Slow Down to Change Gears

I guess it's been quite some time since I posted a blog entry. I honestly hadn't noticed, but it has been months! Lately, I've spent so much time working on other parts of Lemon & Lyme (like our Facebook page, or expanding our Faces of Lyme family) that it honestly didn't occur to me to tell you what I've been up to.

My last post was at the beginning of August, so I'll just give you the highlights. When I wrote the last entry, although I don't think I mentioned it, I had already applied to go back to school. Even with my projects, I felt stagnant, and like I was letting the person I was slip away. So instead of allowing myself to mope about it, I challenged myself. I signed up for a single online class in nutrition, just to see if I would sink or swim.

I got an A+ in the course.

I had chosen nutrition because it actually has practical implications on my life. My list of allergies and foods to avoid is overwhelming at times. I can't have anything with soy, gluten, corn, tomatoes, chocolate... if I typed the whole list, I'm sure my fingers would fall off before I was done. Taking the course was worth it. Not only did the course teach me information that I needed to know, but it also gave me a boost in confidence that I desperately needed at the time.

Don't get me wrong, if I had attempted this before I was ready, I would not have been nearly as happy about the results. Emotionally and mentally, it was time. When I was at my worst and completely bed-bound, just thinking about my favorite activities was exhausting. It wasn't just that I couldn't go hang out with friends, I didn't want to. I was in so much pain that I would hate the experience rather than enjoy it.

After a while, that stopped being the case. Eventually, I had just enough energy to reminisce. Even though I would still have to decline invitations knowing I couldn't make the 20-minute drive to a friend's house, the idea of sharing a hot cup of tea on the couch while watching Doctor Who was awfully tempting. This was when being chronically ill actually became depressing for me. It wasn't until this point that it really set in that my state of health was keeping me from things I wanted to do. When Lyme stopped me from working, that was something very generic. It was much easier to convince myself that a serious illness prevented me from physically exerting myself for eight hours at a time, than it was to admit that I couldn't eek out a single hour of low-key conversation.

But then I got an A. Even if I had only gotten an adequate passing grade, I still would have been proud of myself. One class, without even the commitment of a commute, was a relatively small step, but it meant that I was that much closer to reclaiming the life I once had. It was about then that I had another epiphany

The endpoint of my journey does not have to be the same as its starting point.

By that I mean, I don't necessarily need to judge my progress toward recovery by comparing my life to the way it was before I got sick. Just because I was pursuing one career at the time does not mean that I can't use this pivotal phase in my life to change direction. Back when I lived my life at a mile per minute, I used to wish I had "more time" for certain whims. For example, it wasn't practical to take an extra language class when I was trying to complete a degree program and that requirement was already filled. Now I have all day to sit in front of Rosetta Stone if I want - and there are no deadlines!

In this day and age, we have any information we could possibly want (and far more) right at our fingertips. Anyone with access to a library and a sufficient thirst for knowledge can teach themselves practically anything. With Lyme, I found that the process requires a wealth of both patience and faith in myself.

There is no denying that I don't pick up new concepts as fast as before, and I don't retain the information as well either. The key is to accept this as fact, but also recognize it as a temporary situation that I will overcome. Right now, I can't handle a full-time schedule, and that's okay. Eventually that will come back to me, and I can decide then if it's something that I still want.

Until then, my lack of commitments gives me the free time I've always wanted. While I can't exactly use it to join the Peace Corps, build my own house, or anything like that, there is only so much Lyme can limit me intellectually. Yes, it's harder. Yes, I'm slower. Absolutely and definitely yes, it's frustrating at times. But I'm a fighter.

What have you always wanted to do or learn, but never had the time? What would you need to do to accomplish this?

Click here to return to the My Story section of the Lemon & Lyme site.

Rules of Engagement

It never ceases to amaze me how much drama can result from one person attempting to help another. This is especially true when both parties have Lyme Disease. Because of the disease's neurological effects, it can often be very difficult for two patients to understand one another.

Communicating via the Internet only makes these problems worse. Using a text based format, it becomes impossible to determine the tone that the person intended. Sarcasm is easily misconstrued and jokes often do not have their desired effect. Additionally, we are very likely to be opinionated about our personal treatment methods.

Unfortunately, along with our confusion, many of us have very short tempers. We're very opinionated about our treatments, too. When we see a comment that we don't like in one of our groups it's often instinct to argue. In turn, this may cause the original poster to become defensive. Before you know it, you're caught in the middle of an all-out flame war.

This becomes incredibly difficult for anyone who is looking for a support group. When looking for a group where you can find encouragement and consolation, no one wants to worry about additional stress. So how can you account for these easily made mistakes? Though it can be frustrating, the answer is patience.

When you encounter a post that you don't agree with, the first rule is to ask yourself whether this post really needs a reply. Taking the time to ask yourself this simple question may cause you to realize that what you were just about to say wasn't all that constructive.

Next, read the post again. Try to figure out if there was another way that that comment could have been meant. Perhaps the person was being sarcastic? Or maybe ironic? Are you sure they were being serious?

However when we see someone post a comment that worries us, such a something that we feel suggests discontinuing treatment or even suicide, courtesy will unfortunately go out the window.Though we don't mean to be crass, our concern is overwhelming and we don't take the time to be polite.

Even the best of support groups can occasionally get a bit out of control. It's your job as an active member to not feed into the drama. Do the best you can not to participate in needless bickering. If you don't feel you can handle this responsibility, privately contact a group moderator and turn off your computer.

I'm sorry if I'm sounding a bit harsh today, but this is something that needs saying. When someone joins a board or group, it's because they are in need of help and support, not petty comments and name-calling. If we can all do our best to live up to these "rules," maybe our boards can become more friendly environments.

The Right Outlook

I'll be blunt. The reason I haven't posted anything since my disappointing doctor's appointment is because I hate sounding negative. I wanted to be able to come back with really good news, and I didn't think I had that.

Then I realized I was being silly. I have a pervasive, chronic infection and my system is very compromised. My progress is going to be slow and inconsistent. Despite everything I know about Lyme treatment, my subconscious really hoped this new prescription would be a wonder drug.

I can't go through treatment always expecting to find some miracle cure that will have me running and frolicking in a matter of weeks. If I live with those kinds of expectations, I will constantly be let down. There's a reason that "Chronic" is right in the name.

Herxing doesn't make the new medication process much easier, either. Right now, it feels as though my blood is super-heated and my skin is melting off. Those of you who also have Lyme know that's just the beginning.

This journey isn't going to be any easier if I keep dwelling on the negative, either. If I sit and mope about all my joints being swollen, I might overlook the fact that yesterday was the first day in almost a week that I haven't had serious stomach issues.

If I keep focusing on the down side, it also becomes very easy to forget how lucky I actually am. Unlike many, I am blessed with a wonderful support system who are not only sympathetic, but also able and willing to help me get through my treatment financially.

Always stay positive. It makes this really horrendous experience so much more tolerable. Sometimes, f you can find the one miniscule detail in your life that is undeniably good, or at the very least just makes you smile, it makes it worth it.