When Recovery Feels Like Torture

Recovery. It has a positive ring to it right? “Speedy recovery!” “Get well soon!” “Feel better!”

Well meaning wishes like these really just feel like a slap in the face.

People suffering from chronic debilitating diseases do not need to hear “get well soon.” Sure, we are still human and understand the sentiment beneath the phrase. But we don’t know if we will ever get well. And soon? That’s a pipe dream for most as well.

I need to hear support like this: “I’m so sorry you’re in so much pain,” “This never ending struggle must be awful,” “You are strong for fighting through this.”

Validation. That is part of recovery I believe. Sick people need validation from others on their sickness. Imagine someone going through chemotherapy. The doctors recognize their illness as debilitating and life threatening. The general public hold fundraisers for research towards a cure. Their family and friends are in the hospital, bringing by meals, offering to help in any way. But what if no one believed their cancer was real? What if the extent of your illness was doubted?  What if doctors see your pain as not real, not valid, all in your head? You lose hope. Parts of yourself start breaking off, crumbling away and you don’t know when you’ll be able to retrieve those parts, if ever.

Luckily I have found a few doctors that believe me. Doctors that tell me “This is a big deal. Your body is really sick.”

I still go out into the world everyday feeling alone in my fight. How could I not be frustrated when everyday things are a struggle for me. Like walking. Or talking through extreme nausea. Standing. Smiling. Comprehending what others are saying. Staying awake. Staying positive.

And still, in this open space of a blog I still feel like when others read this I will seem like a complainer, weak, self-centered, negative, obsessed with my disease.

Let me set something out there. When a disease stops you from living life you become obsessed. With figuring out how to end the nightmare. Obsessed with medicines and treatments. Obsessed with articles and information that may give you a clue to an answer that could bring recovery. I DO NOT WANT TO BE OBSESSED.

I don’t want to take 50 pills every day. This is not an exaggeration. I counted today. 50 capsules, tablets, liquid doses every day. 6 times a day taking a handful of medicine is what recovery looks like. These handfuls are not little fairies fixing everything. They are tiny little “maybe helpers” They are strong little bastards making you so nauseous that breathing, speaking, and standing are almost impossible.

So, during illness, and illness recovery, you feel like you’re losing everyday. Perhaps you have a few minutes of relief. But they don’t last. These moments are like a friendly person riding by on a bicycle. They wave and smile. But they don’t stop to chat. They don’t ride by everyday. They sure as fuck don’t want to be your friend. Not many people can handle being friends with a sick person. At least not many friends of mine. I dropped off the face of my own planet. So I dropped off of theirs. And this is why we seek out support groups of people that have suffered illnesses like us. But trying to hang out with another person with CFS, Lyme, Fibro, Babesiosis, etc. It just makes me laugh. We are too tired to go anywhere or do anything. At least I know I am. Two hour shift at work = rest of day on the couch. This is not fun. This is torture.

I am crawling my way through recovery while still trying to keep a small art business afloat, while trying to get certified as a Braille Transcriber because I can do that from my couch. While trying to do my laundry. Cook my food. Clean my house. Care for my dog.

But what about a break? After all, I need to focus on recovery right? Well, yes, but focusing on a seemingly elusive prospect makes me feel hopeless not hopeful. There is no guarantee. On my better days I can see that perhaps this is the beginning of the end. Those better days are few and far between. And that “end” I am supposed to be hopeful about? Sometimes the only “end” I see is death. Dramatic? Not at all. I have begged for it often. Living in a body with multiple infectious diseases is not like having a flu like they say. It’s like being stuck in a putrid carcass. White blood cells scurrying around just trying to catch the spirochetes before they burrow out of reach. Red blood cells breaking apart from proliferating protozoa. I wish I could take off my skin and rinse off my insides.

Perhaps I am just having an angry morning. Perhaps I am at my wit’s end. Perhaps I will get through this mood swing and feel fine for a few minutes. Perhaps I will not make it through this.

And yet, I am aware or the struggles other people go through that I don’t have experience with and so don’t completely understand. That are just as debilitating. I have deep empathy for those struggling with chronic illnesses or just shitty life circumstances. I know I am not the only one. I know people get better. I just don’t see it very well in my own situation. I feel alone. I feel like I was robbed of my true self for most of my life.

In efforts to lighten up this post I will quote Sookie St. James from GG

“I’m sad. And mad. I’m smad!”

*Addendum* Days after this post I realize that some people in my life have been understanding about my health issues. Kind of a backwards way of getting perspective and realizing that some people are trying and I appreciate them so much. You know who you are. I’m sorry that I hurt anyone that has been trying to understand and be there for me. Is it just me or wouldn’t it be nice if someone swooped in to rescue the day, read your mind, and was everything you needed? Yeah, these are too high of expectations. It’s on me to save my own day. Or to be brave enough to ask for assistance. Why is this so hard?

WHEN YOU’RE SO DESPERATE FOR RESTORATIVE SLEEP YOU’RE WILLING TO LOOK LIKE BONO AFTER SUNSET…

CFS is a nice little acronym meaning that I am dead tired all of the time. Ever been so tired you just kind of stumble to the nearest wall and hang on for dear life? Or maybe when you get home you just lie on the floor right away. Jacket on, shoes on, bags still attached to shoulders. Sometimes I will get back from driving somewhere and park in my driveway and be too tired to get out and go up to my second floor apartment. So I sit there. Sighing. This is when you know you have severe fatigue issues and may even have CHRONIC FATIGUE SYNDROME. You are so tired you can’t even get out of your car. Before I figured out that I didn’t have to be “normal” and get out of the car right away, I would panic a bit. I would start to cry tears of fear and frustration, thinking “why can’t I be like everyone else? Get home, get out of car, get inside. Whats wrong with me? What if I never get out of this car?” Of course the solution comes down to self-care and acceptance for yourself in the situation as it is, as you are. Allow yourself to take a few minutes, eat a snack (always keep emergency food and liquid in your car) take a nap even, and 10 minutes or an hour later you go upstairs. No one ever declared a law saying you must get out of your car right away. The floor will be there waiting for you upstairs anytime.

One of the first questions a doctor will probably ask when you are complaining about severe fatigue is ‘How is your sleep?’ I wish I had known a decade ago that my sleep was CRAP. Perhaps we need more information on what good sleep is and what bad sleep is. During that time my insomnia was not raring its mean, taunting, elusive head so I thought my sleep was fine. I slept through the night. Sure, I had severely disruptive nightmares. I would frequently have a dream that so accurately played out what my next day would be that I would wake up and start getting ready for the following day. This was confusing and disorienting. In the stress dream everything would go wrong: my alarm would fail to go off, I’d burn my breakfast, there would be tons of traffic, work would be full of difficult people, I would drop my coffee, I’d get home to cook dinner and be out of food, I’d crawl my way into bed just glad the day was over. I’d wake up thinking, “damn, that was a terrible Tuesday  well time to get ready for Wednesday” only to find out Tuesday hadn’t happened yet. Okay, So I had bad dreams and would wake up in a weird mental state. Big whoop. Everybody has crazy dreams, work dreams, stress dreams. But how many of everybody have to hold onto walls to get through a room without bumbling around looking drunk AF?

Stressmares are bad but then there is SLEEP RELATED BRUXISM aka GRINDING YOUR TEETH. This causes extreme headaches when you wake up. It feels like a hangover. Without the fun of a nightlife. Before I knew I ground my teeth, I thought I was just always dehydrated. But I couldn’t drink enough water for the pain to subside. So then I thought I maybe tweaked my neck during my fitful night of Stressmares. All the bones in my head, face, jaw, all of them would just ache. Deep and throbbing. So I would go to the chiropractor and get adjusted weekly. I got a special D-CORE PILLOW to keep my head and neck in the optimal curved position for my neck to stay untweaked. The headaches ensued. So my routine became: wake up, look for the truck that snuck into my room and drove over my head, pop some aspirin (which has to be a joke pain reliever btw) and down a ton of coffee and several tons of water. Until one morning I woke up and my jaw was stuck. I went to my chiropractor to get it unstuck. I couldn’t think of what else to do. Again, the infamous question I never knew how to evaluate: ‘How is your sleep?’ I figured my sleep was fine. I slept through the night. I thought the headaches were just stress or something. How was my sleep? Great actually if you consider that I could and did fall fast asleep anywhere quickly and soundly. On the bus, in a dining hall, in my closet, during tests, etc. So the Chiro figured sleep  wasn’t the culprit. But what did he blame my stuck jaw on? Not TMJ, not Bruxism, none of those where even briefly explored. He sent me down a few cubicles to the female chiropractor in the office. Apparently she is the expert at jaw adjustments. Ok, great. She unlocks my jaw and then proceeds to give me a talking to about the dangers of giving too much oral sex. Yep, they blamed my jaw issue on me being too generous with blowjobs. Funny thing was at the time I had never given a blowjob. I wasn’t even sure about how blowjobs worked. I was still a Christian-raised wait-until-marriage purity ring kind of girl. Needless to say, being inexperienced, I was confused and speechless. When I tried to say that ‘that’ (I was so sexually shy I couldn’t even repeat the phrase oral sex or blowjob) couldn’t be the culprit because I don’t do ‘that stuff’ the doctor just said- “We are all adults here. Just be more mindful in the future” Needless to say, I left in a stupor, honestly and naively wondering how a jaw could be so devastatingly affected by this oral sex they speak of, and never went back to that Chiropractor’s office again. Sometimes you just have to not believe your doctors, because sometimes they are obviously and devastatingly wrong. You press on and find another one because you know, sometimes clearly and sometimes intuitively, that something else is wrong. I mean, I have seen so many doctors I have a nice little collection. The “D” section in my phone book scrolls for days.

Fast forward a few years later. I am at a new doctor’s office. The Ultrawellness Center in Lenox, MA (I HIGHLY RECOMMEND THIS FACILITY). It is my initial appointment there so I brought my support system with me: my mom and my partner. We get to the issue of Fatigue. Guess what question they ask that I somehow still have no real answer to? ‘How is your sleep?’ My typical response: It’s fine. But I never feel rested. I guess I knew that I needed to divulge more this time. Really just lay it out there. Even if the doctor said to me what I feared most: ‘everyone has that experience, you are just crazy for being in pain.’ So I elaborated: Sometimes I wake up with headaches, Sometimes I can’t fall asleep. Sometimes I can’t wake up. I have stressful nightmares. In the morning it feels like I was hit by a truck. And then the doctor asked a life-changing question: ‘Do you grind your teeth?’ I say, “nope”. My partner interjects here and he says with surprise in his voice by my answer: “umm yeah you do. It’s really loud. It wakes me up sometimes.” I was surprised. And frustrated. How am I supposed to know or wonder if I grind my teeth? I thought I just had to be frugal with blowjobs! Let me just spell out the irony here. In order to find out I ground my teeth at night I had to ‘become a heathen’ first. I had to share a bed with another person enough nights for them to notice my sleeping habits. Because, well, I am asleep while my habits are causing me severe pain. I wish I could be awake while my body wreaks havoc on itself so at least I know wtf was going on and maybe just choose another activity. Thankfully, the doctor saw this as a simple fix and prescribed a MOUTHGUARD to help with the Sleep-related Bruxism. AND IT WORKED. Granted, I got the fancy kind. I went to  my dentist and had them take a mold and waited a week for it to be made, went in for a fitting, the works. BUT IT WAS WORTH EVERY MINUTE AND EACH DOLLAR OF THE FIVE HUNDRED IT COST BECAUSE INSURANCE DOESN’T COVER MOUTH GUARDS FOR GRINDING. If I remember correctly, my insurance did however cover the jaw adjustment back when it was thought to be a result of my ‘excessive pleasure time.’ But I guess they probably didn’t have to put that reason on the form. Look at me now though! My fancy lisp-inducing mouthguard makes me one sexy lady.

Some people pride themselves on not needing a lot of sleep. SLEEP DEPRIVATION seems to be a flag of honor some people wave around. They are busy, successful, devoted, selfless. Well I become a strange version of myself when I don’t get enough sleep or enough restorative sleep. I’ll forget my name, lose common words, get lost going to familiar places, have headaches all day which means being super sensitive to noise, light, and stupidity in others. Here are some TIPS:

FOR CLIMBING STAIRS I recommend to take one stair at a time. By this I mean put both feet on one stair, wait until you feel stable and catch your breath, then get both feet on the next stair. If there is a handrail, use it. In fact, use it sort of like a pulley-system. When your legs are wobbly you can use your upper body strength to claw your way up. Also, no one said you have to be upright while going up stairs. Crawling is always a viable option. Especially if you are home and no one is looking. This method will however cause you to notice that it has been way too long since you have cleaned your stairs.

FOR WALKING .2 MI from your car to your place of work. Leave about 20 minutes in your schedule to make this journey. Take a break every few steps and hold on to a nearby tree or parking meter for a minute. Wait until you are no longer dizzy then continue slowly shuffling your way down the sidewalk. If any of the bags you are toting have long enough handles to reach the ground let those bags drag on the ground to save your shoulders from the extra weight.

FOR WORKING A FAST PACED JOB. You are going to have to take time off. An ideal amount of time is three months. This will give you enough time to try to get healthy again but also enough time to accept that you are not going to be getting healthy enough anytime soon. Then, quietly quit. Do not return to visit your co-worker friends because you will find it hard not to burst into tears at the fact that you are unable, for mysterious health reasons at this time, unable to live the lifestyle you were once living alongside them. You know, staying up past ten p.m., eating regular food,  talking and laughing without needing to sit down and concentrate on your breathing to minimize the dizziness, etc.

Okay so back to my experience with this new doctor and the actually helpful TOOLS he gave me to fight against my deteriorating health. He asked even more questions around  the subject of my sleep. What a novel idea! Thankfully, finally, somebody with enough knowledge recognized the problem, that I have not been getting RESTORATIVE SLEEP and helped me. Apparently BLUE LIGHT was also a culprit. Huh? Well, it goes like this. Before electricity humans used to go to bed after sunset or use candles to see after dark which were orange and dim and then these humans would wake up when the sun came up. The sun has blue light I guess which helps you wake up. So now we have electricity and use bulbs to stay up way past sunset. And we have even more blue light than the sun in electronics. We have multiple screens that we look at after sunset and straight up until bedtime. In my case, I would be watching Netflix until ten or so to make sure I was exhausted enough to fall asleep despite my anxiety and tight muscles. I would close my iMac, grab my iPhone, and stare at that screen completing the NYT Crossword until my eyelids finally dropped as the phone dropped out of my hand. Apparently, all very bad for good SLEEP HYGIENE as they call it. So I took this issue to heart and tried my hardest to change these habits of mine. Step 1: Close computer earlier in the night. Step 2: Stop looking at my phone at least an hour before bed. Step 3: Do the crossword on paper. Which by the way was hard because I had to dim my light all the way down to minimize the blue light. Obviously, It was harder to fall asleep. I was less distracted, therefore the bad feelings would take over, and going to sleep was altogether stressful. So I went back to my previous screen routine. Not helpful. So then the doctor, seeming to know that people can’t just break their screen habits even if they are dying of sleep deprivation, recommended ORANGE LENS GLASSES. I ordered them off Amazon for like nine bucks. I think this is one of those tools you can buy that can be cheap-o or knockoffs. The lens doesn’t have to have anything special other than an orange color. I think i found some that were over $90. They looked a little cooler, like sunglasses. I didn’t want to spend that much so I went with the $9 pair. These things are GOOFY LOOKING. My partner said I looked like BONO. Well, then, after sunset, call me Bono. Anything to get some freaking real sleep. Now, I’m not sure if these glasses are the end all be all solution. Only because I can’t see the science-y things my body is doing as a result of wearing them. The orange lenses help with something deeper than falling asleep faster or feeling rested when you wake up. By blocking blue light after sunset and especially an hour or two before you go to bed, you give your body a chance to naturally create MELATONIN. Way back in the day I used to take melatonin tablets before bed. They helped but I felt groggy. I mean, who am I kidding, I still feel groggy. But it is nice to take one less pill. You know, bring the count down from 58 a day to a mere 57 a day. Part of that mass of daily pills includes my four capsules of MAGNESIUM GLYCINATE an hour or so before bed. I also pop four caps of 5-HTP before bed. (Ask a smart doctor before taking new stuff) So, anyways you wear these glasses and they block the light and you have more melatonin in your system and then you body isn’t confused  anymore as to what it is supposed to be doing when you get in bed. It has the Melatonin built up and it’s like, hey, must be time to sleep. Another thing I ordered with the glasses was an ORANGE NIGHTLIGHT. This was cheap too. Its just a regular bulb but with an orange cover so the light is this amber glow. I put this in the bathroom for those mid-night pees. Turning on that bathroom or hallway light screws with your melatonin and will make it harder to go back to sleep. You could go pee in the dark. I’ve done it tons of times. Out of laziness mostly. But really, how many times have you gone pee, you don’t really need a light on for it. But just to minimize messes, an orange nightlight may also be a good buy. We all could use better sleep. Not just those of us fighting autoimmune illnesses or various disorders. I’m just guessing here. We all look at screens all the time. That isn’t going to change anytime soon. So my solution is to shove a well-molded piece of plastic around my teeth and wear some goofy glasses after the sun goes down. I will warn you though, IT IS IMPOSSIBLE TO PLAY UNO while wearing these. So, pick another game I guess. It’s a sacrifice, I know. But think of how well you might sleep…

 

 

WHEN A PHONE CALL WITH CELINE DION PROMPTS YOU TO START BLOGGING ABOUT YOUR CHRONIC PAIN…

Hi, my name is Kait and I live with chronic pain.

That’s how I start this sort of thing, right?

Ok so I have lived with some form of chronic pain and a myriad of health issues for about 13 years now. I have decided that it may be time to start writing about it since I have come across some THINGS THAT WORK! And definitely some THINGS THAT DON’T WORK.

I am not cured. I am not well. As I type this my body aches, seethes, and everything else you can’t even imagine. You ever get that feeling like your bones are empty inside and they just pulse from the dry hollowness? No? I am happy for you. For those that know that feeling, keep holding on.

I can’t start from the beginning of my “journey”. It’s too much for right now. But I am going to offer bits here. Let’s start with today.

When you’re on hold and the song they play for you is Celine Dion’s “All By Myself”

Whose sick joke was that? No company ever should have that on their playlist for hold music. As I am waiting to speak with a representative, Celine belts out her song and my eyes tear up so I have to actively laugh at the absurdity instead of hanging up to sob until my eyes red and puffy. That is one coping mech right there. Laugh. Life is absurd. Life with chronic pain is doubly absurd. I can’t always laugh in order to cope. But when I can, boy do I.

It had taken me 10 days to make this phone call. I’d been seeing emails about an account I needed to update and sighing was my response. Another thing to do. I’m already cooking this week! A few days went by and I got another email, my domain name, for this very website you are on, was in jeopardy. Damn. Now I really need to add this to my to-do list. I think to myself, ah yes, I’ll put this task just below getting dressed on Thursday. If I get dressed, surely I can push myself a little further and deal with this. I check my email again, service suspended. Good thing I am slightly coherent today ’cause, dang, “Suspended Service”, now that sounds serious.

So then I need to sign in. DAMN IT. I don’t remember my log in info. I have forgotten my name on multiple occasions. Who are these monsters that expect me to memorize passwords? So I look at my handy-dandy list of log in info for the three hundred places online we all have to log in to do anything. The info I need? Not there. DAMN IT. But you know what’s handy? That little “Forgot Password” link. I click that nice little link so often they should know me by now and just sign in for me. “Please enter your email” Ok, I definitely know that. “Invalid Email” Ok.. it’s possible I forgot my email. Anything is possible. Recheck my inbox. Looks good to me. Try again. “Invalid email” Ok now I know Brain Fog is a little mofo so I go to my email inbox again and double-check. I double check my typing. “Invalid email” DAMN IT. I have to make a phone call. I hate phone calls. My voice is faint because my body is crumbling into oblivion so I have to yell. Yelling is something I plug my ears around. Loud noises, you know? But I can’t plug my ears because I need to hear the person on the other end. I hate phone calls. So, here I am, dressed on a thursday (win!) and getting ready for the discomfort of yelling into my phone in order for them to know someone is actually on the line. In preparation for the rest I will need afterwards I lay down on my couch as I listen to the options for which number to press. I hear my option is number two and I start to chant “2, 2, 2, 2, 2” until the prompt ends. Pro Tip! When you’re dealing with number prompts that list eleven thousand options and you have already pressed 0 to listen to them again three times because you forgot the number you needed to press, just chant! Some say chanting is meditative, right? And meditation helps with pain, right?

I get the phone call done. I get the problem fixed. I am proud. That issue however took the energy I was going to use to make my bed. JUST KIDDING. I would never spend my energy on making my bed. I may have chronic pain but I still have a sense of humor, albeit it mostly corny and terrible.

I swig down some more coffee because my precious little life saver of a dog needs to piss and I need to get off the couch and over to the chair by the door. Caffeination necessary. This chair is where I sit for long lengths of time getting my shoes on and pumping myself up to leave the house. I also collapse into this chair when I have gotten back from time outside of the house. PRO TIP: Put a chair by the door. Sit here and be nice to yourself as you prepare to go somewhere or when you return from having gone somewhere sit here and be nice to yourself planning on how you will recover. Super Fun Perk: if you have an understanding SO, they may come over and take your shoes off for you if you end up sitting there for 10 minutes crying because you can’t get your winter boots off with your Gumby arms and stiff fingers.

Let’s finish this up now because I know it can be hard to focus on text for a long time. Today I had a chat with an old friend. And by chatting I mean I am crying and getting half sentences out that she can understand after years and years of “chatting” She proposed that I start blogging. Because time + effort = experience + knowledge. So here I am blogging. From my couch. For me, sure. But definitely for YOU. Celine Dion was all by herself this morning but you and I, we are not. Keep holding on. Some things help. I’ll write more about those things. Let’s talk more about those things.

 

K.