Ten Real Life Struggles of Having a Chronic Illness

Having a chronic illness is like having a full-time job.  But a lot of healthy people just don’t understand what it’s like.  So, read the following list of real life struggles of having a chronic illness and you’ll be able to understand a chronic just a little better.

1. Being a flake.

flakey friend

Me:  Hey, so I know I said I could hang out this weekend, but actually I’m not feeling so good so I’ll have to cancel.

Friend:  Oh, okay.  That’s fine!  We can totally do it another time.  I’ll call you.

*never calls*  *end of another “friendship”*

Having friends is difficult to do when you have a chronic illness.  We never know when we’re going to feel good, or better, so making and keeping plans is hard to do.  And if you cancel plans enough times, people stop making them with you.  A chronic will often get sidelined, as they sit in their house and focus on survival and recovery, we often get forgotten about.  It’s tough to be always dropping the ball, never being able to be there for people when they need us.  It’s hard letting people down all the time, and sometimes it’s just easier not to have friends because then you can’t let them down.

2. People giving you food. . . That you can’t eat.

gluten free birthday cake

Friend:  I know you’ve been having a hard time lately, so I bought you your favorite candy bar.

Me: Thanks. . . I can’t eat sugar. . .

Friend:  I want to make you a meal.  I was thinking of lasagna?

Me:  That’s so great except I can’t really do all that dairy. . . or white flour. . . or you know, fat.  So. . .

I appreciate the gesture, I do.  It makes me really happy that someone went out of their way to cook/bake something that they thought would brighten my day.  :)  But if they just went a liiiiittle farther out of their way, they could find out what I can and cannot eat.  Then not only would I have the appreciation for the gesture, but I would also get to enjoy the food!  :)

I’ve found it’s just a lot easier to accept whatever someone gives me, and then either throw it away or just ‘re-gift’ it to someone else.

3.  Being called ‘lazy’ and ‘out of shape’.

chronic illness cat lazy

Some people don’t understand a chronic illness.  I’ve been called lazy, couch potato, out of shape, the laziest person alive, along with other comments such as “do you ever leave the house”, “do you ever leave the couch”, “that much sleep canNOT be good for you.”

I don’t think I’m lazy.  I don’t exercise a lot because my chronic pain intensifies when I do.  And I sometimes skip out on an event because I know I’ll have to leave early and I don’t want to make the people I drive with angry.  And I always have other people open things because twisting and gripping can really hurt.

I have a chronic illness.  I often do not feel well.  I live with what feels like a mild and sometimes not-so-mild flu.  And I have chronic pain, in all of my joints, all of the time. So really, if I do anything besides lay in bed all day, I’m the exact opposite of lazy.  If I was lazy, I could use my illness as an excuse and just stay at home and mooch off my parents.  But I don’t.  I work two jobs and I’m taking to college classes.  That’s a lot.

4. Being really picky about bathrooms.

bathroom

Okay, so not to be too gross, but sometimes a chronic illness can involve certain digestive problems.  Which means we may spend a little more time in the bathroom than most people do.  Which makes us very picky about bathrooms.

On campus, I know where all the good bathrooms are.  And I will walk further to pass up on the ones I don’t like. I know which ones always smell, which ones have long lines, etc.

Not only that, but the bathroom is like a little escape zone.  If I need a break from socialization or focusing, I’ll disappear into the bathroom. If I need to take my pills and I don’t feel comfortable in the setting I’m in, I’ll slip into the bathroom and take them there.

So basically, I’m a bathroom snob.  It must smell nice, look clean, have wide stalls (I get claustrophobic), a counter to help with pill taking, a clean mirror, soft lighting (fluorescent lighting makes me pale and sickly), a fan or music, lots of stalls, and lots of sinks.

And let me tell you, bathroom time is SACRED.  Having someone knock on the door or talk to you while you are in the bathroom is violating the sacredness of the restroom.  Whatever I’m doing in there, if I’m using the toilet or just sitting on the floor being alone; it’s my time and it cannot should not ever ever ever be interrupted.

One more thing about bathrooms: Chronics do not like the social norm of going in groups.  We like to be alone.  Because it’s awkward and embarrassing if we end up taking longer and we know our friend is standing out there waiting.  Or if we’re retreating to the bathroom to be alone, we obviously don’t want someone tagging along, because then we wouldn’t be alone.

5. People playing down your illness.

chronic illness cat miracle cure

It really gets on my nerves when people downplay my illness.  And there’s a couple ways that happens.  Well-meaning people will compare my chronic illness to having a flu for a few days.  I realize it’s an attempt at empathy, but it fails to accomplish that.  Having a flu for a few days is nothing in comparison to having a ‘flu’ for six years.  Not to mention that a flu generally has two to three symptoms.  I’ve dealt with a lot more symptoms at a much more severe scale.  And I’ve known other people with this illness who have even worse symptoms than I do; like seriously, Lymies go to the hospital a LOT.

When well-meaning people give me ‘miracle cure’ advice.  There is no miracle cure for an illness as complicated as Lyme disease.  And by assuming I would have missed something so simple, you’re claiming to know a lot more about my disease than I do.  It’s basically calling me dumb and my doctor(s) dumb.

Lyme disease is a complicated illness.  It has both physical and psychological symptoms.  It attacks every system of the body. It can get in the nervous system and cause severe pain and seizures.  It can make you forget how to swallow, how to walk; it can steal your vision and hearing.  It can interrupt your thoughts with graphic, scary images (a symptom called ‘intrusive thoughts’).  It can disrupt your emotional well-being, causing you to be depressed over nothing or to blow your top over nothing.  That’s called “lyme rage”, and it’s a pretty scary thing.  Lymies have smashed car windows for getting cut off, thrown their dishes across a restaurant because the food was cold.  It’s something that cannot be controlled.  It can cause depersonalization, causing you to lose touch with reality, wandering around as if you’re in a daze.  Lyme disease is not a simple illness.  A lot of Lymies commit suicide to escape the pain, social stigma, and mental agony.  A miracle cure is not going to fix that.

And Lyme disease is not the only complicated illness.  Most chronic illnesses involve a lot more inconvenience than just popping a couple pills a day.  It involves managing a diet, exercise, Doctor’s appointments, medical bills, symptoms.  It’s not just a word typed in your medical file; a chronic illness can seriously affect your life in ways that are just not simple. 

6. Small Talk

awkward small talk

The first question people generally ask in small talk is the classic, “How are you?”  This particular question poses a dilemma for chronics. Do we answer honestly?  “Oh I’m fine.  I just spent the entire day trying not to throw up and I’ve had a migraine for three days. . . How about you?”  But to answer with a simple “I’m fine” feels like a lie.  And some of us have a real hard time with dishonesty.

But if we answer honestly it puts a depressing tone on the conversation.  Like when I talk about my chronic joint pain, the pity look flashes across their faces.  Even if I’m being positive about it and am relatively happy, hearing that I’m in pain makes other people uncomfortable.

And then there’s just small talk in general.  It involves going back and forth about their jobs, their hobbies, their love life, their vacations.  But a lot of people with a chronic illness, (I’m referring to Lymies here) have a substandard quality of life.  We don’t feel like going out, or we can’t.  Our hobbies involve filling our pill boxes and watching re-runs of Monk.  Our job is to survive.  So when people ask, “what have you been up to lately?”  There’s an awkward pause as we try to come up with something other than lying on the couch all day.  Typically I just let the other person talk, because people like talking about themselves and it takes the pressure off of me to come up with something interesting.

7. Holidays

sad holiday

Holidays involve a lot of small talk.  They are also loud, and busy, and most of them are during the cold time of year.  Long-distance family members come by and they want to know everything about you.  “How’s the Lyme stuff going on?”  Because Christmas is definitely the day I want to focus on and talk about my illness and how things aren’t going well.

And if the family stays with you, it can be difficult to retreat into a quiet place because there are no quiet places.  And the food.  Most chronics are on some kind of special diet; and holidays don’t allow for special diets.  Have you ever tried being gluten-free at the Thanksgiving table?  It’s rough.  You can’t eat the mashed potatoes because they put a bunch of dairy products in it, you can’t eat the bread for obvious reasons, you can’t have the gravy because they made it with white flour even though you asked for it to be made with corn starch.  You can eat turkey.  And canned green beans, if they thought to bring that along with their glutinous green bean casserole.  If the holiday is in your own home, you have more control over your meal; but if someone else is hosting you have no way of knowing if the food is something you can eat.  You can call ahead and explain your needs, but their kitchen isn’t gluten free and you don’t want to be a bother.  After the meal is worse, because you sit around watching everyone eat these delicious, fatty, sugary, deserts that you can’t have.  But your Aunt Jody won’t stop insisting you try her cranberry cobbler, and you keep refusing, and pretty soon you’re known as the snob of the family.

And then there’s the infamous New Year.  Nothing like a new year to remind you that another year has gone by and you still haven’t recovered.

8. Pharmacies

allergic to pharmacists

I don’t know what it is about pharmacies, but I’m pretty sure all the ones I’ve been to have never heard of HIPAA.  When it’s crowded and you’re trying to have a confidential consult with the pharmacist, he won’t lower his voice down.

I was on birth control a while back to manage my hormones.  And I had a new prescription added, so I needed a consult.  So after the pharmacist talks about the new pills, I started to walk away, when he suddenly calls out, “Oh!  And those such-and-such pills will limit the effectiveness of your birth control, so you’ll need to use a secondary protection.” Yeah.  It was that bad.  I stuttered out, “I’m not taking it for that. . . ”  And then I turned and ran away.  Look, I know I’m a college student, but don’t assume I’m a stereotype!  :(

Another time, at a different pharmacy, I was picking up three or four different antibiotics at the same time.  The pharmacist actually wouldn’t give me my pills.  She just held on to them and kept picking them up and putting them down and saying, “Such an interesting blend of pills!”  I could see what she was getting at, so I cut to the chase.  “I have Lyme Disease.”  “Oh, really?!”  She got all excited.  I guess having a Lyme disease patient wasn’t something that happened every day.  Then she starts asking me about my symptoms, and how long I’ve had it.  And then she reassured me that these pills would make me feel better and finally gave me my pills.  There were other people waiting in line, and they could hear the interchange.  Now she’s managed to have my condition known to at least six other people I do not know.  Every time I went back to that pharmacy, she has to ask, “And how are you feeling?  Are you feeling better?”  And she seems really confused that I’m still on these prescriptions after a year.  It’s awkward, it makes me feel uncomfortable, and I wish I actually had the privacy that I’m supposed to have through the Health Information Protection Act.

9. Discreetly taking pills

Taking pills

“Excuse me for a minute. . .” 

“What in the WORLD are you DOING?” 

“It’s normal and I’m not a druggie, okay?. . .” 

It’s all fine and dandy when you’re at home all day, but when you’re going out–it’s a whole different story.  When and where is it okay to whip out a handful of pills and chug them down?  In the middle of class?  In the middle of church?  On a first date?  Pills jingle in purses and clack together when you shake them out. Pill carriers can have snappy lids that will echo in a quiet room.  Then you still have the trouble of getting them in your mouth without people noticing the number of pills you’re taking.  Injections and  inhalers are even harder to use without drawing attention.

When I first starting dating my boyfriend, I would plan to eat twice.  Once with him and then once at home so I wouldn’t have to take my mealtime pills in front of him.  Now that we’ve been dating for almost a year, I have no problem bringing my pills with me.  I can take them right in front of him.  He is very supportive and cheers me one with each pill, making pill time fun! :)

10. Saying “No.”

no

Chronics say ‘no’ all the time.  NO, I will not go to the event.  NO, I can’t hang out.  NO, I will not eat that food.  NO, NO, NO.  And every time we say it, it hurts.  Because I do want to go, I do want to hang out, and I do want to eat that sugary fatty chocolatey awesome-smelling desert you spent three hours making.  But I can’t.  I have to say ‘no’.  I need to put my health and well-being first.

So there you have it.  Hopefully you understand the life of a chronic a little better.  So go out there and make a gluten-dairy-soy-sugar-free dish and give a chronic a hug!

~LymeDiseaseWarrior

Questions?  Something to add to the list?  You can comment below or contact me at: lymelightfight@gmail.com

 

 

 

Good News and Bad News

So I’ve come back from Thailand.  I fulfilled my childhood dream and crossed off a major event from my Bucket List.  The trip was amazing, of course.  :)  The Thai people are very friendly and happy.  The landscape is stunning!  We started out in the middle of Thailand, then went up to the North–right along the border, before we went down to the south (right along the beach) and back up to the middle.

As for my health, I held up pretty well.  I had brought my pills with me, but missed a few doses here and there.  We were running around, after all.  The flights were tough on my joints; the air pressure changes proved to be very painful.  But not too unbearable.  I’m glad the trip ended when it did though.  Two weeks was definitely my physical limit.

Unfortunately, since I’ve been home, my joint pain has returned and steadily increased.  It’s a constant ache in every little joint from my head to the tip of my toes. and every inch in between.  It’s not Lyme arthritis, as I have no swelling or redness.  It’s just a constant ache; sometimes dull, sometimes sharp; but always there.  The pain doesn’t affect my mobility much.  I can walk just fine and type.  It is getting more and more difficult to drive though.  I drive one-handed, switching back and forth between my arms as one becomes too painful to use.  It’s becoming not uncommon for me to tear up as I drive from place to place.  But I’m still capable; my brain is working, so I don’t get confused or forget how to drive.  It just hurts.

I thought that the pain might be a result of the weather change.  In the past, cold weather has always worsened my joint pain, so I figured that going from hot Thailand to a chilly California was the culprit.  And with the weather having grown colder while I was gone, it seemed likely.

But when I saw my Lyme doctor yesterday, she said that it’s not the weather.  :(  She made the comment that I had ‘retracted’ in my progress.  There’s only a couple places where Lyme can drill down and hide in the body.  The brain–and I’m not having those symptoms–and the joints.  In the lining of the joints there’s not much blood flow, so therefore there’s not many white blood cells present there.  An excellent hiding place.  And that’s what the doc is pretty sure has happened to me.  The stress of travel and my missed doses coupled together opened the door for the Lyme to hide in my joints and cause trouble.

Unfortunately, the only way to get the nasty bugs out of there is by IV antibiotics; which is exactly the thing I was hoping to avoid.  In this whole process of Lyme, I have endured much.  But I was always able to say, “At least I don’t need a PIC line.”  Well, now that might not be the case.

We’re still not confirmed on whether I need a PIC line or not.  My doc ran a bunch of tests to make sure it’s not something else I’m dealing with.  But she didn’t sound too hopeful.  :/

For those of you who are not Lymies, getting IV antibiotics is a big deal.  On the one hand, there’s the financial cost.  Oral antibiotics can be costly, but IV antibiotics are just down-right expensive.  Not to mention more of a hassle, as you either have to go sit in the doc’s office while they administer it to you, or you get a PIC line put in and administer it to yourself.  The PIC line is basically a tube sticking into your arm, 24/7.  Can you imagine walking around with that?  At least the weather is colder now, so I guess I’d have to have long sleeves.  But still.  I work with kids at one job and customers at my other job; a PIC line in my arm just does not sound good for either job.  :(

Not to mention the emotional strain.  I AM SCARED OF NEEDLES.  Every month for almost two years, I’ve had my blood drawn for tests.  That’s over 24 times I’ve had a needle stuck in my arm, and I STILL have to squeeze my eyes shut and turn my head away.  Call me a whimp, but I just don’t see how I can keep my eyes away from my arm for that long.

AND when you have to get IV antibiotics, you know that’s when your case has moved from being the ‘easy one’ to being one of the complicated ones.  :(  My doctor and her staff have been calling me the ‘easy one’ since my first appointment there.  That’s because I do what they say, and I just keep getting better.  Until now, when I’m going backwards instead of forwards.  Nobody is calling me easy anymore.  :(  And the doctor wants me to see the Nurse Practitioner on my next visit, so she can have ‘fresh eyes’ on my case.  You don’t call in a consult on an uncomplicated case.  I don’t like being a complicated case.

But, I don’t want to sound like a baby.  I know my case is far from being complicated compared to those of others.   I know lots of Lymies out there who have had PIC lines and they dealt with it, probably with a lot less complaining and whining.  I can probably find a way to make it work with my jobs; if not, well. . . I’ll cross that bridge when I come to it.  I can probably afford it, with my parent’s help; I’ll just have to put off paying my student loans.  : P  SO I don’t have to worry about the finances–yet.  And there are some positives; one is that the IV antibiotics would probably get me better faster than my oral ones could.  And it might actually be nice to have a physical sign of my illness for once; I am curious to know what it would be like to have an illness that’s not so invisible.

AND MOST OF ALL: I might not need it.  My joints might improve and we’ll see that the IV is unnecessary.

. . .

(but it’s hard to focus on the positive)
 

~LymeDiseaseWarrior

Three Things I’ve Learned About Healing

Three things I have learned about Healing:

1) Healing takes time, more time than expected.
When I was first diagnosed with Lyme, I was told I would feel much better in three months and be fully recovered in six. A year and a half later, I’m still fighting. I’m much better than I was, (MUCH MUCH BETTER), but I’m not quite done yet.  Healing takes a lot longer than what is originally expected. 

2) Healing is hard work.
Healing is not just a matter of sitting back and letting your immune system do its thing.  It involves a lot of work, more work as the healing progresses.  The start of the journey involved a lot of resting.  As time went on, it involved walking, and then yoga, and now jogging and strength exercises.  It involves doctor visits, pill taking, trips to the pharmacy, exercise, blood tests, and working to pay those bills.  Healing is not always easy.  The drudgery of taking pills 6 times a day can ware down mentally on a person.  And it can be so easy to just give up.  To not take any pills today, to sleep in and skip the yoga; but it becomes increasingly important to keep up on the responsibilities of healing.  It’s hard work, but necessary work.

3) Healing can be frustrating.
Recovery is not a straight line from start to finish.  It has a start point and an end point, but the middle goes up and down and up and down, over and over again. One week it feels like real progress has been made, and the next it feels like your progress has been reversed.  It’s frustrating.  That’s how the first part of recovery feels. 

The latter end of recovery, when you’re nearing the end point, can be even more frustrating.  You keep thinking you’re near your goal of wellness, when a setback pushes the end point further out. You start feeling better, not 100%, but feeling well enough that the appointments, tests, and pills, seem a little pointless.  Every time you have to swallow more pills, you wonder if they are even doing you any good anymore.  And the doctor’s visits are bothersome, as your doctor says the same thing he did last time, “You’re getting better.  Keep doing what you’ve been doing.” 

When you get close to the finish line, you can just catch a glimmer of the red ribbon, and the breeze carries the faint sounds of cheering.  You can just begin to taste that victory cake.  But you can’t have it yet.  You’re still on the course.  Your heart is still pounding, your lungs breathing hard, and your body aching and straining. You’re closer than you were at the start, but you’re not there yet. You can do more than you used to, but not everything you did before your illness.  You can commit to some things, but not everything you want to commit to. 

It’s hard to stay on the course.  Does the finish line even exist?  Or have you been lied to?  It’s tempting to just sit down and give up.  Banish those thoughts of perfect healing, forget about the victory cake, just give up.  But over the next hill, around the next obstacle, there’s a crowd waiting to cheer you on.  There’s a golden badge with “Hero” etched in it, waiting for you to claim it.  That red ribbon is waiting to be broken.

So don’t give up.  Don’t stop your hard work.  Keep on fighting, keep on healing, because someday you’ll cross the finish line.  And all the other fighters still in the throes of healing will cheer you on, and rejoice with you, and think maybe, just maybe, “I can do it too.”

~LymeDiseaseWarrior
lymelightfight@gmail.com

Tired of Fighting

I’m getting really tired of fighting Lyme. It’s not that I’m dealing with really bad symptoms, in fact, I’m feeling great and have only a couple things bothering me these days. I’m feeling well, but I still have to take the pills and get the blood tests and go to the appointments. And I’m tired. I’m so tired of fighting. I want to move on in life and put illness, and pills, and symptoms, and appointments, and blood draws, and the constant hassle of a chronic illness behind me.

I’m ready to have an easy life. Easy compared to the life I’ve had these past six years. A life where my worries are job, school, and family, and not chronic illness.

Next Wednesday I meet with my Lyme Doc. And I really want her to say that she thinks I’m done with Lyme, and that I’m ready to try going without my pills to see if my symptoms are gone for good. But I know there’s still a couple symptoms I’m having that I shouldn’t be having if I didn’t have Lyme. And it’s discouraging. I really want to be done.

Please pray for me as I go to my next appointment. Please pray for wisdom for my doctor, as we decide what steps to take next. Please be praying for my recovery to be soon and complete. And most importantly, please pray for my patience and endurance. Fighting a tough battle was hard. But this languishing between healthy and not healthy and feeling stuck there is frustrating and weary.

~LymeDiseaseWarrior

Beat the Heat! Ten Ways to Survive the Summer with a Chonic Illness

I look forward to summer every year.  The sunshine, the leisure days, the popsicles and flip-flops!  But as soon as summer hits, I am unpleasantly reminded that summer is hot.  And heat is a mortal enemy for those with a chronic illness.  Heat exacerbates existing symptoms, and can bring with it it’s own set, for those who are particularly heat-sensitive.  It can increase pain, dizziness, nausea, palpitations, and fatigue.  It can be dangerous, causing fainting and heat strokes!

Yet, we don’t have to be idle victims of the heat.  By thinking proactively, we can develop a plan to beat the heat this summer!  So without further ado, here are ten ways to survive the heat this summer:

1. Air Conditioning

Image

The beauty of air-conditioning is that it can keep your environment at a consistent temperature.  Or by turning the knob back and forth you can make it colder, then hotter; back and forth to suit the whims of your body chemistry.  Putting in an AC unit, or purchasing a mobile one can be a bit of an expense, but it is thoroughly worth it.  If the funds can’t be found, however, you can see if your Doc can write a prescription for the AC unit.  Then it might be possible to write it off as a medical expense for taxes.

2. Ice Packs

dog with ice pack

Keep your freezer stocked with ice packs at all times.  Whenever you go somewhere, be it to work, the doctor’s office, or to a graduation; bring a few ice packs in a small lunch cooler.  When it starts to get hot, you can put one on your neck and be instantly cooler.  You can use re-filled plastic water bottles in a pinch, but an ice pack will not ‘sweat’ as it melts.

To save on money, you could even make your own:

3. Strategically placed fans

fan owl

I always have a fan right by my head when I sleep.  If I get hot at night, I just have to reach over and switch it on.  I don’t even have to get up.  :)  If you can afford it, buy a few fans to distribute around your house.  Have one placed next to where you spend most of your time; such as the couch or at a desk.  Have one for the bathroom, and one (or even two) for the bedroom.  The advantage of fans over air conditioning, is that you can direct the artificial breeze to specific points of your body, whereas air conditioning blasts cold indiscriminately.  This is helpful for illnesses such as Lyme disease, where one half of your body can be raging hot at the same time as the other half being ice cold.

handheld fan

Keeping a miniature fan in your purse for when you go out and about would be another great idea.  If you start to overheat in the middle of a store or when you’re waiting in a doctor’s office, you can simply pull out the fan and have instant relief.  :)

4. Cold Showers

cold shower dog

As soon as the weather goes over 85 degrees (Fahrenheit, not Celsius), I ditch hot showers and go for cold.  Or at least lukewarm.  :)  When it gets really hot, I’ll take three showers a day!  One in the morning, and then again in the afternoon, and right before bed.  This helps release all the hot air I’ve trapped in my body, and bring my temperature down.  Showering can take up a lot of spoons (see: spoon theory), but you can conserve energy by keeping two of the showers to just rinsing off and leave the scrubbing for one shower.  If standing is difficult, you could see about installing a bench or chair to relax as you rinse off.

5. Increase Water Intake!

elephant drinking water

When it comes to how much water you should drink, the answer is always “More!”  Dehydration will bring on fatigue, nausea, and dizziness faster than you’d think.  With the sun and heat of summer time, our bodies need even more water than it normally does.  If you have trouble remembering to drink water, try an app for your phone or tablet that will remind you to drink water.  (such as what is suggested in this post)  I found it’s helpful to have a special cup for water that I can refill over and over again.  :)

6. Stay in the Shade and Wear a Hat!

big hat

Staying out from under the sun will cut back on rising body temperatures.  Staying indoors can accomplish this, but if you choose to go out for a little league game, or to lounge at the beach, it’s important to protect yourself.  Sunscreen is great for protecting your skin, but a hat or umbrella can keep your temperature down as well.  So make sure that a hat and sunglasses makes it on your list of things to pack for fun events this summer!

7. Mist and Spray

spray bottle

I have a spray bottle that I use at home whenever I get too hot.  Just a quick spritz on my head and face, and it feels so good!  You can carry a small one with you when you go places, or you could get a misting fan, and then you don’t have to add another thing to carry.  :)

8. Frozen Treats

smoothie

If your illness doesn’t allow for sugar in your diet, you can still have a number of frozen treats.  Bags of frozen fruit can be purchased for cheap at a grocery store, then whizzed in a blender with yogurt or milk.  Viola!  Frozen treat. :)  The same can be applied for green smoothies, simply freeze one of the ingredients (such as milk) in an ice cube tray before throwing it in the smoothie.  Iced tea is another way to cool down with something tasty.  :)

9. Plan Outings during the cooler hours

sunset

Schedule doctor’s appointments in the morning or in the late afternoon, avoiding the peak hours for heat.  Save grocery shopping for after dinner, and take a nap in a cool room in the afternoon instead.  Being out and about during the peak hours can increase risk for a heat stroke.

10.  Save Hot Tasks for cool hours.

dishes in sink

Tasks that will heat up the house should be saved for early morning or later evening.  Running a dishwasher, cooking, vacuuming; any activity that produces heat will heat up the house and is better left to a time when it won’t overwhelm the temperature.  Tasks that heat you up, such as a hot shower, hand-washing dishes, mopping, or exercise, should be done in the cool hours as well.  This will save yourself the discomfort of overheating your body.

Well there you have it!  You can now stay cool during the heat of the summer.  :)  If you have any tips to add to the list, comment below!

Blessings,

~LymeDiseaseWarrior

lymelightfight@gmail.com

9 Must-Have Apps for a Chronic Illness

A chronic illness is never easy to manage, but with today’s modern technology, we have a little help.  Below I have listed several apps that I have used and found useful.  Look through the list and see if there’s something here that could make your life easier; and if you don’t see one that should be on the list, comment or email me and I’ll try it out.  :)

1. Water Your Body

water your body

I loved this app.  It has a simple interface, you select the container size you normally drink water from then just tap on the icon every time you drink water.  When you start, it asks for your weight and gives you an exact amount of water you should be drinking every day based on your size.  If you aren’t drinking enough, it will send you little reminders that pop up on your phone telling you to drink water.  :)  And you get to track your progress from a daily or week to week basis.  And did I mention you can change it from liters to ounces?  Handy for us American folks.  :)

2. CVS Pharmacy App

CVS pharmacy app

This app has saved my life many times over.  Okay, it hasn’t literally saved my life, but it has made it a lot easier!  I have all my medications at my fingertips.  When I need to refill prescriptions, I just tap-tap-tap and in a couple days they are ready for pick up!  :)  Before using the app, you have to have an account set up online and you have to use their pharmacy (obviously. . .).  What’s really handy is when you go to a doctor’s office and the nurse asks for a list of your medications.  You can just open the app and hand over your phone!  For someone like me who has as ton of meds, this app eliminates the awkward spelling bee between you and the nurse.  Plus, if you don’t like making phone calls, you can use the app to order your meds. :)

3. Medisafe Medication Reminder

MediSafe

I wish I had this app when I started taking pills for Lyme disease last year.  I was really bad at remembering to take my pills when I started out.  I’ve gotten better about it since then, but having an app like Medisafe makes it even easier!  So easy, that I now only miss my pills if I consciously choose not to take them (oops. . . )  Like any other pill reminder app, Medisafe pops up with little reminders whenever it’s time to take your medications.  But the nice thing about medisafe is that each individual pill pops up on your phone, and you can hit “snooze”, “take”, or “skip”.  Snooze is nice if you’re in the middle of something and want to take them a little later, as the app will remind you again.  And if you take some but skip others, medisafe will keep track of what you’ve skipped.

When you open the app itself, it has a little pill box with four corners in it for morning, afternoon, evening and night.  I can add in all my pills, including the name, dosage, and food instructions. My favorite part: I can customize each pill to it’s shape and color!  Each pill I add appears in my pill box. :)  Once I’ve added all my pills, I don’t even have to touch the app.  It takes a load off my back without being intrusive to my life.

4. Google Maps

google maps app

I DON’T HAVE A SENSE OF DIRECTION.  And sometimes I forget where I was going.  If you don’t know, Google Maps is basically a GPS for your phone, but it works better than the GPS you might buy at a store.  I use it ALL the time to tell me where I’m going.  It is particularly helpful when I’m hitching a ride from somebody and they ask me how to get back to my house, and I suddenly blank.  Instead of the awkwardness that follows, I just pull out my phone and say, “this thing can tell you better than me.”  :)

5. Period Tracker

period tracker

Okay ladies, I know we’ve all experienced this.  We’re waiting in the exam room and the nurse asks us, “When did you have your last period?” *awkward pause*  I can’t remember.  And now I don’t have to!  Furthermore, I can keep track of when it’s coming in the future.  Which can help explain symptoms that appear before hand.  So I don’t get all panicked that my joints hurt a ton more, because I can look at my tracker app and know that, hey!  That’s why my joints hurt!  One thing that sets Period Tracker apart from other period tracker apps is that period tracker lets you keep track of your symptoms daily AND you can add notes.  :)  I haven’t figured out why I’d want to keep track of this information, but for someone else who may be monitoring thyroid symptoms, etc.  this may be a useful feature.  :)

6. Keep (by Google)

google keep

This, combined with Google Calender, is what I call ‘my brain.’  If somebody asks me something I should know or tells me something I should remember, I say “Hold on, I have to open my brain.”  I keep a list of blog post ideas, questions to ask my boyfriend, things to remember to tell my doc at my next appointment, and a big long list of tasks of everything I need to do.  Keep makes it easy to keep everything organized by color-coding, and different format options.  You can write notes, make a checklist, or even pin pictures.  And you can simply touch and drag to rearrange the notes.  I think the main reason I love Keep is that it saves automatically as you write.  So if your finger slips and you exit a note prematurely, you can just open it up and start where you left off. That sets it apart from the notepad app that came with my phone, I lost a number of blog posts I’d started planning out all because I didn’t hit ‘save’ before exiting.  Keep doesn’t do that. :)

7. Daily Yoga App

daily yoga

I suck at exercising.  I suck at motivating myself to exercise.  And I suck at remembering to exercise.  Enter: Daily Yoga App!  After downloading the main app, you can choose from a wide range of plugins that feature sitting routines, lying poses, etc.  (I’m fond of the ones that don’t involve standing.)  When you click on a routine, it tells you how long it’s going to last (usually 15-30 mins) and then it goes through each pose one by one with voice instructions and a video to see how it’s done.  The speaker has an accent, but it’s not too hard to understand.  The only point of caution I have for this App is that the guy showing the moves is, um, more flexible than I ever will be.  So don’t hurt yourself trying to follow him as he does a perfect split and puts his chest on the floor, okay?  :)  Only do as much as you can do and only stretch as far as you feel comfortable.  If it hurts, don’t do it!  :)

8. Google Calendar

google calendar app

I should have listed this after Keep.  Oh well.  I LOVE Google Calendar.  It is the second part of my brain, Keep being the first.  I put in all the events of my busy life and it sends me reminders when they are happening soon!  I can even set multiple reminders and have them set for earlier times.  If I put in the wrong start time for an event, I can just touch and drag it down the calendar to a later time.  No more over-booking and scheduling conflicts!  When someone asks if I’m available I can simply pull out my phone and pull up my calendar to check before I commit.  :)  And as soon as I’ve checked and I commit to the event, I tap it in right there and then so I don’t even have to remember it for five seconds.  Beautiful.  An absent-minded person’s dream!  ^_^  And you can sync it to your Google Calendar on the computer, so you literally have it available all the time. :)

9. Solitaire by Mobility Ware

solitarie app

Useful for waiting in doctor’s offices, because I often don’t remember to grab a book.  What I like about Solitaire by Mobility Ware is that it has the option of a ‘winning deal’, which means that if you play the cards right it IS possible to win.  :)  I suppose you could use any game, really, but make sure you have at least one game!  I once had to wait for over three hours for an appointment to which I had arrived on time!

Well, that’s my list.  If you have an app you like to use and notice that it’s missing from the list, go ahead and comment below or shoot me an email.  If I get enough suggestions, I might have to write another post!  :D

UPDATE:  I should have mentioned before, but all of these apps were ones that I downloaded free through the Google Play Store on my phone.   They may or may not be available for free on your particular model/service plan. :)

Blessings,

~LymeDiseaseWarrior

P.S. Questions?  Comments?  Stories to share?  You can email me at: lymelightfight@gmail.com :)

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