A whole month has arrived, existed, and then bid us adieu since I last posted. February was a topsy-turvy month full of sickness, discouragement and isolation with welcome glimpses of hope and joy along the way. It wasn’t without love, comfort and encouragement but it was certainly shrouded in a bit of gloom. All that chronically ails me saw fit to overwhelm, constrict and keep me down enough that I am beginning March feeling woefully detached from family, friends and the rest of the world. It is hard to express how infuriating it is to exist when you combine passing illnesses with chronic illnesses and to truly relay just how sick of being sick I am.
I miss out on so many of the things that make life full, and the interactions that bring a sense of belonging when I have to nope out of situations. My brain is constantly running a flow-chart of if-this-then-this scenarios before I leave the house, sign up for events and commit to any social interaction whatsoever. It makes me come across exceedingly misanthropic, unreliable and disinterested when I have to check out of life so regularly.
The rapidity with which an Endo, IC or Fibro flare can creep up on me is alarming. Even with watching what I eat and which activities I participate in, I am unable to prevent every type of flare up. When a flare does roar to life inside of me, I feel guilty to the marrow because I wonder what I did wrong. It’s this cycle of gnawing “Oh no, did I push myself too hard yesterday and ruin today? Did I eat something I shouldn’t have?” I remember one Wednesday night I was cleaning up the remnants of dinner when my abdomen decided to bloat so rapidly and painfully that I ended up curled up in a ball with my heat pack, while my husband whisked the kids away to church for me. I had been dressed, had my bag ready to go, but my body said, “Yeah…no. You’re not going anywhere.” My poor daughter’s eyes were wide with concern when she saw my abdomen painfully round out to look like I was about four-months pregnant. The poor kid confided later that she was afraid it wasn’t going to stop growing.
I have a nerve-conduction study scheduled for later this month, to hopefully get one step closer to alleviating the pain in my right hand that has rendered it largely useless since December. Well, I can use it for a time, but the pain only increases with each keystroke, with every glide of my pen, each time I lift something or carry anything, or try to undo or do up an article of clothing, etc., etc., etc.!!! Yes, that means this blog post’s creation is causing me grief. However, the itch to create is strong, and it hurts me in a different but not less tangible way to be unable to yield to the cry to express my heart with paint, paper and the written word. So, here I am…venting, pouring it out, and throwing whatever sticks to the page in an effort to alleviate some of the burden weighing on me.
I had to reschedule a surgery in January because I was running a fever and feeling poorly. I continued to feel mildly for weeks afterward, never feeling down and out but not feeling well either, on top of my all-too-familiar flu symptoms that crop up as part of my flares. I was still feeling a little more rundown than usual when I went to pick up our daughter from her ballet class one cold, February evening. It was already long-since dark as I made my way down the highway and the problems started. The pain from gripping the wheel with my right hand partnered up with the lightheadedness of not feeling well, to increase the anxiety I was experiencing simply being behind the wheel. This soon gave way to the sensation of being unable to take a deep breath. By the time I pulled into a parking spot at the YMCA my brain was blasting sirens, messengers were running around screaming, shields were up, and I was on red-alert against…myself. Anxiety’s fun! Anyway, my dear little boy had come along for the ride to keep me company. He saw the tears pooling, he heard my rapid breathing, but he didn’t know what to do for me. He’s twelve and learning to regulate his own emotions so I didn’t expect him to. I just explained, as best I was able, what was happening, and tried to reason with my unreasonable brain. There was a fleeting moment where I almost called Raymond and said I needed him to come on his motorcycle because I didn’t know how I was going to drive. Instead, I called my Dad. He probably had a heart-stopping moment when he answered cheerfully and heard my sobs on the other line, but he rallied quickly once he knew what was happening and walked me through some exercises to get my thoughts quieted.
My heart was also crying out to my Heavenly Father the whole time as well. I was mostly quiet during the drive, concentrating and reminding myself to breathe, but when I pulled into the driveway of my home my Dad talked a little bit longer with me to encourage me and make sure I was okay. I realized that my hand had locked up, the angry one, and I couldn’t open it all the way. Then I tried to stand and that didn’t go well either. All of the anxiety of the panic attack took every pain I was already feeling and amplified it. My sweet, little boy, who shouldn’t have to carry such a weight on his shoulders, did just that, though. He offered his little arm to me, and looped it around, helping me get to the front door before my knees gave out. He helped me back up again, and led me into the house, then ran back out to get my purse, and to make sure all of the van’s doors were closed. My daughter just felt lost and wasn’t sure how to help, and I understand that too. I don’t think that even I know what I need sometimes!
The point of all of this, is to just say be patient. I have three people who live with me, my husband and our two kids, and even they don’t fully grasp the nightmare that living with chronic incurable illnesses is. How much less do people who aren’t living here understand? I can be fine one moment, and down the next. My definition of fine is that I am functionable, not the same as healthy. I am never healthy. Sometimes, I just get worse.
Today alone, I didn’t feel great after a night of disrupted sleep and nightmares, but we had family come over for an impromptu visit. I was curled up in my chair trying to be still and rest because I am fighting a cough (which isn’t playing nicely with my bladder issues), my body was on fire and itching because I missed my dose of hydroxyzine, and I was also paying for trying to tidy my art room yesterday with increased full-body pain. Then bam out of nowhere I got hit with an intense cramp in my lower abdomen. It lingered, then released, like mild contractions. This kept happening in waves to the point I was contemplating running upstairs and curling up in a ball on my bed. Forgive me, not running…moseying to the stairs and then likely crawling up the stairs once out of view is probably the more accurate visual. I have crawled up that staircase an embarrassing number of times.
Still, I try to push myself because I don’t want people to think less of me. All of the parents of the girls who participate in the ballet performances at the theater pitch in and help with set-up, concessions, ticketing, clean up and all of the activities that need to be done to make the week run smoothly. At the end of the last run,I took down Nutracker ballet costumes, reunited accessories with their proper outfits, collected all of the random items left behind by the girls, collected name tags, and walked everything from the dressing room upstairs downstairs, whilst clinging to the tiny bit of solace that two Ibuprofen could offer my body. When that wee bit of reprieve ran out, I bowed out of helping with anything else at the theater because it takes a good hour to two hours for the medicine to really help any. It felt awful to be leaving while everyone else was just taking a lunch break, but when I climbed into the van I yelped when I sat down because of how much it hurt to do that simple action. Despite knowing this of myself, I drove away full of guilt that I hadn’t done more throughout the week and on that day. A little TMI? (Skip the rest of this paragraph if you’re squeamish about womanly “monthly gifts”.) My cycle shifted and threw off the start date, and instead of being underway already by the time slot I had volunteered to help for, it was just beginning. I always have to consider my cycle because some of my symptoms get ten times worse leading up to, and during, my period. The pain that comes with it is immobilizing but so is the nausea, the fatigue and the insane mood swings!
So, if you don’t see me at church, or my nephew’s soccer games, or volunteering for everything, know that it’s not a decision made lightly. If I only had to contend with anxiety, I could manage more often. If I only had to battle with nausea, then I would find a way. It’s the barrage that takes me out. It’s the weight of always being sick and the knowledge there’s no end to it. I’m only human and sometimes, I just can’t power through all of those layers. By the grace of God, there are days when I am able to. This gives me hope that He will give me strength in those moments. I just don’t always know when those moments will be. I make plans, I pray for the best, and sometimes that means I get to enjoy a ladies event at the church with my teen daughter, and other times it means I am a mess, writhing in pain, missing out on a gathering I wanted to be part of. Though, when I missed out on a bridal shower for a young lady in our church, my daughter came home and played some of the games they had played with me so that I didn’t feel completely left out. (I got some decent points for the contents of my purse!)
I don’t have a super pithy, encouraging line to wrap this up in, I just needed to get it off of my chest. My hard isn’t someone else’s hard. Their hard isn’t my hard. What powering through looks like for someone else, even with the same conditions, can vary. I remember looking around the church one Wednesday night and thanking God for everyone that was present because everyone faces struggles; I will never know exactly what battle each of them had to fight at one point or another just to be in that room with fellow believers on that particular Wednesday night, but I am thankful God gives us strength beyond human measure. Some days I am too weak to accept it, my anxiety or depression wins out, and some days I accept the grace that says, “It’s okay to rest” when my body fails me. Regardless of whether I can show up for life or not, I just hope that no one forgets I’m here and more than you know, I wish that I could be there more often too.
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