping it would be a short war, and that I would be the victor! I bet we all had hoped this!!   But here I am, years later and still, every day feels like I am fighting. Fighting to get up, to go to work, to make it through the work day…etc. I sure do not feel like I am overcoming anything! Lately, though, I have tried to just accept that indeed, getting up each day for work is a challenge, working all day is a challenge. I am trying to get my brain in sync with my body but without giving in.

Does any of this make any sense to anyone out there? Bottom line is that I know I need to accept this stage I am in more than I do right now so I can hopefully move forward and deal with life as it is right now a little better. But how do I acknowledge or accept where I am right now without feeling or thinking that I am giving in? Can anyone relate to this at all and if so, can you give me any suggestions/advice?

Wishing you all a pain free day. Peace-B