Flexibility
Change is a constant in our World; how flexible we are is the question. Change is scary and leads to unknowns. Lupus and its friends bring changes quickly and furiously. When you least expect it, Lupus comes out of nowhere and you must adjust. Yup you guessed it, I have never liked change, and now I’m an expert! None of the Lupus warriors choose this illness, the wolf comes along and can affect anyone, any body part in any place. Hopefully, my hints have given you a toolbox of things to sample with success. Forty years on my journey with Lupus, I’m more flexible when I flare because I must be. Sure, it takes some time to get used to it, but you can! My Dad used to tell me, “The one thing you can depend on is change”. As a type A personality this was probably one of my biggest challenges; accepting the changes Lupus made to me physically and mentally. My weight fluctuated like the tide, one day I lost weight another time gained weight. Prednisone is a feel-good drug, but I gained a ton of weight on this feel-good fix. Everyone I know gave me recipes for low fat recipes, thought I should work out more, wanted me to try harder to be in good health. Wow, people can be cruel. Finally, after 30 years on steroids, I’m Off! Yippee! The weight came off slowly and with me being mindful of my eating habits. How do you keep yourself sane in this world when beauty is only skin deep. I put notes on my mirror to lift me up in the morning. Have learned to give myself grace. Remember that I was a badass before Lupus and that person is still within me and with that drive I will live successfully with Lupus!
No one wants to be defined as the chick with Lupus, we are multifaceted beautiful, strong, kind, mothers, sister, aunties, and wives. At times Lupus will take a front row seat in your life- especially when you are in a flare or just feel terrible. You may need a day at home to rest, I call these days PJ days! It’s okay to take care of yourself. Many times, I have not felt well enough to keep my plans or go out. I’ve learned to take care of me. Now those that know me know I hate to miss out on anything so it sure was hard. I knew my husband or friends would go out without me. Ugh! I realized that for me to have rich moments in time; I must take care of myself now. You are in it for the long term, and you can do it! Oh man, a day to feel sorry for myself is a must every now and then and boy is there a lot to be upset about. I do take these Pity Party days. I take the day and then move on. I’m not particularly fond of the way I feel during a Pity Party Day, so I take the other road and make the best of my days. Look for the wins not the failures. Your score system has changed with your illness. Most likely you will not be able to do all you could do before your diagnosis. You are on a new chapter in your life and many things have changed. You now have a “new normal” and it can be a great place. I know you can’t do what you did before you got diagnosed so I do what I can do now. Everything counts! If just brushing your teeth and hair was all you could do today, good for you! Win! Win! I find it’s not the amount that gets done, it’s about the small things that most people take to granted. Wow showered and dressed and didn’t rest in between. You can only do you, try not to compare to someone else and it sure is hard in this world of social media and ableism society.
Living in a world that can go the moon, sure is slow to accept people that are different. I tried a clean diet, no sugar, no carbs, Mediterranean-Ish. Yes, I had more energy and did lose some weight. Certain foods are not good for Lupus such as bean sprouts, raw fish or meat, echinacea, anything that is not cleaned well and anything that boosts the immune system. Always clear extra vitamins and minerals with your doctor first! Some interact with your medications and some just interact with Lupus.
Fake It Till You Make It
At the beginning, I faked it till I made it but now I’m just too damn tired. It takes a lot of energy to fight through. So don’t fake it, be true to who you are and how you really feel. This doesn’t mean getting on Instagram and telling the world your every symptom and hurt, dang it would be a long one. Awareness of this disease does need to be shared and only you can decide to share what you are comfortable with. I’m not internet savvy so for me I lie low.
Know-It-Alls
Everyone will try to help you with their great ideas for healthy eating, trying the best new and tried herbals or yoga or some other unwanted advice. Take what you think you need. I find the helpers mean well but do not understand my illness. Not only not understanding but not really wanting to know more. Friends want to help but not to learn what I truly go through. I just usually thank them for the advice. If it’s something somewhat legit, I may look it up or ask my doctor. You will get that person that says, “I know someone who died of that.” Well, thanks for that, I still am hopeful because we are all different in our illness journey. Comments like that do not help but grow to be probable. Expecting respectful comments is not always the case.
Invisible Illness
Everyone is going to tell you, “You look great, you don’t look sick”. Why? Because I don’t have crutches, a cast or physical evidence of my illness. This judgement without facts often comes when getting out of my car in a handicapped parking spot. Simply because I can walk and “don’t look sick”. It is none of their business. This is when you choose how to respond. The comments are not helpful in any way, so I choose to respond with kindness. When friends say, “you don’t look sick” I prefer to just say, thank you. Lupus is here for the long term it’s not a flu or strep throat that goes away; it’s here and not going away. Most people get sick, they go to the doctor, get on antibiotics and then pouf – all better. With Lupus you go to the doctor and try to alleviate some of the symptoms, and it may take a few different Rx’s or suggestions to get you doing better.
I have been somewhat stable these last five years. I like to call my Lupus stable not in remission. Remission sounds like it may not come back, and all labs are great. Well, some of labs are great and medications I’m currently on are working well so my Lupus is stable.
