Mommy Musings

I’m Still Here

Friday, my baby stayed home sick from school. I secretly loved having her home with me again. I made breakfast for us and sat down next to her. When she saw me with my handful of pills she solemnly studied my face and began to count them out on the table. Then under her breath she said, “Mommy, I am so sad for you.” I told her not to be sad because the pills and vitamins help me. She asked if I had to take them all at once and even though I knew she already knew the answer, I said yes and picked out the ones that I take a few times a day. She held up her hands and pointed to her fingers, adding to the pills she had already counted and exclaimed, “So you have to take 24 pills everyday??” I laughed and said “sometimes even more than that… but there are days when my stomach can’t handle it and I just need to take a break, drink my coffee and not think about pills or Lyme.” It was obvious that her new life in Kindergarten had helped her forget last year. I think seeing all those pills again reminded her I still had the disease that she suffered through with me for so many months. As she watched me take my pills I realized I was kind of sad, too. I wondered if these pills would ever really help anything.

First of all, I am not writing this for you to feel sorry for me… because I manage to do enough of that on my own. The purpose of this post is to give a peek “behind the scenes” of a Lymie’s world. Most people only see me on my good days or when I’m pushing through a bad day with a smile on my face. So I think that causes a bit of confusion. I’m sure that there are those who wonder “What’s the big deal?? She looks fine. Is she really sick?” I hope that by describing the bad days, it might help with the understanding and awareness of Lyme Disease. Recently, I had a kind friend tell me that if Ryan hadn’t explained how bad my disease can be, then he would have never known. This friend told me, “You look wonderful and you’re always smiling… you hide it really well.” I think this is very true. Lyme is not a disease that is easily seen. When it rears it’s ugliness and is more obvious on the outside, those are the days that no one sees – or if they do, I hide it exceptionally well.

The cold/flu season is awful, even for a healthy person with a strong immune system. For some reason, this year seems to be much worse than normal. In just a couple of weeks my girls have brought home at least five letters from school warning us that someone in their class has been diagnosed with Strep, Flu, Coxsackie virus and more. For Lyme sufferers and people with a compromised immune system, the cold and flu season is terrifying. When I catch a virus, it knocks me out and takes me forever to recover.

In November, I got a bad cough and sore throat in addition to other cold symptoms and it continued to get worse. I am on a strong antibiotic for Lyme, and even though I’m taking every natural supplement and over the counter medicine known to man, I can’t kick what I think is Mono – which is very common for Lyme sufferers to get. The Epstein Barre levels on my blood tests are consistently off the charts, so it’s something that comes with having such a compromised immune system. (The EB virus causes Mono). There is nothing you can do for Mono other than getting rest and drinking fluids. Most people recover within a few weeks, but for me, that might mean months.

Regardless of the reason, I am sick and everything on my calendar has gone by the wayside. I have had to check out of life for the time being and I can’t stand it. I’m sure I have friends who hear my voicemail or read my text that I’m not going to make it (yet again) and think that I’m just avoiding them or using my disease as an excuse to get out of doing things. I guarantee you that being constantly sick and not having a social life is NOT my idea of a good time. Believe me. I may be somewhat of an introvert but this is not fun. The world of chronic disease is a very lonely world to live in. I want you to know how difficult and gut wrenching it is for me to make the “cancellation” calls/emails/texts. I hate doing it just as much as you probably hate to receive them. So, please know this –

I want to be there with you. I want to be healthy. I want to live… and I don’t want my friends to give up on me.

Here is what I have had to miss/cancel/reschedule the past couple of weeks due to my illness:

the wedding of a dear friend

a fun night out with girlfriends

several volunteering responsibilities at the girls school and at our church bookstore

my writing group Friday morning (also b/c Cammie was sick)

double date last night

two different Christmas get-togethers with friends

…those are the main ones. I didn’t list the “little things” that I have been unable to do like going to the store and other daily activities like making meals and cleaning the house. Besides dropping Cammie off at her dance class on Tuesday while I stayed in the car and waited for her, I have not stepped outside my home since last Sunday. Yes, that is a week. During that time I doubled up on my supplements, tirelessly researched how to boost my immune system and slept. The worst part is, sleeping doesn’t bring the refreshment and wellness that sleep brings for healthy people. When I wake from 8+ hours of sleep, I can barely stand up and I feel like I’ve been drugged. Some days take several hours for me just to work up enough energy to get into the shower. After getting ready, I am worn out and need to rest for a while. Then, if I’ve taken my 3-4,000 mg of Vitamin C and other 20+ pills, I might be able to do a load of laundry, clean a room, finish a project or write. But lately, I can barely do that without collapsing from fatigue or pain. It has also been impossible to sleep well with this consistent cough and congestion, so good sleep is rare. When I finally pass out, I wake up and repeat.

I want my friends and family to know that a cold or the flu might mean something different for me. Please be patient and know that it is truly not personal if I can’t make it to your shindig. If I haven’t reached out to you in awhile, it’s not because I don’t care, it’s because I am focused on getting well. I don’t want to be forgotten. I don’t want my personal struggles to get in the way of our relationship and I am so sorry if it has caused distance between us.

I don’t want my illness to define me.

I am still here.

I am still me.

… I am more than Lyme disease.

0 thoughts on “I’m Still Here

  1. I can relate to your post from an opposite perspective. We are trying to figure out Adam’s new normal, and trying to find what will work to keep him healthy, using as many natural products as necessary. It’s no fun forming an assembly line of meds for him to take. There are a lot of days where he feels pretty horrible but needs to power through to get to school. I have to smile despite my heart breaking in a million different pieces. We have to be at Cardinal Glennon a few days a week now, until we figure out treatment. What a long exhausting process. I am sorry you have to live with this.

  2. From Amanda Mitchell via FaceBook –
    Thank you for the peek behind the scenes. I’m sure you’ve heard it before, but I didn’t realize. If there’s anything I can do, I’d be more than happy to.

  3. I want you to know that as I sat here in my small house, still feeling poorly from a recent infection, I looked up chronic illness and cabin fever. Your blog came up, and I was so relieved to read it, although I am sorry you, too, suffer like me. I have refractory Interstitial Cystitis, Fibromyalgia, Chronic Fatigue Syndrome, IBS, Chronic Pain with a morphine pump & other smaller ailments that are the result of a failing immune system, and I ALWAYS get sick. I always cancel on my loved ones. I always can’t do what my mind says I can do (my body disagrees). I love and miss my family. I LOOK okay, but that is almost always because I stay hidden on my “bad days”, and there are alot. It does sound like a pity party, unless it is your own reality. I ma a registered nurse, but I can no longer work. At least I got through college and got that coveted license. I struggle for self-worth and meaning, especially as I have become a greater and greater burden to my husband, friends (what few I have left) and family. I shared your post-“I’m Still Here” with these loved ones who cannot really understand. I made a copy for myself. I think you said just what I feel inside. Thanks for the post. -Sincerely-Rhonda Maddux, Texas

    1. Thank you for sharing your heart. You don’t know how much it means to me. For the last month or so I have been discouraged about continuing to write about my disease but your comment has inspired me to continue. THIS is why I write about what I go through. It is my hope that it encourages or explains chronic illness for those going through it or those who need to understand what their loved ones have to overcome on a daily basis. I am so glad my words could bring comfort to you and you could relate. You are NOT alone. Thank you again for leaving a comment. It truly blessed me. I am so sorry that you have to go through chronic pain and constant illness. You are in my prayers.

      1. Thanks for your uplifting response, DeAnne. Today has been especially difficult. The medication that was working pretty good in my pump is not currently available from the manufacturer. I was switched to Dilaudid, which has made me feel so much worse. I was also taking daily dexamphetamine (ADHD med) to help me stay awake, and now my medicare wants a ridiculous copay we simply can’t afford. I cried and cried and told my husband I wanted to die ( I don’t believe in sucide; I fear the Lord, but I think sometimes those people in our boat can’t help but feel this way.) I went back and read your bog again, this time to my husband, who is trying desperately to understand. Again, I gathered some inner strentgh from your words. I feel I bring what you said into a tiny little space somewhere inside of me that God knows about, abd I try to hang on. I know that as sure as it gets bad, it will get better again. Please keep writing. I, too, was (maybe still am?) a writer. I have written for our local paper in the past, but I put all that aside. I feel so selfish, because I can’t help but think about me. My grown daughter has made a career in the Air Force (thank God), but I have a 19 year old son with Crohn’s Disease, and I think maybe I am NOT the best example for him to follow when learning to live with a chronic illness. Thank God, his was caught early. He can still have a life. You sound so young, with little ones in school. I pray peace and strength enough to get them raised up and to be able to make it on their own. I know at this point, I just ask God to let me see my kids make it on their own, and know that they would be okay without me. It’s trusting God, which is hard to do and understand. But anyway, keep writing! Your words uplift people that you don’t even know about. Many will read them and maybe not respond, but they know there are many of us like this. They have another reason to hang on and not give up. With love and prayers- Rhonda Maddux, Texas

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