Over the past year I’ve had quite a lot of difficulty fully expressing what I deal with on a day-to-day basis with all of my syndromes and diagnoses.
I really struggle to properly express the whole situation mostly because I forget that some of my struggles are not “normal.” My family and I have awesomely become in sync so they all know what I will need help with and what I don’t. When the situation comes up, they step in to help with ease.
It is honestly a blessing and honor to know them and to have reached this point, because there were a few rough years when we all just clashed — with my need to decrease pain moments as much as possible and them wanting to live their lives, especially with a teenage brother seven years younger than me who wanted to be active when I need complete quiet and craved little movement or vibrations to exist.
A basic overlay of my day with various pain issues and troubles mixed in begins with me waking up after a decent five hours of sleep where when I dreamed, I still had all of my disabilities and issues. In my dreams, I often can’t use my hands to grasp things — just like daily life. I get migraines in my sleep, I gain excruciating bone splints in my legs and muscle spasms in my feet, calve muscles and arms. When I wake, these same pains to greet me good morning along with my overall level 10 pain.
For background — I am going on 13 years of constant pain with half of my life being spent in pain. During this time I have had to learn — from necessity — how to push the pain away and use mind over matter to subsist in a recognizable way of living. At all times I am constantly, millisecond by millisecond, keeping back 75% of my pain in the back of my mind. This pain is a combination of all pains that are on the pain list. Like burning, aching, crushing, breaking, stinging, etc. Underneath that is the overall feeling of those aches you get when you are sick, times five at least on an average day for me.
This tentative hold I have on my pain has gotten stronger with each year of pain, warring with my constant rise of pain that happens on a weekly basis. The other 25% of pain I deal with is the mind-numbing sharp, fierce pain that keeps me from using my hands, terrorizes my muscles and joints and makes me feel swollen and frazzled with any accidental touch from anyone or anything.
With fibromyalgia, I have basic high-level pain with fibro fog that makes my head feel cloudy and I can’t seem to grasp any thoughts no matter how vital. With it comes extremely sensitive points that are akin to a needle long and with thorns going into the points. Often I have crackling electric pain that feels as if it shatters my spine. Sometimes it lasts hours and other times I have it come and go throughout the day.
The muscle spasms and bone splints are the most annoying because they tend to happen in the limbs. The arm pains are particularly vicious and make it feel as if something like a giant that weighs tons is crushing my whole arm, and yet I am in need of said arm to do basic things. My leg pains are relatively the same but they become the most sore and achy after the crushing feeling finally subsides a day later.
My hand pain is probably the most complicated and hard to explain. Arthritis in particular with a combinations of hypothyroidism, the previously mentioned fibromyalgia, lupus, amplified pain syndrome and Ehlers-Danlos syndrome (EDS)– while they all effect my whole body, they all started as symptoms in my hands and knees first. Because of that I have what feels like lasting nerve pain damage in my hands since they are the things us humans use the most. It is like sharp needles scraping inside my bones while being crushed and my finger muscles spasming. Swollen and stiff I struggle to use utensils, brush my teeth, open lids on items and even hold a cup or phone.
On the subject of swollen joints, that is where my EDS comes into play in particular. I was diagnosed just a few years ago and now know that the pain associated with having an injured and swollen part of your body is what I always feel with my joints. Tender to move and aching constantly. Often I have my joints “stick,” which feels like bone grinding tightly against another bone with shooting sharp pains traveling all around the nerves near the areas from hips, to ankles, to even shoulders and toes I am constantly dislocating all joints including ribs if I cough or laugh too hard. My ankles, wrists, knees and hips do it the most. At least 10 times a day with lots of room for more dislocations. As I sleep, my ankles pop in and out time and again, so I wake up with swollen ankles and sometimes knees too, traveling to my hips every other time I lay down and sleep.
All of this is just the explanation of basic existing for me — 12.5 years of pain on top of pain on top of more pain.
After waking I slowly get up — so as not to dislocate more things — and go about getting breakfast despite the clock reading almost 11 a.m.. Anything with the least amount of movement and effort is what I devour to handle my monstrous pain-fueled appetite. My pain uses so much energy that I am always starving and even after a large meal I am starving again within an hour.
I also have severe gastro issues because of my Ehlers-Danlos syndrome. This means that when I swallow, no food moves down. It takes hours to actually get the food in my stomach and constant swallowing during that time. Often it comes back up as vomit and I wake up either vomiting or with the acrid taste in my mouth.
After eating — which takes way too long with my slow and pained fingers — I have to head back to bed, utterly exhausted from eating a simple breakfast. I sleep through lunch because exhaustion wins out over hunger and I just don’t have the energy to chew with a jaw that has muscle spasms going through it with each few bites. Ouch! This particular pain is getting worse with each new day. The pain-filled shock waves from biting down to chew my first few mouthfuls travels all through my mouth, head and torso. Like someone zapped me with an intensity that makes me grind teeth and bones, tensing with hurt.
Awake for dinner, I usually get to spend an hour with my family before the pain overtakes me again and I have to blackout from more bone-deep exhaustion. Trying to stay awake even five minutes longer just makes my pain even sharper and more resounding in my already over-taxed body.
At last I wake up at 2 a.m. to be awake and exist as normal as I get. I often try to take a bath with Epsom salts to soothe my muscle spasms and naturally-tensed body from the pain. Lately I try something crafty, but with my hands I sometimes have to choose to just watch some good crime shows or cooking shows. Before all my worsening health pain, I was a big cook in the family. Always making dinners and whipping up desserts. I miss that so much. I have to miss a lot with all this pain, and the byproduct, exhaustion.
My mom helps me wash my hair ever so often so my curls don’t get too horrid for my dear family to view. I take what I call “half showers” as often as I can, but a full shower puts me out for days with already nonexistent energy to pay. At last I end my night with prayers, scripture study, a meal to fuel my pain-filled sleep, a bit of a book on my kindle held up by a stand, and as heavy a dose of sleeping pills as an adult is able to take. Pain medications do nothing for me with my 11 diagnoses horribly combined. At 5 a.m. my body finally hits total exhaustion and dreams with disability and pain fill my thoughts until I wake in five hours to do it all again.