A Blessing and a Curse

Sometimes God works in mysterious ways.  Over the weekend, my parents delivered an entire week (or more) worth of food; prepared, cooked, and ready to heat and eat.

Here is a photo of our feast, which includes chicken, meatloaf, vegetable soup, lasagna, breadsticks, beef noodle casserole, beans, organic salad, and more.  YUM!  Needless to say, I have been eating a lot more than usual this week, trying to replenish some of the nutrients that my usual poor eating eating habits have robbed me of.

As I have mentioned before, I often follow an anti-inflammatory meat, dairy, and gluten free diet.  However, this week I will be treating myself to what whatever I want to eat.  Honestly, I haven’t been sticking to my diet in quite a while.  I think it’s OK to stray from the diet sometimes and if someone else is preparing a meal or we are eating out at a restaurant, I typically indulge on whatever I like.

I think my parents worry about Billy and I not eating enough, which is a reasonable worry considering the fact that I’ve lost 35 pounds since my chronic pain became constant.

They also know that both Billy and I battle with such severe pain and fatigue that, during an acute flare-up, simple tasks like cooking can quickly become impossible. 

Over the weekend, I mustered up the energy to clean up my kitchen a little bit.  It’s far from spotless, but it’s clean enough to use (which sadly it often isn’t).  Because of that, I have also been able to put my NutriBullet to good use and have been adding even more vitamins and minerals to my body with a NutriBlast between meals. The only downside is that my digestive system is not used to this much food so I have been battling some issues with that but I think it is better to eat than not to eat. Part of the reason that I don’t eat much is because it causes an increase in my abdominal pain so I’m trying to learn to eat smaller portions more frequently rather than the standard 3 meals per day. I am also about 75% sure that I have an ulcer, which further complicates things but I started treating it with Famotidine and switched to Nexium today, so hopefully this medication will heal it, if it is actually an ulcer.

On Sunday evening into Monday, I started feeling really bad.  The extreme fatigue set in along with sore muscles, lower back pain, neck pain, and just an “off” feeling, almost like I had a fever.  I thought I might be coming down with something, since so many people at work have been sick lately.  I also had a bad feeling that it could possibly be early signs of a really severe Endometriosis flare-up.  I knew that if it was the latter it was going to be unusually bad because of the severity of the symptoms I had been experiencing from the Sunday until Tuesday.

Well, today I woke up to the all too familiar excruciating abdominal pain along with a belly swollen from inflammation. Endo Hell had arrived once again. I knew in that moment that the sickly feeling I had over the past few days was definitely caused by Endometriosis. As usual, during Endo flare-ups, I was completely bed-ridden for most of the day.

First thing this morning, it was all I could do to reach for the phone to type a quick e-mail to my boss letting him know that I would not be in today. For some reason, the e-mail didn’t go through so he had to text and call me later, to make sure I was alive. Once I got that cleared up, I stayed in bed, writhing in pain, pretty much all day. I did set my alarm every hour and a half so that I could log-on to the City procurement card system to approve purchase requests, which is a task that I try to take care of from home, even when I am sick, so that my boss doesn’t have to cover for me too much.

I wish there was a way to describe the pain of Endometriosis, which has evolved for me over the years, and seems to be endlessly progressing.

Even though the most acute flare-ups tend to happen right before or during the menstrual cycle, it is definitely not a cramping sort of pain. It is MUCH more severe than any cramp I’ve ever had. I guess the best word I can think of to describe it right now is piercing, along with stabbing and tearing. I recently pinched a nerve in my neck (I think) which left me with severe piercing nerve-like pain in my neck, which initially radiated down my shoulders into my arms. That pain was somewhat similar to an Endo flare-up (although much less intense) except that the neck pain would come and go and changed depending on the position of my body or how I moved. My Endo pain doesn’t change much during a flare-up and encompasses much more of my body (abdomen, pelvis, GI system, lower back, and even upper thighs) which can make it very difficult to walk or even sit up at times. It doesn’t come and go. It just sets in, grabs hold, and doesn’t let go until it’s ready. Usually somewhere between 3-5 days after it begins.

The good part about the timing of this is that because of my wonderful parents (and maybe a higher power looking out for us, knowing that this pain flare-up was on the horizon) my hubby and I will be well-fed despite my incapacitated state right now. I don’t have much of an appetite when I’m in this much pain but the fact that we have lots of food ready to heat and eat will make it much more likely that I will force myself to eat at least once per day.

I hope that I will be able to return to work tomorrow but unfortunately my flare-ups usually leave me unable to get out of bed, much less work, for more than one day. Whenever I do go back, whether it be tomorrow or the next day, I will still be in much more pain than anyone will know.

I always feel guilty when I miss work but I feel a little less so when I think about the severe pain that I endure on a daily basis and know that 99% of our other employees wouldn’t even consider trying to work in the painful state that has become my new normal. I honestly try my best every single day and I think I do well under the circumstances.

I’m learning to push through certain flare-ups when I can and do essential tasks from home when I can’t. I almost always push through my facial pain now. I have learned to live and work despite it but Endometriosis is a different story. Peritoneal pain isn’t something you can just push through via willpower or endurance.

I know there will always be certain people who will look at me differently and may never understand my illness, what I go through, or how hard I try and push myself to function. I know there are people who think “we all have pain” and can only associate chronic pain with the normal aches and pains that everyone has or acute pain that heals and goes away. I understand why it would be hard to understand unless you have lived with it.

Most people can’t comprehend having something hurt as bad as an abcessed tooth or a severe migraine that never goes away. All most have experienced is making a doctor or dentist appointment in the event of acute pain, at which point the origin of the pain is discovered, treatment is received, and in a matter of time, the pain is gone and life returns to normal. It’s hard to fathom having an experience that starts out like that but after countless appointments, medical treatments, and exploring every avenue available, the pain never subsides and you never fully get better no matter how hard you try. That is life for someone who has a chronic illness that has no cure. We do not want pity but we do want understanding, empathy, and compassion.

Knowing that most people can’t or don’t want to understand has always been hard for me but I am trying to worry less about what other people think. I am trying hard to replace any guilt that I feel with pride because I AM proud of myself for learning to live and work with this invisible illness and chronic pain. My goal is to tell our story, even on bad days like this, when it takes several hours, breaks, and naps just to complete a single blog post while stuck in bed with my meds and heating pad. By achieving this goal to help raise awareness, maybe someday people will start to understand. I believe that makes me a warrior.

Wishing you all a low pain level day. ❤