For me, a flare comes in many shapes and sizes. It is constantly evolving and always keeps me on my toes. I wake up each morning wondering what symptoms today will bring. My symptoms in general vary greatly. An autoimmune disease such as Sjogren’s Syndrome comes with many varying symptoms. Some come and go. Some are constant. Some simply make a random appearance just to add a little mystery to my day. I often use number scales to describe my symptom levels, because the severity is greatly varied. I always play a game of “what symptoms do I get today?” and “how bad is it gonna be?”.
My most common symptoms are body aches (muscle, bone, and joint pain), severe fatigue, and just a general sick feeling. I also get a whole slew of other symptoms such as neurologic problems like brain fog and loss of physical coordination including walking, digestive problems, temperature management, skin problems, infections, painful dryness of all mucous membranes, weight loss, and the list goes on and on. I still get surprised with strange new symptoms on occasion. I can end up with any number of combinations of these symptoms and they change from hour to hour at times. The scale of each of these symptoms varies as well. Chronic illness and pain patients like me use a number scale 1-10, with 10 being the worst. Most days I hover right in the 5-7 range. Some days I’m a 10 while other days I’m a 1. Lately I’ve been waking up with my symptoms around a 7 and by the evening I’m more in the 3-4 range, which is nice. I’ve been doing better at night. It’s so odd where it goes and how it changes. There is no rhyme or reason for any of it. It just feels completely random. Like rolling the dice each morning. Some days I can push through and function. Other days I am completely overwhelmed by my symptoms and I can’t even think straight. These are the days that I just lay down and don’t move.
These flares greatly affect my mental health. I imagine anyone who lives the way I do, always feeling sick and in pain and being disappointed every day would also suffer from depression and anxiety. It is soul crushing to constantly feel sick and in pain. It takes 1000x more effort to do ANYTHING compared to any healthy person. It is hard to keep a level head when every little thing about your life has changed and is now complicated. I can’t live the way I used to, I can never reach my dreams and goals, and the worst part is my disability affects my family. I hate it. Existing during a flare is an absolutely miserable experience! I’ve lost many precious years of my life being sick and in pain. I’ve missed out on so much of my life because I was stuck in bed or on the couch. It’s truly depressing to even think about. This is probably the biggest contributing factor for my depression.
My flares generally last 3-4 months. I’ve even had flares that lasted over a year. I am sick more often than I am not. I get a total of about 2-4 months out of the year when I feel good. Oh how I celebrate those days! My flares end up just being a waiting game. I’m just surviving long enough to get past the flare so I can enjoy a few good days. It’s kinda like working a miserable job where Monday through Friday suck, but you party on the weekend. If you ask me, it’s no way to live, but that’s a different story altogether.
Dryness is the defining characteristic of Sjogren’s Syndrome. Unfortunately most people confuse that as the only symptom. They could not be more wrong. Sure, I have dryness. Sure it hurts, and causes other issues, but for me it’s such a nonsense symptom because the others are so much more debilitating. To say dry eyes are the main issue is like saying a runny nose is the defining symptoms for the flu. It’s simply one little part of a whole host of problems. My dryness affects my eyes, nose, mouth, ears, vagina, and skin. For example, I often get painful sores and fissures in my nostrils that don’t heal for many months. It is extremely painful. I even have eroded tissue which exposes the cartilage inside my nose. I smear coconut oil and aquaphor in my nose everyday to help add moisture and to help to soothe the burning pain.
A fun symptom that I often experience is digestive. I already know I am gluten and dairy intolerant, so I stay away from those things, but that doesn’t always matter. I almost always suffer from digestive problems when I’m flaring. This includes constant stomach aches, loss of appetite, frequent bathroom trips, nausea, pain, gas & bloating. I often lose weight during these times because eating becomes very difficult. Having food in my body feels terrible. I need to eat or I’ll be too weak to function, but eating causes pain and nausea. I’ve been tested for all kinds of digestive problems, but nothing has come back as absolute. I don’t care because I know what I experience whether or not it has a name. Currently I am losing weight at an alarming rate partially because of this. I am at my lowest weight since I was a kid. I am 109 lbs. Exactly one year ago I was 123 lbs. I look and feel unhealthy. It’s quite disgusting actually.
I’d say fatigue is by far my most debilitating symptom. I can push through pain, but the crushing exhaustion that comes with this disease is just beyond. I’ve seen it accurately described as paralytic fatigue. There are times that I am so extremely exhausted that I simply cannot move. Even each breath is taken with great effort. It’s like wearing a lead suit of armor or being shot with an animal tranquilizer. The extreme heaviness of the limbs makes it impossible to move and completely depletes the body of all strength. I’ve fallen because my legs were just too heavy to lift off the ground. Even now, I consistently walk by dragging my heels because I simply do not have the strength to lift my feet off the ground. I’ve been so deadly exhausted at times that I fell asleep on the couch and can hear my kids trying to wake me but not being able to respond or wake up. It’s like I was comatose. I was aware in a foggy way, but unable to respond. It is a terrifying feeling. If I had to pick only one symptom to cure, it would be the fatigue. Being exhausted 24/7 is awful!
Right now there is no cure or treatment for Sjogren’s Syndrome. There are drugs to try to manage symptoms, but they haven’t been successful for me. I’ve tried many different drugs including infusions, shots, pills, even total diet changes. Nothing has worked. It’s devastating to know that there is nothing that can help and this is a life sentence. I wouldn’t wish it on anyone. The only thing that brings me any relief is Medical Marijuana, but even that is limited. It helps relieve some symptoms, but it is by no means a cure. It may only take my pain from a 9 to a 6, but it’s still some relief. It also helps to take my mind off of my misery which isn’t necessarily a bad thing. I don’t drink alcohol. I smoke pot. I feel it’s a healthier choice anyway. That’s just my opinion from experience.
Getting through a flare is the ultimate test of physical and mental endurance. Most people can’t handle a cold or the flu for a few days. Imagine having the flu for 6 months. It’s rough. It really pushes a person to the absolutely limits. I’m pretty sure it would be classified as torture if it was induced. Sometimes we (sick people) reach our limits and break down. We are entitled to this break down. The relentless torture our bodies put us through is just too unbearable and we break. We’ve earned the right to cry if that’s what we have to do. A good cry actually feels good!
I could go on and on about my different symptoms and how bad it feels to be sick nearly every day of my life. I can’t do anything about it except just try to get through it and maybe spread awareness. That is the point of this blog. It’s to share my experience with those suffering and those who are healthy and trying to understand what we go through. There shouldn’t be any shame with being chronically ill, but there is. We are made to feel like this is our fault somehow. As if we caused it or we deserve it somehow. It is simple ignorance. I live it and I still don’t understand it. It doesn’t make any sense how someone could just be sick forever. Understand it or not, it is a thing. And it sucks!