Chronic Illness is something a lot of people don’t fully understand. The word chronic means the symptoms are long lasting and persistent. Not only is there a variety of illnesses out there, there’s hundreds of symptoms. That’s right, hundreds. Lupus, Crohn’s disease, Lyme disease, RA, Addison’s, Parkinson’s, and more. Irritability, muscle aches, joint pain, gastrointestinal problems, rashes, sun sensitivity, headaches, fever, heart palpitations, dry eyes, the list goes on an on. And never ever exclude mental disorders like anxiety and depression as those can cause many of the same symptoms and can develop because of an existing condition. Many of these chronic illnesses run in my family, most commonly Lupus along with some others that aren’t listed above. My grandmother has been living with Lupus for almost forty years and recently I have been exhibiting some symptoms as well. Chronic Illnesses aren’t diagnosed easily so I do not yet have a long tearful story about my diagnosis and all that jazz, but I do have some helpful tips for all the Spoonies out there. And before I go any further, if your not familiar with the The Spoon Theory please refer to the link so you don’t spend the rest of this post thinking I’m a kook.
Most everyone with a Chronic Illness Ive met or read about has a survival kit. A list of things they keep on hand for “flare” days. Most of the time its usually the same stuff:
Heating pads, ice packs, muscle salves,ibuprofen, ginger ale and things of that nature. Me, I like my body pillow and heating blanket. My grandmother has a chair that she claims during her flares. She dons the pajama pants and fluffy socks and curls up in that old recliner and vegges out until she feels somewhat normal again.
Aside from the typical kit essentials, I’ve personally found a few things that I think all Spoonies should know about if they don’t already.
First, I want to talk about my foam roller. You heard right, I own a foam roller. You know that weird thing you see fitness junkies and gym rats carrying around. Its round, made of foam and the best 45 bucks I’ve ever spent. I recently went to a sports medicine doctor for a problem I had with my knee and hip from cheering in high school and college. My doctor made me buy one for the physical therapy homework I was assigned. After I was released the foam roller just sat in the corner behind my television for months taking up space. One day, my back hurt beyond belief and I had tried everything else I knew to do so I thought to myself, “what’s the harm?” So I tossed the roller on the floor and got to rolling my upper back and shoulders and boy did it hurt! But in a good way. The way foam rollers work is they apply pressure to help aid your muscles in recovery. Sore muscles are tight and rigid, foam rolling helps the muscles become elastic and healthy. This of course didn’t help cure my back pain, but it did help me cope and keep it under control. There are various methods you can use and you can roll just about every part of your aching body. I roll my feet, calves, quads, back and neck as those are the areas that hurt the most. Just be sure to talk to your doctor first, he may not recommend it if your body is abnormally tender and brittle like my grandmother. In stead she uses this muscle massager that is much more gentle and easier for her to use. I like the foam roller for two reasons:
A. I already owned it
B. I’m a gym rat myself, or I try to be, and is great for sore muscles, not just achy ones.
I’m prone to stomach ulcers so taking loads of medications for pain management isn’t ideal for me; being fairly active and healthy helps keep my pain to a minimum, and it also keeps my moral up which is something I find detrimental. Being isolated by pain and illness is depressing and can lead to depression and other mental health issues. Not everyone has a support system, and although I have phenomenal support, sometimes I just feel like no one understands. I hurt all day every day, my roommate the makeup artist showed me how to cover the bags under my eyes and use my makeup to make me look more awake and alive so people at school wouldn’t ask me every day if I was okay. Because, no, I’m not okay, I have no idea what’s wrong, I hurt all the time for no reason, I’m tired and nauseous so don’t touch me, don’t even look at me! I have those days too, all us Spoonies do, but I refuse to let whatever this is run my life. Being able to stretch and move at the gym keeps my mind healthy because it helps me feel normal. No I can’t cheer any more, but I can go get on the bike at the gym and pedal away while I watch my guy friends compete with the barbels
My sports medicine doctor gave me a list of do’s and don’ts for the gym so I can still go with my friends and participate. Between remaining as active as possible and using the foam roller religiously I am proud to say I shelved my pain medication and only use over the counter meds when needed. I’m very careful and never every push myself too far. I still only have twelve spoons, I’ve just gotten better at managing them.
I’ll go weeks sometimes without flares. Days where I feel normal—those are the most dangerous days. I allow myself to participate in more activities instead of spending the day on the couch playing video games and almost always when a flare follows its ten times worse than normal. Pace yourself! On a good day, something as simple as taking down the Christmas tree and all the decorations can lay you in bed for three days. Also, don’t over indulge. It’s so easy to ever eat on a good day, but our sensitive digestive systems will hate up sooner or later. I’m to the point where I can’t tell the difference between hunger and nausea so I eat the same safe foods all day every day. I find that only buying foods I know I can eat helps with the indulging on good days. I like vegetarian and vegan snacks—they tend to be dairy and gluten free because it’s easier on digestion.
The last thing I want to share is my experience with essential oils. As I said before, I’m not a fan of medication because of the havoc it wreaks on my stomach, my grandmother is the same way. In high school I was quite the horse fanatic and used all these natural herbs on the horses when they got sick or stressed. I had never used them on myself before but I thought, what’s the harm? I had all of this research, I was a master at mixing them and knew all different ways to use them, so why not? My grandmother thought it was a great idea so we got online to my favorite herbal website and ordered the human line of herbs and essential oils for ourselves.
There are thousands of different concoctions, brands and blends to choose from. I keep to the basics so I can dilute them myself. The smell is often very strong and bothers me sometimes. Simple oils such as peppermint, lavender and lemon can be more beneficial than any proprietary blend you can buy. Lavender is calming, peppermint helps nausea and lemon aids digestion. There are others, lemon, black pepper, Rosemary, myrrh and oregano. If your really into herbs and oils you can try Bach flower remedies or even grow your own and learn to boil them down into exactly what you need. It’s a fun and beneficial hobby, I’ve found certain ones that help with pain management, depression and even shaking. Just be sure to do your research and talk to your doctor, we find them extremely beneficial but they’re not for everyone. I keep peppermint in my ‘survival kit’ for nausea and sudden anxiety attacks during travel.
Something else that I find helps nausea are lollipops. I like DumDum’s. Don’t ask me why but sometimes something as simple as a sucker does the trick. Nausea, for me, accompanies back pain so it’s something I deal with everyday. I keep sour candies around as well, I’ve always been told your body can’t handle the feeling of nausea and the bitterness of sour candy at the same time. This is a hit and miss for me, so I stick to the DumDum’s most of the time. Also, vitamin water is good to keep around, or Gatorade. Drinking lots of water is very crucial to any illness, chronic or not, and a healthy lifestyle, but during bouts of nausea a little flavor and electrolytes hit the spot. Also, my grandma really likes Strawberry Keefer. You can buy it at any grocery store and it’s wonderful for heartburn, indigestion and sometimes nausea. Be prepared, it’s essentially buttermilk so it has an awful texture and takes some getting used to but it’s great to keep around for GURDS and other illnesses where tummy issues are an everyday struggle.
I know how frustrating battling chronic anything is. I’ve only been dealing with doctors for a few months, my grandma has been dealing with it for over two decades. I’ve watched her rise and fall, I’ve sat with her in the hospital, I’ve even ripped Cheetos out of her hands because I know they’ll make her sick. I honestly think that if your alive and making it, your doing better than you think. Maybe these tips will help you, maybe you already know or do these things, maybe you just like to read blog posts about random illness tips but aren’t actually sick. What ever the reason, just know that your awesome. Anyone who can live day to day battling the world on the outside and their bodies on the inside deserves a medal.
What’s in your survival kit? What sort of things do you do to help manage your symptoms?