I am going to be stepping up the blogging from now on...I have a bit more time in the evenings and life has somewhat settled down. So I will be back with vengeance and continue on with my mission to begin a new life as open and honest as possible about the driving force that is Lupus....oh the joy!
Today's post is fairly relevant to where I am currently at in my future outlook, starting with keeping my eyes open telling it how it is!! So I wanted to let you all into my little lupus secrets...we all have them, so now is the time to share them. So here you go, this is my life with the wolf...time she was tamed!
1. I rarely say how I truly feel for fear of being judged.
A common theme amongst many of us, using the phrase "I'm fine" all too often. Here is the problem though, I don't want to moan about how I feel all the time and no one wants to hear that either. But there has to be a balance. For me it is choosing the right people to tell at the right times, I need to feel comfortable enough with someone and safe enough, to admit how I truly feel. Those people that I do trust when I am in my darkest moments know who they are, they also know that sometimes when I say I am fine, I really am fine.
Once you get to know me, you will be able to tell when I am holding back how I really feel. Maybe it's that tell tale wince when I try to stand up, the pain that reads across my eyes in the morning or the fact that I am so close to tears I have to leave rooms unexpectedly...which does happen from time to time. So if this happens and I say I am fine...just know I am not, but I equally don't want to talk about it.
2. Lupus is a part of my being that I have embraced.
Embracing the illness and letting it rule you are very different things...understanding the difference is easy, but applying it takes some serious hard work. In my life there have been many moments of ups and downs, as there is in everyone's lives...chapters end, doors open and the book begins again...however by far the hardest thing I have ever had to do is not let lupus take over my life. Oh it tries and it tries hard; the constant pain, fatigue, nausea, fevers, tremendous amounts of drugs and the constant niggle that it is there, makes it so easy to give in and let it do its thing.
So, I chose the hard path...well someone has too I guess. I chose to fight the wolf with every ounce of my strength, I chose to change my life to let it in instead of hiding way from it, I chose to love it as a part of me. Why? Well because it's not a flaw, it's not a separate being and it is nowhere near as powerful as my mind!
3. The pain is unbearable and is my worst enemy.
I rarely moan and many people have said this is because I am a strong person...but they are wrong...I don't moan because most of the time if I did I wouldn't stop. Pain is a miserable, lonely and all consuming part of lupus; probably the number one thing that makes me depressed at times.
Recently I tried to explain the pain to a friend of mine who has just had a baby. She mentioned the pain of childbirth, but then the amazing joy you receive at the end. She wondered what it is like to be in constant pain, so I tried to explain. When you give birth, not that I know the pain, you experience it to the hardest degree, in waves that push you to the brink of your pain threshold, but at the end of it you hold your child in your arms. I said imagine constant pain, with peaks and troughs, the teeth gritting, unbearable pain that never stops and with no prize at the end....that would get anyone down!! Well this is my life, you cannot explain it, you just have to ride the waves.
4. I don't like sympathy.
I don't know about you, but I don't enjoy sympathy. It makes me feel uncomfortable and also points out that there is a reason for it. It makes me feel bad for worrying someone else and makes me feel a little guilty for needing it. Now, I know that sometimes sympathy is needed...if you stub your toe or have a terrible hangover...then it is nice to hear a kind word or two. But for me, when I live this everyday I prefer no sympathy, just empathy...there is a big difference between the two.
I need the empathy of others...an understanding on a different level, so that when I say I am ok, you know that I am not.
5. I am me and I shall not apologize for it!
Possibly the most important thing on this list...and here is why. I am Cass, I am 30, I like to swim in lakes, I love animals, I believe in unicorns, I read all the time, I write for a living, I wear vintage clothes, I live for music, I love passionatly and openly, I climb trees, I prefer blue to pink, I live my life with lupus...this is me! All the people in my life accept me for who I am and that is not Cass who has lupus,that is Cass. So if you are meeting someone with a chronic illness, whatever it is, let them in for who they are...not who you believe they should be!
