One day when you are in my shoes i want you to feel and see my pain. The fact that you cant see it on my face or should i say the little bit that you can see on my face like the scars that looks like i was burnt is nothing compared to what i am going through.
My Lupus diagnosis and life thereafter is still a bitter pill so swallow. I must add that when i am with people i take on this new persona of not letting anyone see my pain, my heartache and my hurting. Don’t ask me how i got to this point but i am there now and somehow it helps me, its almost as if i am talking to myself. I am past the stage where i fight with God, wanting answers, having the need to understand why this is happening to me. I am on my own, doing my own thing and i am working on accepting my new life. Maybe i am not meant to have all the answers, so why bother?… what loving person in their right mind will do this evil to someone???
Its not love when you put someone on the earth and make them believe in you for 40 years and then you leave them out to dry. Love is not closing doors the whole time when you are fighting the system. Love is not looking the other way when we fight for a cure.
What does the bible say?
1 Corinthians 13:4-8
4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, and always perseveres.
8 Love never fails.
Where do i start? If this is love then what is this thing called life that i am living? Have i failed somewhere?… or have someone failed me?
I don’t want to be an example… i don’t want to be the light at the end of the tunnel, i don’t want to be your warrior… i just want my life back!
Yes i am still angry, i never said that i wasn’t. I am angry because i am dealing with a lot of people who are exactly where i am, who have lost it all, who are merely existing, who is also fighting the system, how can i not be angry? How do you deal with losing loving, caring people on a daily basis and not be angry?
I am angry that i had to put my hopes and dreams on hold, i am angry that my life as i know it is going backwards, i am angry that my kids have to suffer and be traumatised by my disease, i am angry that i always stuck with one option or none, i am angry that i cant blame someone for what i am going through, i am angry that God have left me all alone to suffer in silence, i am angry at the universe, i am angry at life, i am angry at my family, i am angry that theres a disease called Lupus and im am angry that i am stuck with it…
i cant drink my favourite coffee Jacobs anymore, i cant eat my favourite breakfast museli anymore, i am nauseous 24/7, after 13h30 my body becomes stiff and sore and my voice dissapears because i am tired and i need my next batch of meds to get rid of the water, i cant walk long distances, i itch all over my body till i am covered in red hives, the sun and sweat stings like bees, i am so dizzy that i cant walk in a straight line, i still pull over and cry to get rid of all my hurt and anger inside,my mind is a smatry box mess so much so that i dont talk some days i just have no words, most days i cant talk because my mouth is filled with mouth ulcers, my eyesight is fading, sometimes i overeat to fill this gaping whole in my tummy and other times like now i cant eat at all.
People with aids get 12 extra leave days, people with cancer gets time off and more understanding because who don’t know about these diseases, when you have Lupus, you fight for anything and everything. You can’t get policies, you can’t get payouts on your existing policies all you do is fight fight fight… the whole time explaining to people as to why you should be eligible for the benefits of the system.
Try sucking it up when you are fighting to keep your job, when your salary gets reduced, when you can’t buy all your meds, when you have to wonder how long will you be able to have a roof over your head, when you are constantly in pain, you go on and try to convince yourself that you are not going crazy, when you are sick in bed for days and days, when you can’t use the stairs like you use to, when you have a disabled sticker, and and and… You go try and win a fight between your mind, your heard, society and the world.
I am angry because there’s no cure, there’s no help, there’s no system to help you deal with this disease called Lupus, there’s no understanding no here’s no empathy, no hope, no future, nothing… it’s me against this world. I am angry because I’ve lost so much and continue to lose things, i am angry that my kids are denied a normal upbringing and i don’t know how long they still will be able to cope with this.
The best i can do is NOT to think, not to wonder, not to ask and not to speak…