My Top Ten Must Have Items For Living With A Chronic Illness

I don't know about you, but I am really bad about taking time to care for myself. Or spending money on things that will benefit me. I often put others needs before mine and that is something I've always done that. Until recently, when I realized that my needs truly need to come before others and I need to do more to take care of myself and not just symptom management and doing only what I feel like doing. So I won't usually take the time or spend the money to take care of me outside of what has to be done daily just to function. Sometimes it will really take a reminder to spend some time taking care of my skin and and body outside of my daily routines. I assume that others are like me as well. Over the last year I've actually been taking the time and spending the money to take care of me. So I decided to share some of my favorite products that I think others with Chronic Illness/Chronic Pain should have on hand and would enjoy.

Bath Bombs/Epsom Salt

One of the things I have found that I enjoy and can be both beneficial and a way to pamper myself is a good hot bath. So I wanted to tell you about a couple of my favorite items I use in the bath.

1. One of my FAVORITE things is to take a HOT bath. So the first thing on my MUST HAVE list is a good Bath Bomb. Most of my bath bombs come from an Etsy shop called "ThisLittleLymeOfMine." Her products are not only aesthetically pleasing, they also have healing properties. She uses Himalayan Pink and Dead Sea Salt to make her products, both of which are known to have a healing properties. One reason that I like to support this shop is because it is owned and run by a fellow Spoonie. She is currently running a special for those who use the code 5OFF15, which will get you $5 off a $15 purchase. You can visit her shop by clicking on the link above.

2. Another must have in my opinion is a good EPSOM SALT! I've tried out many different kinds of Epsom salt throughout the years. And my most favorite is Relief MD Lavender Epsom Salt. I use this a lot at night due to its calming properties. Lavender is known to help one sleep, and the magnesium in the product helps to soothe sore and tired muscles and joints! I have found this in stores local to me but it can also be found on amazon. The link above will take you to the product on Amazon.

Skin Care

The older I get the more I realize just how important taking care of your skin really is. And not just the skin in your face, we need to take care of all our skin. We only get one face so we have to take care of it. I've been looking for some good skin products over the last few years and the following are the best I have found.

3. The next thing I want to share is lotion, because I have been having some major skin issues due to my illnesses. And I know I am not alone in this. Many with chronic illnesses will deal with skin issues. So I felt it important to share a good product with all of you. Recently, I have really been liking the Jergens Wet Skin Lotion! One of my favorite things about this lotion is that you can put it on your skin while it's still wet and you don't feel slimey. When it dries my skin feels so soft and nice!! By clicking the link above or looking at the picture below you will see that if comes on amazon in several size and quantity options, and 5 scents. My favorite is the coconut, it reminds me of being in a beach with a drink in my hand!!

4. Another line of products I've been loving is the Senegence Skin Care Line. (And no this is not a shameless plug because I sell them! I truly love them and that's why I'm sharing!) I use the whole normal to dry line which includes a cleanser, a day moisturizer and a night moisturizer, as well as some other products. Including a polishing exfoliator. Even though I have some major skin issues on my face as of late due to my lupus this line has significantly helped those issues. My skin is much more even and much less red. The dark circle treatment has done wonders as well. You can see before and after pictures below. And if you want anymore information on the skin care products I use just click the link above.

Heat Products

One of the non-pharmacological ways I've found to deal with my pain is by using heat! That's why I want to share my two most favorite heating devices.

5. When struggling with chronic pain a good HEATING PAD is essential. Over the last few years I've tried many different heating pads. Most of which didn't hold up to frequent use. I just got the best Heating Pad I've ever had. They have a couple different size and color options for this pad. The things that I like about this specific heating pad is that it's made more like a heated blanket. This particular product isn't like the older ones where the cover and the pad are separate, and over time the heating pad gets misshapen and doesn't fit in the cover. Another positive thing about this pad is that you have options of how long you want the pad to be on before it shuts off. You have the option of a two-hour timer or no automatic shut off. Another benefit is the automatic shutoff. I also like that the temperature can be set anywhere between 1 and 6. Not like the older models where you got not hot, really hot and way to hot!

6. Heated blankets are simply a MUST when you have chronic pain!! There are different sizes and options for these blankets. I have one that's a heated throw that's nice for cuddling up on the couch. And one that is queen sized and stays on my bed. All of my heated blankets have been made by Sunbeam. My all time favorite is the Sunbeam Dual Control Heated Blanket. One thing I like the most about this blanket is that there are dual controls so if you were sharing the bed with a significant other you can each set your own temperature. And there is a wide array of temperature options. My other favorite thing about this exact blanket is that you can preheat it. I like to turn on the preheat function about 10 minutes before I get into bed so it's ready for me when I'm ready. When you are ready to buy this kind of blanket you should watch the prices. Certain times of year (usually during the holiday season) the blankets will drop in price. .

Sleep

Sleep is so important when you are chronically ill. Yet it is often one of the biggest problems we deal with. I have found a few items that have significantly helped me in my battle of with poor sleep.

7. One of my favorite ways to pamper myself is by putting my super soft sheets and fleece blankets on the bed. The ones I currently have are T-shirt sheets . They feel exactly like your favorite soft T-shirt. In my opinion there is nothing better than getting into a clean, super soft, set of sheets! The particular sheets that I have and are pictured below will come in 9 different colors so you should be able to find ones to fit your bedroom decor!

8. A good BODY PILLOW is a must! When you deal with chronic pain of any kind or insomnia good pillows are important. Especially a body pillow because it helps you to find THAT spot that is often very hard to find! When you look them up you will find that they are called maternity pillow because of the shape. My body pillow is a maternity pillow, but has really helped me sleep and I have less nights of insomnia since I got this pillow.

9. Anyone who struggles with migraines, light sensitivity or even insomnia needs a good Sleep Mask. Like many other items on this list I have tried MANY different sleep masks over the course of several years. Things you should look for in a sleep Mask is that it truly blocks all light and is the correct size and will fit your face. Like many other products, you get what you pay for, and that's the same with sleep masks. The cheapest is usually not the best. But you also don't need the most expensive. Just try a few and find what you like. The product linked above and shown below is one of my favorites

Miscellaneous Items

10. I think all ladies (and men I suppose) should have a good foot spa! This spa is the one I have and I really enjoy using when my feet hurt! It's also fun to use for a girls night in! I used it a lot more when I was working and had been on my feet a lot. But you can really use it anytime. It comes with interchangeable pieces that can be used for massage or scraping the dead skin off your foot. Any spa would be good. The one I linked is simply the one I have.

These are just a few of my favorite MUST HAVES that I discovered over the last few years. The items I mentioned and linked are good for all people and can be used by anyone. But they are all very beneficial to those dealing with a chronic illness or chronic pain. These days any product I find that will make my life easier is going to be high on my list of necessity and to share with other. I feel like we all need to support and help each other, one way to do that is to share the things we have found in life that make things easier. I hope my list will help one of you and possibly make part of your life a little better or a little easier. If you have any questions about any of the products please just leave them in the comments for me.

With Love,

Amber

How Many Times Have you Heard, “Just Lose Some Weight”?

If I had a nickel for every time I've heard over the course of my life that losing weight would help, I would be a rich rich women by this point in life. Yes, I know that getting to and staying at a healthy weight is important! So is eating the right foods and exercise. But in the long run will losing weight really fix or cure your health issues? Yes, I'm sure it probably will help some. But it's not going to fix everything!! People like to throw that comment out for every issue. Oh you have headaches, lose some weight! Oh you have IBS, lose some weight! Oh you aren't having any luck dating, lose some weight. Oh you're having problems getting pregnant, lose some weight. I assume in the majority of cases people truly do not mean to be a Debby downer by telling others this. But they also probably have no idea how it feels to hear that from people you loved and respect, and expect some sensitivity from. If you've never struggled with your weight you have no idea how it feels for a friend or family member to direct those three words at you. "LOSE SOME WEIGHT!" As a person who has struggled with my weight since High School I understand what a touchy topic this can be. I look back at my teen years and would give anything to be back at that weight now. But sadly that Amber was about 40lbs ago. But I didn't just get fat due to poor choices and lack of proper food, just like many other chronically ill. Most of us probably took the DEVIL drug, aka Prednisone. Yes, prednisone fixes many many things. But it is also known to cause weight gain due to the cravings many deal with while taking the medication! And not like 3lbs weight gain. We are talking like 25, 50, 75 lbs. And it came on FAST. Your symptoms are mostly gone but now you got all the bonus weight. Sigh. The weight no one wants.

But it's not just Prednisone that causes weight gain. Hormones often used for birth control can also cause weight gain, as well as Lyrica which is used to treat fibromyalgia! There are many many more that can cause weight gain. The point I'm trying to make here is that every over weight person you see did not just sit on the couch eating chips and watching Netflix all day! Even though that is what people automatically assumes, it is not always the case.

Did anyone think that maybe those of us who gained weight while on Prednisone might deal with a LOT of daily pain or extreme exhaustion!?!? Have you ever lived with so much widespread pain that literally every joint, bone and muscles hurt so bad that it's torture even getting out of bed. Much less taking a walk or going to the gym. Does anyone consider the fact that many of us who are over weight can't stand the way we look and can't look at ourselves in the mirror. Many of us who have gained weight due to medical conditions or medications never asked for this. We didn't just give up on ourselves and sit and eat chocolate all day. We got sick!!! And because of that many have taken medications that can cause rapid weight gain that doesn't come off easily.

There are also those in the chronically ill community that gained weight because of the pain. They may have not felt like being the most active person. Every step, every tiny movement make your whole bodg ache. Then when someone throws out the "just lose some weight," comment and you just wish they could live in your shoes for 24 hours so they know what's it's like. It's honestly really hard to do anything at times, even low impact exercise can hurt! So what I am saying is when you already hurt in places you didn't know could hurt the last thing you want to do is "hit the gym!"

If you really think you are giving offering up some groundbreaking piece of advice to work out and eat healthy. YOU ARE NOT! We've heard it from family and friends and even the doctors. I will admit the best I've ever felt was when I wasn't walking in the morning before it got hot and ate a diet low on gluten. (gluten has been found to mess with inflammation in everyone.) It just wreaks havoc with the chronically ill. But let's be honest eating healthy can be really expensive! And no that's not a cop-out, but if you have ever tried to eat a gluten free diet, it's hard at first and it's expensive. And let's be honest until you are ready to make a big change it isn't going to happen. We are the only ones who can decide that we need to change the way we eat &/or our activity level. No one else can do it for us.

I guess the takeaway from my rant and rambling is that I wish people would work on their delivery. If you are kind and truly concerned about my wellbeing, I'm going to be more apt to listen to you. More than I will listen to the person who just tells me I'm fat and I need to lose weight. It's not a surprise I know what I look like. I understand that research shows "When patients lose 5-29 percent of their body weight, the symptoms of chronic Conditions will improve!"Per the Cleveland Clinic. I know this but sometimes just getting your body moving and making that first move is the hardest part.

Don’t Leave Me Out

If I had a dime for every time I've been told by a friend or family member that they didn't want to tell me something or invite me to something because I'm sick, I would be RICH!! I've been left out of all kinds of news and events over the last few years! News about a new baby or a new job, or that someone lost a job or was struggling with something, or being left out of a fun night out. All because I am sick. I know that my friends had the best of intentions, but I'm just a normal person! I can handle anything you don't want to tell me. In fact I am more impacted when I am left out more than when they share worrisome news. Yes, it's true I have chronic conditions, some of which are impacted by stress, but it's my stress not your stres. Just because you are stressed over your news doesn't mean I will be. I totally understand why people don't always share their news with me. They think by not telling me it will protect me from undue stress. When in reality not telling me makes me worry more and tends to make me more upset. I may start to worry that we aren't friends anymore or that you are angry with me for some reason! Learning that I wasn't told makes me feel like I was never given the opportunity to share in your good news or support you through the bad.

Just because I am sick doesn't mean I don't want to know all the things about my friends. It also doesn't mean I can't be happy for them. For instance, I know some people who feel that those who can't have kids wouldn't want to be told about a new pregnancy. They assume that by telling me that it will make me sad and frustrated. It's true that I will probably never be able to carry and give birth to my own kiddo, but I've come to terms with that. While I may be slightly sad when you tell me you are pregnant, that doesn't mean I can't be happy and excited for you!! I still want to attend baby showers and buy the baby gifts. And I will always want to snuggle with a brand new baby!! I understand the reason for not sharing but PLEASE don't leave me out!!

Don't leave me out when you are making plans for a girls night out either. I may not be able to attend because of a migraine or a respiratory infection or a flare. But I still want to be invited. Finding out via social media that you've had something exciting happen or that you had a night out and didn't tell me, makes me feel bad. I would much rather hear your good news from you than second hand or from social media. It's much more sad and hurtful to find out that something big is going on with you and I didn't hear it from you!

I know that chronic conditions aren't always understood. People don't know what might make your condition flare or what increases your stress. And that's okay, I personally don't expect them to. That being said, never hesitate to ask me about my condition. I will always be glad to tell you about it and what impacts it!! I will always be real with you as well! I won't make excuses to not see you or go to dinner, I promise to always tell you what's really going on. And please don't feel like you can't tell me something because I am sick!! Even at my worst I will still be excited or happy for you. Or help you talk through something you are going through. Above all I am still me, I am just me with an illness

With Love,

Amber

The Spoon Theory, How Spoonies Get Through a Day

When you are sick and really feeling terrible, there is nothing that can be more irritating than when someone says to you, "At least you don't loo sick!" While they may not mean this as anything but a compliment. In general it is NOT how most with an invisible (chronic) illness will take it. To hear you don't look sick when you have an illness where your body is attacking itself on the inside but can't be seen on the outside is very very frustrating. So much so that fellow Spoonie Christine Miserandino developed a way to explain how we are feeling. Her piece is called The Spoon Theory. If you aren't familiar with this theory you need to be. Christine decided that she needed to find a way to explain how well or poorly she was feeling to her best friend and roommate. Her roommate was the person who went to doctors appts with her, saw her sick and saw her cry. She stated that if she couldn't effectively explain it to this person, how could she explain it to anyone. She thought about it for awhile and decided using spoons would make the most sense. And at this point The Spoon Theory was born. And stated, "At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands."

Christine went on to explain that the difference between a healthy person and someone with a unhealthy person is that someone with a chronic illness has to make a choice and choose what they do or don't do every day! When a normal healthy person does not have to make that choice.

"Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control."

Christine goes on to talk about how at the beginning of the day the chronically ill start with X amount of spoons and that's how many you get. No more, no less. And through the day EVERY SINGLE ACTIVITY that you do costs you X amount of spoon. That's everything, including getting dressed, taking a shower, putting on makeup etc. All activities that most would be thinking that are simple and easy things that shouldn't be a problem. However, activities like that are the ones most people will take for granted and do without a second thought. That being said, those who have a chronic illness may have to forgo those activities, or others, like drying their hair and putting on makeup (simple as they may seem). Those things may definitely be skipped if there is an activity later in the day that they know will take more spoons and they really want to take part in or attend. Even if we may be able to do those simple tasks like those what were mentioned above it make take use 5 times as long as it used to. Simply because we don't have the energy to get them all done at once like we once did and may require frequent breaks through the getting ready process so that we don't risk exhaustion before whatever it is we are doing! Those of us with chronic illness have to do what we can to conserve spoons so we can make it through the day.

Let me give you an idea of what a work day looked like for me before and after my Lupus diagnosis.When I was working as an RN, right out of school before I was my first life changing diagnosis, my mornings were very different then they are now! 7-10 years ago every morning I would get up and get dressed, do the normal tasks like deodorant and brushing my teeth as well as doing my hair, which could consist of being in a pony tail/bun or down and curling it! I would put on my makeup almost every day and eat breakfast at home before leaving. I would always leave for work with enough time that I could ensure that I would arrive on the nursing floor a full 30 minutes before I started my shift so I could fully prepare for my day. I would work a full 12.5 hour shift, most of which I was on my feet and going, going, going for the whole shift. I would sit very little usually only to chart and long enough to eat a quick lunch maybe 15 minutes, if I was lucky. At the end of my day I would arrive in the room where we gave report, right on time because I was usually busy until it was time to give report and leave. Once I left work, I would often go out to dinner or even out to the bar for a fun night out after work. I could easily survive on 5-6 hours of sleep and do okay. During part of that time I was also in school for my bachelors degree, so I also had to work on studying, writing papers and going to classes online and on the computer, as well as spending time in lab or clinical.

The previous scenario is so different then what it's like now (most recently). When I was working as a hospice nurse in the field last year, I would wake up maybe 20 minutes before I had to leave, if I was lucky! Leaving just enough time to drink a yogurt shake or maybe something as i was driving, jump in some clothes, put on deodorant and perfume and brush my teeth. (Much different than the way I did before) Most days I would work anywhere from 4-8 hours a day depending on what my day was like, and how far i had to drive. By the time I got home I was in so much pain and so stiff I could hardly get out of my car and walk into my house. And most days I would shower and fall into bed. Even if i has only worked 4 hours. And this is where I would stay until the next day. I wouldn't sleep that whole time most days, but I didn't have energy to do anything else. And my spoons were totally and completely gone. There was no more meeting with friends for dinner after work or going out for drinks on a work night. And most nights I require no less then 8 hours of sleep, more likely 10-12 hours. And many times on my days off I would spend resting because I was tired from the day before and knew I need to rest up for the next work day.

When I came across Christine's Spoon Theory, I found it to be the perfect way to explain my days and how I pick and choose what I do and don't do. Over the last 6 years I have used this very theory many many times to explain what is going on with me and why I may cancel plans from time to time. When anyone new comes into my life I often times will send this to them so they can get a bit of an idea of what I have to deal with on a daily basis. And I suggest that all of you do the same. This works for all chronic issues. Not just Lupus and Fibromyalgia. It can be used to explain the energy conservation requirement of any condition that causes chronic pain and chronic illness. So since I could not show you Christine's complete theory, I want to provide the link for you. The Spoon Theory in its entirety can be found by clicking that link. I recommend all of you read it even if you have read it before. I also recommend that you keep the link so you can send the theory to any friends or family who you feel needs a better understanding of what you deal with all day every day. I also hope that those who you share this with will have a little bit better understanding. And will maybe refrain from using those awful 5 words we all hate so much to hear, "But you don't look sick!" If you are a friend or family member of someone with a chronic illness please take time and read Christine's whole piece. It would honestly mean so much to the person in your life who is a Spoonie!!

Please share this post with anyone you might know who is dealing with a chronic illness either as the chronically ill, or as family or friend of the chronically ill, and you feel that they could benefit from it!

With Love,

Amber

I also want to send a shout out to Christine Miserandino for allowing me to quote her writing in this post!

Reference:https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Exercising with Chronic Illness

Exercise is not something I have talked a lot about in previous posts. Because it's not something I have been doing. And it's not something I enjoy, or to be honest know that much about. But honestly it's time! The cardiologist cleared my heart and we are looking at my lungs. But recently a doctor that I love and respect very much reminded me that the shortness of breath and high heart rate I have been experiencing could be something as simple as deconditioning. So it's time for me to get back to exercising. And to make getting fit a priority. As I started researching how I should get back into the fitness world I thought others could use the information as well. So today I wanted to share a bit of information on what kind of exercise is good for those with chronic illness/pain and joint issues.

Before we get into any suggestions about exercise I wanted to remind you about a few things.

  • Before beginning any exercise program you should ALWAYS contact your physician to get the okay.
  • You should always start with low impact and go slow! You can increase your impact and intensity slowly.
  • Always move at your own pace and never try to keep up with someone you are with or with a class.
  • Lastly if your pain level increases by more than 2 points from where it was at the start of the exercise you should stop &/or modify that specific exercise to try to ensure that you don't cause a flare.

It is recommend that everyone do a combination of stretching exercises, strengthening exercises and cardiovascular exercises! Stretching will help to increase flexibility, loosen any tight or stiff muscles, as well as improve range of motion. Everyone should be doing some stretching EVERYDAY!! Strengthening will help to build up muscle strength. And cardiovascular exercise has a plethora of healing benefits. Now let's look at what specific cardiovascular or aerobic exercises you could be doing.

1. Walking - is an excellent form of light aerobic exercise. It helps to bring oxygen and nutrients to your muscles, helps rebuild stamina, boosts energy, and will reduce stiffness and pain. Other options of low impact aerobic exercises would be riding a stationary bike or using an elliptical.

2. Yoga - Practice the most gentle kind of yoga you can, preferably the Hatha form of yoga. This kind of yoga is a combination of postures, breathing, and meditation that will reduce the physical and physiological symptoms of pain. A study that was published in the Journal of Pain states that participants reported significantly less pain when doing yoga. Yoga will also help to build endurance and energy while improving sleep and concentration.

3. Tai Chi - The benefits seen with tai chi are very similar to those seen in those who do yoga. Tai Chi is a very low impact kind of exercise where the participants slowly, gradually and gracefully preform a series of movements. Studies show that this form of exercise may even be better to relieve fibromyalgia pain than yoga!

4. Swimming & Water Aerobics - Any exercise in the water is good for people with chronic pain or joint issues. It is also an excellent alternative to walking for those with mobility issues. Being in the water provides a low-impact cardiovascular exercise that helps to keep you moving without putting added stress on joints and muscles.

The last point I want to make applies to all people. Not just those who are chronically ill. It is something I have struggled with love you whole life not just the last six years since I've been diagnosed. I don't know about all of you but if I don't have an accountability partner I am less likely to stay accountable and stay on track. If I have someone who is checking in on me a few times a week saying hey how is your diet, and how is your exercise routine going? I am more likely to actually stay on top of those things. So I strongly recommend finding someone in your life to be that person for you. So make sure you find someone to help you stay on track.

We took a brief look at some exercises that are good for those who have chronic pain or have joint issues. So maybe this will give you an idea of where you could start. I did not cover stretching directly because most people have a basic idea of how to stretch. I also didn't cover strength training, because it can be very complicated and vary dramatically from one person to the next. However, there are articles for reference on both below. If you do plan on starting a new exercise plan please let me know what you plan on doing. I know for me having an accountability partner works best for me. If I don't have someone to keep me accountable then I won't stick to my plan as well as I do with that partner. So that is also something for you to keep in mind. If I can help you in any way please let me know. I would be very happy to help!!! I hope this helps some of you. Below are some articles for references on exercise with chronic illness for you.

With Love,

Amber

References:

https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/exercise-and-chronic-disease/art-20046049

http://thehealthsessions.com/exercising-with-chronic-illness/

https://www.mayoclinic.org/diseases-conditions/arthritis/in-depth/arthritis/art-20047971

https://www.fmcpaware.org/exercise/strength-training-for-the-person-with-fibromyalgia.html