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

My Journey Is Not Yours to Share!

Every single one of us has our own story and our own journey. No two peoples journey will ever be the same. And we all feel differently about how and when we share our journey with new people. It can be a difficult decision as to when you decide to open up to new people about your chronic illness or condition. You don’t want to lead with it because the illness or condition does not totally define you, but it has helped to shape you into the person you have become. On the other hand if you wait to long the new people in your life may feel that you weren’t truthful or withheld information. However in the long run it’s our choice and our journey to share.

We all have friends or family who have a tendency to share our journey with new people as an introduction of sorts. They mean no harm and probably feel like they are making it easier on you by sharing your illness as an introduction. However, it is most often the complete opposite. It can be very uncomfortable or embarrassing to be introduced with your condition. I know for me I don’t want to be introduced to a person or group of people as my condition. The same way you would not want to be introduced by your religion or sexual orientation! Above all I am a person who has a condition. Not a condition that has a person.

In general I have NO problem telling people about my chronic illness journey. But it’s just that, MY JOURNEY! And at times it’s very personal to me and in most situations new people do not need to know about that journey right away. This may be the first and last time I meet someone and in that situation they don’t need to know I have a chronic illness. I want to be known first and foremost by my character. Not the girl who is sick, or dealing with a chronic condition. While my close friends and family may know both sides of me, people who I am meeting for the first time don’t need to know that part of me. I never want people to have preconceived thoughts about me based solely on my condition(s). Sadly, that’s often times what will happen if people are introduced to a condition before they really get to know me for me. It’s just human nature to associate a person who has an illness with people you have known in the past with that condition or stigmas around that condition.

When something someone else is doing is making you uncomfortable how do you bring up the topic without in turn making them feel uncomfortable or embarrassed? For many any kind of confrontation isn’t easy but there are some situations where a discussion is necessary. I for one hate any kind of confrontation and will do everything I can to avoid it. That being said your friends and family can never know how you are feeling unless you let them know. And most of the time in this kind of situation they would never think that sharing your journey might be uncomfortable for you. Simply because they’ve never been in your shoes. They don’t know what it’s like to live with a condition that impacts all areas of your life. In my experience, others need to share my journey is coming from a good place. They want me to feel comfortable and open in any situation. Without realizing that they are in fact doing the exact opposite.

When it comes to having a conversation about emotions and feelings I’ve found that honesty is the best policy. You just need to have an open conversation about how sharing your illness or journey makes you feel. I would definitely suggest making sure that how you deliver the message in a way that can’t be misconstrued! You want to make sure that you don’t make them feel badly about their actions. Simply because in most cases they are not purposefully doing anything to make you feel uncomfortable. When you’re dealing with a chronic illness or condition you learn how to bring the topic of your illness up and when to share your journey. And until you’ve lived in the place where this is an issue you can never truly understand. So when talking to your friends and family try to use an example to explain how it makes you feel. Like maybe explain to them that from now on every time you introduce them to someone you are going to say “Hi, this is Linda she is a bookkeeper and has five kids and is divorced!” While those are an important part of who Linda is, she doesn’t want to be known as the divorced bookkeeper with 5 kids. She wants to be introduced as Linda! And over time she can choose when to open up and share the details of that journey. Yes, I know it’s not quite the same but hopefully using an example like this will help them to see and understand how uncomfortable it is to have their story shared before they are ready.

If you are not chronically ill or dealing with a difficult journey, but have a close friend or family member is I hope this makes you think. You always want to think about how you would feel if you were in their shoes. If it was you dealing with a chronic condition how you feel about them sharing personal information with new people. Would you want to be introduced as Sam who has anxiety? NO! That is most likely not the first thing you want people to know about you. You, like us, would not want a new friend to have a preconceived view of you just based on what they might know or not know about said condition. Basically before you share details of a person’s life and journey you should always think about how you would feel if it was your story being shared for you.

There are so many labels out there in today’s society that we don’t need to add more. It seems as though people are no longer known just by their name. There is always a label or something descriptive attached. There’s Amber the blonde. Or there is Sam who has the triplet girls, or Bob who is gay. While those who place those labels were probably not trying to be judgmental or negative they are inadvertently causing others to judge them before they know the real person. In many cases they were most likely just trying to distinguish you from the other “Tim’s” they know. Ten years ago I never dreamed of being Amber, who has lupus and a mile long lost of other conditions. And I don’t want those conditions to define me. While they have become a giant part of who I am they don’t define me. At my core I am still the same person I’ve always been. I just happen to have a list of chronic conditions that impact me on a daily basis. In most cases people are doing what they think is right in the situation and are not acting to purposely make you feel embarrassed or uncomfortable. They want others to understand me, and to understand why I might do or say the things I do! They don’t realize that by sharing your journey they are labeling you. The only way to prevent this is to have an open and honest conversation. So if you feel uncomfortable or embarrassed by the way others introduce you tell them! They can never know how you are feeling until you take the time to explain your feelings to them! As I always say you have to advocate and stand up for yourself and your feelings because no one else will ever do it for you!

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

Expert Advice: How to Overcome Obstacles to 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

What’s In My Hospital Bag- Spoonie Edition

Sadly over the last three years I have spent many days and nights in the hospital. I even took a trip to Mayo for a week and have had a couple overnight trips for treatment. That being said I have what I need in my bag for the hospital down to a science. In fact when I get home from the hospital, I wash the dirty things in the bag and repack it. That way it’s always ready and I don’t have to rely on my family to try and pack it in a rush. So let’s just jump right into what’s in my hospital bag.

1. Pajamas/yoga pants- I always have at least one or two full sets of pajamas packed in my bag. Whether I am able to wear them or not I want to have them. And I generally have sets for summer and winter. Because you never know if you will be in a room with a roommate who keeps it at 60 or 80 degree. I also keep usually two sets of yoga type pants and a pair of shorts in the bag, in case I’m on a ward where I can’t wear anything but a gown. You just have to have bottoms on, no matter what kind. For me personally I don’t feel comfortable wearing only a gown.

2. T-shirts/Tank Tops- I always pack a T-shirt or two (usually short sleeved, maybe one long sleeve) & several tank tops in case they will let me wear them. Most of the time I am on a floor with a heart monitor so I have to wear a gown so they can reach it. But I always keep a couple just in case because to me they are much more comfortable than those darn hospital gowns.

3.Underwear & Bras – I will usually pack at least 6 days worth of underwear because that is the longest I have been in the hospital to date. As far as bras go if I think there is a possibility I will be admitted by my PCP, or that the ER will decide to admit me I will go in with a sports bra on! Then I generally try to pack 1-2 sports bras in my bag. That way I can change every couple days. Sadly, I have to wear a bra. It’s uncomfortable feeling for me not to and can be awkward for the nurses if I don’t!

4. Personal Care Items- I have a bag within my bag that keeps all of my personal care items in them. I always have deodorant, body soap, shampoo, lotion, toothpaste, toothbrush, and a hair brush!! I also keep some hair ties, and headbands in my bag as well so I don’t have to deal with my hair in my face.

5. Slippers or Flip-flops- This isn’t so much a comfort thing for me as much as a way to prevent walking on dirty hospital floor. Hospital/Hotel floors aren’t really known for being clean. So I never leave my bed without something on my feet. And most hospitals won’t let you walk in the room barefoot due to bare feet being a fall risk! I also always try to shower in flip flops! But obviously that’s just a preference for me, and may not be something you need on your list!

6. Entertainment – Most of the time when I’m in the hospital I am in with a Migraine. That being said the TV is often to loud and to bright for me. So I always have my phone, and usually my IPad. Because I have those things with me I always have chargers for both and earbuds. There is also usually a book in my bag in case I’m in with something besides a migraine and feel like reading.

7. Comfort- I’ve been in the hospital enough times to know that I will find little comfort in their beds. Because of that I always have my own pillow and a small fleece blanket to help me get more comfortable so I can rest more easily.

8. Miscellaneous Items- These are items I don’t always have with me for each admission, but are on my list for packing a bag. My CPAP generally doesn’t come with me. But if you are in a hospital the expects you to, you should make sure that it is on your list of items to take. This may seem funny but I HATE wearing socks. So I generally keep a pair or two in my bag just in case I have a roommate that keeps the trim like an iceberg! A pair of cheap sunglasses are almost always in my purse or my hospital bag. This is because I generally end up in the hospital with a migraine. And I’m very light sensitive. So I try to always keep a pair in my bag. The last thing I keep in my bag is an old Walmart bag or unused trash bag, to put my dirty clothes in. Finally, one of the most important things I MUST have is an eye mask!

These are only items that I pack for me. Obvious everyone is going to have a different list for themselves. While preparing to write this I polled my friends who also have recently spent time in the hospital for their must haves. This is their list.

9. My fellow spoonies MUST haves: chapstick, Makeup wipes, fill-it-in book, crossword puzzle books, ink pen, maxi pads/tampons (just in case it sneaks up on you while you are in the hospital), cottonel wipes, cup for dentures, glasses and glasses case, contact solution and case if you wear contacts, coloring book and something to color with, a heating pad or rice bag that can be heated up. One friend also said if she is feeling like eating she will sometimes pack some snacks that won’t need to be refrigerated.

I hope my sharing this list will help you to figure out what you need in your bag. Even if you don’t keep one packed I would highly make a list of the things you would put in your bag should you need one. If you do choose to take some comfort items from home it will make you feel a little less like you are in a sterile environment. Having a list will also make it easier for your family if they should ever have to pack a bag for you. To be honest that was a big reason why I started keeping a bag always packed. It was just to difficult to tell my family exactly where things were that I wanted. And this way the don’t have to be digging through my stuff!! That being said, packing a bag or making a list of what you would want in said bag, will make being admitted much less stressful or scary in the future!

With Love,

Amber

Special Thanks to Missy and Christall for sharing your personal lists with me!!

The Reason Behind the Blog.

January 2017 I was at an all time low. I had left the career that I loved so much as a nurse behind, to focus solely on me and my health. Something I’ve never been good at. Historically I always put myself behind others. Making sure everyone else has their needs met before my own. I don’t know why, but I do. At that point I needed something, something I could throw myself into. Something to focus my time on. So I started my personal journey to finding something I enjoyed and something that could make me feel happy again. I wasn’t sure what that would be but knew it was essential for me so I could crawl out of the deep hole I found myself in.

So a little over a year ago I started exploring my options of things I could really throw myself I to. And nothing was really catching my attention. I tried volunteering and that wasn’t a fit. So I came back to an idea I had been throwing around for quite some time. It seemed far fetched and I figured it would never amount to much. But I wanted to try it. I wanted to give BLOGGING a try. For many years I had said I was a “blogger,” but really all I was doing was journaling in an online forum. Yes, it was a good outlet. But I wanted more. I wanted my blogs to help others. I wanted to provide the world with Information, inspiration and truth! I wanted to be able to share my opinions on issues that really mattered to me and be heard. Even if it was only by three or four people, I wanted to try.

So I spent many days researching and looking at other blogs. And then many more days figuring out how to set my blog up. Finally after spending a couple of weeks working behind the scenes I put up my first blog. It didn’t go viral and wasn’t seen by thousands. Or even hundreds for that matter. But I enjoyed it. And I had a lot of ideas for topics I wanted to cover. So I just kept cranking out the content and praying that I would find a way to get my work seen by more. I felt like if my work could even help just one person then I had done my job!

My sole purpose when I started this blog was to spread information to others about conditions they may not have ever heard of. While also providing people, with the conditions I write about, more knowledge on their health. And also encouraging everyone to be their own advocate. I feel that knowledge is POWER! As patients the best thing we can do for ourself is to be educated on our bodies and our health. And to stand up for ourselves while acting as our own advocate. And I hoped that through my blog people will gain more knowledge and power.

Over the last year I have researched many topics that I knew a little about, but not enough. I have collaborated with several other great small businesses and have slowly grown my following. My blog gets on average about 300 visits a month. Which in the grand scheme is not huge, but I am happy with it. I am still working to grow my following so I can get information to more people all over the world. And always looking for new content to provide my readers. While doing all that is important, the most important thing that has come from starting the blog, is finding a passion. When I started writing I didn’t think this would amount to anything. But that’s far from the truth. In the process I have realized how much I love writing and getting knowledge into the hands of the people who need it most! The blog has given me something to pour myself in on days when I’m down about my current situation. As much as this site has been helpful to others, it’s been just as much help to me!!

With Love,

Amber

Dear World….

Hello world! This one is for YOU!!

No matter how hard we try there are always going to be some level of judgement within. But most of us keep that judgement to ourselves, and don’t stare people down or make comments when we think they shouldn’t be using that wheelchair, or parking in a handicapped spot or even just wearing a mask out in public. That being said many people don’t keep those judgments to them self and they make the rudest comments. Today this post is directed to those who can’t keep their judgments to themselves.

Yes, I know what you are thinking when you see me get out of the car that I just parked in a handicap spot. You look me up and down and then proceed to think, “There’s nothing wrong with her why would she park there!” And some will even glare or make comments. By looking at me all you see is what looks like a healthy lady in her thirties who’s only issue is that she is overweight! However, you CAN’T see my Illness! It’s INVISIBLE!! Meaning you may not be able to tell I have anything wrong by seeing me or even talking with me, unless I’m wearing a mask, or limping or even wearing sunglasses inside or using a cane or wheelchair. Otherwise there is no physical manifestation you will see!

You don’t know that even getting out of bed is hard. Getting dressed and ready is exhausting. And could take several hours just to get to point of walking out the door. Due to needing to take multiple periods of rest! By the time we finally make it to wherever we are going, whether it be a restaurant or a place to shop, we have no energy or spoons left AT ALL! You can’t see that it’s hard to breath, and my heart is beating way faster than it should. You can’t see the HORRIBLE migraine I am suffering from. Or know that the lights in the store or from the sun are making my head hurt that much worse. Or that the urge to vomit from said headache gets stronger with every step and movement!! But yet you continue to whisper and make comments and stare me down.

You don’t know that I woke up with a pain level of 8 and even after taking my prescribed dose of medication. I am still at a 7. You can’t see that every step is agony and every time I have to grab the cart to push it in the grocery store, that pain radiates through all my fingers, hands and up my arm! You can’t see the pain that is in my back and pulsating with every movement. Yet you still continue to stare and make comments and judgements.

You also don’t understand pain meds. You don’t understand that we would all rather do anything else than take pain meds. And NO most of us are not addicts and should not be treated like we are. If 99% of you were in our shoes you couldn’t do half of what we do. Because we have gotten used to the pain and know that I can’t stay home in bed just because I hurt. Because, if I did that I would never leave the house!!

I love when you see my mask and you turn around and go the other way because you are fearful for CATCHING WHAT I HAVE. Well, in this case the JOKES ON YOU!! The situation is actually the opposite. I wear this mask to prevent CATCHING what YOU have! You don’t know and can’t see it, but my immune system is to busy fighting off my body to worry about fighting off any germs i in contact with. What you may think is a just a small cold for you, could potentially put me in the hospital or even kill me! So I have to protect myself from you and the world!

And you will never understand what it’s like to have to stay in your home for weeks on end because the flu is running rampant in your area! What it’s like when you see people on social media and wish you could be out having fun. While instead you are stuck in your home because the flu for someone like me with Lupus could KILL ME!

The public will never understand the invisible illnesses. In general people will forever think that if there is no outward sign of illness, or pain (like a cast on a leg or a person on oxygen) they will most like assume that you are fine…..JUST LAZY! Which couldn’t be further from the truth. That has been the thought process for many many years and it will be hard to change. In general, the public doesn’t understand any illness that they can’t see. And we understand that. What we don’t understand is the need to make hateful and judgemental statements. How does that help in any situation?!?

I’m going to wrap this up with a few statistics for you regarding the invisible illness. And give you something to think about. Approximately 10% of Americans have a medical condition that could be defined as an invisible disability. And 96% of people with chronic medical issues, live with a condition which is INVISIBLE!! And most of those people don’t use a cane or assistive device that would show they are ill.

Perhaps after reading this someone will think before they judge! Hopefully, they will hold their tongue before making a rude and hateful comment. I know that’s wishful thinking, but I would hope that seeing this Information would make them think. If this reaches just ONE person who will change their thoughts about people using handicap spots or a wheelchair than I’ve done my job!!

With Love,

Amber