These flowers from Jess made me smile on a pretty bad Lyme day.
I really hate when people say I need to embrace my new normal. Personally, I really loved my old normal. We were besties. I was physically fit-well I ran and ate semi-healthy if you ignored my staple lunch of coffee and chips. I was always full of energy and not good at sitting still thanks to my friend ADHD. I was able to remember important things like my social security number and what happened 10 minutes ago. I had romantic dancing dates with my husband and got together with my dance crew weekly. I was able to concentrate and multi task and accomplish crazy amounts of shit! Then, I got bit by another tick which gave me Lyme again, Babesia, Bartonella, Rickettsia and parasites. This is when my “new normal” was forced on me and sadly, onto the people in my world.
So, don’t worry because this blog isn’t all about you feeling sorry for me. I want to share my words of wisdom-such as they are-that I have gained from living this Lyme hell for years now. I want to help you Lymies feel supported and you Lymie-lovers to understand what it feels like to be a Lymie. Lyme Disease destroys relationships because people can’t adapt to the new normal imposed by this debilitating disease. Learning about Lyme can act like a GPS and help all of us affected by it ride on the Lyme roller coaster together. I have also asked my family to share some thoughts this time around. We Lymies are not the only ones impacted by this insidious disease. I am hoping that by sharing experiences, we can all gain the understanding, patience and compassion needed to travel this ridiculous path together.
Hint 1: Lyme can turn on a dime. I can feel so awful physically one day and then completely fine the next day. Hell, my symptoms can come and go and change by the hour sometimes! I literally can have aching joints, a headache, a fever, and be too tired to get up off the couch at 11am and be ok by dinner sometimes. When I whine too much because I feel so so so awful, to use Jessie’s words, my husband will say, “Tell me something that doesn’t hurt”. One time, I answered with “my eyebrows”. So, for my part, I want you supporters to know that it doesn’t help to hear you say “snap out of it” because believe me when I say I would if I could. Related to this, loving people in my world often suggest that I rest on good days or admonish me because I am “doing too much” when I feel good. Here’s the thing. Lyme makes you feel miserable when it wants to-period. I am sick when Lyme or other infections are active or some of the bastards are dying off. It is not related to what I do, and it is NEVER your Lymie’s fault for feeling sick. We Lymies have a limited number of good days, and we don’t want to spend them resting up for the bad days. We want to live while we can-simple.
Hint 2: Lyme can provide new loves and interests! This one is a tricky, but necessary adjustment for all Lymie relationships. We Lymies simply can not live in the same world we used to. Sadly, many of my relationships involved physical activities such as bird watching adventures with my nieces, tennis with my son and dancing with my husband. My new normal includes bird watching from a car and watching tv with my son while we cuddle with his puppy. I truly miss dancing with my husband and hanging with our friends there. For now, my husband and I watch movies and birds together and argue over politics. Thankfully, our dance group still gets together for dinners and movies and easier activities almost monthly. As for new interests and skills, I am happy to say that this blogging mission with Jessie has been a fulfilling gift as well. My husband has even gained some significant nursing skills in case he ever decides to switch professions. I do miss my old activities, but I am trying to learn to enjoy the gifts of getting to actually talk with people and know them better.
Hint 3: Lyme and coinfections have a lot of negative baggage that we Lymies must carry everywhere. For instance, travel can be a nightmare-see my earlier blog for a few laughs. My medications need a freaking suitcase of their own! The costs associated with Lyme Disease can be debilitating for families due to the sheer amount of needed doctor visits and medicines as well as issues with good insurance coverage. Financial stress creates emotional stress on families that can weigh heavy on a Lymie’s mind and negatively impact every other aspect of a Lyme family’s life. The fatigue and brain fog that Lymies live with also travels everywhere we go and can be hard on relationships. I often must make plans that revolve around my meds and then I miss them because I screw up the date or am simply too tired to participate in them. My advice for Lymies is to write EVERYTHING down as soon as can because you will forget it-trust me. Also, I try not to make plans that depend on my participation because I feel bad if I ruin other people’s opportunities. My wish for you supporters is that you really try to be patient. Your Lymie’s lack of concentration, focus and memory is far more irritating and depressing to him or her than you. It is not like Alzheimer’s because I KNOW I can’t think straight sometimes.
Hint 4: The psychological aspects of tick-borne illnesses can take a major toll on everyone involved. This can include bosses and coworkers as well. Jess had to work from home until her panic attacks were attributed to Lyme and finally treated correctly. Lyme has also caused depression for me which feels like a heavy blanket weighing my body and brain down. Bartonella causes extreme irritability and negative outbursts and all the illnesses can cause anxiety and mood swings. It is harder to find a silver lining to these issues. I think it is more about coping skills and damage control-both personally and professionally. Both Jess and I have learned to expect that these moments will happen and know that they will pass. I have also learned to beware around Jessie every 3 or 4 weeks as her Lyme presents with scary mood shifts sometimes lol. We try to never let anger last and Lyme discovered that Lyme can be a good scapegoat to blame and lets everyone involved win an argument!
As I said, I wanted this blog to be helpful to everyone who has been impacted by Lyme Disease. It is really hard being a Lymie-it just is. I hope this blog helps you fellow Lymies feel more understood and supported. But sometimes it is hard for me to see life without looking through my Lyme lens and I really wanted to help us Lymies understand how our new normal affects those around us. So, I asked people in my world to share how they feel Lyme has impacted their world or their relationships with me. Their responses have allowed me to see Lyme Disease from other perspectives and they contain some common themes.
My son Colin and partner in perseverance had a response that surprised me. Although he said he misses our walks and tennis, he also said that I “do an amazing job of not letting it (Lyme) get in my way”. My niece and partner in crime said it is hard and stressful for her to see me sick because she can’t help me. She worries that I try to handle too much and though she understands why I cancel plans due to being sick, she gets disappointed. She said I am less patient when I am sick and wonders if Lyme controls too much of my life. My daughter Jessie and partner in Lyme says Lyme rage is the biggest issue and feels lucky that we understand the fights will pass and our bond can grow stronger through the experiences. My husband and partner in life said he must bike ride and run alone as the things we used to do have “gone out the window” He said he is happy to go gambling instead though lol. He also said, “That is why it is called for better or worse and through sickness and health”. When I asked him directly, thankfully he said he doesn’t feel overwhelmed as a caregiver.
My sister Shannon and Partner in Advocacy says she is “saddened to bear witness to my everyday struggles”. She worries that I live no life beyond Lyme due to my many sick days and my researching, educating, and blogging on my few good days. She misses my energy and infectious laughter almost as much as I do. She also said she “selfishly” misses spending time with me as opposed to spending time with the Lyme but wants me to live my best life. My sister Erin and partner in publicity has supported me through every step in my mission to educate people about Lyme Disease. She is the mom of 2 great teenage boys and is crazy busy between work, athletics and chauffer duties. Her life makes me remember how busy I was with Colin and Jess and how hard it was when I had Lyme before. If you are a busy mom Lymie who is dealing with coinfections as well, you will need all the support you can get!
My mom’s response had to be a direct quote-she almost made me cry lol. “If you know Robin, you know she is smart and persistent. As her mom, I can lovingly say Robin has always been stubborn and a force to be reckoned with. Despite her tenacity, it took her so long to find a Lyme literate doctor, that the infections had time to severely damage her immune system so that she needs weekly infusions. She has an oversized basket of medications and a schedule that would challenge anyone. Still, Lyme Disease knocks her down. But she gets back up, goes to work at a job she loves and tries to live a NORMAL life. It breaks my heart to see her struggling through the pain and exhaustion but thank God she is stubborn.”
Well, there you have it-views from living inside and alongside Lyme hell. I am almost done rambling on this topic. I love to educate, but I also wanted to reflect on what I have learned from this blog. I intentionally wrote the beginning part before I received my family’s responses, so I could see if we saw 2 different sides of the same Lyme coin. For the most part I think that is so. My family hates to see me being sick as much as I hate being sick. My family misses my participation in activities as much as I miss participating in them. My family waffles between worrying over me doing too much and being proud of those same accomplishments. My family is jealous of Lyme’s hold on me and does not like how Lyme consumes my life anymore than I do.
Hint 5: From one Lymie to all you others out there, I would like to suggest that you ask the same questions to those in your world. I learned that my family is dealing with my Lyme the best way that they can. Jess and I get the pleasure of living both sides of the coin with each other which can be both supporting and challenging. Hopefully, this blog can be a family read that will open eyes and encourage acceptance and gratitude for the rare good moments you all share in your Lyme journey together. For myself, I can only say that NO ONE misses the old Robin more than I do but I truly could not be more grateful to everyone for the way they have adjusted their normals to fit together with mine.