The worst part of my chronic illness isn’t the pain, feeling shitty, or the endless meds and doctors appointments… it’s the bone crippling loneliness. The world is going at a hundred miles per hour around me while I sit still. Friends go on and grow while I sit stagnant.
I have no consistent social life since I can’t work. I can barely commit to anything because I won’t know how I will feel and I don’t want to let people down by canceling. I could go days with out interacting and that is so fucking depressing.
This lack of interaction creates a couple of emotions…
1. Insecurity: You see everyone out doing fun things or growing in their careers… yet you can’t participate. You start telling yourself horrible things about why people don’t want to hang around you. You’re not able to keep up with people and rarely are people willing to slow down for you. You quickly start believing your worthless.
2. neediness: you start CRAVING connection. It’s like your body and brain go through withdrawal. You start pestering friends… pestering to the point they hate you and leave you. They have jobs and have no idea why you could be so lonely. Don’t get me started on how you’ll feel about canceled plans… you won’t have your normal reaction of “thank God I can just stay home and rest”. Instead it’s “I’ve been looking forward to this social interaction all week… it was the highlight of my week!”. You will feel disappointment like you’ve never felt before… because your brain has turned into a needy bitch.
3. absolute loneliness: you are left with your pain and illness as your only constant. Your brain starts playing tricks on you. You start to realize you’re not a part of society any longer. The world has moved on with out you. It doesn’t need you any more.
4. crippling depression: Your world has come crashing down. Your brain just can’t function normally. You become this hyper emotional creature from the depth of hell that is a dark shadow upon the light of the world. Being on huge doses of pain meds doesn’t help either. You unlovable at times.
Expect friends to leave you. This was the hardest part for me. Friends can’t understand what you’re going through. They have their own lives… their own struggles. One by one they will leave you. That’s okay. They have lives too. You can’t expect them to move at your speed. My own husband couldn’t handle it. If a spouse can’t handle it how can you expect a friend to handle it.
The emotional aspects of having a chronic illness or chronic pain are worse than the physical aspects. I long to work in an office or group again just so I can have a social outlet and feel productive. I’m thankful for the couple of friends who can handle my crazy when it kicks up. I’m thankful for those who haven’t turned their back on me. I’m thankful for those who remember “hey Elizabeth might want to join me/us”. These are the people who will get me through.
Some days… like today… I can feel his breath on my neck because he’s so close. I can feel his presence in my every task as he waits. He waits for the inevitable. He waits to do his job of taking my soul from this world. The reaper is my only constant companion these days. Death is my only commitment.
Some days I talk to him. I tell him I’m ready. I’m ready for the pain to end. I’m ready to go to my final destination. I can feel the inevitability of it all. Some days I’m at peace with it all. Some days…
Most days I hold on with every ounce of life and yell at him that I’m not ready… that I never will be. I still have days where I feel alive and I cling to those days. Those are the days where my mind and body decide to work.
I know my time will come… I can feel that it’s probably soon. I spend my days cherishing moments… I focus on trying to reconnect with people. I hate being alone… it reminds me that I will die alone.
I’m afraid… I’m afraid of what happens next. I pray for it to come quickly and just end the never ending pain and emotional struggle. Yet I am afraid of dying.
I pray I’ve touched a life or two. I pray I’ve helped the world in some way. I pray I’m not forgotten… I mean I’m forgettable even alive so I don’t imagine my legacy will go far. So I wait… I wait for death to take my pain away.
This is not the blog post I wanted to make but it’s one that I need to make…
Today is bad. Today I don’t want to leave my bed because I’m in so much pain. Today I honestly want to die. I had a run of good and decent days so this was bound to happen. Last night it hit like a brick and hasn’t let up.
I feel like every time one of these bad days hits it knocks the wind out of my sails. Every time my body hits this wall I wonder how many more bad days I can take. At what point do I say enough is enough?
When you know your most likely never going to be healthy again you realize your life is literally just enjoying the good days as they become fewer and fewer. Yes most days I can get out there and slap a smile on my face pretending things are great… but that’s not how I feel most of time.
So how long does one suffer? How many bad days does one face alone in bed while the world moves top speed around them? It’s funny how when you feel like this how many of your friends forget you. It’s easy to forget someone who has to stand still. It’s easy to walk away rather than stand by someone when it gets uncomfortable.
So today will be a day of rest… a forced day of rest. It will also be a day of tears. This is the part of a chronic illness or chronic pain people don’t want to see. This is the part we all try to hide. This is the part we try to slap a smile over so people don’t uncomfortable.
One day it will end. One way or another. Either the bad days will become too much or a cure will be found… but thankfully one day it will end. I take comfort in that. Now excuse me while I withdraw from the world…
Pain… yesterday was a high pain day. It was a high pain day that I had to power through. I wanted to curl into a ball and cry but instead I had to smile and interact. I couldn’t do my usual cancel everything so I can hide on the sofa popping narcotics every 4 hours praying for a meteor from space to come kill me. It was beyond exhausting and stressful. I feigned functional adult though and for that I’m proud. I push myself hard everyday but days with severe pain are even harder.
Living with chronic pain is… well… shitty. One day it could be reasonably controlled using modern medicine and the next day I could be unable to leave my bed. No rhyme or reason… it’s just how it goes. I can’t really plan things with out the disclaimer “if I’m feeling decent”. I go to bed at night wondering what level of hell I will wake up in. That’s if I sleep at all. Most nights I either toss and turn or give up and lay awake thanks to pain and anxiety.
Going out places requires planning. Will there be someone to drive me home if I have to take my strong meds? Will there be a place to sit? Will there be a quiet place to be for a minute if things get overwhelming? Will I be with a friend who will understand when I want to leave early? Can I fake a smile through feeling shitty so people don’t get put off? Are people going to think I just want sympathy? I’ve started just avoiding shows and other social activities that I used to enjoy.
I feel like a drug addict. Traveling… even just overnight… means bringing multiple bottles of pills. I have to take my narcotics everywhere. If I’m gone for more than 8 hours that means I have to bring other meds too so I can stay on schedule. My purse sounds like an 80 year olds.
Much of the time my meds make me feel mentally dull. I try to take the very minimun… just enough to take the edge off because I hate feeling dopey… but I hate being in pain more. “Can’t you just deal with the pain” a former friend asked me once… worried I was going to become addicted. I’m well aware about the risks of addiction but until you’ve been in a public restroom laying on the floor praying for death because you didn’t bring your meds with you and you were 2 hours past your scheduled dose please don’t lecture me.
Most days I can sort of function thanks to my meds yet other days I can’t do shit. That’s honestly the hardest part of this illness. Gone are my days filled with physical activities like weight lifting, boxing, horseback riding, rock climbing, surfing, and every other hobby I had. Gone are the days where I could just go go go then party all night. Instead it’s pats on the back for getting out of bed, showering, and especially leaving the house. That’s pretty shitty for a 30 something woman… that’s life though.
My heart still beats and (thanks to a medication adjustment) my brain still works so it could all be worse. I’m blessed to have awesome room mates who help me more than they know (huge step up from an abusive and neglectful husband), once again live close to other friends so it’s easier to see them and be social, and thankfully live near places that bring me great joy. Tomorrow could be better… or it could be worse. All I can do is pray and attempt to sleep… and thank God for that first breath in the morning.
My life has done a massive 180 but it’s gonna work out if I can just keep myself from myself. I’m trying to learn how to be kinder on myself… to remember that I’m not lazy… that I ACTUALLY NEED rest. I’m blessed with amazing friends who call me out when I don’t take care of myself and provide comfort and support. The really good days are rare now as the bad days become more frequent but I have to keep hope that one day the storm will end and I will be left with strength and a story.