I absolutely loathe the existence of this disease. I would give so much to live a normal lifestyle again. No more sleepless nights in pain, no more having to lay awake begging your dose of “emergency only” pills to actually work this time. No more crappy immune system that’s attacking itself or my joints. There’d be no more wondering if I can wake up feeling like I used to before my first signs. No more crying, just crying, because you don’t know what to do with yourself anymore because the pain can get so bad that you daren’t move an inch, yet you know crying only makes it worse because it stresses you out and stress is a cause of the Lupus flare ups.
You list all the negative impacts it has on your life. How it affects your social life when you don’t want to go out because you fear your rash will look hideous if noticed, or that you’ll suffer a bout of severe pain and have to go home, lay in bed.
You push yourself to do things through pain, yet it’s only a matter of time before you burn out.
You question why this happened to you at all – but then when you take a deep breath, relax as much as you can and say “why not me?”. You know there are people out there worse off. No, that doesn’t help. You can’t compare your feelings, nor your pain, to anyone else’s. You are an individual.
You realise that you have good friends, they understand you, not on a personal level, a sympathetic level, and they bring the damn party to you.
You appreciate people doing things for you.
You learn to joke about your condition, you even make inside jokes about it amongst your friends.
You set up a blog to let people know it’s okay if they feel like this.
You know you’ve now got a purpose in life, so you stop moping and try help others.
This is my life. This is how others have to live. This is hard. This is a challenge.
Life wasn’t meant to be easy.
This is the harsh truth of living with Lupus.