Monday, September 24, 2018

Hell Week

Sometimes this illness presents itself in the absolute strangest ways. Take last week for example. I woke up during the wee hours of Monday morning to pee and caught a violent cold shiver on my way back to bed. So I bundled up under my blankets like a mummy and shivered myself back to sleep. Well when I woke up a few hours later, I was drenched in sweat. Like hair plastered to my forehead, sheets soaked, drenched in sweat. I felt sick, but that's kinda my normal state these days so it didn't cause much concern. I dragged my way through the day getting non-physical activities done and somehow, despite feeling pretty awful, kept my mental state steady. 

On Tuesday I woke up still feeling sick: alternating between really hot and freezing cold, achy, lethargic, stomach a mess, bla bla bla... But in addition to feeling sick, there was an extreme pain on the right side of my mid-back, kinda near my ribs. It flared and spasmed at times with such severity not only could I not breathe, but I was forced to cry. I tried massaging it and icing it. I took ibuprofen. I sat in strange and contorted positions trying to relieve the pressure, but for the life of me I couldn't get out of pain. I hurt too bad everywhere else to do yoga; a medieval torture rack sounded more appealing. So I sat there patiently waiting for the flare to subside, knowing once it did I could attack my back with some good ol' fashioned stretching.

On Wednesday I woke up so sick and in so much pain that I lost my shit. I'd tried to keep it together, I really did, but my PTSD started to kick in and I couldn't. If I thought I was crying on Tuesday, Wednesday took it to a whole new level. I spent the majority of the day ranting and raving about the unfairness of life. What had I ever done to deserve unending misery? How was I supposed to survive it? Horrible people have wonderful lives, why can't mine just be normal? And it was while crying this out to dear old mom that a lightbulb went off in my head.

This particular back pain is easily sixteen years old. I had it long before I started feeling the symptoms of CFS and fibro. I remember going to the doctor and being told it was because I was a makeup artist and worked with my right arm extended out in front of me for like forty hours a week. He told me to file a workman's comp claim. I thought he was ridiculous. I was twenty-six years old and had worked in the industry for a year-and-a-half. I hadn't exactly been performing hard physical labor for twenty years under adverse conditions. Clearly my doctor just didn't want to deal with me. So I sucked it up and ignored the pain until a few years later when I started feeling the symptoms of what turned out to be CFS and fibro. I found out that whatever's wrong with my shoulder is connected to whatever's wrong with my neck. Combine that with these chronic pain conditions, and the result was damn near right-arm paralysis.

It took years to get that spot, along with all the other areas on my body where I have a slight inequity fibro lives to exploit, out of pain. Acupuncture and yoga helped, but it wasn't until I started weight lifting that I forgot it even existed. But I'm not exercising regularly right now and am actually in pretty pathetic shape. I've been really down on myself for gaining weight and not looking as good as I did a few years ago. Last Tuesday I was reminded in a brutal and punishing way that exercise, for me, has nothing to do with looking good. It is, quite simply, the only way to feel like my body isn't falling apart.

Wednesday's realization did nothing to improve my Thursday. I believe at one point my husband actually told me I wasn't allowed to cry anymore. And I didn't blame him a bit. How he hadn't walked out the door yet was beyond comprehension. If I'd had any way to get away from me, I woulda flown the coop in a heartbeat. Nevertheless, we somehow made it through my flare. He found the trigger spot under my shoulder blade and pushed on it until I thought my eyes were gonna pop out of my head. I spent hours stretching while we watched TV. Sure, it hurt like hell, but sitting still wasn't any better. Clearly the only way to improve my future is to torture myself now. 

On Sunday I woke up and the first thing I felt wasn't my back. Hallelujah! Yes, it still hurts, but the stretching and massaging and ibuprofen and ice, and in all honesty my flare ending, shifted the pain from agonizing to uncomfortable. So that's that. Another week gone. Another week I won't get back. Another week of my life absorbed by this sickness that doesn't make a damn bit of sense and no one can seem to fix.

Thanks for joining,

Wednesday, September 19, 2018

Just Feed the Dog

Last year, or maybe it was this one, who knows they all kinda blend into the same, my dog got sick. Something was wrong with him. Either his intestines were developing a serious disease, his food was poisoning him, he'd contracted a parasite or infection... We gave him every possible medicine. I changed his food. We even treated our other dog in an attempt to eliminate her carrying something she was transferring back to him, despite her not displaying symptoms herself. Nothing worked. He had me running him out to the bathroom at all hours of the night. He gave me dirty looks every time I put his food down and half the time refused to eat it. Yet he was still my baby dog. Twelve years old, maybe, but he still wanted to play and love and live his life to the fullest.

I had to figure out how to make him better before his intestinal inflammation turned into that aforementioned serious disease. Following my vet's advice, I took both dogs off their commercial diet and started to cook for them. Also, since they were eating chicken and turkey, I switched to beef. Twice a day I warmed up organic ground beef, apple, and spiralized white and sweet potatoes and fed it to my canines. I no longer got dirty looks when I put down that bowl o' food, let me tell you. Mealtime resumed its rightful place as my dogs' favorite time. And low and behold, he got better. My vet diagnosed him with a poultry intolerance and commended my dedication to figuring it out, not just throwing him on a lifetime of medications that don't work all that well to treat his nightmarish symptoms (sound familiar).

Perhaps I mentioned in a previous post that I'd totally burned out on this housewife crap and was no longer cooking for my husband? Needless to say, cooking for the dogs had to go. So I started researching dog food. Good God, ignorance is bliss! Let's just say that the high-priced kibble I'd been investing in, believing I was supporting their long-term health, was full of crap. In fact, all kibble is. Fillers and byproducts and meals that provide very little in the way of actual nutrition. So I kept searching. Sadly, it was nearly impossible to find dog food in any form that wasn't junk. I wound up settling on an extremely expensive New Zealand beef jerky that I mixed with a dehydrated beef and vegetable "powder," that I had to rehydrate with hot water. It was less work than sauteing ground beef and boiling spiralized potatoes every few days, but still too fussy for me. At this point I was so burnt out, I wasn't even cooking for myself anymore. Plus my dogs' enthusiasm was gone. Rehydrated gruel just wasn't as appealing as fresh ground beef. No duh.

After he got inured in July and totally stopped eating his food, I went back to cooking for the dogs. Meanwhile, my poor mother was forced to listen to forty-five-minute daily rants about the utter lack of quality dog food available at an affordable price. Then the whole "legumes can cause canine heart disease" scare broke out. Man, did I get desperate--to stop cooking, researching, and otherwise being a complete freak about what to feed my dogs. Yet I also refused to watch him get sick again. So finally I settled on a frozen raw recipe with beef and vegetables mixed with that New Zealand jerky.

Now this is where my ridiculously long story comes full circle. Because when I found out raw wasn't good for senior dogs, given that they are more susceptible to pathogens, I started lightly steaming the frozen raw food. Now I can't find a cooked food with an adequate amount of quality ingredients to replace it with. So here I sit, taking a break from researching dog food, again, to throw a frustrated fit. I'm right back where I started. Cooking, researching, and otherwise at a total loss about what food to feed my dogs.

Thanks for joining,

Monday, September 17, 2018

Accepting Sick

Last spring I got sick with a cold that acted more like the flu. While certainly not the sickest I've ever been, I was already struggling to come out of a fibro relapse and it hit me pretty hard. Additionally, it lingered and lingered and lingered until it was nearly summertime. At one point I remember walking around my kitchen forcing myself to do the dishes with every muscle aching, nose running, head throbbing, and lungs hacking. I'd been like this for weeks and was miserable. I wondered if it was ever going to end. I couldn't remember what it was like to feel good and didn't know if I ever would again.

Somewhere between unloading the dishwasher and loading it back up again, an epiphany hit me. I stopped working and just stood there. Stunned. Suddenly my life made all the sense in the world. Of course I wasn't going to feel good again. And for the life of me I couldn't figure out why I expected to? It became clear as day that even after this cold-flu abated, which it undoubtedly would at some point before Labor Day, I was still sick. I was still miserable and in pain and hardly able to function. I was still struggling to come out of a three-year relapse. I was isolated and alone, with no help on the horizon and no end in sight.

Acceptance washed over me in a way it hadn't before. I admitted how sick of feeling awful I was, and how it wasn't fair that everyone else's colds and flus went away and allowed them to return to real life when my chronic illness had been keeping me prisoner for thirteen years. I got mad that I was expected to live in pain and self-subjugation because medicine doesn't truly know what's wrong with me. I became furious over the fact that because medicine doesn't know what's wrong with me, I'm treated like a nut job who just can't figure out how to make life work.

It seemed like an absurd circus I was willfully participating in. So I decided, then and there, standing in front of my dishwasher with a tissue in one hand and the other covering my hacking mouth, that I was done. I refused to participate in the madness any longer. Everyone who didn't feel like I did every damn day could piss off, I was done caring about them more than me. I was done feeling awful and hiding it. I was done putting productivity in front of my ability to reduce my pain and sickness. Yup, in that moment I decided feeling good was my number one priority and everything else could happen second.

My flares changed after that. Instead of lying on the sofa all day feeling awful and getting nothing done, then feeling okay a few days later and racing around to get caught up, only to push myself right back onto that sofa, I stopped the cycle. Slowly I started to feel better from my cold-flu. Man was I behind on life's to-do list! But my refusal to keep myself imprisoned in misery was fresh and strong. So I did a little and rested a lot. Each day I kept at that pace. When I felt bad, I rested. When I felt good I did a little, then rested preemptively. I figured if everyone else gets to not feel horrible every day, the least I deserved was to not make things worse for myself.

Yes I've pushed myself into a few flares since then. Obviously. Whatever I had to do was too important. Until I was there. Then I remembered why I committed to my quality of life first and productivity second. This epiphany has revolutionized my life. Over the last few months my core health has started to stabilize. I'm coming back to life again and slowly getting a handle on my circumstances. And each time I make a decision to put my health first, it becomes easier to do. Although I'm still climbing out of the deep hole of relapse, I'm now able see the tiniest glimmer of light at the very end of the tunnel.

Thanks for joining,

Saturday, September 15, 2018

My Lunch Date

On Thursday an old friend took me out to lunch for my birthday. Now she's a regular person with a regular job so lunch for her is at like noon. This meant I had to be up, showered, dogs walked, makeup on, and generally trying to present myself as a functioning member of society by the time I called Lyft at 11:45 a.m. I'm usually walking my dogs around the block in my sweats at eleven, and that's on a good day when both my insomnia is in check and flare registers on the below-average scale. Otherwise I find myself motivationless and begrudging the monotonous list of duties and chores that lie ahead of me. Yeah, I've been known to drag starting my walk out until well past noon. It makes me wonder how on Earth I used to have a job. It's also one of my greatest hurdles I'm actively working to overcome.

I got to the restaurant nine minutes early. And I can't blame it entirely on my Lyft driver literally being on my street the moment I made my request. I was so paranoid I was going to be late, because I'm so far from functional right now, that I went into hyperdrive the moment my alarm went off. I spent the morning racing around in a shaking rush doing everything in my power to arrive on time. 

Obviously that's not a realistic way to live. But considering this was the third time we rescheduled because I kept cancelling on her, I was hell bent and determined to follow through on my commitment. And I did. Although the methods I employed were hardly a kind way to treat myself, it felt good knowing if push came to shove, I could get myself out of the house before noon. I even did such a good job of appearing somewhat normal, when I got in the car my Lyft driver asked me if I was headed to work.

Thanks for joining,

Wednesday, September 12, 2018

Bitch Needs Bourbon

That was the text I sent to my husband at 7:28 p.m. last night. Because at that point in time, I really needed a drink. In fact, I knew it was the only way we were going to make it through the evening together. My day had gone from bad to worse and my mental state right along with it. It's awfully strange to know intellectually that everything in the world isn't negative and terrible, yet only be able to experience it that way. Every word out of my mouth was critical and naggy. I was in too much pain to sit. My patience was nonexistent. The need for solitude and distraction was paramount, yet my life isn't built that way. For years I took narcotics but don't anymore. So in order to become somewhat tolerable, I drink.

Thank God for the one-day flare. I'm not saying I'm ready to conquer the world today. But considering I lived in the aforementioned flare-state for about eight months straight, a day of extreme misery isn't all that derailing anymore. Strangely, I'm realizing I can almost consider it a good thing. Yesterday reminded me how far I have come, and how hard I worked to get here. I may spend most of my time bitching about my inadequacies, but if I honestly assess where I was in 2016 and where I am today, well, it's as far apart as night and day. 

Not that I wouldn't have slapped myself silly for having such a positive thought yesterday.

Thanks for joining,

Tuesday, September 11, 2018

To Do or Not To Do

I didn't realize I woke up in a flare until I tried to pour my coffee from my regular mug into my travel mug and spilled half. It pissed me off so bad, I hurled all the silverware sitting on the counter that the coffee spilled on into the sink. Then I stood there annoyed that something as non-emotional as the success or failure of transferring liquid from one vessel to another elicited so much passion in me. Furthermore, having to grab the sponge from the dishwasher to clean it up, when it would have been so much more convenient if the sponge was already sitting near the sink, seemed like an extra assault on my already taxed capabilities. Groaning, I realized the extreme fatigue I experienced last night, coupled with the boil on my face I woke up with this morning, combined with the screaming hips I tossed and turned to all night, added to my irrational expectation that every effort I put forth flow smoothly or else... Yup, I was in a flare.

Maybe it will only last a day. Perhaps if I take really gentle care of myself today, tomorrow will be filled with sunshine and rainbows. But I have stuff to do today. If I don't, life gets backed up. Then I have to do like 50 things in one day to catch up, which isn't possible for me right now. So the anxiety monster takes over. I'm overcome with how little control I have over myself. The justifications start to form, excuses as to why things are the way they are. But none of it lets me off the hook. 

I get frustrated that I can't keep my commitment to myself to dye my roots and do yoga, let alone give the dog a haircut and juice my veggies. Because if I just did those four simple things, it would be okay. I wouldn't be behind the eight-ball of life. I'd be capable of crossing a few more things off the To Do list that's required to keep me moving forward. Yet quite frankly it's one of those days where taking a shower and emptying the dishwasher, that's pretty much all I got in me.

Once the sum of my energy diminished, I found myself deposited in this weird no-man's land of unthrilling monotony and boring repetition. It feels like domestic servitude. It's hard to find motivation to get up and kick ass every day when I can barely keep up with everyday necessities. Where's the fun? Where's the variety? Where's the endorphins and pheromones and excitement? So today I sit here lamenting how far apart the life I live and life I want to live truly sit. I wonder how many more years of trying to stabilize my health it's going to take until I can start to bridge that divide. Because it's about so much more than a daily To Do list. It's about crossing off accomplishments on the goal list of life.

Thanks for joining,