I have a lot of people ask me what it is like being me. I always laugh, and kind of make a joke about how I get to lounge around in my PJs all day and watch TV. Honestly, that couldn't be farther from the truth. I do spend a lot of time in bed, but a lot of people don't understand that being sick is a full time job. It's a job, only you don't get paid, and you NEVER get to take a break from it. This job is 24 hours a day, 7 days a week, and you are basically a slave to your own body.
So, I will share my daily duties with you all, but please keep in mind that I want to be truthful. I am not doing this for pity, or sympathy. I simply want to bring awareness to my disease to educate people about RA, and let other RA patients know they are not alone in this fight. So, with that said, here is a typical day for me.
4:00 am.- I wake up. I make my first little movement in the bed. I usually move my arms first then my legs. By doing this, I can usually tell what kind of day I am going to have. If I feel immediate pain, I know my day will be tough and painful. If I can move a little and just feel a little pain and stiffness, then I know it will be a bearable day. Afterwards I get up to to use the restroom, and take my first set of Meds. (prednisone which is a steroid that helps control my swelling and pain, and also a pain med for obvious reasons) This is a quiet time for me. I take advantage of that moment to check Muffin on the baby monitor and say my morning prayer. I ask Heavenly Father to help me and give me strength and patience throughout the day and also keep my family happy and safe. Then I prop my knees up with my wedge pillow, get comfy and go back to sleep.
8:00ish - 10:00ish- I wake up for the day. Depending on when J has to work is when I wake up. If he works later in the day, I sleep longer. I usually sleep in as long as I can in the morning because it is really hard for me to get to sleep at night. I frequently have muscle spasms and achy joints at the end of the day that makes sleeping hard.
I get up and scoot myself to the edge of the bed, and on to my rolling office stool. Then I roll myself to the restroom. After my business is done, I roll myself back to my room, and scoot back on to the bed. Then I take my second set of pills. (Pain Med, a Vitamin, and Plaquinil which is another med to keep my RA from doing more damage to my joints) then my wonderful mom gets me breakfast. I have to eat with my Meds. or I get sick.
For the remainder of the morning I do things like play with Muffin if J went to work, check my email, Facebook, and Instagram. If I am feeling good that day I might do some coloring or an art project with Muffin or work on a craft. I have to be very careful about what I do because I get tired really quickly. I'd say playing with Muffin is probably the hardest thing for me to do, and gets me tired real quick. So we usually play for 15 min at a time then take a break. She knows mommy needs to rest, and is really good about knowing my limits. I hate that she has to deal with a sick mommy with limits. This makes me emotional a lot, but I hide it pretty good until I use the restroom, and can cry about it in private. I never want her to see me cry.
1:00pm. I eat lunch. Lunch can be tricky based on the day. Most of the time J or my mom bring me lunch, and that is really nice. If they are both working then I get my own lunch. So on day like that I scoot on my office stool and roll out to the kitchen. I have to be super strategic when rolling around the kitchen. I try to only visit one section of the kitchen once. For example. If I am making a sandwich I roll to the cupboard and get a plate, cup,silverware, and napkin all at once. Then move to the fridge etc. it gets hard when I have to get things for myself and Muffin. Thankfully she is getting old enough to help me get things when I need her to, and carry the meals back to the bedroom.
We usually eat all together in my bed since that is where I am most comfortable. If I am sitting in a chair too long I start go get a lot of pain in my knees, and its also hard for me to sit and get up from a chair if its not the right height. So, the bed is just easier. We have become really good at eating in bed though. It has become a system.
For the remainder of the late afternoon, I will do more of the same as the morning. On good days, I have loved making hair bows for muffin. That is one of my favorite things lately, but I only get to do it when my hands aren't stiff which isn't too often. So, on days that they are stiff, I like to look up tutorials of crafty things on YouTube. I usually play with muffin too. We either play dolls, or My Little Ponies, or what ever toy she is excited about that day.
6:00ish- We eat dinner. That's the same as before. J usually makes it if he's home. I take my next round of pills (usually a pain med if I need it that day) Then we will watch TV together or play games. Muffin usually cons J into playing in her room since she is sick of being in mine all day. J is really good to pitch in and play with her until bedtime.
8:00- Muffin goes to bed. J gets her a sippy of her preferred beverage that night. I use the restroom again since my chair is loud, and I don't want to keep her from sleeping. I go back to bed. We do this funny little ritual that gets Muffin excited about bed. She lays in our bed next to me, and we pretend she is a Crabby Patty on the grill (she loves Spongebob). J is Spongebob and he uses his spatulas (his hands) to scoop her up, and flip her over. My job is to check and see if she is "sizzly" and hot enough to flip. So I "sizzle" her and act like she burned me she was so ready to flip, then J flips her. The more "sizzly" she is the more ready she is for bed. J usually flips her about three times. Then he scoops her up in her blanket (which we pretend is her bun) and takes her to bed quickly so he won't get burned by her sizzle. He tucks her in bed, then I turn on the baby monitor. We got a monitor where you can push a button and talk to your child in their room. So I usually talk to her and tell her a story and she asks me hum "Twinkle Twinkle Little Star" until she falls asleep. I do, and I love it.
8:00 and on- J and I usually watch some TV together or talk. This is one of my favorite parts of the day. J tells me about his day, what it's like out there in the real world, and we just enjoy each other. It's super peaceful and I love spending time with my best friend.
J usually goes to sleep first. So we turn off the TV and I just do stuff on my iPad until my body is relaxed enough for me to fall asleep. I use the restroom once more doing the whole thing with the office stool and trying my hardest to be quiet. Then come back to bed and take my last round of Meds. (Benedryl for allergies, and a pain med again if I need it). Then I go to sleep.
That is a typical day for me. It seems pretty basic, but I do a lot of those things while dealing with constant pain. A lot of people say that I am so positive, and I try to be. I have my ups and downs. Lately I have been able to stay relatively chipper. I do have to admit though that I probably cry in private at least once or twice a day. At first I thought there was something wrong with me, but now I really think it is okay to cry, and be sad. It is important to let yourself feel things. What is important is that after you are done crying, you pick yourself up, say a little prayer, and move on. A big part of staying happy is accepting my situation, and being realistic and truthful with myself. If I put myself in a situation where I am doing more than what my body will allow me to do, then I'm only setting myself up to fail. I am not saying that I just give up, and not try. I am just saying I try to be realistic about my abilities and limits. I almost need to listen to my mind and body separately since my mind will say one thing, and my body another. This is where the frustration comes from. My mind will say, " I want to do that!!!". And my body will say," NOPE!" And my body will always win. So to keep my mind happy, I sometimes have to cry a little to blow off some steam. Afterwards I try to put a smile on my face, and stay thankful for the blessings I DO have because let's face it, things can always get worse right?