Do you ever feel like living with a chronic illness is a long drawn out journey with no end in sight? When there’s no purpose it’s hard to find joy to keep going. Physical pain and difficult circumstances keep us focused on ourselves and oftentimes we miss the scenery. To throw in a visual I want to suggest that taking the scenic route on your journey may just open up your eyes to unexpected blessings.
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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 can’t figure out what that even means or what you’re supposed to do about it. It’s overwhelming to figure out which protocol to follow, which vitamins and minerals you need and whether or not your body will even absorb them.
I’ve been there! I was so incredibly sick and there were many days 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, when I was finally diagnosed, 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. Even though my Lyme test came back without the CDC’s 5 required positive bands, she knew that having even one positive band meant I had the infection.
Getting a diagnosis after two long years of illness was only the beginning of my journey. Since then I’ve had huge gains towards my healing. I shared my story here.
Most recently, I’m dealing with a relapsed in Bartonella and Chronic Reactivated Epstein Barr Virus.
Living with a chronic illness is a journey of good days and bad, progress and sometimes relapse.
The Day to Day With Chronic Illness
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.
When I don’t feel well I can become like a rebellious child. 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. Decisions? Forget it! 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 the places I want to go to. 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 you’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.
We need to rule out MS
When I heard the words from my 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 (multiple sclerosis)? 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 need 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!”
The Scenic Route
I remember as a child going on family trips where my dad would purposefully choose to take the scenic route. It was a bit out of the way. Sometimes there weren’t any rest stops along the way for bathroom breaks. Often-times we kids would be in the back seat complaining that it was taking way too long to get there. But then, he would drive off the main road and onto the ramp that brought us to the scenic view. Dad would park the car and we would all get out with the expectation of seeing an amazing and beautiful view. The gorgeous scenery never failed and was always worth the long trip.
Choosing to Think Differently
I’ve learned that my thoughts have an effect on my well-being. 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.
Changes I’m Making
I pulled out my dusty gratitude journal, the one I started in 2014 and every once in awhile 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)
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.Therefore encourage one another and build one another up, just as you are doing. 1 Thessalonians 5:11 #Encouragement #lymedisease Click To Tweet
Finding Help and Support
Shortly after my visit with the doctor, my good friend felt God leading her 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.Healing from Lyme becomes a lifestyle and the choices you make become your journey. #healingfromLyme #lymedisease Click To Tweet
Trusting God Enough to Take the Scenic Route
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.
As you think about your own chronic illness journey, consider taking the scenic route. Making the best of each day. Give thanks and keep a gratitude journal. Find supportive people to do life with.
Finally, remember to look for God’s hand in the little things. You just might find unexpected blessings as you take the scenic route on your chronic illness journey. Taking the scenic route means being aware and looking for the beauty that God has for you.