For the last couple of months I could feel that my energy and life outlook was changing. I didn't want to admit it, but the pain was getting worse. I couldn't run like I used to, I was getting more and more tired, I began snapping at my family and my depression was getting worse. After living with this stupid disease for 20 years I am just sick of it. I am sick of "looking normal" but feeling like I was run over by a semi-truck. I am tired of explaining what it means when I have a flare. I am tired of taking medicine for the disease and medicine for the medicines' side effects. I am scared of where I will be in another 20 years. A wheel chair most days anymore sounds like a dream. I have lost the joy of jogging and walking. It just isn't worth the pain anymore. I tired of feeling like just packing my lunch for work is like climbing Mt. Everest.
I want normal for my life. I want to not have to tell my daughter that she can't sit on my lap because it is too painful. I want to come home and have the energy to engage with my family. I want to come home and not freak out on my kids because the dishes weren't done. I want my children to live a "normal" life without having to do more than their age requires. Having a mother with an autoimmune disease makes them grow-up quicker than they should. I have to ask my 9 year to open jars because I can't. I am tired of feeling lazy or like a bad mom because I "just can't do this".
There is just so much wrong in my life right now, yet there is so much that is right! I have a home, a car, a job. I have an amazing husband, awesome kids, adorable grandkids. I have a great group of friends. Most importantly I have a God who looks past my complaints and comforts me where I am. Living with a chronic disease/illness sucks. On this earth, it never ends. I am glad to know that when I go home to my true home there won't be rheumatoid arthritis, or diabetes, or Lupus, or heart failure or HIV or any other disease. We will be healed and full of love and joy. Today, I pray, for a glimpse of that joy and peace in my life. A moment of pain free living - even if just for a moment.
When you see someone get out of a car with a handicap sticker - don't judge them. When you see someone with a service dog, respect them. We don't always know what is going on with other people. All we know is we all have our own struggles and we need to be compassionate to all! When you don't see my name on a volunteer list or even see me at all, understand that I just can't at that time. I want to volunteer for EVERYTHING, but I have learned over the years that my body cannot do as much volunteer work. It is so hard being humble and asking for help! I want to do all of it on my own. I don't like feeling helpless in life. I don't want my kids to remember their childhood as mom never doing anything. So, give grace to me. Give grace to others like me. We may look like we are all together, but most likely we aren't.
Unless you have gone through what we are going through, try to refrain from "advice". We know all about the new diets, the no gluten, no dairy, no meat, no sugar, low carb, etc. diets. We have all googled things like "Rheumatoid Arthritis anti-inflamatory" or "vitamins to help with chronic pain" or other things. I know you are trying to be helpful, but it just reminds us of our pain. Instead offer meals, or help cleaning, or watching the kids or the best - prayer. We always need prayer. Pray for good days, for extra sleep, for us to be less reactive or for some peace and quiet. Honestly, don't tell us you know someone who knows someone who has RA. Obviously you know someone - me!
Thank you for reading my post today. If you are someone or knows someone who struggles with chronic or acute pain - remind them they are not alone!
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