I started writing this the other day, but haven't really perfected it. I wanted to add some other things, but will do that when I get motivated to do it. I hope others will join in and post a typical day with RA. It helps to know what others are going through and that we are not alone. Sorry for the length here....
11:00 am – wake up feeling sick and exhausted. Take a ¼ suboxone as it is the only thing that I know is going to help me get moving today. I’m nauseous and so tired. The kind of tired that feels like your entire body is dying. I can’t stand the thought of anything to eat right now. I take a sip of o.j. with my mobic and feel like I’m going to throw up. My mouth is so dry. I drink water instead.
11:30 am – I start making coffee, in hopes that it will help me feel a bit less exhausted. While it brews, I sit down and pray. I pray that God will take away the pain, fatigue and sick feeling. I drink my coffee and love the feeling of the hot mug on my aching fingers.
11:45 am – I submerse myself into an extremely hot bathtub in attempt to take away the pain in my hands and entire body. I feel poisoned. I sit in the tub for 30 – 40 minutes; constantly adjusting the water to ensure it stays hot enough.
12:30 pm – Time to make lunch for my son and his friend. I go through the motions of the day, but feel like I am dying. I pray again. I need to work today, but all I can think about is lying back down.
12:45pm – cell phone rings for the 5th time. I check the number and realize it’s a client. I don’t answer. I don’t have the energy to talk to her right now. I feel terrible, I have clients with real problems calling me and I don’t feel like exerting the energy it will take to talk to them. Make a mental note to call them back later, when I feel well (when WILL that be?)
1:00 pm – My business partner calls. We’re supposed to go out seeking funding today at 2:00. I pretend to be excited about this and make plans to meet her. Inside I’m dreading this and wonder how I’m going to manage to get dressed and get myself out the door, playing the part of a healthy person. I cry. This is not the life I’d imagined. I contemplate calling a pain management doctor.
1:15 pm – I rush around the house cleaning up as best I can. This is my attempt to make husband think I don’t sit around all day doing nothing.
1:45 pm – in the car driving to meet Sabrenia for a business meeting. The car is the worst time for me. I’m alone with my thoughts and pain. I turn the radio on to the Christian station and want the words to wash over me and take away the physical and emotional pain. It’s not that easy. I change the station to pop music, hoping to get some energy. Not happening. I sing….
five hundred twenty five thousand six hundred minutes
five hundred twenty five thousand moments so dear
five hundred twenty five thousand six hundred minutes
how do you measure? measure a year….
Silence. Even “Seasons of Love” isn’t getting me out of the funk. I feel the kind of pain that makes you hurt with every fiber in your body. I think about calling my best friend, but can’t will myself into the peppy mood I want to be in when I talk to her. It’s been 3 weeks since I’ve picked up the phone “just to chat” with her. We usually talk every day. I wonder if she thinks I’m mad or something. Make mental note to call Carey when I feel better (when WILL that BE?????)
2:20 pm arrive at my destination. Sabrenia is waiting inside the building. I’m in the car where it is hailing. I tell her I’ll come in when it lets us. I close my eyes and pray. I am startled by the ringing of my cell phone. It’s been 30 minutes…..I fell asleep. The rain has stopped so I go into our meeting.
4:00 pm – driving again. Hating being in the car. I realize I haven’t eaten yet today. I go to the mall. Check out the food court and decide I shouldn’t eat…must lose those 30 lbs. I do what I normally do when full of anxiety and unease…I shop. I feel instant relief from the dark feelings when I shop. I buy things that used to look cute on my 6’ 130 lb body, but no longer really look good with the additional 30 lbs. I feel safe when shopping…for awhile anyhow. Feel guilty being in the mall and leave.
5:00 pm – I’m home. I’ve missed my guys. I try to throw together a palatable dinner for the guys. I eat some carrots and a bowl of low-calorie ice cream. I crash on the couch after that. Husband tells me he’s tired. I wonder if he has any idea the kind of tired that I feel. I want to sleep forever.
The rest of the evening is doing odds and ends like checking emails, surfing the net, doing bills, returning phone calls, writing grants, etc. I get an energy burst about 10:00 pm when husband goes to bed. I don’t know why. I spend that time cleaning, organizing, watching tv with my son, etc. I go to sleep somewhere around 11 or 12 after taking a handful of meds. I sleep about 12 hours, awakening the next morning at 11 am or noon. Fortunately, my son is a late sleeper :)
You have pretty much said it all. At least you get out. I can't seem to go out at all. Driving anywhere, even to the drug store, is utterly exhausting. I keep waiting, waiting, waiting, for the medicine to work, but nothing seems to.
I sleep a lot, and am still exhausted. I've gained 100 lbs this year from the immobility, the prednisone, the utter depression. What a wretched disease this is. It has taken away my ability to earn a living, my self esteem, even relationships. When will it end?
Oh sweetie, I SO understand. I know that exhausted to the bone feeling but good for you for at least getting out and next time, buy something cute for yourself!! I too have gained a lot of weight, 70 pounds in total but it is possible to still find something cute!Please read the Protein Power Lifeplan chapter on autoimmune diseases. It could be an answer to your prayers. It wouldn't hurt one bit to try it. Please, please try!
a typical day in my life
I haven't slept well during the night, got up about 3 times , once to take a pain pill, the others to go to the bathroom. I listen to my cD player with a recorded books of Mark Twain....It is about 2 am and I know I'll wake again at 5 am. At 5 my husbands is already up and getting ready to play golf (I'm too tired to play today, whatelse is new?!!), I have coffee with him and after he leaves at 6 , I go back to bed. I want to go to my art group at 9, so I sleep until 8am. I get up, put all my laundry in the washer, take a shower, check the phone and emails, and the forum. I need to get my art stuff together in the back of the car, get the library books that need returning and go to the class. It takes me a while to organize my stuff so I go early. Stay for the whole class , 3 hours on my feet, they hurt a little. After class I take the library books back, go to the market for broiled chicken and ice cream to haul home. My husband has been home for awhile and made 'spaghetti' for us. we eat chicken/spaghetti and salad. I take a nap at noon and tell my husband to wake me for my hair appointment at 2:00, I drag myself up and drive to the hair dresser, go by the eye doctor to make an appointment and after my hair is cut pick up another prescription for 1 mgs of prednisone! (it seems like I am always getting more pills at that place!!), I get home and watch a little TV, before going out to a movie at 6...I've felt tired all day and as though I am 'walking through water', slow, methodical and without enthusiasm. I want my cheerful self back, I want to laugh more, and enjoy life......maybe next month, after all the new meds, and no more prednisone!! thanks for reading this everyone. me
Have any of you considered that you may be wheat gluten and/or soy sensitive? This very well could be the cause of this terrible, terrible disease. Drugs will never get to the root of the problem. Only by removing the things that the body cannot and never will tolerate will we ever have a chance of healing. Ice cream, spaghetti, etc., are POISON. Please fight to get well.
Oh our days are so limited.
I wake at 7am during the week.I have my meds and a coffee in bed( brought in by hubby).
I lay and watch the news until 8am, in between the kids all come in and chat and ask if i have seen their stuff..........( i tell them i dont wear their clothes
Hubby takes eldest daughter to the train and other 2 to school and comes home to help me get up, in the shower and dressed. By this time my stiffness is easing and I venture downstairs.Hubby goes off to work.
I have a bowl of cereal and check computer, "SAY HI TO YOU GUYS"
At 10.30 my friend comes down, we chat, she takes me shopping or we go visit another friend or if the weather is bad we watch all the trashy t.v. chat shows
My aide comes at 7:30. She wakes me up and hands me my meds. Sometimes my hands are so stiff that she has to put them in my mouth. I go back to sleep, relieved that Angie is here and will put the animals out and feed them. I also know that I will wake up feeling better.
Wake up again at 8:30, excited to visit with Angie and Kelsey. We sit outside on patio and gab for about 30 minutes. Kelsey loves Angie. She hovers around her and helps her in kitchen. I get on computer and wait to feel like moving. I eat a yogart and take more meds. My stomach is raw from meds.
9:30 I feel guilty that Kelsey and Angie are busy and I am not. I get up and start helping Angie. Some things I can do, some things I can't. She always says you are over doing it. I will water, fold clothes, sweep, anything that makes me feel useful. This is the best part of my day.
11:30 Angie scolds me for working too hard. She reminds me to take my painpill. I go lay on the couch. She makes lunch and the three of us have lunch together. I start feeling sad that Angie will be leaving soon. She makes my life so much better. I know how blessed I am to have her and Thank God for her everyday. Angie does her last minute stuff, we go over what meds Kelsey has to take and what I have to take.
12:30 Kelsey and I sit on patio and visit. We have very strange conversations. Usually we connect and can laugh together. Sometimes she gets mad that "I don't understand her". She is obsessed with sex lately. I am glad she is comfortable talking to me about it but it always leads to me thinking "OH MY GOD, what if she gets pregnant
1:00 I lay on the couch and watch TV. Bored. Maybe get back on computer. By 2 I am asleep. I wake up around 5 or 6. Kelsey sleeps during that time too or if she is hyper, she will walk down to the skatepark which makes it hard for me to sleep. I worry but she is 25. She does chores for money and spends it as soon as she gets it at the Walgreens - walking distance from home. She knows I do not drive hardly at all anymore.
6:00 - I let my big dogs in and my little dogs out. We both decide we don't feel like making dinner. Kelsey makes a potatoe for herself with lots of toppings or a tv dinner. I make myself a quesadilla or a sandwich. Pretty much the same every night
I take a pain pill, watch a movie Angie rented for me. In the middle I pause it because I am feeling better. Then I do crazy things like get up and do dishes, go outside and water, or plant something or pull weeds. My yard is my haven. I love working out there in the morning and at dusk.
I come back in, tired and sore. I watch the rest of the movie, go give Kelsey her nighttime meds, she spends the evening in her room talking to her imaginary friends. I hear her in the background and as long as she is laughing and sounds happy, I am used to her imaginary friends. Sometimes she even brings them out and introduces them to me. Her room is her haven. She has fairies and flowers and all kinds of feminine things and keeps her room immaculate. The rest of the house she is a slob. There is always pee on her bathroom floor and clothes.
I stay up to around 11 and amazingly, I go back to bed. If I am flaring, I wake up several times, but lately, it has been wonderful - I sleep through the night.
Weekends are tough. We struggle. Angie does not come. I try hard to pick up after us so Angie only has to do the basics. I miss her. I try not to focus on BEFORE. Who I used to be. I was never home, always on one adventure to the next. My family invites me to do things, Angie invites me, I don't want to go. I always regret it. It hurts too much and I don't like to "fake friendly" when I am miserable. I drive down the street and rent three movies for the weekend. I also go through the drive through chinese or hamburgers.
Do I have a boring life or what ????? My animals are my excitement. I appreciate every day that Kelsey is out of the facility but she is not much company. She enjoys the voices in her head more. Who can blame her - I have turned pretty darn boring
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