Change isn’t always about being loud.

As Lyme Disease Awareness month gets under way, I see thousands of posts a day trying to spread awareness. This has been hugely helpful because I can see what works and what does not. Hint: its not the loudest ones making an impact.

Everyone has their style but is being loud and in your face about information something that draws people? Usually no. To draw people to you, you have to build a human connection, give them something to relate to. While all Lyme Disease awareness is great, if we are tactful we can make a bigger impact.

What drew you into a community you are part of? Think about how you would want new, scary information presented to you. Most awareness for medical conditions is only achieved by ones close to those sick learning more and advocating. Screaming that this disease is deadly and omnipresent, while true, is scary and sends people running.

I think about who cares most about me and didn’t know me first. Our first conversations were about who I am, my hobbies (even if they are on hold), my passions, not about Lyme. I slowly let them in about the seriousness of the disease. With the time they took to get to know me, not just my illness, built a stronger connection and therefore more empathy. Empathy is far stronger than fear.

So to all the amazing advocates out there, I urge you to strengthen your message. Try to look from the outside in. We have created an amazing Lyme community. Now it is time to reach out to those who care about our condition and not to scare them but to bring them to our team to end the epidemic.

To make a friend, I have to change Lyme Disease

As I struggle to do my taxes, among yet another brutal week of treatment, my credit card transactions tell me something very clear that I pretend doesn’t exist. The transactions read: Doctor, doctor, supplements, doctor, supplements, and so on… 3 years ago it read: My favorite bar, a new restaurant, clothes, crossfit classes, 5k registration… Its not only that my life has become all about my health, its that there is no friendship in my transactions.

Almost ever previous transaction was a socialization with friends. We went to other countries, we worked out together, we tried new foods. I had 2 expenses on my credit cards for dining out with friends for the YEAR. Loosing the people I thought would be my friends forever has been something I try to forget about constantly but it never stays hidden. I don’t consider myself a sick person or a spoonie but as I look over my credit card statements I have nothing to disagree with that labeling.

I very much consider a friendship a two way street and I’m sure some of the burden falls on me. I am not a perfect friend. I just thought my friends would be there for me when I needed them.

At this point, my friends are 90% people who share my illness. They are the ones who understand the suffering without saying it, the ones who let me cancel plans without an interrogation, who understand why I am broke and struggling, because they unfortunately get it because they live it too.

When I sit pondering how to raise awareness for Lyme Disease, I’m at such a loss because even my friends don’t care. How am I supposed to rally strangers if I can’t even rally those who were my friends? I have no doubt I will return to an at least functional level one day but I frequently worry about what my friendships will be like. There’s no logic in returning to friendships that weren’t there for you but how do you find the ride or die friends? I feel that having all friends who are struggling with Lyme gives you a narrowed view but at the same time how do you pretend to be normal when you arnt? How do you explain what you have been through without looks of pity or disregard?

As I finish counting transactions, the answer is still the same, that I have no idea how to maintain relationships with friends through Lyme. Honesty is scary and faking it is insincere.  All I can hope for at this point is that my awareness efforts will some day make a big enough impact to be understood in the way cancer and HIV is now. If they can do it, I can do it. And, no my taxes still are not finished.

My life: The juggling routine

It feels like such a crazy week for not having done much… yet.

I am safely in Richmond despite the Lyme bugs trying to take me down. I’m stalking the mail man for Liz’s new herbals that will put the bugs back in their place from their uprising while enjoying my last few days off antibiotics. I have a “top secret” Lyme Warrior project I need to attend in the next 2 weeks so I’m just keeping my fingers crossed for a good health day(s) and the man being able to drive me to them. Some new products are coming for Lyme Warrior and I’m hoping the suppliers can get them to me before I’m on to my next location.

Speaking of locations, I will be in Richmond for the next two weeks but then its back home and then a fast trip to Pennsylvania. I will be starting with a new doctor (more on that later). Then after that I will be headed to Alabama to see my Aunt. Lots of road time for me. September is going to be full of miles.

Between those things I’m still working on raising awareness about safe skin care & cosmetics. This is really a priority for me because it is an important aspect of my health and between the hospital bill a few months ago and multiple private doctors this money tree is tapped. I’m pretty much just pushing forward and hoping it rains money. That happens right?

Being back in the city I used to live in, I’m also trying to see my friends. I have baked cookies so in theory they shall come. Fingers crossed I don’t run into another health disaster that keeps me from them like last time. All that being said, I’m so excited for all the new things happening and totally exhausted at the same time.  If others can juggle treatment, detox, friends, businesses, and awareness than so can I! Right after this nap!

How do you plan when yo don’t know the plan.

Since I became sick with Lyme Disease I’ve been trying to figure out how you plan for your life when you have no idea what you will be capable of. I kept wishing someone would just tell me when this is all going to be over so I could start setting up job interviews for that day and put a deposit on an apartment but of course its not that easy.

Its been almost 2 years exactly since I got sick and it is finally time to start considering the “getting better phase”. Its hard to consider this phase in the middle of a herx and other issues. But with all the things that should make me feel awful, I’m still able to walk around my house and do easy things. Leaps and bounds of improvement from where I used to be. Next week, I plan to try to start driving again. Its been almost a year that I’ve been off the road so this will be a huge step forward for me.

My doctor slipped in a comment a while ago that after this round of medication we might move to “maintenance” antibiotics. While I’m not sure we are to that point yet, its encouraging that this could be coming to an end, but scary that I don’t feel like myself again yet. I’m between doing a ton of research on alternative treatment vs generally planning what I will do if I’m healthy. Its a hard crossroads to be at, not sure if I plan for the worst case scenario or the best. I guess I will just plan for both and try to be an optimist.

Above all this pondering I’m so absolutely thankful to be improving. To start having worries like a “normal” human, do I still have friends I could go out with? What are my job prospects? And further to be able to get on my feet and start doing more for Lyme Disease Awareness.

Lyme Friends vs. Friends

The other day I put up the same status on my personal Facebook and my Facebook with mostly Lyme friends. One got 26 likes and 20 comments. One got zero and zero. This might seem shallow but this is such a truthful reflection of what life is like with Lyme.

I probably have about 3 people I would consider my friends these days (non lymies). I love them very much but they are very busy with their lives and dont have time for me much. Don’t get me wrong, I appreciate literally everything they do for me and they put in whatever they can to help… but Lyme friends, they instantly get it.

Lyme friends don’t need to commiserate on the symptoms. They say “this worked for alleviating the symptoms” or they say that sucks. Others say nothing or they say well yeah I hurt too after I went to the gym the other day. What I wouldn’t give for normal gym ache anymore. I understand they are trying to commiserate but its not eve close to the same.

I wish I had reached out to others with my disease way sooner than I did. To have people who understand not only the physical pain but all the other bs that comes with Lyme are really irreplaceable at this point. From just airing frustration, inside Lyme jokes, to being able to talk to someone who faces literally the same frustrations of not being understood by your support team. Having Lyme friends is one of the few things that keeps me from not feeling so isolated from real life. Its so frustrating we cant all help each other out physically because we are all held back by the same disease but the network of people who get it is really what every sick person needs.

The sweet sound of silence

One of my harder adjustments after becoming ill was realizing I had to be dependent on others for help. Pre-illness, on the run from job to school to gym and again all day, I rarely needed help and if I did it was minimal.

Fast forward 22 months and I need to be driven every where, occasional help with preparing food and any errands or outside things I need I either have to pay to be delivered or ask my parents to get it for me since I now live at home.

Don’t get me wrong, I love my parents a ton, but I am used to my space. This week I finally got a chance to get away and stay at my ex’s house. Now while this doesn’t sound optimal he is at work or the gym most of the day so I am soaking in hours of silence and it is wonderful.

Not all of us have the option but if you do, take a break. Sometimes being sick in a different place is refreshing and gives you a way to reset. I’m filling up my patience meter and getting tons of work done, uninterrupted. Take away message, keeping your needs satisfied is important. Do what makes you happy and thank those who make it possible. 🙂