One of my talents- I am a master of disguise when it comes to hiding pain. Am I proud? Sorta. Does it bring me comfort? No. I am a personal trainer, group ex instructor and fitness blogger that manages to put on a strong front while in ridiculous pain. I've written about this before and I have also spoken to many groups on this topic and have managed to compile some data. When I walk into a room to speak, I generally can put you into 2 groups. 1. The give up group. 2. The wants to give up but will die swinging group.
In my years of having Lupus and belonging to several support groups, online and in person, the one's that have lost their battle are always in the "give up" group. Always. Maybe it's a coincidence for me but I don't feel it is. They have the sad, I don't care look. They don't care what they eat, how they survive, they are just trying to survive somehow. This is a bad and lonely place.
I'm going to hopefully push you to the other "fighter" group. There are some things that I do and have taught people in pain for years to do that has always kept them on the fighter side. Don't worry, you can walk over to the other side occasionally, just don't hang out over there.
1. Grieve. This took YEARS for me to master (or sorta kinda). I'm not sure I can even speak on this because I've done such a pathetic job here, but pretend I know what I'm talking about. It's imperative that you grieve for your life that you thought you were living. If you have been diagnosed with something as debilitating as Lupus, regaining your life just as it was years ago is probably not going to happen. I'm sorry to say that but it's just a fact - your life is forever different. Take time to grieve that fact properly. Grieve that adorable, spunky sweet girl. The one that could climb hills and hills. Is she forever gone doomed to a wheelchair? NO. I swear. After years, I can say that I am in better shape than before my diagnosis. It's painful and sucks ass, but I can do it. Allow your family time to grieve as well. They are also losing one way and needing to understand the new way.
2. Find your inner strength. Trust me here. You're going to need some major strength and it has to come from you. Unfortunately, I have tried every approach possible and I have learned that you can't put everything into your spouse or children or doctor. Or cat. I go through spells and I will actually say, "I'm hunkering down, so let me do it my way." My partner - oh geez! That tactic does not work well. But, after several years, we have found a common ground. The pain and stress are remarkable and I have to shut my outside world down at times or I won't survive the day. It isn't a jab or direct hit at him, I am turning my survival mode on. I have no idea how I've managed to still be standing, but I believe it's because I have something within me that has managed to take over. And when I have gained some strength, I will walk back up to him. He has adjusted to my strategy finally but he has also shown me that I can't handle it all alone at times.
3. Find other "fighters." Let me introduce you to some of my friends. We all have severe health problems and we have managed to find deep friendships with each other. I have two great friends, Alanna and Katina. We all have the same doctor and spent time in chemo together. What's the difference here? If you randomly open my phone and see our group texts, you would be wildly surprised. We are honest at all times with each other. One will nicely ask 'how are you' to the group. And we answer with a barrage of explicits about what is truthfully going on. The others listen and encourage with the same amount of explicits. We just understand. We laugh when one of us goes down with something major, again. I told them that I dislocated my knee and several weeks later, I sent a message about my recent issue. "I guess I broke my neck." The comments and laughs that came back were fantastic! It was funny people! I was getting hurt every single step I took for months. It became hilarious. My partners at the gym started laughing too! It is so stupid how much we deal with at times and sometimes you can't help but laugh. We also are better researchers than most. Fighters surround themselves with knowledge and they aren't afraid to use it! Find a group of fighters and they will be your best asset. I have put concerns on something out to friends all over the country and they have responded with answers and things that I have taken to my doctor. I knew of a research drug being studied before my doctor. Fighters find ways to survive no matter what. Learn to be a fighter.
4. Know your limits. This is a brutal reality. You have to know your limitations and what is going to hurt you in the long run. This is something that sucks the most. Chronic sufferers live each day with something nagging them and we will go to great lengths to quieten this. Unfortunately, it never quietens. Spend a week in the sun, spend two weeks feeling like you were hit by a truck. Eat bad for a week, it will take my stomach three weeks to level out. Go heavy in the gym and I'll spend weeks with a swollen knee. It truly hurts when I have to explain why I can't do something. It makes you feel like you actually are sick. Ironic. But, you have to find your limits. My oldest daughter would ask to swing all day, every day. "Swing, please," she would beg. No one understood, but I actually lost the mobility in my right hand for almost a year. It hurt constantly, but I hid it well. The thing that hurt it the most, pushing a swing for some reason. I tried everything. Pushing with my hand closed. Pushing only with my left hand. Pushing super hard several times and then stepping away to rest my hand. I tried bribing her with sugar. Toys. But, all she wanted to do was swing with me pushing her. I started telling her no. It was the only way I felt I could help my pain in my hand. (I do still have terrible guilt about not being able to play with her. I imagine that she doesn't even remember this.) Either way- I knew my limits.
5. Do your best. I have tried all kinds of approaches to feel better. Hello... I am a personal trainer that works in a gym full time. And I hold a Nutrition license. It's imperative that you continue to exercise and eat healthy. I have had several doctors tell me that the only reason I am not crippled (their word, not mine), is because I have always worked out. Insert the fighter group again here - The fighters continue regardless. Maybe we are masters of our pain thresholds or maybe we are just fighters. Or maybe something happened in our childhoods that taught us this vital skill. I happen to believe that it has to do with your surroundings and support systems. If you treat me sick, I will show you not sick. If you treat me not sick, I will eventually show you sick anyway. But, do not remind me because I can do as much if not more than you. Even sick. I live with my reality everyday and I don't need someone reminding me. I will talk to you about anything if you ask me nicely, but I'm not going to discuss it on my own. Because, unless you feel my pain or live with me, you will not understand how hard I try to do my best each day. In my years of speaking to chronically ill patients, I can also tell you this - we hurt more just knowing that we are affecting the people close to us as well. By bringing it up, you are reminding us of this as well. I can say that I truly do my best every day. I may sit down and play on my phone at work, but I'm really trying to divert my attention away from my pain. I may have an unorganized pantry with random foods in it, but if I can't cook tonight, my girls can find something. I may have pulled a random pain pill out of my boyfriends glove compartment last week that I hid in there for emergencies. It was an emergency dear!