You said WHATT???!!! Things never say to someone with Chronic Lyme Disease

            I first want to start off with saying do not feel bad if you have ever said any of the following statements to me pr anyone else at one point or another. I know everyone has good intentions but, for me, there are just some things I do not want to hear. So this blog is going to be about what NOT to say and what to say instead. All of these statements have been personally said to me and I would like to explain my Lyme point of view to you so that you may understand how your words can encourage me or discourage me. Again, I know you all have the best of intentions and I don’t hold anything against anyone. This blog is simply an explanation of different statements and why it is not a good idea to say them to anyone who has Lyme Disease or a chronic illness in general. The second part of this blog post will be pointed towards what to say instead and how to convey what you want to say in a way that will encourage a person who is suffering from Lyme Disease.

What to never say:

1.  “But you look so good!” Sounds harmless enough right? It is a compliment right? WRONG. Basically what you just said is, “You can’t be sick. You look perfectly fine and good even.” People who suffer from a life altering disease do not want to feel like all the fighting they do every minute of every day is to ultimately be rejected and stepped on because people on the outside do not see the pain in our eyes. If we turned our bodies inside out and you saw everything we went through just to get out of the house you’d never say such a thing. We may look good on the outside and, while it is nice to hear we look good, it’s also a bit of a discouraging thought knowing no one knows just how difficult our lives can be.

2.  “I wish I could take naps whenever I wanted.” This statement is (hopefully) pretty self-explanatory but unfortunately I can’t count how many times I’ve been told this by people my age and people much older than me. Yes, naps are great. I’m not going to deny that but naps are only amazing when you can have the choice of not taking a nap. Just like toddlers, they never want to take naps but they never have the choice either. They simply need their sleep. It's the same with Lymies. We need our sleep to recover. It is not our choice but our body's need. Most people have a choice to either take a nap or participate in something productive. If it were up to me, I’d choose to not nap and be productive. You may be jealous of me being able to take a nap whenever my heart desires but I am jealous of you because you have a body that is not exhausted 100% of the time. Which leads me into #3.

3.  “I get tired too.” Oh boy, where do I start on this one. Lyme Disease exhaustion is different from normal people tired. Lyme fatigue is beyond words. I remember days where getting out of bed and taking a shower were enough to put me back to bed for another 3 hours. Lyme fatigue is physically and mentally brutal. If we fight the fatigue and not rest when needed we tend to just make ourselves sicker and then it takes even longer to recover. I know when people say this they are just trying to make us feel understood and not alone but, trust me, unless you have Lyme it is hard to imagine this level of exhaustion. A better example of this fatigue would resemble the spoon theory.  The picture below explains the spoon theory. Basically, each activity of the day costs (x) number of spoons and you only have (Y) number of spoons allotted each day so once you run out of spoons then you borrow from the next day’s supply.

4.  “Have you tried taking____________?” Again, I know you are trying to help but whatever you are suggesting we have probably already tried. Thank you for thinking of me and what might help but please just let me and my doctor work out what is best for my body.

5.  “Are you better yet?” Thanks for hoping I feel better because I’m right there with you! I want to feel better just as much as you want me to or more but this is a very long process so no I am not better yet….thanks for reminding me though.

6.  “How are you feeling?” Prepare to be lied to. No one wants to hear “I feel horrible, thanks for asking.” I am going to plaster on a smile and say “I’m good” and quickly resort to, “How are you?” to change the subject. Stop making me lie to you and just stop asking. Trust me, I will tell the world when I feel great because I will be just as excited as you are! Otherwise ask anyone but me how I feel.

7.  “It’s all in your head.” If you say this always have good dental insurance and be ready to duck because my fist just might accidentally come into contact with your jaw. Sorry, irritability is not a symptom of Lyme it’s a symptom of being around stupid people. It is not all in my head. It’s all in my head, gut, muscles and anywhere else the spirochete can burrow into and destroy. My body is being destroyed from the inside out and you think I’m faking? Why the heck would I give up my life, my friends, and my dreams to fake a sickness that most doctors don’t even believe exists? If you say this to me just know how deeply five words can hurt. Thanks for believing me when I need you the most.

8.  “You just need to eat healthier and get more exercise.” That’s what got me here in the first place. I was a girl who ran cross country, rode horses, participated in Tae Kwon Do and held a very active lifestyle. I got a tick bite while trail running and two years later I was diagnosed with chronic late stage Lyme Disease. This little tick bite changed my life. I got the bite while having a healthy lifestyle. Thanks for the advice but no thanks that will not cure all my problems.

9.  “Feel better!” or “Get well soon.” I wish. I wish it was that simple. I wish it was like a stomach bug or something you can get over in a few days but it is not. Nothing about Lyme disease is simple. It’s long, laborious and downright hard to get through. When someone says this to me they are discounting all my hard work and all my fighting to simply “get well soon.” If that’s all I wanted I would go buy myself a stupid balloon that said that.

10.  “It could be worse” or “At least it’s not cancer” (deep breath 5…4…3…2…1…) you are right. It could be worse and at least it is not cancer. Cancer is horrible. Lyme disease is horrible. If you think about it there are many similarities between the two diseases. 1. Cancer treatment and Lyme treatment make the patient horribly sick. 2. Both can be fatal if not caught early enough. 3. Both destroy your body from the inside out. I am happy I do not have cancer and I’m glad I don’t have it worse than I do but I would still like you to acknowledge the pain I go through each day as well. I do not want attention but simply acknowledgment that you understand and you believe me.

What to say instead:

1. “I love you.” Simply hearing this statement makes my day just that much better! It makes my heart light up and gives me energy to fight.

2.  “I believe you.” Oh how I love this. I love to know you truly believe and know what I say is true. Believing in me and my abilities and what I tell you about my disease is an amazing feeling.

3.  “How can I help?” This one makes me smile. I will usually never let you help but it is nice to know I have someone standing by my side while I do it myself.

4. “I understand.” This one is a big deal for me. Understanding that I am doing everything I can to get better is huge. I need people to truly and wholeheartedly understand when I have to cancel plans. You have no idea how horrible I feel about having to cancel. For every time I have to cancel something, Lyme has won in that moment. That is absolutely unacceptable. Our plans were very important to me and I never want you to feel like I have blown you off. That is not what I want but unfortunately I cannot predict when I will have bad days. So if we had plans that I had to cancel please please understand I am just as disappointed/upset as you and I am really sorry.

5.  “I am proud of you.” This one is nice to hear as well. Sometimes I get upset with things that I had to give up because of Lyme. For example, school. Most of my friends went off to college somewhere and are having a great time. I’m working my butt off to get through 3 classes this semester. I don’t have any outstanding accomplishments at this point in my life. I don’t play sports or participate in any extracurricular activities, no scholarships or awards either. To hear that someone is proud of me despite my limitations is amazing. If you asked little Kelsey what I thought my life would be like now I would say “off to college somewhere and doing something with my life.” Instead, I am sitting here in my living room writing a blog about my life as a Lyme disease patient. It's not what I expected but this is God’s plan for me. Hearing someone is proud of me is just affirmation that I am doing exacting what I need to be doing right now - following God’s plan.

6. “Thinking of you.” Whether it be a text or a tap on the shoulder I feel the love when this is said. I don’t care what the thoughts were. I don’t even care if you were plotting my murder I just feel special to know I am important enough to be a part of your thoughts in that moment.

7.  “I’m here for you.” This is a good one for when you have no idea what to say. It’s perfect for every situation! This statement is like all the other statements all wrapped up into one. I know you believe me, I know you love me and want to help me and I know you understand what I’m going through. Thank you for being here for me it is a huge encouragement to know I have people on my side fighting for me and with me.

In the end, please be aware of what you say and how it can be interpreted through a Lyme point of view. 

Positively Positive

    Everyone has their good and bad days. Some days we are so productive and we get to check everything off our to do lists and then there are other days where there just doesn't seem to be enough hours in the day. Busy and stressing over everything seems to almost be a normal occurrence for some. It doesn't have to be that way. Slow down and enjoy the moment you are in right now because you will never have the same moment again. If you are stressed out over work or school just sit down give it to God and resume your day with a more positive outlook.

    Most people downplay the power of a positive attitude. The outlook you have on something can change everything. It can make it more fun or it could send you into a downward spiral of negativity that can ruin your day. It's up to you which one you pick.
    For the most part, I tend to be a very optimistic person but we all have our days or moments of getting caught up in the wrong thought process. One option is that I could dwell on the struggles of my life or I could use them as stepping stones to become closer to God. Instead of being upset that I wake up in pain or have nightmares when the pain is bad I pray and ask that God be the one to help me see the purpose of this in my life. I ask that He give me the strength to endure it with a smile and a joyful heart. 1 Thessalonians 5:16-18 says, "Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you." Give thanks in ALL circumstances, not just when things are good and you are happy but when you are struggling and things don't seem to be going in the direction you want. You may not understand His plan for you right now but that is okay! Whatever it is you know it will be amazing! I can honestly say I would never change or take back what I have gone through if I could. I am happy with my life. Yes, I have setbacks. Yes, I still have lyme disease. Yes, I work my butt off everyday to get things done. And Yes, I couldn't be prouder of where God has lead my life in the last 5 years. A positive attitude can not only change your day but it can change the whole outlook for your entire life. Some people look at me and I get those dumb pity looks because they feel bad for me and I never understand that. What is there to feel bad about? I am not missing out on anything nor am I unhappy! I am a child of God! What is there to not be happy about! When someone gives me a pity look all they are seeing is the struggle and pain but with a positive outlook your eyes are opened to the happiness, endurance, and God's power in my life. That is what I want people to see because that is what I see. If you change your attitude you change how you see everything. You see potential in the drug addict. You see a fighter in the single mom. You see an opportunity to love a child when visiting an orphanage or NICU. You see God's healing power in the pain. You see a great life in everyone's future with God.
    God is the secret to a positive attitude. When you are feeling overwhelmed with life's demands God calls us to cast our burdens onto him. Psalms 55:22 states, "Cast your burden on the Lord, and He will sustain you..." You are not meant to carry the burdens of life on your own two shoulders! Philippians 4:6 urges, "Do not be anxious about anything, but in everything by prayer let your requests be known to God." God has meant for you to bring your struggles to him so you may live a joyful life. We are meant to cast our burdens onto Jesus because He cares for you. (Clap, Clap, Clap) So if you have given it all up to God what is left? Relief? Happiness? A better attitude maybe? For me, It gives me a sense of relief knowing that God has my back no matter what! If I fall, if I make a mistake, if something upsets me or if I just don't understand something I know God will always be there to take my sins, my pain, my struggles and make them into something beautiful. That is what makes my heart happy and joyful. No matter what happens God is the light at the end of the tunnel and each struggle is just a stepping stone closer to God. That is what makes me smile and that is what makes me happy! That is what gives me a positive attitude.
    

courage with a lowercase "c"

    Happy New year everyone! It's a brand new year for so many exciting things to take place! Today I want to talk about what it means when courage has a lowercase 'c'. When most people think of Courage they think of superheros or people that have accomplished great things in their life. When I think of Courage I think of people who have climbed mt. Everest or people who have stood up for what they believe in and they've done it in a huge way. I see Courage as a lion that roars but have you ever thought that maybe courage could also be a struggling person taking it one day at a time. courage with a lowercase 'c' can be the voice in your head saying, 'just try one more time'. It's the voice saying, 'I know your afraid but I am here with you and you can do this'. Being courageous isn't always what people think it is. There is always two sides to everything and you must look at both sides to really understand. Everyone is courageous but everyone is courageous in their own way. For some people it could look like a lion roaring. It could be something that made a huge difference in their community, school, neighborhood, or even nation wide but for others courage can look like going to work or school even though it would just be easier to stay home or it could be standing up in front of 20 people to teach them about something important.
    The dictionary definition for courage is the ability to do something that frightens them. Then it lists some synonyms and most of them I agree with but one I do not is fearlessness. In my opinion, you do not have to be fearless to be courageous but you are courageous despite fear. It is always okay to be afraid but it is what you do with that fear that matters. You can't let that fear overrun your faith. Your faith must always be stronger than your fear. I could be afraid that I won't be able to start nursing school next fall but I'm not because I know, as Noah so graciously pointed out to me, God's got my back so no matter what everything will be okay. It doesn't matter if I start nursing school next fall or in 3 years because I know God's timing is always the best timing. If I let my fear of setbacks overcome my faith in God's plan it'll do more harm than good.
    courage with a lowercase 'c' says even if I mess up today there will always be tomorrow to do better and be better. It doesn't have to be big or bold or even noticeable to others. courage with a lower case 'c' says to believe in yourself, know that you can do it, give 100%, love and trust God, persevere through all obstacles, take one day at a time, one hour at a time or even one minute at a time. Do whatever it takes to make it through and God promises it will be worth it. Put your heart and soul into God and his strength will pull you through. When big things are weighing you down look at the little things and try to enjoy the journey even if it is bumpy along the way.
    I'm not saying I have an insane amount of courage or anything because I don't but I think I do have a unique perspective on life that Lyme disease has so graciously given me. Always being in pain and feeling bad most days for the last 4 years really taught me what is really important in life and what matters most. In some ways I'm grateful that Lyme has come into my life. It has taught me so many things especially to trust God despite fear. A huge amount of fear can accumulate when you are chronically ill. Just the word 'Chronic' can destroy someone's hope for a normal life. Fear is around every corner so to be able to look beyond the fear is a great accomplishment. It took me a long time to learn that but now that I have I am so much happier. I still have fear but my faith is stronger. courage with a lower case 'c' is subtle and hard to spot but its there and it doesn't matter if its a different kind of courage it is still courage nonetheless.
 


  To end this blog I just wanted to give everyone a little update. This past couple weeks or so has been pretty rough due to trying to switch from IV antibiotics to oral antibiotics. The new oral antibiotic is very strong and has many side effects and if its listed as a side effect, I have it. (We stopped that antibiotic and I do not plan on taking it again) My appetite has been pretty much zero and eating anything makes me feel pretty awful afterwards. Thinking and pain also hasn't been great but its tolerable. December 29th we saw a new Lyme doctor in Houston and she was fantastic! She explained everything so well. She was so cheerful and really listened to what we had to say. She ordered some blood work and will call us when the results come in. Depending on what the results show, my medication will be changed around a bit and hopefully we will begin IVIG infusions once a month to help my immune system recover and do its job better. She also said that she doesn't like to use the word "cure" but she hopes for "remission with very low probability of relapse" after 3 to 6 years of treatment! That's the best prognosis I've ever heard! I know I can fight this horrible disease for 3 to 6 years if that means I could be symptom free for numerous years or even a few decades! This new doctor has revived my hope that there is an end to all this and that there will be remission once again!