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!
6. Don't be a dumb ass. You have to listen to your doctor and your body. I have fought remarkably hard and I still get lectured by my doctor. However, my doctor is at the top of his field. I have laughed and lectured other doctors about being wrong though. I do not have a bone sticking out of my armpit idiot girl resident from three years ago. There is an idiot here, but it's not me! I have been with my doctor for 11 years and he knows me very well. He says something and I listen. Listen to your body too. Is jumping at the trampoline park really a good idea after you spent two days with a swollen knee? Do you get sick and feel worse after eating crap for a few days? Don't be a dumb ass - your body is giving you the signals to make some changes. Change your diet and see how you feel. I swear that you will survive two days without corn chips. (They are over there on the table staring at me. Just staring.) Hire an awesome nutrition coach. I know one if you need a suggestion.
7. DO NOT GIVE IN. Being diagnosed with a disease, suffering an injury, or just losing your way is not a reason to give up. If you want to lay on the couch everyday and whine about how shitty your life is, then do that. But don't wonder why your family is concerned, why you are gaining weight, why you suddenly feel even worse, why your kids aren't hanging around as much, why your finances are getting worse, etc. Get your ASS UP. Walk to the bathroom every hour. Walk to the kitchen. Walk to the mailbox. Turn the TV off and reflect/meditate. Here's a true story that I have only told to one group. I only told it because a lady was crying in the front row. (We are still friends.) My oldest had just started school and I was at home with my youngest. I was at my sickest and had started working from home because I couldn't load up the little one, drive and work all in the same day. Well, Haley Jane was a little spit fire. She needed to be right near you. And talked the ENTIRE time. I just wanted to sit and suffer but that couldn't happen. I finally figured out how to help us both. We had three trees in our front yard and we went outside. I concocted this ridiculous game with these trees. We would walk around the trees in varying ways. Once she learned the game, I would sit down. I would sit there and tell her what to do. Everyday, we went outside and played this game. I would sit down immediately and tell her what to do. I essentially just ran my two year old until she gave up. After a few weeks, I made a loop with her. Then two. Then we added the mailbox. Then we added the neighbors tree. It wasn't much to a high impact trainer but it wasn't me sitting on the couch. And yes, it hurt like hell. I was brutally sick, but I wasn't going to give in.
I had a great friend that gave up. She hired a driver if she ever got out, which was rarely. She hired a cook. She had a housekeeper. She had nurses that came to her. She hired a lady to do her shopping. She would shop online and find something and then have the lady go buy it at the store. She would then tell her family that she had went and bought it. She often told me that she was done fighting. She didn't even want to walk to the bathroom alone. She suffered greatly. She got up, walked to the bathroom and sat down and died on December 15, 2006. She was 51. Her daughter later told me that on Christmas morning, the family came to the house to have Christmas anyway. They had explained to the grand kids how they wouldn't be getting any presents from their grandmother because she of course had passed away weeks before and they assumed she hadn't purchased gifts. The families arrived and began having Christmas. Everyone had brought gifts and placed them under the tree. When they began opening, they noticed gifts addressed to the grand kids in their mother's handwriting. The grand kids began opening these gifts and they were prerecorded story books from their grandmother. Recorded in her own voice, all with a handwritten note telling them how much she loved them. There was even one for an unborn grandchild. I was at her house on December 10th and she gave me a Christmas angel that I still put out every year and say a prayer for her grand children that she clearly loved tremendously. I also ask her why she gave up. Why she didn't fight just a little harder. She was able to walk, eat, talk, cook, drive - yet she felt she couldn't. It was stated that she died from low blood pressure and complications from Lupus. It may be rude of me to say, but I feel she gave in to her disease years before and had stopped fighting. She did not have to die. Her husband was asleep in the bedroom and she never woke him up to say she wasn't feeling well. She always woke him up to help her to the bathroom, this night she didn't. Her unborn grandchild was born just three months after she died, she could have been there. Maybe it was her time to go and nothing could have stopped that. Or maybe she gave up.
I truly understand how hard it is to wake up "differently" than you used too. I understand the constant issues and concerns. I understand the incredible burden that is placed on your shoulders. I understand the desire to stop and give up. For some reason, you have been made differently or been given something else to handle. The most exciting part is that you can show your true strength and somehow climb out of this. I show my girls everyday that a mother can accomplish so much even with crippling issues. I may holler or react harsh on my bad days, but I also make homemade cupcakes with little ABC sprinkles for the first day of school every year. I may not have pushed my daughter for five straight hours 12 years ago on the swing, but she does get a birthday cake made by me each year. Most importantly, they have been taught compassion and independence.
So, despite your struggles, I encourage you to continue staying active and to fight for yourself. Do it for you, no one else. You are enough - I promise.