Do you ever feel like living with a chronic illness is a long drawn out journey with no end in sight? You feel like going another mile is just way too overwhelming and you’re so focused on your pain that you can’t look around to view the scenery.
Are you struggling to find a diagnosis or worse yet, to find anyone who will believe you? Maybe you’ve been told you have late-stage Lyme Disease and co-infections but you’re so sick that you’re struggling to figure out what that even means or what you’re supposed to do about it. You’re faced with which protocol to follow, which vitamins and minerals you’re deficient in and wondering if your body will even absorb them?
I’ve been there! I was so incredibly sick, I honestly thought I was dying. I tried so hard on my own, even with my cognitive impairment, to figure out what I was supposed to do. Thankfully, at the time a doctor at my primary care practice had an understanding of Lyme disease and co-infections and believed me when I told her how sick I was. When my Lyme test came back without the 5 positive CDC required bands she knew that even a few bands meant I had the infection.
This was only the beginning of my journey and since then I’ve had huge gains towards my healing. I shared my early story here on this blog and I’ve shared bits and pieces of my journey over the past 2 years. Recently, I was upfront about some challenges I’m having and how I’ve relapsed with Bartonella and Epstein Barr Virus.
Living with any chronic illness is a journey of good days and bad, progress and sometimes relapse.
Most days I do just fine, I make healthy meals, remember my supplements and take my homeopathic remedies. Other days, days like today, I just want to crawl back in bed. I don’t want to use up my limited energy trying to get through my daily schedule. The school year is even more difficult with homeschooling, dropping kids off and picking them up, preparing food and the many other tasks that need immediate attention.
I can become like a rebellious child when I don’t feel well. I don’t want to remember to take my supplements and while I’ve become a pro at swallowing a handful at a time I don’t want to. I don’t want to make decisions today, not even about what to make for dinner. And my future, well, there are days when I don’t even want to think about what it might hold for me because when I don’t feel well, I worry that I won’t get over this.
On the good days, Oh, I love thinking about the future! I find myself dreaming about all the things I want to do and places I want to go. I create a massive to-do list and I literally wear myself out trying to catch up on all that hasn’t been done. I make plans with friends, I go out more with my kids and I even get back to exercising.
My life can be one crazy adventure of ups and downs, feeling great and then feeling miserable, feeling positive and then feeling like my whole world is falling apart. Honestly, it can get kind of exhausting. Do you ever feel that way? Would it make you feel better to know that we’re not alone? I get to hear from many of you and I know that you’re going through this too. Some of you haven’t had positive gains yet, you’ve run out of money, you may have lost everything, you can’t see the light at the end of the tunnel and so your discouragement is mounting!
May I remind you that our future is in God’s hands! It’s so easy to get on that “woes me” bandwagon. If we’re not careful we can spiral into depression over our physical limitations. We can grow weary and bitter.
When I heard those words from the doctor a month ago, “We need to rule out MS”, my brain immediately went to the negative. “Oh no, what if I really do have MS? What am I going to do? What if I never get better? What if everyone gets annoyed with me if I’m having to rely on them for help? What kind of treatment will I have to have?” Then my brain switched gears and I remembered – “It’s not MS, I know it’s neuro-Lyme, it’s often misdiagnosed, I’m going to be fine, I’ve already done it before!”
My well-being could go downhill fast with those kinds of thoughts creeping in. So, instead of listening to the negativity, I’ve chosen to turn this into “just another journey” on the road to lasting recovery and I’ve decided to take the scenic route so to speak.
Making the Best of It
I pulled out my dusty gratitude journal, the one I started in 2014 and every once in a while find sitting under a pile of books. It reminds me that I should write down a few things I’m grateful for. I’ve read about the benefits of keeping a gratitude journal and I think it would be worthwhile to once again list those things I’m grateful for each day, I know they far outweigh my complaints section.
I started doing some Insta-stories on Instagram because after all, sharing what I’m eating is just way more fun than sitting down to a plate of healthy food right? At least this way I’ll take the time to make it pretty and I might possibly pull out one of my special “girlfriend” plates from the china hutch. Those are the beautiful plates I save for special times with my girls or my sweet friends who come to visit.
I’ve been listening to the audiobook, The Wahls Protocol* by Terry Wahls. It’s fascinating and I personally think everyone should read or listen to this book even if you don’t have MS (Multiple Sclerosis). She gives a fantastic description of autoimmune disease and what happens at the cellular level regardless of what kind of autoimmune disease you have. She even mentions Lyme disease and how many Lyme sufferers are first misdiagnosed with MS. (*Affiliate Link)Therefore encourage one another and build one another up, just as you are doing. 1… Click To Tweet
Shortly after my visit with the doctor, God put it on the heart of a good friend to contact me, which is always a huge blessing. She’s a very experienced health professional and Naturopathic Doctor. She gives me perspective, infuses me with a little grace and reminds me of God’s love for me. She steers me in the right direction and helps me choose the supplements I should take so I’m not wasting money. She’s the one who convinced me, a long time ago, to look to food for my nutritional needs and then supplement when necessary.
I started a blog prayer journal where I’m writing in each person who contacts me and shares their experience with Lyme. I’m going to pray for those of you I meet either in person or online.
After listening to The Chronic Lyme Disease Summit2, I recognize that my stressful lifestyle, my type A personality, and my need to help everyone else at the expense of my own health, has contributed to my relapse.Healing from Lyme becomes a lifestyle and the choices you make become your journey.… Click To Tweet
Some days it takes a lot of work for me to control my thoughts and work on being positive but it’s so vitally important for healing. It takes, even more, work for me to incorporate times of rest and relaxation. I am certain the work I’m doing to change my lifestyle and my thoughts will be worth it and I know that it will make this journey much more pleasant.