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.
