What can you do to “catch the magic” when you just really don’t have it in you to make the attempt? Fake it till you make it is a mantra that we have all seemed to have adapted to in this new, chronically awesome, lifestyle. I am going to include some tips to help you get into the holiday spirit in this blog, as well as some of my personal favorite ways to catch the spirit. Use them, share them, adopt them into your holiday traditions. I promise, at some point, you will catch just as much spirit as you need to make your holidays as happy and as bright as ever!Read More
Do you have a special someone in your life who is living with a chronic illness? Let Lyme Warrior help you find the perfect gift! We gathered some of our favorite ideas for the holiday season, and we hope you find the inspiration you need to treat your "chronically awesome" friends and family this season.
- Hot/Cold Face Mask- You can freeze it or heat it in a microwave to help soothe headaches and other facial discomfort. We suggest avoiding purchasing masks that are scented or give of a chemical odor as these can be harmful to the chronically ill. One of our favorites is the plush "Recharging Hot Cold Mask" from www.lymewarrior.us.
- Throw Blankets- When you aren't feeling well, a cozy blanket can bring soothing comfort and warmth. Because many bedding items contain chemicals that can trigger allergy responses, we suggest looking for ones that are chemical, resin, and pesticide free. The 100% Organic Cotton Throw Blanket available from www.nofeathersplease.com meets these criteria.
- Cleaning Service- It becomes increasingly difficult to keep up with housework when you're constantly sick. Contact your local cleaning services to arrange a one-time or reoccurring home cleaning.
- Snow Removal or Yard Maintenance- If you can't afford to pay someone to shovel, plow, or landscape you could also sign up family and friends to take turns helping out.
- Monthly Subscription Box of Goodies- Who doesn't love to get fun packages in the mail? You can sign up for a single month or a reoccurring subscription. A couple of our favorites are:
- Caring Crate- You'll receive 4-5 full size items aimed at improving your mental and physical well-being. Items range from motivational books to essential oils and much more.
- ChronicAlly Box - Every month, you can expect a treasure box full of 3-6 full sized health and beauty products to make your beauty routine possible in a pinch, with little effort. Health products for your body and mind, giving you the ability to unwind.
- Sock It To Me- 2 pairs of funky socks delivered to your door.
- Inspirational Jewelry- A simple message of encouragement can make a difference in someone's day. Some of our favorites are the "Never Give Up Bracelet" from www.lymewarrior.us. Mantraband necklaces and bracelets are available at www.Nordstrom.com.
- Detox and De-Stress gift sets- Many chronic illness warriors have a daily detox game to help purge toxins from their system. Bath salts, charcoal masks, essential oils, soothing natural lotions and soaps, and soft organic cotton robes or towels can bring the spa feeling right to their home. Beauty Counter and L'Bri offer natural, safer beauty care products and Angel Face Botanicals offers a gorgeous Detox gift set with Rockstar bath salts, cleanser, mask, and soap bar. Remember to avoid strong fragrances and products full of chemicals and toxins or ask what sensitivities they have.
- Art Therapy- Something as simple as coloring or crocheting can improve mood and provide stress relief. Choose a craft or hobby suitable to your friend or loved one's abilities. If they have arthritis, maybe colored pencils will be too hard to hold. Try a Pentel Aquash watercolor brush instead! It holds water in its barrel, is light weight, and the gentle sweeping of the brush isn't as hard on joints and muscles. One of our favorite craft stores is www.PaperSource.com because they offer prepackaged kits for crafting- wreaths, flowers, garlands, paper dolls, and more! Each kit lets you know the crafting level required and any additional materials needed like adhesive or scissors.
- Full Body Contoured U-shaped Pillow- We fell in love with this body pillow by BlueStone! Although it's marketed as a pregnancy pillow, it's perfect for people with chronic pain. It helps support the belly, back, and neck while sleeping to help keep proper alignment. So comfy, everyone will want one!
- Essential Oil Diffuser- Did you know the average can of air freshener, scented candle, and plug-in oil warmer can fill your homes with harmful toxic chemicals? That's why chronic illness warriors turn to alternative, natural scents like high quality essential oils. There are many types to choose from, but I find the nebulizer and ultrasonic/humidifying diffusers work the best.
- Greeting cards- It can become isolating when you're confined to your home, so sending a personal note or card is a great way to brighten someone's day. My favorite line of empathy cards comes from www.emilymcdowell.com. It can be difficult to know what to say when "getting better soon" isn't the right fit for the illness. One of her cards reads: "How about the next non-doctor who thinks they can cure you gets smoothered in kale?" Give the gift of laughter this holiday!
- Gift Certificate for massage or Infrared Sauna- Check out your local Groupon listing for deals in your area. Massages and Infrared Saunas are a luxury some people can't afford, but they're so beneficial to healing. Pamper someone today!
We hope we were able to help you with your holiday shopping list! Remember, it's the thought that counts and showing someone you took time to understand their needs during chronic illness means the world to them.
I glance over the dinner spread one last time as I get ready to load my arms up with food and take it upstairs. She’s had a rough day, so this evening the food comes to her. I run down the allergy and reaction list; I mentally tick of nutrient values, tracking complex carbs, proteins and fats. I do this every time. Not because I’m being neurotic but out of necessity - I don’t want to tip the balance and make a down day a worse day. Post dinner it’s a new list, the supplements and vitamins. Then it’s hydrating and asking the same question again and again, “how are you feeling?”
I have my normal everyday tasks. I have a job to maintain, I have a gym schedule and a training schedule, projects I’m working on, shows I want to catch up on. Being a caregiver has become as much a part of my life as everything else. I care about the woman in my life immensely and I believe firmly that being a caregiver is about wanting to improve the quality of her life.
Learning this schedule and routine is not for the faint of heart. There are nights when we are struggling to get blood pressure to balance at 2 a.m. and there are days when she will tank mid-afternoon and finding what’s going to bring her back to slightly balanced becomes a “Where’s Waldo?” game of supplements and tinctures.
Learning the different symptoms can be another challenge altogether. I remember the first night I experienced her depersonalization. It was early on in our coming together and me taking the title of caregiver. She hadn’t been feeling well and as she sank further, she became distant. I initially couldn’t understand what I had done - in my experience this was totally a situation that bodes ill for a relationship! She had warned me it could happen and even as I tried to figure out what would help her I had to keep reminding myself that she cared about me and I hadn't done anything to push her away.
This fight against Lyme is as much my battle as it is hers!
I’m here to help bolster her when she’s struggling. That can be an empowering statement when you realize that fact! Reminding yourself of the key role you play is important in taking care of yourself - it would be far too easy to allow yourself to become resentful or bitter. I thrive knowing that she relies on me. Yes, some days it can feel monotonous, but that’s an important piece too - showing up on the days when you’re tired is most important!
You have to make sure you don’t put your life on hold. That is the number one thing a caregiver must do for themselves. Some things will change, it’s true, but that’s what life is; constant change. But maintaining the things in your life that fulfill you are key for your self-care. It could be reading for an hour, hitting the gym or going for a run; maybe it’s putting on your favorite show and zoning out for forty-five minutes. Whatever it is, keep these things in your life! You have to keep your mind happy and healthy as much as the person you’re caring for.
For me, stepping into this role as caregiver has been more of a lesson in my own self-care. I’m far more aware of my internal workings than I was before. I’m more conscious of my diet, my need for rest and relaxation. When you’re caring for someone else, you realize that they depend on you and that dependence relies on you being happy and healthy. I have my bad days just like anyone else, but I have far less of them since I started taking care of my Lyme Warrior. I make sure I’m getting the things in my life that make me feel fulfilled and energized. Being a caregiver starts with YOU, and from you it then can flow out to care for the people in your life.
She’s doing better most days now. She would argue otherwise but I have watched change happen for her. We are spending more time discussing ideas for the future and less brainstorming what will help her feel better that day; She laughs more and squints in pain less. There is usually some small hiccup during the day, but I’ve become adept at guessing what might help to keep things running smoothly.
Care is defined, as the provision of what is necessary for the health, welfare, maintenance, and protection of someone or something.
This alone should make you feel amazing! Your role is that of a provider, someone that is trusted and relied on. You’re a strong, capable person, who can learn to adapt to new situations. You’re the front line on days when they think they can’t go on, and you’re the support team when they’re fighting on their own. I’ve always been a fan of the Rocky Balboa movies. We caregivers have to remember that Rocky did the fighting, but he had Mick and Adrian in his corner. They both loved Rocky and took care of him so he could fight. She’s the Rocky in my life, I’ll be the Mick in her corner and the Adrian she yells for when she wins this fight!
Battling a chronic illness is hard. It’s draining physically, emotionally and mentally. While I can control most of the external influences, it is very difficult to control the emotional and mental. When you suffer day in and day out with various and sundry symptoms your perspective on life changes. Which, in turn, effects your disposition. That’s why it’s especially important to take care of your mental health as well. I’m not talking about keeping a positive attitude. I’ll be the first person to tell-off someone who’s telling me to “just think positive.” I’m talking about giving your mind and emotions a break. I’m talking about allowing your mind to check out so it’s not focused on absolutely everything, especially the negative. I’m talking about learning a medication technique called concentration meditation.
A short time ago, I attended a Lyme picnic where I listened to the guest speaker, Jordan Fisher Smith, share some of his own personal advice. It wasn’t the typical eat right, take your meds kind of advice, it was really good advice. It was the sort of advice that chronically ill people need to be reminded of from time to time. It was about how we can help ourselves to heal. One way he mentioned was to take care of our whole being. He went way beyond just “positive thinking.” He guided us through a meditation exercise that opened my eyes to my reality. He asked us to imagine ourselves 10 years after Lyme. It was enlightening.
As any chronically ill person is aware, the person we were before we became ill is often difficult to remember. We may see glimpses of that person in the mirror every once in a while, but overall who we are has changed, significantly. That makes it that much harder to imagine ourselves without the illness. So when Smith asked us to visualize ourselves 10 years after Lyme, I scoffed. How could I when I couldn’t even remember what normal was like? I’ve been sick for 16 years, so it was going to take some effort to see myself as a healthy person, free from the restrictions of my illness. But since he was willing to be our guide, I’d give it a try.
After all, there is evidence that meditation can, among other benefits:
-Lower blood pressure
-Lower heart rate
-Promote deeper relaxation
5 steps to concentration meditation:
(where you’re focusing on one thought or image.)
Focus on your breath and being; just take stock. Inhale, exhale-just breathing normally. If it helps you focus, play a nice relaxing soundtrack of meditation music or singing bowls.
(I closed my eyes and focused on the hard wooden bench under my derriere, my feet planted on the ground, the rock beneath my shoe. The damp cold and since we were outside, the birds chittering.) In other words, notice everything.
2. Turn your focus inward
Then turn your focus inward and focus on your thoughts, clear your mind. Visualize your safe place. The one place that you always feel at peace. Think about it, put yourself there and use your senses (taste, touch, sound, smell, sight) the more details the better. These steps can take time to master, so you may need to try it for two or three minutes at a time until you can keep your focus. If stray thoughts enter your mind, simply refocus on creating the image.
(For me, my safe place is a forest; moss claiming the old growth trees, trodden litter fall beneath my feet, a cool breeze caressing my face and the smell of damp earth. In the real world, it’s where I’ve always been able to go to ground myself, to calm my mind and to refill my soul.)
3. Expand on your vision
(Smith guided us to imagine another person in our vision. Ourselves, 10 years after Lyme.)
Imagine yourself ‘after.’ Approach that person. How do you look? Walk? Talk? Act?
4. Not to sound like Yoda, but feel the force
Linger here as long as you can. Have a conversation with yourself if you can take it that far, ask yourself the questions you are afraid to consider. Then, step into that new you. How does it feel?
I didn’t have a conversation, but I did step inside. That feeling, of me taking over the future, healthy, me’s body, well that’s when the tears started to sting the backs of my eyes. Because I could feel it, or rather I couldn’t feel it; I didn’t feel the pain and stiffness and worry and stress. My body moved easily, smoothly, my heart and mind were light and clear. I could feel the force. That’s when I realized that I have not been taking proper care of my whole self. Oh, I was doing everything I could to keep my physical body healthy enough to fight this disease, but I had done almost nothing to make sure that my mind and emotions were taken care of. At that moment, meditation became my new priority.
(Our session took maybe four or five minutes. For the first time, that was long enough.) It takes practice to learn to control your thoughts and calm your mind. Therefore, practice everyday. Try to stay focused on controlling your thoughts and just sit in your safe place for a few minutes. Then try for a minute or so more each time. If you can’t make it into the future you right away, that’s okay. Eventually, you’ll work your way up to visualizing yourself “10 years after.” And once you do, pay very close attention to how it makes you feel. The hope you feel after, the renewed focus and hopefully you’re a little more relaxed.
Let’s face it, chronic illness takes you through one hell of a roller coaster journey. And it adds a weight that can feel like cement blocks dragging you to the bottom of the bay. Having that weight released, even for a short few minutes, is an awakening. That is a feeling that I strive for each time I meditate. Because yeah, now I meditate. I’m cool like that.
The hardest thing to find in life is balance. Even without dealing with a chronic condition, it can be hectic. Throw a chronic illness in the mix and it becomes extremely difficult to have a life that is in harmony. When someone finds themselves dealing with Lyme disease or other chronic conditions, it is a long road of ups and downs. Some days you feel worse than others, and this not knowing how you’re going to feel from one day to the next, becomes a social life killer. I personally have had to cancel plans, get togethers, trips, miss out on special occasions and holiday gatherings because of symptoms that come unplanned.
The question is, how do you balance friends and a social life while suffering from a chronic illness?
Plan for recovery: For me, if I go out with friends or do something that I know is going to be very strenuous and cause stress on my body, I make sure that I plan to have enough recovery time. The next day or 2 or 3, (or sometimes even a week depending on the activity), I have to allow my body to rest. Rest and relaxation is very important when you are suffering with any kind of illness and is very important in order for your body to heal itself. In addition to relaxing, I will also try to do things that help my body recover, such as Epsom salt baths or doing some yoga or meditation, or maybe even getting a massage/energy healing the next day.
Invite them in: If your friends are understanding about your condition, you can invite them to come to you and have them hang out and watch a movie with you, have lunch, etc. If you can’t go out, let them come to you. One friend of mine, who also suffered from Lyme but is now fully recovered, always offers to come drive out to see me and she lives quite a distance away, so it’s always nice to get a visit from her. But then, I would also drive out to see her when I was feeling up to it.
Rest before: When you have more formal events to attend such as a wedding, shower, etc., be sure to give yourself plenty of rest beforehand. Also, try not to do any aggressive treatments/supplements right before the event so that you are not herxing or flaring. It might be a good idea to do an Epsom salt bath the day or night before. I found that it’s always a good idea to give your friends/family a heads up if you are having a bad day so that if you have to leave in the middle of a function they will be more understanding about unpredicted symptoms.
Know your triggers: If certain events and situations aggravate your symptoms, try to prepare for or avoid them. For example, if you have light sensitivities and your friend suggests a movie, suggest another activity that is easier on your body. It’s about the time together, not the activity.
Now, if you’re like me and you are good at hiding how you feel and you are the type of person who pushes themselves even though you know in the back of your mind that it’s probably not a good idea, then I strongly recommend that you refrain yourself from trying to do more than you can handle. I know that it’s easier said than done and sometimes we feel pressured into doing things, but sometimes you have to be selfish and do what is best for you and if that means staying home and resting every once in a while, then that’s ok.
On the other hand, most people wouldn’t even consider getting out of bed if they were experiencing the pain levels that most of us with Lyme disease are experiencing. You don’t know if you can do something until you try. You may have to force yourself but start out slow. I tell myself that it doesn’t matter if I’m lying in bed, or if I’m moving around, the pain is going to be there no matter what. Why should you let it stop you from living your life? I know that this is easier said than done and it’s hard to just ignore the pain, but we have to train our brains to think positively and keep telling ourselves that we are going to conquer this disease. Just because you attempt to engage in normal activities does not mean that you’re having a good day, it just means that you are choosing to be stronger than your illness. You can’t always let it win!
Unfortunately, life is always going to be a balancing act, whether you’re dealing with an illness or not. Try not to worry about losing your friends, because if they are “true” friends they will stick by you. All you can do is try your best and stop worrying about what the rest of the world is going to think.
For more blogs and helpful resources visit us at www.lymewarrior.us.