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 as 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 word 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.
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 audio book, 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.
After all, why stick to the highway when you can take the scenic route and make the best out of the ride along the way. We’re all in this together. You have to remember to treat yourself as though you always need to heal because healing from tick-borne infections is truly a lifestyle.
Steps You Can Take to Keep Your Marriage Strong
Recently, I read an article that stated nearly half of all Americans live with chronic illness of some sort. Astonishingly, over 75% of marriages that are affected by chronic illness end in divorce. Spouses who are caregivers are 6 times more likely to suffer from depression.
It’s here, it’s upon us! The holiday season is now in full swing.
Are you feeling it yet? Discouragement, overwhelm, frustration, defeat?
I wanted to encourage you before you go too far down that road.
I know it all to well! I’ve experienced it, lived it and quite frankly, I’m writing this to remind myself.
Holidays are stressful. There’s so much to do and so many people to please. The Hallmark Channel portrays the perfect Christmas love stories, commercials are reminding us and our children of everything we don’t have that we NEED and those posts on social media showing us perfection are glaring at us in the face every day.
Sometimes we think everyone else has it all together; their homes are perfectly decorated, their children are in every Christmas activity in town and you get to see all of those magnificent pictures coming at you every day on Facebook compounding your guilt.
My first few years of chronic illness with tick-borne diseases were devastating. Not only was I pretty much out of the game we call life but holidays were not going to happen without a miracle.
Here are some of the things we did and maybe they’ll help you too.
1. Completely throw out all expectations.
I couldn’t do anything but lie on the couch or in bed, I was miserable. My body was weak and wracked with pain. My husband and I decided on what was important in order to make our holiday enjoyable and memorable and we literally crossed out the rest of the list. No baking, no homemade gifts, no Christmas cards and no guilt!
2. Give everyone a job.
Now, I’m a bit particular about decorating and especially decorating the tree. During those difficult years I had to give up my type-A, OCD tendencies and allow my children and husband to take over. The lights on the bushes outside were crooked and not exactly like I would have done but they were up. The tree was a bit lopsided with too many ornaments bunched together but decorated the way my children wanted it and trust me, I had to work very hard to enjoy their creativity.
Imagine how wonderful they felt that they could decorate and help mommy out.
3. Order gifts online.
I was not strong enough to walk through the mall, much less a store to go shopping up and down the isles for the perfect gifts. Our Christmas shopping for those years was pretty much done online. Certain things that couldn’t be purchased online were picked up by my husband.
4. Order a holiday meal to go.
Our Christmas meals are always spent at extended family’s but there was 1 year in particular that we couldn’t attend. We ordered a pre-cooked meal from the local grocery store and my husband put it all in the oven to heat. I can’t say it was the most fabulous meal but we were able to keep our tradition, gather around the candle-lit table and enjoy time together celebrating the Savior’s birth.
5. Focus on the real meaning of Christmas.
When you let go of your expectations, other’s expectations for you and the guilt that most likely comes from inside of you; you are able to focus on what’s really important.
Make memories by spending time with your loved ones, have great conversations, and ask your family to help you create a beautiful atmosphere. Play beautiful Christmas or worship music, light a candle or diffuse essential oils and enjoy each other.
My husband always asked me, “what’s the most important thing you have to do today?”
So I would ask you, what’s the most important thing you should do when you’re sick?
When I was really sick during the holidays, I deemed the most important things to be loving my family, resting so I could get well, and worshiping the Lord.
When you let go of everything else you’re truly able to enjoy the busy holiday season. I know it’s still hard, I know the guilt will creep in but honestly my children don’t remember anything about those years except that they had a wonderful Christmas.
Take some time today and make a list of everything you think you have to do for the season, then grab a marker and start crossing off those things that are causing you stress or that are physically not possible. Talk to your family and friends and come up with a doable plan.
Let’s purpose to have a beautiful Christmas no matter how much or how little we’re physically capable of doing.
Memories are made from the time we spend with others.