*** Disclosure: One Angry Spoonie***
“The phoenix must burn to emerge.” – Janet Fitch
On day’s like today, I allow my anger to consume me. If I hear one more time ” your letting lupus get the best of you” or ” it’s not worth being mad” one more time I believe the repercussions would be catastrophic. So instead I will hibernate, for the benefit of those that I love.
Unless you walk a day in the shoes of a person with Chronic Illness you don’t know what it’s like to see “failure” on a consistent basis, or to have something control your life. I love the positive people out there, or the people the preach they have “recovered” from their chronic illness. To be honest, I am happy for them but if reality/honesty was served like a cup of coffee they would take a moment to say… “I am in remission for (insert length) but there is no guarantee. I can get the FLU tomorrow and my chronic illness can light up all over again!” Now that right there ladies and gentlemen is the damn truth! The only problem I find with the people that ooze only positivity is that they aren’t being REAL. Here it is, LIFE HAPPENS and your ENTITLED to get angry about it!! It doesn’t mean to live in the anger but you are entitled. Its a natural emotion that stems from other feelings of frustration, helplessness, and sadness.
When I share my frustrations I normally get someone that wants to share their positive light, of which I can appreciate. Let me make something clear though, when I am angry… I am entitled. This does not mean I am negative, this does not mean I am depressed, this does not mean I am hardheaded. What this means is, I am human!
Today, I had to make a choice. I had to prioritize in a difficult way, I had to ask myself which part of my future is more important. I had to make a choice that was both most responsible and wouldn’t waste so many spoons that I couldn’t salvage my body from the havoc. So I made it. I made a decision to take care of me, but at the cost of adding a semester to my college career. This was not a failure to the college but more of a failure to myself. To me, this is the ultimate failure. The type of failure that makes someone lose a piece of their soul. I was so angry I started to cry. Cry not because I was injured but because my chronic illness strikes again. For 3 straight weeks this semester I lived in a brain fog. I suffered from on going migraines, body pains that debilitated me, brain fog, shakes, spiked fevers of 103 or higher. I am still in the middle of a flare up but not of that magnitude. Unfortunately, the damage was done. Yet again pushed to make decisions that I would not have had to make without this damn wretched illness crapola!
Nevertheless, I am alive… Breathing (although wheezing) … and can at least muster enough energy to get PIST OFF! So I have something working for me!
Till next time my peeps!
Fiery Undefeated Diva
Thank you Undefeated Diva!
I was diagnosed with Lupus last Dec 2014. I had been going through the black hole of grieving, fear, and pain. I have been digging out…looking for the positive. I stumbled on your blog, and it has brought me some peace. This post meant a lot though, because it made me see that it is ok to get angry at times. That anger does not always live in the black hole. It can be expressed with the ability to move on the next day. You seem to have a great support system in place. I do however have a question for you. Have you ever had anger expressed towards you, for daring to have Lupus? For not being able to do things for people, or family that you have in the past? I have a supportive husband, but that is about it. You really see who is willing to stand beside you when times are tough. Is it common to experience this?
Dearest Lupus Linny!
Let me start by saying, I AM SO SORRY FOR NOT GETTING BACK TO YOU SOONER! (The creation of life consumed me!) Please accept my sincerest apology. I will say I am truly blessed to have thee most beautiful support system, but I would be lying if I said my disease did not wear on the support. I think it is only natural for it to wear on people that care about you. I will say you are without question right, something like this really shows who is truly there for you. My support system that stands now is not who I thought it would be when I was diagnosed. I was thee social butterfly, I had a booming career, and could be found surrounded by “friends”. Let’s just say that quickly dissipated after my diagnosis. Early on in my diagnosis I would cancel on outings or obligations I had due to my flare ups. Without question it weeded out people VERY quickly. It was a tough situation to lose people that you shared life experiences with.
Looking back now, I am so very grateful for the weeding process. It felt very lonely but I realized I did not want to live a life with people in it that did not have my best interest at heart. I found an amazing support system in the oddest place, INSTAGRAM! There is a huge following for chronic illness on there and now they are some of my best friends.
Stay strong and know that there are people out there that understand. 🙂 Don’t forget to thank that honey of yours for being awesome!