Lupus, to me feels like having the flu every single day. Lupus is not necessarily a death sentence, but it does feel as though it is sometimes. The aches and pain can wreak havoc on your life. Simple tasks can seem nearly impossible when you're flaring and in pain, with a fever! Not every one can handle discussing the illness with you. For some, ignorance is a large factor. There's no reason for any one to be ignorant regarding Lupus any more. Chances are, you know someone with the illness. The responsible thing to do is research! Don't assume anything when it comes to a Lupie! What I hear a lot is, "Well, you look sick." I've learned to just smile and walk away. There was a time when that statement would just drive me crazy! It was like a punch in the gut. Sometimes I would say, "Well there are some dead people in the morgue that still look good as well."
A person's appearance has nothing to do with whether or not they feel miserable. You have to keep in mind that people with Lupus do not have the flu! What we have is an EVERY DAY thing! Life goes on, and none of us can just sit around looking like they really feel all the time! Despite our illness, that may consume our lives, we have responsibilities, families, children, jobs, spouses, ect. And even our biggest supporters and partners, no matter how empathetic they may be, do not understand exactly what we go through! If you don't have Lupus, you will never understand the life experiences of the persons with it!
I have discovered that with having Lupus, you have to be very careful who you discuss your illness with. Some people are narrow-minded. Some treat you as though you're an invalid. I don't always want to be asked how I'm feeling! Truth is, how I feel can vary from one day to another. Every day is a crap shoot, so to speak, that's what makes it difficult for a Lupie to work a full-time job or go to school. Some days, I wake up feeling as though I'm normal again. Then, there are days when I wake up feeling like a truck hit me!
The weather plays a large part in how a Lupie feels as well. Changes in the barometric pressure can precipitate arthritis pains and fevers. Lupies usually know when bad weather is coming. Now I know why the old people always talked about the weather and their hurting bunions and such!
For me, controlling my weight and pain are of primary concern. I have a difficult time functioning in severe pain. For most of us, pain is the norm, but severe pain is incapacitating and depressing, at times. Once you get the pain under control, you can get along with your day and do what you have to. I mentioned weight control because sometimes we may have to go on steroids and other medications that cause weight gain. Steroids also cause bone depletion. With Lupus, comes bone and joint pain, and with excessive weight, comes more pressure on joints and bones, so it would be wise to try and maintain a healthy weight.
Mental health and happiness are a must for anyone with a chronic illness. When it comes to my life and how I handle my affairs, it's important that I eliminate any sources of stress and drama! Life got much easier for me, when I cut certain toxic people and influences out of my life. It wasn't easy at first, but in the end, I benefited. There's no time or energy for "people pleasing" and being abused and mistreated. For all those that don't love you for who you are, and embrace and support what you want to be, leave them alone! That time and energy should be used in more positive ways, like healing!
Live well and love your Lupie!