Something always brings me back to you… it never takes too long.
I am so sorry, body! Give me another chance! Let me live, and I promise I will be so nice to you! Remember how we used to dance the night away? Remember how wonderful it felt to hike to the top of a mountain and look down over the valley? How we used to love living! Do you remember picking up your babies, and holding them for hours? Climbing on the playground! Playing tag?! Do you remember how you loved me? Please, body! Love me again.
How many times have those of us with chronic pain had this begging argument with their body? How many times has your heart broken because you simply because your body will not give in, and you cannot do all the things you truly wish you could? The things you SHOULD be able to do. Most people don’t understand that even getting dressed in the morning, let alone showering beforehand, is such a great accomplishment. I have been having a battle with my body lately. We are ‘fighting’ again. Oh, how I hate fighting with my body! “PLEASE! I swear I will be so good to you! I promise I will be careful with us today, please just let me go to work!” I lost this argument for a full day once this week, and was two hours late because of that same fight today. We simply could not come to an agreement on Tuesday, but today we compromised with loose clothing, no makeup, a ponytail, and a knee brace. It was the only way my body was going to let me go ANYWHERE today. Giant mug of coffee in hand, fruits on call (as my body HATES food right now, but fruits provide energy) off I went into the office. My boss was not happy, my body was even more upset, and I was… I was an emotional wreck. Not only did I have to hold my body together to manage today, but I had to go to work, dragging the ‘one’ I fought with me. This fight continued throughout the day, and I tried my hardest to just be me. Imagine getting into a fight with the one you love, having your heart hurting from it, and than having them dictate your entire day. You may have won, but there is that constant reminder that as soon as you let your guard down just slightly, you will be crushed. My body breaks my heart every day, and I am stuck inside it, begging it to just let me be ok. Let US be ok.
It may sound silly to think of your body and yourself as two different entities (though spirituals may already feel this way). To feel like your body is a vessel, but it has a mind of it’s own. It is deciding what you can and cannot do with yourself. Want to do a normal every day activity? Ok.. but only one! PICK! Do I.. go to work or take my kids to the park? Do I do a load of laundry or a load of dishes? Do I do my hair, or my child’s hair? Do I bath myself or my children? Do I rest now and pray I can get back up, or keep going until I collapse? These are not decisions that one with time should have to choose. I am losing a battle with my body right now, and I am so hurt by it. My heart aches from the betrayal. I am so tired.. so so tired. I am tired of compromising with myself. I am tired of telling myself I am ok. I am so tired of the pain, the missed work, the messy house, and the overall hurt! I am tired of my heart aching for the loss of myself, and my “Dead Horse”. I am so very, very sick of it. Deep inside I know that this is just a flare, and once it passes, I won’t be feeling so defeated, but right now I am so SO tired of it.
I don’t want to compromise.
Tonight is one of those nights that I am feeling the weight of the world on my shoulders. It was my youngest’s birthday, however we had her party over the weekend, so nothing truly special went on. She got to pick what we watched before bed, and I let her have cake for dinner. Four year olds love cake for dinner. I let it slide. However, that is not why I am feeling low. I feel down due to another reminder of my painful reality. The reality that is inside me, that controls the world around me. The broken, damaged, and corrupt inside.
I had little to eat today, as I had over done it over the weekend and caused myself so much intestinal pain I could barely move yesterday. I ended up with intestinal bleeding again, and this meant for multiple trips to the bathroom. There is something so depressing about such abnormal things becoming such a normal thing in my life. Excessive bleeding from any orifice should (and would) be alarming to the average person, but to me it has become a common thing. This has been happening more and more with me, and any time I over do it in any way, I begin to bleed. Work. Playing around with my kids. Lifting, moving things. Anything that involves exerting myself causes my to bleed. This is nothing short of depressing, and I can tell you that tonight I am feeling it.
This morning I was not only bleeding, but I was also quite swollen. My eyes were puffy, my fingers the size of sausages, and my arms were splotchy from the pressure of the edema. I noticed a new cyst on my nose, and the remains of the cold sore that broke out over night, and took over what feels like my entire bottom lip. It hurts to move, to eat, to even speak, but off to work I went. I did consider not going into work for a few minutes, but reminding myself that the woman who runs the Human Resources has an odd vendetta against me and without hitting my 40 hours in a week, she wouldn’t think twice about pulling my insurance out from under me. SNAP! My impression of that awful woman yanking away the only thing keeping me afloat at this point. I understand that it is a technicality, and she isn’t completely responsible, but she is a very cold and harsh woman, thus causing the very thought of missing work and having to deal with her more unbearable than dealing with the pain. Put on a smile, and get out the door! A little extra makeup will cover the bags under your eyes, and the new hair color will mask any other possible changes that are noticeable.
I was right. Nobody noticed, and it is not as if I want them to. I know I am a downer when I talk about my illnesses. I know I am a downer when my 10 bottles of pills fall out of my purse at work, or I have to take my pills at my desk. I know people look at me and think, “What a hypochondriac.” I don’t think people realize what it takes to get up every day and do this. To put a smile on my face. To get myself, and two other people prepared to face the world each morning; To get in my car and actually make it to the three locations I must hit before work. I don’t exactly want them to, but I also don’t want them to look at me and think that I am ok. I don’t want either. I don’t want to be looked at differently, but I don’t want my struggles to be brushed off.
Tonight I am feeling heavy. Sad. Fuck it, tonight I am really really sad and I very much hate this body I am living in. Tonight I can feel the pain all over. I can feel the sores, I can feel the muscle pain, I can feel my insides fighting against my entire body. I CAN FEEL THE DECAY.. and it is making me very sad. Very, very sad.
I am sad inside and out.
Sometimes I forget that it is ok to accept and admit defeat. It is pushed so hard on people to “stay strong” and “never give up” that people feel like a failure when they admit they are not able to do something, myself included. I have been in such a denial of my inability to do certain things, that I think I am just making myself worse some days. This week has been one of which many pleasant things have happened (spending time with my ‘Disgruntled White Guy’, which I can go into later), but I have also been so emotionally and mentally busy at work, it’s been draining. I often feel like being physically drained after sitting at my desk all day is so silly. I get up periodically to keep my joints from stiffening. I stretch and I lean, letting my muscles feel change for a bit, then go back to work. However there is something else that I should really accept, and it is that emotional and mental strain can drain you physically as well. The stress of keeping my clients happy, as well as dealing with managing my team, website audits, and addressing issues as they arise (which, let’s face it, Google changes daily) can, and has, put strain on my body as well as my mind. Yesterday was a long day of dealing with clients who seem to forget that they know nothing when it comes to this industry, and I have worked hard to stay up to date and be as much of an expert as I can. It can be quite frustrating when you are being told how to do your job from a person that can’t even log into their website without help. There are oft times where I have literally wanted to bang my head on my desk.
Yesterday was nothing short of a rough day. Not only was it snowing non stop, which was killing my joints and causing almost tear worthy bone pain, I was running audit after audit, and research for my clients, as well as for others. I was up and down from my desk all day with small issues that needed to be addressed. I am almost positive that I have a sinus infection, but I am trying to treat it with a neti-pot, and hoping the small dose of doxycycline that I am on will assist in stopping it from getting too bad. Cross your fingers for me. I really don’t want to spend the money to see my Dr again, and I REALLY don’t want to add to the pills I am already taking. My knees were on strike, my back was aching, and my eyes were dry. I have a headache almost daily, which I can handle, but with the sinus pain and the stress of having to explain why even though Google is a non stop crawling algorithm, they are not ranking on the first page yet, it was extra harsh. I can’t help but want to go “Because your site sucks, you are not well known online, and it takes time to build a reputation, Moron!! Let me do my fucking job and you just go plunge a toilet like a good little plumber!”, but I am almost positive I would get fired. That would just add more stress to the already complicated life of this Positive Pessimist!
Once I was home I immediately half laid on my couch, as my sleeping 13 year old shifted over to let me in. My legs ached, my head pounded, and my feet felt like they were splitting in half. The bone pain throbbed through my thighs, and my back screamed in agony. I guess it did not like the half laying down position. As I convinced my mini me to move off the couch so I could let my body recover, stretching out in the full laying position, she asked me the question nobody in such pain wants to hear. “What’s for dinner?” EFF! Tonight I was supposed to go shopping, not only for groceries, but for my little girl’s birthday presents. My littlest girl is turning 4 on Monday, but we are having her party on Saturday. It was now Thursday night. Sitting up I considered running to the store, however my body immediately objected. Pain shooting through my arms, legs, feet, and fingers while my head pounded and a whirl of dizziness started to take over I succumbed to the pain and laid back down. Feeling a small child climb on top of me, I screamed out in pain. When I am sick, and feeling ill my little girls like to lay with me to help me feel better. Most times we are get comfortable fairly quick, and it is not an issue. However today every little touch felt like hot burning coals on my skin, sending pain shooting in all directions! My poor little girl jumped off me while tears ran down her face. She was only trying to help mommy, and here I am screaming out and scaring the poor girl. As much as I wanted to get up, wrap my arms around her and make her better, my body simply would not move. All I could muster while the tender spots left by her little hands and knees burned was and “I’m sorry. Mommy hurts.”
In moments like these it is almost impossible to not admit defeat. I wish I didn’t have to pop multiple pain pills just to get through the rest of the night. I slowly dialed the local pizza place, and put in an order. I wish I could have gotten up and cooked for my children. I wish I could have made pasta, meat, veggies, the works! But instead I laid on the couch, pain meds and exhaustion pulling me into a much needed slumber, and admitting defeat. My body has won again over my very much persistent and prideful mind. I tend to forget that there is a war going on inside me at all times. I forget that though others look at me like I am fine, I am not. That though I don’t want to admit it, I have to manage my “spoons” more efficiently. Admitting that I even have “spoons” is more than I would like to acknowledge. I want to run, I want to cook. I want to play with my children in the snow, and create wonderful childhood memories. Instead my body is slowly shutting down in ways I don’t even realize until it is too late. Instead I have to sleep. Instead I have to order pizza, and do the one thing I don’t want to do. The one thing that this prideful, and determined woman has to do.
Instead I have to admit defeat… and admitting defeat is sometimes more painful than the rest.
As a chronic pain sufferer, this speaks to me on a level, that as she explains, can only be truly felt by the sufferers.
I’ll never forget the day I first set foot into the Pain Management Center at the Mayo Clinic. I was about to enter an entire new world I knew nothing about. I had completely run out of options on how to cure or manage my pain and knew in the back of my mind this was my final shot. However, I was angry. I did not want to be a part of a program whose philosophy was to “live with the pain” instead of “curing the pain.” It is hard to forget calling my dad from Minnesota arguing with him about getting out of this program I had been accepted into. He had been there with me through my brain surgery that occurred in my young teens and had spent years taking me to every doctor possible to cure my chronic pain. He had seen me at my lowest, watched…
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It all started with waking up to two little girls jumping into my bed, poking me and yelling with excitement, “CAN WE HAVE CEREAL?” – Waking up on the first day of a new year at 9am, my alarms far past going off and me sleeping through them again, girls jumping all around me, and a terrible headache. This headache wasn’t from drinking or partying too much the night before, as I spent New Years Eve night alone with my sleeping girls, and a few small glasses of wine. It was simply that the weather is changing (Again – Thank you Utah weather), and this is causing pain and stiffness in my joints. The difficulty getting out of bed slowed me down much more than I had anticipated, and even just putting on pants proved to be a challenge, but I did it. It only took about five minutes from the time I started bending my knees, stretching my fingers, and basically bending everything that bends in order to prepare them for the day. Funny how people don’t realize what preparation goes into getting out of bed for someone like me. The amount of effort is alarming. New Years Eve day had it’s own difficulties that likely very much played into the issues I was then suffering.
New Years Eve day was spent on the couch watching my little girls play with their new toys. They were behaving quite well, minus the random fights they generally have. Girl Spawn #3 is only slightly bigger than Girl Spawn #4, though they are 3 years apart in age. This proves for a lot of face to face arguments, an over abundant amount of tears, and more time out than I would prefer. However they were getting along, so it wasn’t too bad at all. I had planned to go see one of my dearest friends and her new adorable offspring. A beautiful little baby girl, whom I already love so much, and if I didn’t have my own minions to take care of, would visit every day! We planned for the girls and I to show up just after lunch. My body, however, had different plans. Sitting on the couch, I realized that the swelling in my abdomen that I woke up with had not dissipated at all. It is common for me to wake up with some stomach bloating now and then that slowly eases up. The reason I noticed the swelling was still present was due to the pain that had begun to increase. Obviously pain is not uncommon with me, but this pressure and pain together was slightly alarming. After about 20 minutes, I realized I had felt this pain just a few weeks ago, and had actually ended up in the ER out of fear.
One thing about having chronic illnesses (regardless of which one you have), you start having “normal” abnormal symptoms and learn what to do with them. Since my visit to the ER, and then a followup with my Dr, I knew that the “normal” abnormal bleeding I was experiencing was to be monitored. I knew I had pushed myself too far, and had irritated my insides. I needed to rest, drink liquids, and simply take it easy. I knew what to watch for, and when to head out to the Dr. Luckily I was fine, just as I was last time, but this obviously thwarted my plans for the day. A sad but common truth that I have to face on a regular basis with the ridiculous that is my body. Sometimes I feel like the real me, the REAL body I have, is stuck inside this strange body that developed over and around the one that I know so well. I feel like I am inside myself, and that one day this “pain” will melt away and I will be me again. Fresh. Healthy. Strong! Logically I know this isn’t the case, however on days like New Years Eve, I can’t help but have… hope? Dreams? This is probably emotionally unhealthy, but I can’t help it. Who would be able to? But I digress.
Once I was downstairs, had given my girls breakfast and sat down on the couch to rest my feet on the coffee table, I saw that I had a message on one of the dating apps I am on. (Don’t judge me) – The message proved to be nothing, and even borderline insulting. The dirty messages that some men send over the web is just ridiculous. Do those really work? I can’t imagine. As I was about to click out of the app I saw a picture that caught my eye. A black and white photo of a man with short, soft looking hair flipped up in the most casual way, aviator sunglasses reflecting the world in front of him, and a half smoked cigarette sticking out of his mouth. I am such a fool for good photography, especially of handsome men, so I just had to click on his profile. I scanned through his photos; A loving father with his adorable little son. A manly beard covered face, taken from such an awkward angle I cringe, though I have to forgive this photo due to the pure excellence of the one that brought me to his page. Skimming through his “synopsis” I found his self description quite refreshing, though very simply put and straight forward. I like straight forwardness. Without much thought I sent the following message:
“Your picture needs to have the caption ‘Badass Extraordinaire’.”
Quite amused and pleased with myself, I moved on, closed the app and turned on my laptop. I was going to check up on some work emails, a few personal items, and maybe play one of my geeky video games. My body hated me today already, so it was time to just relax and try not to upset it in any way. Just let it relax and get over the unpleasantness that ensued the night before. January 1st, 2014. This is supposed to bring new hope, and new life. Everyone has new dreams for the year. Set new goals, and feel like they have started something new! I, however, do not feel that way. It is simply a new month. I new number for tracking the rotation of the Sun, the Seasons, etc. I understand the symbolism, and though I have felt it before, I do not feel it now. Not saying I have nothing to look forward to, I simply did not feel the freshness of the year starting, and the “clean slate” positiveness I even felt on the verge of 2013. I take my life one day at a time right now, and January 1st was just another day… until..
I grab my phone and low and behold, it is a message from “Badass Extraordinaire”. Taking a look, and expecting a simply “You’re funny, thank you.” type of message, I instead got a longer message both thanking me and inquiring back, asking for more about me. I gave a quick little answer, and a “How about you?” reply. Generally I find that men on this site are either overly zealous about my pretty face, or overly pervy about my curvy body and thick lips. I am that redheaded, thick and curvy Irish girl that people think would be fun to.. well.. bang. I know that assuming that everyone I talk to is going to be like that is being grim, and I did initiate the conversation, so I just carried on. About 2 minutes later…
Hmmm.. Grabbing my phone off the end table, I saw it was him again. I then happened to notice I like his screen name. “Disgruntled White Guy”. HA! Nice. I opened the message, and to my surprise it was quite long. Reading through the message, I found it quite endearing. It was genuine, sweet, and very personally informative. I was interested. I text back.
He was interested. After back and forth off and on for a few hours, I decided that it was annoying to go through an app to talk this much, and offered up my phone number. I hadn’t had quite an enticing (and un-sexual) conversation with a man in quite awhile. Most times by this point they have at least made one sexual innuendo, however he had not. This was a genuine conversation, a real conversation, about who we were, what we like, and what we are looking for. The back and forth was quite entertaining. Then came the phone call. Then back to texting… and another phone call. All in all, I spoke to this man almost the entire day of January 1st, and then into January 2nd. By the time I got off the phone (3 1/2 hour conversation), it was well into the night, and just after 1:00 am. I got off the phone feeling invigorated, and pleased. I haven’t felt this kind of connection with someone since.. well.. since my “Dead Horse”, and even then it didn’t click like this until we had known each other for a few weeks. Though I was physically miserable all day long yesterday, I was emotionally alive and interest peaked. I was.. excited.
This morning I woke up late for work. My joints were stiff, my legs were sore, and my body just didn’t want to move. It took me over 45 minutes to completely come out of the exhausted trance my body was in after the last few days of pain and suffering. Crawling out of bed, I headed down two flights of stairs into the basement where I had left laundry in the dryer. Once the clothing was acquired, I attempted to climb the first flight of stairs. My right knee buckled underneath me, I felt the muscles scream, the joint lock and then release. HOLY HELL! It hurt SO bad, I collapsed onto the stairs, turning my body just right so I fell on my hip instead of my other knee. The twisting motion sent shooting pains through both legs, and my muscles seized. Both legs tingled, and I could feel the energy drain from me. I pulled my phone out of the pocket of my pajamas. 8:04 am. Here I was, already 4 minutes late for work, stuck in my basement and nobody to help me up. With my oldest daughter out of town visiting her father’s family for the school break, it was just me and my two baby minions. I was finally able to get myself together, climb not only the first flight of stairs, but eventually the second. I was able to get two children dressed, myself ready, and make it to work only 45 minutes late. To most, this seems like a long time, and not something to feel good about, but to me.. this was amazing.
Since I had arrived so late, I immediately took to getting to work. I pushed through all of the emails from the holiday break. The audits I needed to assign. The spreadsheets I needed to create, etc. A few minutes after I arrived at work…
My heart jumped, and I am positive my face lit up. Looking at my phone, it was him. “Badass Extraordinaire”! – “I’m sorry for keeping you up so late, I was worried about you getting enough sleep and making it to work, but I really enjoyed our conversation. Do you realize we talked for over 3 hours?.” – I couldn’t help but plant a ridiculously cheesy grin on my face. My body ached, my head hurt, but my heart was happy. I had hot coffee, a good job, and sweet man that I couldn’t get off my mind thinking about me just as much as I was him. I can’t help but feel a little flicker of hope that maybe this is.. maybe this is the start of something. Maybe..
And it all started with a photo…