By Rebecca Bressler
Recently my husband was involved in a terrible car accident and hospitalized for a few days. Through the course of these new events, I’ve learned a lot about what I can and can’t handle. Once everybody saw him and we knew he was going to be alright a lot of the attention turned on me – “How are you going to manage this without help?” “Don’t forget to eat!” “Are you taking your meds?” “You have to take care of yourself!” Of course, I already was but I was used to having him there to help me.
I quickly realized, I’ve got this! We’ve got this! As Lymies and Spoonies, we all have had the unfortunate turn of events where we’ve become our own advocates and at times, our own doctors. We’ve gone through some tough things and we have an arsenal of supplies and knowledge to get us through even when it seems we can’t. I’ve learned you need to be prepared for anything. Imagine your worst day and the things that helped you get through it. A blanket, certain clothes, a heating pad, lemon water, and anything else that helps you.
In case you’re new to the Lyme world or any other chronic illness here are some of my must haves when I leave the house, go on a trip, or need to be my own caregiver.
- Bag It – You’ll need a big purse/bag/rolling bag depending on your need. I have a large purse right now but have definitely had a small duffle bag before to help. It might seem a pest to take with you but trust me, it will help you when you need it! Find a cute one or get multiple if you want. If you’re a kid with Lyme, get a cool looking backpack and don’t feel embarrassed! Use stickers and /or patches to make it your own! Of course this always includes the normal “supplies”- sunglasses, chapstick, glasses, contact case with solution, etc.
- Hydrate! – My 32oz water bottle. This is a must! We need to keep hydrated and sometimes dehydration can sneak up faster than we realize because of all the other symptoms we may be experiencing that day. Sometimes I add in some lemon juice. Lemon juice is a great help for any abdominal pain. As always, make sure the bottle is BPA free!
- Snacks! – I always keep a fruit snack or gluten free protein bar in my purse for just in case situations but if I’m traveling I’ll need something more. Most airports don’t have a lot of gluten free, dairy free options and my body typically doesn’t enjoy meat when I’m having a bad day. I’ll bring veggies, a sandwich and an empty water bottle. If I’m lucky and find something different at the airport, then I might get that but I always know I have a back-up and I don’t have to worry.
- Pill box – This is super important because we all have a crazy amount of medicine, supplements, and extras that we have to take on a daily basis and need to take at specific times. If we miss a dose, we’ll feel it! There are a ton of different boxes out there. I have a big fancy pill box that I love!! I have 4 slots a day and they’re separate for each day. It’s called a medminder and it’s a lifesaver. Also, makes it easier to travel. Look it up on Amazon (it’s cheaper there!).
- Essential oils – Now this was something that took me awhile to get on the bandwagon with because I was definitely one of those people who thought, “how is an oil gonna help when medicine can’t?” Trust me, it helps! It makes a HUGE difference! I always bring peppermint oil for my migraines and if I need a little dose of cooling essence on the back of my neck, frankincense for nausea, lemon in case I didn’t put any in my water when I left, and tea tree oil for my lymph nodes on the back of my neck. There are many different kinds of oils to bring and if I’m going on a trip I might add some more but those are my go to. There are plenty of others out there to choose from, just make sure it’s a reputable source.
- Change of clothes – Now this one is only for certain situations. If I’m going to have a day of travel, like going to my LLMD which is 2 hours away, or going on a plane and have a long day ahead I will bring a change of clothes. Reason being is my body changes drastically with how I’m feeling. Sometimes I’m freezing wherever I am and others, I’m boiling. Living in Northern California it’s hot in the summer, like super hot out! My usual wear is flip-flops, shorts, and a short sleeve shirt. That’s not conducive to air conditioning so I’ll need a sweater. If I’m going to a doctor’s appointment or treatment center, then I’ll most likely need more comfortable clothes that are baggy because of pain.
- Herbs & CBD – Now this can be controversial depending on which State you live in. Being in California CBD (cannabinoids) & Medical Marijuana are not a big deal anymore and the benefits have been proven to help drastically with pain and neurological issues. If you are in a state where they haven’t legalized medical marijuana yet number one, I’m sorry, but number two you can still get CBD oil! If you go through an online company you can get it delivered to your home and enjoy the legal (emphasis on legal) anti-inflammatory benefits with no psychoactive properties.
- Sunglasses – A lot of us can easily get sensory overload. What this means is that suddenly lights, sounds, any sort of stimulus can become too much. If you’re at home you can always go lay down in bed with the lights off for a bit to reset but when you’re out and about it’s hard to find relief. Being able to put on a pair of sunglasses, even inside, can make a huge difference and help beyond belief. That migraine may not progress as quickly as it usually does and you might find yourself able to talk again. Don’t worry about any of those stares from people who think you’re just being cool, you’re taking care of yourself and who cares about them!
- Notepad and pen – Now of course you can use your phone for this but there are a lot of times that I can’t look at any screens. I’ve been having seizures or I can feel my threshold is low and I’m neuro-crashing. This is when a small pocket notebook comes in handy. I can use it to write appointments down or ideas I don’t want to forget. Get a fun pen to make it your own and a bit more exciting and you’re ready for some serious note taking!
- Medical Documentation – Last but not least, a doctor’s note. This is for the very worst case scenario days. You have a seizure in public, you pass out, or something happens and you have to go to the hospital. Having a note from your doctor stating your diagnosis can help. Personally, I’ve found in California that the general population doesn’t know anything about Lyme. They don’t understand that our systems are severely weakened and we can’t take normal medication for emergencies i.e. steroids. My doctor wrote me a note to keep with me stating that I have a very sensitive system and to not give me any medications on the list that she added to the note. I would suggest asking your LLMD to write one similar. No steroids, no flu shots, etc. Along with their contact information. This will give you that extra peace of mind and security.
Of course every situation is different and every case of Lyme is different. This list can change and fluctuate with the course of my illness. Sometimes a wheelchair or cane is added. Sometimes a face mask (I would recommend vogmask, not too expensive and high quality). Sometimes even leaving the house isn’t feasible.
The biggest thing to take away from this list is to minimize the worry, be prepared. When you’re out and about doing things you need to get done you want to be as comfortable as you can be. Having an arsenal of tools to get you through a bad day can make a world of difference. Sometimes you might need some extra help and that is OKAY! Never let anybody make you feel different! A lot of people can’t understand the intricacies of a disease and treatment like this. If you’re having a bad day and need a moment – stop for a second, close your eyes, take a slow deep breath and say to yourself, “I can do this!”