Life as you know it changes the second you get diagnosed with a chronic illness. I think the worst part about life changing though, is the fact that you didn’t expect the 180 degrees turn around that actually happens. Hold on tightly; I hope to bring you so advice from my personal experiences.
You’ll Start To Notice a Downfall.
In your work, in your relationships, in your mood. You’ve gotten diagnosed just in time to notice that this disease is overtaking your body.
You’ll move slower, you’ll think slower (and in turn, talk slower). Things or tasks that once took you 1 hour – expect to spend at least 30 minutes extra for the making. That time will go to brain fog clouding your view of “do I usually put on eyeliner or mascara first?” “Did I unplug everything?” (Catch a glimpse of yourself in the bathroom mirror when checking your outlet) “how did I seriously not straighten my hair?” You’ll walk to the kitchen, like any normal day at noon. “I’m not hungry. What am I doing?” Rack your brain! It’s in there I know it! A faint “meow” comes from behind you. “Feed the cats. Duh.” And you’ll scold yourself inside for a minute or two. At lunch with a friend, you’re not hungry. Actually, you want to throw up even considering the thought of any food entering your mouth and hitting your tastebuds. Your friend will worry, “are you sure you aren’t the slightest bit hungry?”…. Going about your day, people will maneuver around you as you once did for the little old lady in the scooter, who slowed your rapid pace in which you had for no specific reason… And now you wish you had a scooter, because if only you could just sit down, your lungs, legs, back, shoulders, feet, and muscles could rest and you’d still be getting to where you’re going….
It Will All Start To Come Together
Day after day, your mouth drys up, your eyes burn as if they have been sliced open when you put in your usual rewetting drops – youll wake up multiple times per night just because your eyes are dry. Your arms feel as though they’re made of lead, and dragging them behind you is almost too much to ask. Every step toward your destination drags you a mile further away. Your body aches. Your hair hurts. Your muscles slowly start to form knots in the base of your back.. “they feel it too”, you softly and hopelessly acknowledge their pain as if the muscles are a separate entity completely. You’ll get numb hands and feet, needle pricks, a crawling bug sensation, and an electric pulse from your core to your limbs. Your skin will itch, dry up, and crack open – you’ll also start to notice yourself having allergic reactions to beauty products that you’ve never had issue with before. You’ll start to gather your essentials for living second to second, as it’s come down to. Your purse will grow in size (if you didn’t already carry a diaper bag just for yourself) so that you can stash a water bottle inside to sneak into events you’re able to get out of the house for. You need eye drops, lotion, a phone charger, all of your prescription pain medications (and some Advil or Tylenol)… you get where I’m going here… Each morning, you’ll find yourself laying in bed, attempting to get up, for up to an hour after your alarm already sounded. The stiffness is debilitating. Move every joint, painfully slow, so that they pop back into real life too.. starting with your toes, your ankles, your knees, your hips, your spine, your shoulders, your wrists, your fingers, and your chest – stretching gently and slowly out so that each swollen costochondrital joint is aware that it’s time for the day – you’ll get a couple pops from your sternum and a couple more up by your inflammed collar bone. Stand up, and every joint will crack few additional times as you limp? or hop? or whatever it is that you call the strange walk you have to do until your hips are in alignment again. Your fatigue in the morning isn’t any better than it was last night, or even the night before that. You’ll need a nap from the energy it took just to take a shower. All of these random things were caused by you: Sjögren’s. *ANGRY face*.
And Then It Will All Fall Apart
“Great! You got a diagnosis!!! Now you can get better!” Your family doesn’t understand. Your friends don’t understand. Your spouse or partner doesn’t understand. And your kids sure as hell don’t get that they no longer can climb on mommy when she’s sitting down to breathe.
Let me lend you my knowledge from these past 2 years of feeling hopeless, lonely, unproductive, unuseful, space wasting, burdenful, needy, depressed, anxious, wreckless, irritable, and just down right in the way.
- Get a good team of doctors. I go to a gastroenterologist, a rheumatologist, and a psychiatrist, and I see at least one of them every 3 months depending on how my health is at the time. (I’ve listed the truly important ones… I’m actually in contact with the additional optometrist (dry eyes), dentist (dry mouth), urologist (kidney stones), OBGYN, allergy specialists and Ear, Nose, and Throat Specialist (frequent sinus infections… Sjögren’s), and let’s just say whoever is working at the hospital covered by our insurance at the time. ……. Make sure these doctors are willing and able to talk to one another and to also work together as a TEAM to get you well again. If my doctors weren’t working together, I have no idea where I would be or how I would be today…. another HUGE point in searching out your doctors, make sure they listen to you. That seems to be rare these days. Inbetween appointments, I make separate lists on my phone for each doctor that contain questions, worries, new symptoms, if another doctor changed a medication, anything that would be worth noting. If you do not give the doctor what you would feel is “too much” information, how can you expect them to treat you fully and correctly with half of the information they actually need to know (that you took upon yourself to mark as unimportant).
- Educate those who surround you the closest. My family and husband are my biggest cheerleaders. At the beginning of this endless and winding road, I also educated myself (and actually continue to educate myself). If I found an article that really helped me, I would copy the link and send it to my mother. She’s always the loudest voice I hear. 🙂 She’s my biggest protector and strongest fighter. She’s why I’m able to call myself a warrior. Because she taught me how to stand up for what you believe in. When what you believe in is yourself, you’ll fight with all you’ve got, and you will also find yourself surrounded by loved ones willing to protect you right along side – but they have to know what’s going on, and that you need an extra voice, shield, and shoulder.
- Expect your “friends” to leave. Because you’re not well enough to get a drink (which by the way, if I go out to drink, I have to prep my body for the entire day, know my limit – which means stop when my body says stop, and expect to be in bed for the following 3 days – at the least.) Expect your friends to look at you as an inconvenience. Expect them to slowly fall away one by one. And expect your heart to be broken.. because you have better friends than that.. you thought. If any of these friends care enough to stay, hold onto them and run with it to the moon! I’ve found better friends being ill than I could ever have being well. These friends want to love and care about you: make sure they also know about your disease, but also make sure to release the information at a pace that THEY set. It all is quite overwhelming and hard to believe from the outside looking in. I mean, think about how bizarre it all sounds! ESPECIALLY since pain is not a perceivable symptom. Be understanding of that. Don’t hide your bad days from your closest people. Show them you as yourself. Show up to their house in PJs and no bra because, “you needed me and Im here! But this is the best that I could do.. I’m sorry.” It will make the journey much easier for everyone involved if you put everything into the light.
- Do not expect anyone to “get it”. I still get offended by a “oh girl you don’t even know, me too.” Instant thought: “NO. YOU don’t know. YOU HAVE NO IDEA-even CLOSE.” But let it go. Let it pass. It’s ok of they don’t get it. Be grateful for them that they have no way of knowing your life, your pain, fatigue, and all that comes with… I, personally, wouldn’t wish my life on my worst enemy. Know and remember that God is using this disease with you for a reason. Sometimes, I feel hopeless. But other times, I know that I’ll find out what that reason is down the road. Even if I don’t find out what the reason is, it will still be ok. God gives his toughest battles to His Strongest soldiers. (I repeat this on the daily). You are a warrior and don’t let anyone tell you differently.
- Re-evaluate your career options. Believe it or not, my diseases have left me unable to work at all. Check out all of your options. This point is extremely stressful, but don’t stress yourself into a flare. It will work out – because YOU aren’t going to give your life another choice!
And Don’t. Ever. Stop. Learning.
“She would not show that she was afraid,
But being and feeling alone was too much to face.
Though everyone said that she was so strong,
What they didn’t know is that she could barely carry on.
But she knew that she would be okay,
So she didn’t let it get in her way,
Sometimes it all gets a little too much,
But you gotta realize that soon the fog will clear up.
And you don’t have to be afraid, because we’re all the same,
And we know that sometimes it all gets a little too much.”
If you ever have a question, please do not hesitate to contact me. I get my emails almost instantly. ☺️