Things Are Never What They Appear To Be…

It is said all the time that I don’t look like what I am going through! As a matter of fact, I just said it yesterday! The truth is I will NEVER look like what I am going through and it is not about what clothes I wear, makeup I put on or anything aesthetic.

The reality of living with an invisible disease is, although our bodies are in full on war mode in the inside, you may not be able to tell we are fighting on the outside. It’s deeper than that though!

You don’t know where I’m going with this? Well, let me make it clear.

Some days when illness takes over and our bodies are fighting its hardest we do look run down, beat down, exhausted, weak, dark under our eyes, etc. It is true that we are not able to hide all of our scars, but no matter how many scars are visible or how we physically appear, the world will never see what we are truly going through!

You see, we don’t look like we are fighting mentally to get up and get dressed. We don’t look like we are so mentally exhausted that we have lost all track of time or reality at some points. We don’t look like at any moment we can have an emotional breakdown. You may not see how down and depressed we are because we awake daily with an ailment. You may not see the spiritual struggle we are having because we keep asking God to take away our illness and yet we are still sick. You may not see that we are only smiling to hide the pain. You may not see that we are so anxious about committing to anything because in the blink of an eye we may not be able to participate. You may not see that we are anxious to the point of nausea, worrying about our next doctors appointment. I could go on and on.

What most people don’t realize is that we are not only fighting physically daily, but we are fighting emotionally, mentally and spiritually all at the same time!

We look amazing!!!! On our worst days where you can see we are physically ill, we still do not look like what we are going through!!!

This battle is not for the faint at heart. This battle is for true Warriors and it is imperative to understand that just because we look “well,” doesn’t mean we are well!!! What it does mean is our strength is prevailing and what you see is a Warrior on the front line of the battle.

Don’t get confused by our outward appearance and automatically assume we are well or better because our illnesses affect us mentally, emotionally and spiritually as well as physically!!!

Don’t ever stop praying for us and sending positive thoughts because some of our hardest days are when we appear to be well on the outside!

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Reminder to Self

Self, do you know how strong you are? No, well let me remind you…

You awake daily not knowing what your day will look like, but you don’t allow the fear of the unknown deter you from tackling your day.

You attempt to get out the bed and you can’t move your limbs, but you don’t get discouraged.

You spend an hour exercising your limbs to be able to get moving, but you push through the discomfort not allowing a minor setback to derail your day.

You make it to the shower and you’re running late, but you don’t allow time to determine your attitude and you stay focused.

You have to take a break after the shower, but you utilize the time to be thankful for the ability to even make it to this point.

You get your breakfast together and it has taken longer than usual because you have to keep breaking, but you never get frustrated.

You accomplish all of that and are extremely tired, but you choose to count your remaining spoons and prepare for the rest of the day.

You are in pain all over, but you choose to stay positive despite how you physically feel.

You have so much to complain about, but you choose to use your social media platforms to encourage others instead.

You aren’t able to do much more, but you are grateful and ecstatic about all you were able to accomplish thus far.

I can go on and on, but the fact of the matter is, in spite of every curveball life throws at you, you still choose to be positive, staying your course, never taking things for granted, respecting your limitations while never giving up and you thank God all the way through!!!

If that isn’t strength, I don’t know what is!!!

You are Fierce, Resilient, Powerful and Enduring!!!!

You are the epitome of STRENGTH and never allow anyone to tell you otherwise!!!!

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Unpredictable Life

Living with a chronic illness is like trying to predict the weather. We have no control over how we will feel moment to moment. There is a lot of speculation regarding the validity of the fast change in our health. I don’t know how many times I have heard someone say, “Well you were fine just a minute ago.”

The reality of living with these illnesses is that in the blink of an eye your day can change. You can be feeling awesome (for you) and the next moment, you can’t get up. You have no control over you, but you do have control of your spoons.

Yes, Spoons! I have spoken of them before, but allow me to refresh your memory! Persons living with chronic illnesses have become accustomed to explaining how we are feeling, what we are capable of doing, and how much energy we have using spoons. We compare our illnesses to having spoons. Just as we don’t know what the illness will throw at us each day, we don’t know how many spoons we will have each day. Some days we awake with 12 spoons, while other days we awake with 5.

It is our job daily to assess the number of spoons we have and choose how we will use them. Expending energy depletes spoons. Whether it is something as simple as taking a shower or getting dressed, we still loose spoons for those activities.

It is imperative for our loved ones and friends to understand the use of spoons in explaining our lives because when the shift happens and we go from feeling well to feeling poorly, the way we use our spoons has to change.

What do I mean? If I start my day with 12 spoons knowing that I have to go to a dinner party tonight, I will expend my spoons carefully, allowing enough spoons to attend the party. When our health changes in a blink of an eye, we have to reevaluate how we will use our remaining spoons because flaring itself takes away quite a few, if not all the spoons we have. That dinner party may not be in our reach anymore. Our plans have to quickly change to adjust to our current condition.

We may have had every intention on going, but the illness changed the plans. We aren’t picking and choosing what we WANT to do. We have to count our spoons to see what we are capable of doing. We are not using our illness to get out of things nor are we sick only when it’s convenient for us. Yes, I have heard that line as well. Let me be clear; there is NEVER a convenient time to be sick. We don’t ever want to be sick. Do you?

I am here to tell you, I understand that your illness is unpredictable. I understand that you have to change your plans according to how you are feeling. I know you aren’t faking to get out of going and doing things. I know it hurts to hear people say things of that nature to you. I understand you can’t control the forecast of your life.

I do encourage you to maintain your spoons. Be smart with your usage. Allow yourself a few spoons hidden in your reserve in case your forecast changes. Don’t allow other’s perspective to deter you from using your spoons wisely. You may not be able to control other’s opinions and I know it’s frustrating that they don’t understand, but stay focused on your spoons and live your best life with the spoons you have!

Others may not understand, but I do and I am here rooting for you and supporting you all the way through this journey!!! We fight and win together!!!!

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Complaining Misconception

There is a misconception that those living with a chronic illness express how they feel negatively for attention and just to complain. Although there are some people who enjoy complaining, most of us rather put on a smile and hold everything in.

We spend more time faking that we are okay or well instead of sharing our true feelings to avoid judgement. We are aware no one wants to hear complaining all the time. We are aware that as a result of our illnesses, we aren’t able to complete or participate in many things, thus making life harder for you because you want to do those things in that moment. No matter how many times you say out of your mouth that we are not a burden, the look on your face when we say we aren’t up to something tells it all and then some. We rather smile and go with the flow despite how we feel to avoid feeling like we have failed you!

We don’t strive for attention or even want it at all! We don’t want everyone to know how sick we are because they start to treat us differently because they know. They either baby us or have something to say about everything we do. Yes, we are thankful that people care, but we rather not have a spotlight on what we are enduring.

If we do complain about something to you, it is for a reason. It can simply be because out of everyone in the world, we trust you with our vulnerability and truth. It could be that we are scared that something is going to happen and we won’t be able to express what’s going on in that second so we tell you earlier what our symptoms consist of. It could be that if we don’t express how we are feeling to you then you automatically think we are well when in all reality we are never well.

When you make comments about our illnesses or the fact that we are always sick, we shut down and start to resent you because it makes us feel less than and a true hindrance to you.

We are not complaining to hear ourselves complain. We aren’t smiling to be fake. We simply want to be understood without assumptions and misconceptions.

Our desire is to live a normal life. Our desire is to not awake in pain. Our desire is to have absolutely nothing to even complain about.

Try your hardest to understand the illnesses of your loved ones and most importantly don’t treat them like a nuisance, a burden or a hypochondriac. Take the time to learn their patterns, triggers and expressions and make sure you aren’t adding to their illness by stressing them out. Listen intently to what they are telling you because they are telling you for a reason. One day they may not be here to tell you anything, so take advantage of the opportunity to hear them out, understand them and help them win this battle. With your support alone they can rise above their current circumstances.

Check yourself and ensure you are only leaving a positive impact on their lives!!!

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Loving Me

Im loving the skin I’m in, flaws and all!!!

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Despite my many scars from surgeries, rashes from Lupus, ulcers, bruises, pain, hair loss, brittle and broken teeth, weight gain, etc. ; I am proud of who I am!!!

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My scars and flaws tell a story of strength and endurance no matter the situation! They tell a story of someone who has never given up no matter how hard it has gotten. They tell a story of someone who always finds her rainbow thus allowing her to stand boldly in the face of adversity! It’s a Warrior’s story!!!

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I love me!!! I’m proud of me!!! I support me!!! I encourage myself!!! I pray for myself!!! I praise myself and I will win this battle!!!!!

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Love the skin you’re in and be proud of your story!!! You are a Hero!!!!!

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Heed The Warnings

Beware of those who say they fully understand you, but their actions suggest otherwise. Those are the people who see your vulnerability and yearning to be understood and they take advantage of it.

Beware of those who claim they will always be there, but whenever you need something they have something imperative to do. Those are the ones who publicly want to be viewed as supportive, but in turn aren’t truly supportive at all.

Beware of those who claim to be a caregiver, but someone else is always taking care of your needs. Those are the ones who seek self gratification and desire accolades for being a great person when great is no where in their name.

Beware of those who say they love you, but take out their frustrations of your illness on you. Those are the ones who will shout to the world your praises in your presence, but complain behind your back to whoever will listen and always find a reason to bring up how sick you are to demean you.

Beware of those whose words don’t match their actions because their behavior has the potential to stress you out thus contributing to how ill you currently are.

Beware of the wolves in sheep’s clothing. They mean you no good, no matter how hard they try to prove to themselves they have good intentions and want the best for you.

Why am I telling you to beware of these people? I am telling you because I have watched so many cry, stress, become depressed and even kill them selves because they believed someone was truly in their corner and they found out otherwise.

Don’t wait until it’s too late to recognize the signs from these people. Reality is, red flags have been going up constantly, but you have been ignoring them. Yet you are wondering why you are flaring more, feeling more anxiety and even start feeling like isolating yourself from the world.

Beware of the warning signs. They say “caution ahead,” and it is up to you if you decide to heed the warning.

We as spoonies, go through different things daily with our health so we definitely don’t need anyone or anything adding to our already tough life.

Do you realize how important you are? You are your number one priority and you must treat yourself as such! When you view yourself as the queens and kings you are, then you will not accept anything less.

Reevaluate the people who are around you and make sure these people are truly lifting you up, supporting you fully, cheering you on, being helpful without gain, showing you by actions how important you are and how much you are loved.

You deserve that plus more my Loves! Please don’t ever forget it or allow someone to tell you otherwise!!! Beware!!!!!

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Your Influence On Our Lives

I need you to do something for me! After reading the next sentence, close your eyes and let it sink in!

YOU HAVE AN AUTOIMMUNE DISEASE THAT IS NOT CURABLE!

Did it hit you yet? Let me help you understand!

You have been diagnosed with an illness. The illness will never go away with any type of medication. The illness can be fatal. The illness will change your life and every aspect in it. The illness can take away your mobility. The illness can isolate you from friends and family. The illness can keep you from functioning as a regular person in society. The illness can provoke people to talk about you. The illness can destroy your social life. The illness can send you into depression. The illness can land you in the hospital. The illness can induce other illnesses. The illness can cause you to have surgeries. The illness can take your independence. The illness can take control and end your life.

Unfortunately, this is the reality of myself and many others. Be careful how you handle us because no matter what is going on in the world, everyday the Lord sees fit for our eyes to open, we face this cruel reality. Be patient with us because although you can jump right up and go, the illness doesn’t always allow us to. Be understanding because there will be many days we can’t get up at all. Be thankful for every moment you have with us realizing it could be our last. Be cognizant of how you speak to us because our minds are always occupied by our reality and the things you say have the potential to send us off the deep end. Be courteous to us realizing we are trying all we can to be the best we can be. Be proactive and prepare yourself for the unknown, just as we have to. Be considerate of our needs and try not to minimize things that are important to us because that thing just might be the reason we are fighting for our lives.

Yes, we are fighting for our lives. We fight morning, noon and night, 24/7 to live. We fight to have some type of normalcy. We fight in hopes that one day there will be a cure. We fight to prove to ourselves and you that we can make it! We fight our physical illness, mental warfare, emotional distress and spiritual weakness daily in order to keep running the race. It is an exhausting job, but we do it.

As you go through your days, be reminded of our reality and make a conscious choice of how you can positively affect our lives.

If you can’t be a positive influence, remove yourselves from our lives so you aren’t the reason we fail!!!

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