DISEASE MANAGEMENT: The self-care wheel

I found this online a few weeks ago and I’ve been giving a lot of thought to it. I think the whole idea makes a lot of sense. Personally, breaking down your well-being into six different areas really helps focus me on making sure I’m not ignoring one part of myself.

Here’s the wheel:

See the information at the bottom of the graphic for attribution.

The six parts are:

1. Physical
2. Psychological
3. Professional
4. Emotional
5. Personal
6. Spiritual

I think the best way to go about using this self-care wheel is to figure out where you’re adequately taking care of yourself and where you’re dropping the ball. Once you know what parts you’re neglecting, you can do further investigation into that area and make some decisions about actions to take to re-balance your life.

Many of us chronic illness warriors especially ignore the professional side, which can be to our detriment in a variety of ways. For instance, you may not know this, but I’m a romance writer. Unfortunately I can’t write as fast as I used to, and my royalties have gone down drastically as a result. I need to figure out how to manage my energy better so I can write more, so I’m trying to do things listed on the physical side in order to help the professional side.

What part do you think you’re doing well? Where are you lacking? Tell me in the comments!

DISEASE MANAGEMENT: Tips for making showering easier

To anyone not battling a chronic illness, the title of this post probably sounds ridiculous, but us chronic illness warriors, it makes perfect sense. Showering and other grooming tasks can be incredibly draining for those of us with limited energy, and often doesn’t seem worth it. Here are some tips to help you through the sometimes arduous process of showering. This advice comes courtesy of The Mighty.

1. Avoid taking a full shower on days when you have many required tasks. Instead, do a sponge bath or spot wash, and take care of the rest another day. It won’t kill you to go a day or two without showering.
2. Use a shower handle with strong suction cups. That way, you don’t have to install anything or need tools, but you’ll have a way to help yourself balance.
3. Try a combination shampoo/conditioner/body wash. You can use one product to take care of most of your needs, rather than bending and twisting to pick up and put down numerous products.
4. Find a place to hang your towel where you can reach it easily. If it’s within arm’s length, you won’t have to risk a fall on a slippery tub or floor.
5. Use an electric razor so you can do any necessary shaving outside the shower if needed.
6. Dry yourself with your blow/hair dryer if you have difficulty reaching all the spots. Just don’t put it on high.
7. If you feel you must take a shower every day, divide your tasks. Wash your hair one day, shave the next, etc.
8. Stretch before showering to warm yourself up and make your muscles and joints less likely to seize up.
9. Try a handheld shower head to minimize the pressure on your skin and to more easily maneuver to those hard-to-reach places.
10. Install a shower water filter if chemicals bother your skin.
11. Use dry shampoo on the days you don’t have enough energy to wash it in the shower.
12. Buy a terry cloth bathrobe and let that do the work of the towel, then just hang it to dry when you’re done.

Do you have any other tips for dealing with showering? Tell me in the comments!

DISEASE MANAGEMENT: Six facts about Tramadol you should know

I thought this was a great infographic about Tramadol. Many medications exist to treat chronic pain and illness, and in my experience, Tramadol is one of the more effective choices with one of the lesser amounts of side effects.

For my pain, I try to stick to ibuprofen and diazepam (generic Valium), but sometimes Tramadol is needed. When I have to take it, I do. I think that’s how many of us battling chronic illnesses handle the pain. Grit your teeth if you can, take over the counter meds if the pain doesn’t go away, switch to narcotics if you’re unable to handle your pain level.

How do you handle pain? What do you think of Tramadol? Tell me in the comments!

DISEASE MANAGEMENT: Essential oils to relieve pain

Essential oils can be a huge help in pain relief. Many of us don’t want to rely on pills for pain management, and little other help is available, save a few salves and other topical applicants. You’ll notice many of the same essential oils are used to mitigate pain. I buy these in the bigger sizes, usually 4oz. Let’s begin!

There are three ways to use essential oils. The first is topical, whether diluted with a carrier oil or not (depending on the oil), applied directly to the affected area. The second, aromatic, consists of putting a couple of drops of the oil(s) in water in a diffuser. The third, which is probably the most difficult, is internal. You can buy empty veggie caps and fill them with a combination of carrier oils and essential oils. Most of these I would recommend applying topically for the best chance of relief.

Back pain:
Ginger
Wintergreen
Lavender

Nerve pain:
Eucalyptus

Neck pain:
Chamomile
Lavender
Frankincense

Shoulder pain:
Chamomile
Lavender
Frankincense

Knee pain:
Wintergreen
Rosemary
Ginger
Frankincense

TMJ pain:
Wintergreen
Lavender

Foot pain:
Frankincense
Wintergreen

Kidney pain:
Lavender
Thyme

Tendon pain:
Frankincense
Wintergreen

Hip pain:
Frankincense
Wintergreen
Lavender

Leg pain:
Rosemary
Wintergreen

Bone pain:
Frankincense
Wintergreen
Eucalyptus

I hope this gives you a good jumping off point for using essential oils in your everyday life to ease your pain. As you can see, only a few are needed for a variety of applications. I think oftentimes people think a ton of money must be spent on essential oils, but that’s not the case at all. I urge you to try these.

DISEASE MANAGEMENT: 10 ways to explain your illness to others

Courtesy Creative Commons, used with permission from Sofya Yaruya

We all feel like this, right? You can see it in her face – the frustration about feeling sick, the anger that no one believes her, the disappointment because people don’t understand. And healthy people can’t. They simply cannot even begin to fathom what life is like with a chronic illness. But maybe hearing some of the things on the list below will help.

1. Imagine having the flu, and it never going away. Ever. The aches, the pains, the fatigue…and that’s on a good day.
2. Now run a 10k and cut your grass with a pair of scissors. You’re approaching the level of fatigue we live with. And we have to repeat these two steps every day, because we don’t look sick.
3. Pain floats through your body like a poltergeist. You can’t stop it, you can only try to hide the fact various parts of you are feeling like you’ve been stabbed. You can’t cry, because you’d cry all the time.
4. Oh, and you can’t sleep. Well, not when you want to, anyway, but you could very well drop at a work meeting while you’re completely powerless to stop it.
5. Your joints ache, but when you try to relax, restless legs flare up. You need to move to relieve them, so you get up to stretch, then nearly fall asleep right on the floor. That would be acceptable – at least you’re sleeping – but then you realize the stretches haven’t helped. You’re caught in sleep purgatory, just like every other night.
6. Even showering and getting ready in the morning leaves you exhausted. Now you look presentable but dread having to go anywhere.
7. Eating and digestion is, well, a challenge. You might have IBS symptoms, you might not be able to tolerate certain foods so you have to watch your diet, and you gain weight that you can’t lose no matter what you do.
8. As all of this is happening to you, you know there are no good drugs out there to ease your symptoms. Some chronic illnesses have more effective drugs and some have less, but none of these illnesses are curable. That’s why they’re called chronic illness. No, we won’t “feel better”.
9. You feel like an idiot talking to other people because your brain is so foggy. You lose words, ideas, sentences. Just today I was playing a game on my phone. I had an idea that I remembered I needed to look up. By the time I closed the game I had forgotten what that idea was. The same thing happened twice more today.
10. Stress doesn’t just “stress you out” – it can cause truly debilitating pain that’s called a flare. A flare can last anywhere from a few hours to a couple of weeks. I had a busy week last week with my daughter’s school year ending and a volunteer job I do once a year that’s very close to my heart. I’m still having additional trouble sleeping and fatigue even more easily than “normal”.
11. And a bonus – your symptoms constantly change, so you can’t predict a darned thing about how your day will progress.

Now that I’ve depressed you (or made you feel like someone actually knows what you’re going through) go forth and share!

DISEASE MANAGEMENT: What to do when you hit a wall

Photo courtesy of Creative Commons, used with permission, photo by Lee Haywood

I call the time right after you realize you’ve done too much but before you get hit with a full-fledged flare “hitting the wall”. We’ve all been there. So, what to do? With a hat tip to Grace Is Sufficient, here are some tips.

1.  Remember you’re sick – not weak. Give yourself a break. You might have to throw out any type of to-do-list you had planned for today – and you know what? That’s okay! As long as everyone is kept alive (yourself included) think of today as a win. Having to call it quits for the day doesn’t mean you’re weak or lazy. It means you have a chronic illness and you’re doing the best you can each day. If you’ve hit the wall, you have already reached your best for today.
2. Dump the guilt. There is always a part of us that feels like we aren’t measuring up. We want to be a better wife, mom, daughter, friend, co-worker, etc. Every person has their limitations – yours just came by way of a medical diagnosis.
3. Rest. This may sound like a no-brainer to some or the-impossible to others. Based on our life demands, we may not think rest is an option. However, part of hitting the wall usually consists of depleted energy reserves. Allowing yourself to rest may mean the difference between hitting-the-wall today or ending up in a full blown flare tomorrow.
4. Take a moment to think. Too often I’ve hit the wall only to remember I forgot to take my d-ribose, vitamins, or meds. You’d think by now that would be standard practice to me, but I find from time to time I lose my head and those things slip. Take a second to evaluate whether or not you’ve taken care of those necessities.
5. Exercise some self-care. Now may be the perfect time to indulge in a hot bubble bath, listen to relaxing music, have a hot cup of tea or sit outdoors to soak in some vitamin D. Remember, self-care isn’t selfish.
6. Nourish your body. Make sure you’re staying well hydrated. We can be slightly dehydrated without even knowing it, which adds to our fatigue. Be sure you’re eating healthy food. You’re body’s in need right now and although a plain hot dog bun and a can of cola is the easiest to grab, it’s not the best for your body. Try to eat something good, but if you absolutely can’t, just be sure you eat SOMETHING and don’t feel guilty about it. You can get back on track tomorrow.
7. Nourish your soul. You might only have the energy to keep your ears open at this point. Jump over to a favorite blog that will encourage your heart – try CranberryTeaTime or RestMinistries for devotionals for the chronically ill. Listen to music, let Alexa read you a book (see the previous post about Alexa and how she can help you here).

These are only a few suggestions. If you have others, let me know in the comments!

DISEASE MANAGEMENT: Hacks to make living with chronic illness easier

1. Have stools in your kitchen. I use the bar stools we have around our island when I’m doing things like chopping vegetables. It’s a lot easier than standing.
2. Keep to-do lists – prioritized. I use 1, 2, 3 for mine. The 3’s need to be done at some point, but aren’t important enough to spend energy on when I don’t have it. The 2’s are items that have more urgency, but if I can’t do them within the next few days that’s okay. Some will remain 2’s, others may move to 1’s. 1’s are tasks that need to be done within the next 2-3 days, so it’s necessary to manage my energy to accomplish those tasks.
3. Use Amazon Subscribe n Save. We all have items we buy on a regular basis – paper towels, vitamins, snack foods, etc. They’re delivered straight to my door once a month. Each item can be sent anywhere from every month to every six months, based on the preferences you set. It saves me time and energy on things I know I will need and use.
4. Find enough comfortable clothing that’s acceptable to wear out of the house. Sometimes you can’t wear sweats, etc, so for times like those, I have leggings, flat-heeled boots, t-shirts, and other things I can put on and look okay for functions.
5. Have a basket of snacks by my bed. I have everything from healthy stuff like nuts to less healthy things that will give me a mental boost, like chocolate. While I’d like to say I always eat healthy, there are times when I need to soothe myself with food. I don’t feel guilty about it. This saves me from having to go up and down the stairs since my bedroom is on the second floor and my kitchen is on the first.
6. Use compression socks. I have restless legs syndrome, and it can make sleeping very difficult. Compression socks help a lot and I keep them right near the head of my bed so I don’t have to stumble around in the dark trying to find them. I have a little basket with those, some slippers, fuzzy socks, etc.
7. Set a blue light filter on my phone and turn down the lights early. This all gets my body in the “time to go to sleep” mode. The filter is definitely a help.

There are other things, but I don’t want to overwhelm anyone, so you’ll see more in future posts. Do you have any hacks? Tell me in the comments!

DISEASE MANAGEMENT: Quotes about chronic illness when you need a lift

Creative Commons picture by Forsaken Fotos, used with permission

Who hasn’t felt like this before? But don’t throw in the towel! Lots of inspiration exists for those of us who battle chronic illness. I’ve pulled out some of my favorites for you.

What are your favorite quotes about dealing with chronic illness?

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DISEASE MANAGEMENT: Self-care Sunday – what is it?

Photo by Sacha Chua, Creative Commons, used with permission

Have you heard of the term Self-Care Sunday? I hadn’t until recently, but I love the idea. I could explain what it is, but this blog post does such a great job, I’ve copied some of it below for you.

35 Self-Care Tips For People With Chronic Illness

• “Asking for help is ok!  (My family knows how strong willed I am so they don’t want to offend me by doing things for me and many times (ok basically all of the time) when they offer to help me I say ‘no’. Then on the off chance I ask for help, or accept someone’s offer to help I feel so relieved, and things get done (dishes, laundry, a night to myself because someone is babysitting) and it makes the person helping me feel good too!)” (Brittany)
• “Make a check list for basic self care.  If you’re feeling bad and can’t figure out why, a checklist helps get all the basics accomplished and then you’ll start to feel more clear headed (Have I eaten?  Have I had water?  Have I showered?  Am I wearing clean clothes?  Etc.  It seems like basic stuff to the able bodied and minded but sometimes it’s not so easy for us.)” (Currie Lee)
• “Make a self-care basket. This way when you really need to take a moment to yourself EVERYTHING will be in one place.” (Yvonne)
• “Talk to someone about how you feel. (I go months at a time fighting this fight on my own, trying to be strong for everyone around me. Put a smile on and fight through the pain. I have a background in psychology so I think that I can handle the feelings and emotions on my own. WRONG! I’ve been to counseling (for other issues, but my health did come up) and it was one of the best things I’ve ever done. When I get to a breaking point I talk to my husband about how angry or frustrated or guilty I feel and though he can’t fix the physical pain, just his understanding and reassurance lift a huge weight off my shoulders and make me feel not so alone and very very loved.)” (Brittany)
• “Forgive your body for disappointing you sometimes. You did nothing to deserve to hurt. Don’t punish yourself for perceived failures. Be gentle and compassionate with yourself.” (Kitty)
• “Give yourself grace and/or meet yourself where you are… the amount of time you have for self-care might be small or the amount of time you can stand to do it even, but you have to know that and meet yourself where you are and relax properly.” (Yvonne)
• “Small accomplishments are BIG Victories!  (I used to set ridiculous expectations for myself. Take care of a one year old monster who gets into literally EVERYTHING, keep the house spotless, dishes, laundry, bathrooms, run all of the errands, while working three days a week and spending every weekend with extended family running here and going there. At the end of the day I’d look around at the clutter and dishes and laundry and realize I had accomplished NOTHING. I would feel so useless and depressed and convinced myself I was a failure. My counselor helped me realize I was being totally unrealistic with my expectations. Now, I make a smaller more realistic list and if I accomplish one thing on that list it’s been a good day. It could be as small as ‘unload the dishwasher’ or ‘take a shower’. I am very okay with that now.” (Brittany)
• “Accept you are who you are. Your illness might get better but it might not. Working with yourself where you are is the first start.” (Cody)
• “Sex and/or masturbation are healthy, valid forms of self-care. There is a lot of sex-negativity that people with chronic illnesses face. There is the notion that because we are chronically ill, the last thing on our minds should be our sexuality and that we should not waste our very limited energy on sex or masturbation. We need to fight this sex-negativity and assert our right to be sexual beings.” (Erica)
• “Go outside and breathe even if it is for two minutes. Suns and air are healing.” (Kafi)
• “Allow yourself to use the Internet without guilt. I’ve found that a lot of people with chronic illnesses (and especially those of us who cannot work) use the Internet more than the average person. And that is okay! Don’t feel guilty about your Internet usage.” (Erica)
• “I would advise anyone with a chronic illness to build a support network. Don’t be ashamed to ask for that help. You don’t have to do it alone.” (Kitty)
• “Sometimes you have to allow yourself the easiest solution even if you’ve promised yourself you would stop (i.e. sometimes all I have to eat is bread and I can’t leave the house, even though gluten occasionally makes me feel sicker, I eat it anyway because it’s better than wasting away on my bed being hungry.)” (Currie Lee)
• “Have a self-care plan. Know that self-care doesn’t have to take a long time. You can do something in three minutes or you can take an hour. A self-care plan will help you look at what you can do in the time you have.” (Yvonne)
• “Find doctors or specialists you trust. Of course, there are certain limitations to this because of insurance plans, but finding someone you’re comfortable with can make a huge difference in treatment, especially if you have to see somebody on a regular basis. If you don’t fully trust your doctor or if you don’t think their approach to your treatment is a good match for you, find somebody else! If you can’t communicate openly with your doctor, they might not be able to provide you with the care you need. Self-advocacy is a huge part of self-care in my opinion.” (Kaitlyn)
• “Acknowledge the body you have instead of mourning the body you had.” (Kafi)

• “Do what you can when you can. I tend to get discouraged when I set out to do something only to get shut down by pain. I push myself to try but also accept the things my body is telling me. Some days I might want to go for a long walk, or clean the house, or go out with friends but my body isn’t up to it. I do as much as I can and rest when my body tells me I need to.” (Kaitlyn)
• “Find the right health care professional and use them. (I went through five OB/GYNs before finding one who took me seriously. I tried everything the others recommended and when I said I was still in pain they scratched their heads or gave me more birth control or told me to “just have a baby”. I have finally found a doctor that has been proactive in my treatment. He has uncovered several conditions we all thought were the cause of the pain and he treated each one aggressively and effectively. Though I know something is still not right as I’m still in pain he has not ignored my cries for help. He continues to give me options and takes my personal life and choices into account until the inevitable hysterectomy will  “cure” me once and for all.) Don’t be afraid to tell your doctor something isn’t right, pursue them until they fix it, or find a new doctor!” (Brittany)
• “It sounds simple, but when my body is hurting my favorite thing to do is to put on fuzzy fleece pajama pants, super soft socks, and a comfy shirt. It actually takes a good deal of pressure off of my body (and my mind) when I’m not wearing tight jeans or uncomfortable shoes. Comfy pajamas can fix pretty much everything.” (Kaitlyn)
• “Communicate. You have to tell your friends and family what you need or else they won’t be able to help you get that time.” (Yvonne)
• “Don’t be afraid to spend extra money on something if it is going to make your life easier.” (Currie Lee)
• “Something I always tell myself and taken as my life motto “Take one day (and sometimes one moment) at a time”. Living with chronic illness means that you’re going to have really bad days. Once accepting those days, I think learning to practice different self-care ways as the days come could be very valuable.” (Cody)
• “Stick to a routine. Getting enough sleep is a key factor in managing my pain. Since I also have disordered sleep, going to bed and waking up at roughly the same time every day is the best way to ensure I get enough. Keeping a routine also helps me notice patterns with my symptoms like what time of day they tend to be particularly bad or what specific activities or situations make them worse. Third bonus: it’s easier to remember if you’ve taken daily medications if you do it at the same time every day.” (Kaitlyn)
• “Learn to measure your energy in increments and treat your energy like currency. When performing a task or engaging in something, always always ask yourself, ‘Can I afford this?”” (Kafi)
• “Share your story. Not only will this help you mentally by getting your thoughts and feelings out, you may help others too. Someone may be suffering from the same condition but they’ve been afraid to talk about it before, or they may not even have a diagnosis if they haven’t brought it up with their doctor. You could discover someone you already know has a similar condition and find support there or create new friendships through existing support groups. Spread the word and spread your knowledge! Someone could benefit from your experience and you may benefit from others’.” (Brittany)
• “Remind yourself your body is still amazing. Chronic illness or no, your body deserves to be pampered every now and then. Get a massage, take a bubble bath, buy some fancy smelling lotion. All the usual self-care tips still apply.” (Kaitlyn)
• “Find a community. We all deserve to feel a sense of community. Because many people with chronic illnesses cannot leave the house much, our sense of community is often limited. I suggest you seek out some community (either online or in-person). You can join a church (or other house of worship), go to a group at a local library, join some Facebook groups, etc.” (Erica)
• “Find some hobbies you enjoy. They can be as low-key as crocheting or something more active, like taking dance classes.” (Erica)
• “Follow Through. Make the appointments you need to make; check ups, specialist visits, therapy, testing… all of it. Refill your prescriptions. Don’t talk yourself out of doing these things because you feel discouraged or, on the other hand, if you feel like your symptoms aren’t bad enough to warrant things like this. I’m admittedly horrible about this. I say to myself all the time, ‘Well I haven’t had any pain in a little while. I probably don’t need that follow-up appointment’, and then, sure enough, the pain comes back. If your condition is chronic in nature consistency is key.” (Kaitlyn)
• “Move your body. For those with chronic illness, it may be as simple as sitting up in bed and breathing deeply.” (Kafi)
• “Invest in a quality reusable heat pad. I got one from Walgreens for about $15 and it does wonders. Mine is electric but there are also aromatherapy ones that go in the microwave.  Try to find one that’s easy to clean. The one I got has a cloth cover that I just toss in the washing machine. In a pinch, soak a wet wash cloth or small towel in hot water and put it over whatever parts of your body are sore. Great for menstrual cramps too!” (Kaitlyn)
• “Think of all the tremendous things your body is doing right instead of beating yourself up for the things that aren’t working so well. Focusing on the positive things and expressing gratitude (even if it’s just in your head) changes your entire perspective and boosts your mood. Yoga is an excellent tool to grow this skill (plus it’s a gentle way to exercise). There are tons of guided meditations or even hypnosis videos on YouTube that focus on body positivity. Even if they aren’t specifically for your illness, they can be helpful to cultivate an optimistic attitude about your body.” (Kaitlyn)
• “Drink water/Take a bath.. It seems simple but, when you’re dehydrated it’s difficult for your body to heal or even maintain your new normal.  A healing bath has given respite even when my pain levels were off the charts.” (Kafi)
• “Don’t keep friends who don’t listen to your needs/limitations or try to able-splain you.  No one has time for bad friends.  Let them go.” (Currie Lee)
• “Remember that self-care is an important investment. This investment requires time, money, and energy. Allow yourself to invest in self-care.” (Erica)

Now that you know what self-care is, what will YOUR Sundays (or whatever other day works for you) look like? Tell me in the comments!

DISEASE MANAGEMENT: Finding the funny in chronic illness

Who’s with me on this?

Sometimes it seems as if there is absolutely nothing funny about battling a chronic illness. But there is. Really. I actually have an entire Pinterest board devoted to chronic illness humor.

I think it’s important we acknowledge the ridiculousness of our lives. Hopefully then we can cope with all the conflicting feelings we’re bombarded with every day.

Another truth, huh? Who doesn’t overdo it when you’re feeling well? Who’s not trying to compensate for all those days when you can barely get out of bed?

Then there’s the ever-present desire to scream at everyone around you since they don’t understand the living hell you handle day in and day out. How many of us hear about all these so-called miracle cures from (presumably) well-meaning friends and family? How many of us deal with a lot of “get well soon!” wishes? Apparently the word “chronic” isn’t as easy to understand as we think it is…

And sometimes it doesn’t get better…though a venti Frappucino from Starbucks, complete with two or three shots of espresso added do help a little. A very little…

You know, we should all applaud each other more. If you haven’t heard it lately, you are doing a FABULOUS job. You’re still here, and that makes you fabulous.

For those times when you can’t even. I actually have a t-shirt my mom got me that says, “Nope, not today.” I’ve about worn it out.

A sloth on Ambien? Yeah, that sounds about right…How do you describe yourself?

“I’m so tired, my tired is tired.”
“Enough adulting for today. Naptime!”
“My goal in life? To move enough to prove I’m not dead.”
“I know I’m sick since I go to bed around the same time I used to leave the house to party.”
“I have no clue why I’m out of bed. There’s no reason good enough. Screw it.”
“I need to wash my hair, but I’m too tired to style it afterward.”

How many of these have you thought?

And one last thought for today…

Totally.

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