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!