Whew chile, I'm tired.

It's been a minute, and I literally have had nothing to say. I've seriously been wanting to write something, but just couldn't think of anything to say... since today is World Lupus Day, I decided to write something raw.

So here it goes...

I can't remember the last time I felt normal. I want to relive those moments so bad. Waking up in pain every day and then still having to try to push through the day gets so exhausting. I can remember back before I had lupus, I went everywhere. I did everything I wanted to do. No restrictions what so ever. Old people like to call it, "living a care-free life".

Yeah... a care-free life! That's what I was living.

To this day, I hate to even think of how much I took that carefree living life for granted, because now... every day... I'm having to think and re-evaluate so much. What foods I eat, what activities I participate in, who, what, where, how long!? All of this. And again I say, it gets so exhausting!!

Sooooooo... even though I was diagnosed with lupus in 2011, I still have to go through a transition stage where I am literally trying to let go of what use to be and accept my new life, and this new disability. Even though it's been 8 years, I have yet to adjust to all the changes my body put me through!!!

It seems like every day, there is something though. I'm not even kidding. For example, I can go to bed and wake up and have a cramp in my hip that will leave me feeling temporarily paralyzed from the waist down. (I can't make this up and I swear I'm not being overly dramatic!) So having to be forced to slow down in the mornings and just lay in bed sometimes can just be so exhausting and mentally draining. Why? Because I do miss that freedom of just hopping out of bed and immediately starting my day. Now what use to take me 30 to 45 minutes to do in the morning, can take me close to 2 hours and a half.

I remember when I would be out in public, before lupus, socializing, and time would get away from me from having so much fun. I'll look up and before you know it, it's night time and I'm still full of energy. I think now, I check my watch every 30 minutes (ha!) Mostly because my body feels as though I've been out for hours and hours when really, I've probably been doing what I was doing for maybe 20 minutes. Again, it's exhausting because you have people that think I'm being anti-social when really, all my energy I have has been depleted and I need to get home. The worst thing about this sometimes is that my body wants to go home, but mentally... I'm wanting to stay. I'm wanting to be around my friends and out doing fun things. I miss out on so much because my mind and body won't agree.

Again.... I'm exhausted ya'll. Like, if there was a word that is beyond exhausted, I'm probably that!! Even though I'm ranting, and you might feel sorry for me after reading this.... please don't. To be honest, I'm blessed and I know it. I hear survivors stories all the time, and it literally makes me feel selfish that I take two seconds out of the day to even complain about my issues. There are people with lupus that have it worst off than I do. At least I am able to do some things, there are some fighting my same fight unable to do ANYTHING....my heart goes out to those wishing they could get out of bed and do normal things, because I know how draining it can be.

Today is World Lupus Day, and I am having a balloon release at the place where we meet for the support group. It's a small gesture to show that lupus survivors are not forgotten and to give them hope. To let them know to keep on fighting, and continue to let their voices be heard. I'm praying for a successful event.

Spoon Theory Explained (In Layman's Term)

You've probably heard someone fighting a chronic illness say, "I'm a spoonie!", or "I need more or I'm running out of spoons!" 

The reason why is, there's this thing called a "Spoon Theory"... it's a creative yet simple way for chronically ill people to explain to their healthy family and friends what it feels like to live with a chronic illness. 

Let me give you the background to how the Spoon Theory was created....

The spoon theory was created by a woman named Christine Miserandino in 2003. She is a lupus fighter. An essay was derived from the discussion between her and a friend when her friend asked her "what did having lupus feel like?" The essay then describes the actions of Miserandino, who took spoons from nearby tables to use as a visual aid. She handed her friend twelve spoons and asked her to describe the events of a typical day, taking a spoon away for each activity. In this way, she demonstrated that her spoons, or units of energy, must be rationed to avoid running out before the end of the day.

So, let me put this in laymen's terms for you...

If you only had 12 spoons for the entire day? What would you use them for? 

Before you begin, if you didn't sleep well last night, take your nightly medication, or you're feeling sick with a cold or flu, begin this assessment with only 9 spoons.

Each activity you do throughout the day, take away the proper amount of spoons. 

1 spoon each

Get in/out of bed

Putting on your clothes

Taking your vitamins

Watching television 

Reading

2 spoons each

Taking a shower

Combing and styling your hair

Studying for class

Responding to a text message or email

Surfing the internet

3 spoons each

Driving to work/school

Cooking and eating one meal

Light home cleaning (nothing that requires bending over)

Talking on the phone

Doing homework

4 spoons each

Being at work for 5+ hours

Being at the doctor's office

Cleaning (that requires bending over)

Exercising

Grocery shopping

Attending a social event

Now, you are allowed to go over the 12 or 9 spoons you were given at the beginning of the day, however, any overage will be deducted from the following day.

If you pay close attention you will see before your day has gotten fully started, you have already used 4 spoons to get out the bed, put on your clothes, take your meds or vitamins, and watching the morning news. Imagine trying to navigate through the REST OF THE DAY with only 8 or 5 spoons. 

A person with a chronic illness have to choose activities and events throughout the day wisely, otherwise, we crash! And there's no worst feeling than crashing with a chronic illness. It takes us 10 times as much longer to rejuvenate and get our energy back than a normal healthy person. The rest a healthy person receives in 8-hours of sleep only feels like 2 hours to the chronically ill (and I'm not even exaggerating!) On top of that, the flare-ups we go through can literally take away ALL of our spoons at the beginning of the day, leaving us spoonless for a whole 24 hours (or however long the flare-up may last). 

This also doesn't include if you are married with or without children, dating, or single with children because that is a whole other amount of spoons that will have to calculate to be taken away from you.

So the next time you hear someone with a chronic illness say they are tired, BELIEVE THEM, they are extremely tired and have probably used all of their spoons for the day. Take it light on them, and offer your help to get them through the rest of their day. Cook a meal and bring it over, watch their children, or offer to do their laundry... anything!!! Because everything we do while we are awake is slowly taking the energy from us, so if you could assist, we greatly appreciate it. Nothing you do is too small! 

Okay, I'm going to rest now... writing this blog took away some of my spoons for the day!😉

Don't Say This To A Chronically Ill Person

For those of you that know someone with lupus (or any chronic illness for that matter) all we ask is that you don’t say the following things:

1. “You’re always so late!”

The thing with having a chronic illness is that we are ALWAYS tired. Even if we sleep for 8 hours, we STILL wake up tired. Mind you, our body is constantly fighting to heal itself, and in the midst of all of that, we lack energy. We also move a lot slower than most people. I know when I’m getting ready it takes me about an additional 45 minutes to get ready than my husband. (I usually try to start getting ready before him so we can finish about the same time!) Any ways, we’re late because we are struggling to get there. We want to support you, be there for you, and attend outings, but our bodies won’t allow that sometimes. Please understand we are trying to be supportive and show our faces, just don’t be mad if we show up a little late… we really took every piece of energy we had to show up!

2. “Maybe you should exercise more.”

OMG!!!!!! If I hear this one more time!!!! So, truthfully... I am a person who believes that with a healthy lifestyle, you can feel better! HOWEVER.. don’t assume that I’m not trying to make better choices with my health. Let’s not forget about those with chronic illness that are unable to move around and exercise because it’s already so painful to just simply walk a couple of feet away. Stop trying to be my personal trainer!! Believe me, all of us chronically ill people WISH we could get up and move around more.

3. “You were just looking fine a couple of hours ago!”

And that’s the crazy thing about a chronic illness, you can feel fine just a couple of hours ago (and just to put this out there, we aren’t really fine… what you saw a couple hours ago was us faking and trying to keep it together) when we’re looking at our worst, it’s because it is to the point to where we literally CAN NOT fake it anymore. We are fighting this disease 365/24/7 and most of the time we are pushing ourselves just to live a normal life. Especially those of us that are married or have a family. Society doesn’t care that we are ill. Bills still have to be paid, family still have to be taken care of. There’s no sympathy for us. We push extra hard to seem normal and strong because we HAVE TO!!

4. “Do you need me to do something?”

This one is kind of tricky because it depends on the person, but If anyone else is like me, it’s very hard to ask someone to help me or give me something. Do us a favor and just do it. (haha!) For example, If you see that I’m stuck in bed and unable to cook, you can bring me a turkey sandwich from Subway!!!! I’m married, so my husband takes care of me a lot but for the chronically ill patients that you know are fighting this disease alone. Be kind and feel free to offer your help EVEN if they don’t ask for it. We greatly appreciate it, seriously!

5. “My friend has *insert another illness here* maybe you should try what she’s doing, it’s similar to what you’re going through.”

DO NOT!! I repeat, DO NOT compare my illness to someone else’s. No two persons are the same when it comes to a chronic illness. Someone you know may have cancer…. BUT cancer IS NOT LUPUS. Now that I think about it, honestly, two different patients that both have lupus aren’t even the same. This disease is so very complex and hard to understand. There are medical professionals that don’t even understand what we go through. So please, please don’t compare us to someone else’s struggle. We get that you want to help us, but don’t try to be our doctor, just be our friend.

6. “I never hear from you anymore!”

It’s because I’m sick and tired of being sick and tired. (Ha!) Every day is a struggle. It really is. We are mentally and physically drained… and some days we have to take time to ourselves and just get it together. We’re fighting every day to not give up and when you aren’t hearing from us, it’s ABSOLUTLEY NO offense to you… we’re just trying to balance all of what we are going through and sometimes that takes isolation. Send us a text message, shoot an email, leave a voicemail, write me a note and leave it at my door, it doesn’t matter!!!! Just don’t lose touch with us. We need you now more than ever!!!!

I hope this blog has helped those that don’t understand, get it just a little.

And although the list goes on, these are some of the main ones I encounter on a weekly basis. What about you all? Leave your thoughts in the comment section below.

Protecting Your Peace

I know it’s been a minute since I’ve written anything, forgive me. Life is getting the best of me! Ha!!!

But, this blog has really been on my heart for the past couple of days, and it’s about protecting your peace.

A popular page that I follow on twitter posted a question a few days ago asking, “What is something you’ve taught yourself?” and I responded with “Saying ‘no’ to protect my peace”. My mother use to always tell me growing up that I was a people pleaser. Although, a lot of my actions I did, I thought they were because I was doing it out of the kindness of my heart. Now that I'm grown, I’m starting to think, “Was I only doing things to please other people, and not myself?” I think we all sometime in our life subject ourselves to doing something for someone else, even when we didn’t want to, but because this was someone we cared about, it was hard to say no. But is that really people pleasing?

Since being diagnosed with lupus, saying NO is starting to become second nature to me now. Foolish me! I thought people I’ve done things for in the past would understand my position now when I say that I literally can’t do what I use to do. Side note: Ooooweeee, people will get mad if you tell them ‘no’, especially when you use to always say ‘yes’ to them. *ahem* Now, anywho…. But since now I am literally incapable of doing things I use to do, saying ‘no’ use to make me feel guilty. I felt like I was being unreliable or rude. Truth be told, sometimes I said ‘no’ just because I knew I had to protect my peace. Rather I was feeling sick or not, protecting my peace has become a priority to me now.

When I say protecting my peace, I mean avoiding things or situations that could possibly deter me from being productive. When I say productive I mean using my time to cultivate the dreams, goals, gifts, talents and abilities that I have to serve myself… in a positive way!!  This could mean, saying ‘no’ to attend a social gathering, or ‘no’ to helping someone out that you really care about. I’m learning that putting myself first is not selfish, it’s NEEDED.

Sometimes, I shut down. Don't log on social media, put on a playlist, grab a book and just kick my feet up, and enjoy me. It's funny because when my husband comes home, and if the house has music blasting through the windows before he pulls up, he already knows I'm in one of my moods. He'll kiss me on the cheek and let me be. When the music go off, he'll return with a "So, how was your day?" Ha!!! (That's why I love that man!)

I'm taking baby steps. I didn’t just jump in saying ‘no’ to any and everything, because it really is hard to do. It’s STILL very hard to do. I say ‘no’ and then turn around and second guess myself. Like, “Maybe I should go ahead and go to so and so, maybe it won’t be so bad!” or "Maybe I should do this for so and so, it won't take much of my time"… but every day is a learning experience and I’m determining which things and people I should say ‘no’ to. It's all a growth process. 

Because if you don’t protect your peace, then who will?

Working Chronically...

Not too long ago, I posted on twitter that Lupus patients are all super heroes. I said that because we are able to do things that “normal” healthy people do all while fighting a disease that is trying to keep us down.  One of those things are… working!!

There is a large percentage of people with chronic illness that is unable to work. My heart goes to those people because believe it or not, there is nothing a chronically ill person wants more than to be able to take care of themselves. Make their own money, have a sense of independence. Since being diagnosed, I have had my fair share of days being off work due to my illness. I’ve had to take breaks in between and because of that I sometimes feel like I could’ve been further along than I currently am. Don’t get me wrong, I am blessed to be able to hold down a full-time job (as of now), but majority of my lupus family isn’t so lucky.  What MOST people may mistake for lazy, really have no clue what a chronically ill person is going through.

Chronically ill workers may have problems in meeting job demands, they may experience physical, cognitive or sensory limitations, have fatigue or pain complaints or other disease symptoms. Psychological distress, depressive feelings, feelings of shame or guilt, lack of coping or communicative skills, and non-supportive colleagues and supervisors may add to work-related problems. It’s hard!!! But, I’m doing it. I feel a sense of pride when I actually make it through a full 8 hour work day, 40 hour week schedule without having to call in or crashing at the end of the week.

Here's a few tips that I use to make it through the work week:

1. Decorate your workspace with positive affirmations and pictures of people and things that motivate you.
2. Make your feelings aware to your co-workers & manager. You may have to sit with them and explain exactly what lupus is. Print out literature to share with your team about your disease if you need to.
3. Prioritize sleep. Make it number one. I usually try to give myself 7 hours or more of sleep. (That sometimes don’t happen, but hey.. I try!!)
4. Keep energizing snacks at your desk.
5. After you clock out, BE FINISHED!!! Leave work at work and when you’re off take that time to rejuvenate your mind and body.
6. Know when to step away and take a break. Go to the bathroom, step outside for a second.
7. Don’t be afraid to ask for accommodations. Most companies (and a lot by law) are willing to help you succeed in your position and if that means you need a stool for your swelling feet, back support for your lower back, a certain keyboard for your computer because you have joint issues… then ASK!!!!!

Now of course, everyone’s situation Is different. Some of us work in environments that aren’t so accommodating and work with people who are just flat out cruel. For those of you that do work in situations like that, I strongly encourage you to find another job. Work somewhere where you are appreciated and won’t have to feel guilty for having a chronic illness that YOU didn’t ask for any ways. Because let’s be honest, if something was to happen to you today, your company would go about their day and have your position posted on the HR board the following day. 

You’re the important factor here… put yourself first!

*For my chronically ill people who are unable to work… Don’t feel any less of a person because of a disease that has disabled you. During my times when I was unemployed I found other things that made me happy to confiscate for the loss of my job (whether it was reading, volunteering somewhere, advocating lupus online, etc.) I strongly encourage you all to do the same and to remain positive because you’re still the important factor here, and I’m rooting for you!

Am I Easy To Love?

We all know that being in a relationship is hard work. Both parties have to put in the work, to make it work. Not only are you learning to love someone else, but you’re also learning to love the baggage that come with them. In my case, my baggage is lupus. With lupus comes depression, insecurities, fatigue, doubtfulness, a sense of loneliness, and feeling like you’re unable to be loved. (That’s a lot to deal with right?)

So, my question to my husband is… With all this baggage I have.... Am I Easy to Love?

One thing that is the most difficult when you’re chronically ill and married is still having to cater to someone else besides yourself ALL WHILE dealing with the negative impact of your chronic illness. You have to fulfill your partner’s needs (both physically and mentally), be able to take care of your home & children, making sure that you are available to them when they need you to be. (And don’t add the extra responsibilities such as school, work, etc. on top of that)  All of this…. It’s very difficult to maintain it all because every day I’m already busy trying to fight for my life.

Sometimes, I feel like I’d be better off by myself, not subject my husband to the stuff that I go through. Because it’s a lot. It takes a toll out on me and him, and it just seems like my illness holds us both back from so much. We are both still young, I feel like newlyweds are supposed to be traveling, experiencing new things, taking random dates to exotic places, going on double dates with friends, planning a family, etc.  NOT always in a hospital room, or doctor’s office being worried that my test results are going to come back good or bad… NO WAY! That’s not newlywed life!!!! Our lives are not normal.

Every day it’s something, and each day we struggle through it and sadly, in the midst of all of this, the relationship takes some trying times because eventually, something has got to give. Someone is going to become mentally or physically tired. It’s draining. To always deal with the fact that tomorrow,  I may be unable to fulfill my partner’s needs. That tomorrow, I may not be able to go to work and earn the income we need. That tomorrow I may not even want him to touch me because I may be flaring up. That tomorrow, I may not be the Sharnae he married and fell in love with.

Every human being wants love (you’ll be lying if you say you didn’t) and I have that with my husband, I really love him. But am I easy to love back? I just don’t know.

Can Lupus Define My Purpose?

The dictionary defines the word purpose as “the reason for which something is done or created or for which something exists”.

As a person with a chronic illness, I struggle with what my purpose really is in life. Why am I here? And to do what? Every day when I wake up in pain, every time I receive bad news from the doctor, OR every time I have to limit myself, What the heck could my purpose be living like this?

I believe when a person is diagnosed with an chronic illness, they immediately try to think about “Okay, what did I do to deserve this?” and “Why me?” and that’s normal. We’re human. However, what we all have to remind ourselves is that we didn’t do anything to “deserve” what we are going through. Some way, and some how this illness is apart of our purpose.

I read somewhere that, “From the perspective of spiritual reality, illness is a step toward wholeness.” Let’s face it, whether you’re a lupus survivor, cancer, AIDS/HIV, Fibromyalgia, etc survivor, we didn’t consciously choose to go through this pain or deal with an incurable illness, however being diagnosed, the experience of dealing with these challenges can lead us on a journey that ultimately delivers great rewards. (This is me being optimistic, okay?!)

Living with a life-threatening disease forced me to completely reshuffle priorities and pursue new paths that have actually brought me profound fulfillment. Let me put it this way, Lupus gave me permission to make choices that I wouldn’t have considered otherwise. I know it sounds weird reading, lupus "gave me permission" but let me explain. For instance, I feel like I need to travel more, try new foods, create experiences that I would have never tried to pursue, all because I don’t want lupus to feel like it is winning. It changed my way of thinking, forcing me to make choices that would only make ME happy. 

I’m not saying my life is all “beautiful” and “lovely” because it gets hard. Every day, it gets harder. But I’ve got to get to a point in my life where I can accept this and make the best of it. Make the best of my life!