A Day with Chronic Illness

Have you ever wondered what someone who has a chronic illness does all day?

Or maybe you yourself have a chronic illness and you're tired of people assuming all you do is watch tv all day?

Well I thought I'd lay out a day in the life with chronic illness, so those who are healthy get a better understanding and those who deal with similar things that I do hopefully will feel less judged. So starting with yesterday, here are a few of what my days look like-

Monday

• Woke up naturally, which yesterday happened to be 9:30, still adjusting to the time change. I laid there as I breathed waiting for the oxygen to wake up all the rest of me too.

• When I could sit up, I had breakfast in bed, as usual. If I get moving too quickly in the morning my body will fail on me a lot sooner than if I let it have it's time.

• My stepdaughter was on spring break and also Mondays are cleaning days, so we all teamed up and cleaned the house. For me that meant disinfecting and switching out towels. My husband and stepdaughter tackled the rest.

• Then I needed to rest, which meant sitting up in bed with my legs up, today trying to sell some supplements I couldn't use. Sold in one day. Woohoo!

• Lunch consisted of heating up some gluten free chicken nuggets and some veggies. It has to be simple because the more I do the more I have to rest and can't do.

• Since it was spring break I planned to join my husband and stepdaughter to do something fun in the afternoon, but my body was iffy. If I pushed to get ready- change clothes, hair and makeup, I'd be so weak it would be pointless to even have me join them. So I had to decline. 

• Instead it was back to the bed to put my legs up. There I edited my husband's sermon because he worked ahead and already had it done for this week, and then did our weekly expense log to keep track of our budget. 

• Again, I rested, again just browsing, things that don't use my muscles or my mind because I need to rest all of me.

• Dinner time. Since my husband wasn't home I made a quick smoothie, then washed the glasses.

• Rest. Notice a theme here? Before and after everything I do I have to rest, in order to keep doing more. Here I read a book, or part of one until my husband got home.

• Couple time. Every night we try to have this. It always consists of reading the bible together. Tonight it also consisted of catching up on a few shows we taped- The Voice. We're both pretty into it.

• My blood sugar dropped so that kind of makes everything stop til it goes back up. My husband threw in a frozen gluten free pizza and it was stable again.

• Get ready for bed, pray and go to sleep.

Tuesday

• My husband had his alarm set for 7:45 which woke me up but I tried to sleep a little more. 

• I decided to try something different this morning. As soon as I got up I went and road the stationary bike... for 5 whole minutes! It's an accomplishment, trust me. 

• Rest sitting in bed with legs up while having my breakfast. I also connected online with my stepmom group to share a cute funny story. Love the support we can give and receive there!

• Again, I decided to try something different. I took a shower lol. That sounds funny but that's not what I mean. Usually I take it in the afternoon or evening because it actually drains me physically quite a bit. But since I knew nothing was planned physically for today I took it in the morning.

• Rest. While resting in bed with legs up my husband texted asking if I could do some editing right away.

• I edited the invite letter he is about to send out for a luncheon. Then I edited the bulletin for this week. We're definitely ahead of schedule this week! Editing normally happens on Thursdays and sometimes Fridays.

• Then I got an adrenal surge, it's not as fun as it sounds. It's as if the inside of you wants to go 100mph but physically you can only go like... 10? I tried to use that time by putting away the rest of the dishes drying in the sink. 

• Lunch was another smoothie but half way through the adrenal surge crashed. I also got really dizzy and had to sit and do nothing.

• While my husband was home for lunch I helped him get some mailings done.

• He went back to work and I went back to rest.

• And now I'm here writing this.

• After this I will be working on our bible study for this week- which means watching the video, reading a chapter in the book and preparing some questions for our group. I'll then send it off to my husband for review.

• I'm guessing after that I will have a little time to rest, maybe read a book or connect with one of my groups or friends online if my eyes aren't too weak

• Dinner tonight is burgers but it's pretty cold for my husband to grill so we may be making them on the stove which depending on how I feel will be up to me, both of us, or just him to accomplish.

• Again depending on how I feel I may wash a few dishes or throw them into the dishwasher.

• After that we usually finish up whatever needs to be done and/or I rest before having our couple time again at night.

• Get ready for bed, pray and go to sleep.

So yes, there are times in there when we with chronic illness may do nothing but rest- but it's not because we choose to it's because we have to- in order to do all those other things throughout the day. Notice watching tv was only mentioned once- with my husband- for relaxation together at the end of the day. Not all day long, not every day. 

We with chronic illness still get things done... it just takes a little or a lot longer and we have to do things differently. For me that means sitting in bed with my legs up, having a lot of quiet time to myself to not over stress my adrenals, and having my husband and stepdaughter help if and how they can and are willing so I don't overdo it. 

Some days I'll have to rest more, some days less, but every day it needs to be included. Some days I'll get out for groceries, appointments, bible study, date days/family fun/lunch etc. But others I don't and can't because it's important to remember going out means changing clothes again, doing hair and makeup. That is extremely exhausting for someone with chronic illness, which is one of the biggest reasons we stay in a lot. When I already have church on Sunday, bible study on Wednesday and add a date or family time in there- it's tough to add anything else. Adding something else means also adding in a lot more rest time not only for the activity itself but for getting ready for it and after- which takes away from anything else I need to or can do.

I'm not the same as everyone else so I can't do the same things as everyone else. But God made me unique for a reason. And right now I'm thankful that the reason is I can support my husband behind the scenes in ministry. 💙

He Lifts Me

The biggest thing that pains me is not being there for my husband how I feel I should be. I want to be by his side every Sunday as he preaches. I want to cook every meal every day, have the house cleaned and kept up without struggling and having to ask him to do it with me. I want to be able to dress up every day to look pretty for him, to be able to go out on dates more often and not have to reschedule due to illness. I want to be what a wife is called to be- a helpmate to her husband. But I can't and I won't with this disease that brings me down, at least not in the ways I feel I should be. And that hurts me all too much.

Ladies don't complain about housework, errands or having to attend another outing with your loved ones. Too many of us wish we could have those days back. To many of us fight for another day to not be able to see it. Too many of us are crying on the inside while trying to perfect this look of we've got this. We try, we fail and we do it all over again. Every day. At least that's how we perceive it after failing so much it brings us down. Failing to a disease not even our own selves.

I just want to be there for my husband, for my stepdaughter, church, family and friends. I want to get out to even be able to make friends here. I want to be a mom, at least a stepmom- what a stepmom should be, or something of the sort geeze even more of a help to my dog. Yet too often I lay here in bed wanting what I can't have as chronic lyme takes me down, failing yet again to beat it.

I hear the world screaming failure, incomplete, lacking, lost, broken, loser, never good enough. I hear it through false perception because the world I once had was grabbed out from under me replaced with this. And then I feel I'm never good enough. Never up to what I used to be. Never as great as the world calls me to be. It's a depressing post but it's important you see the quality of life with those who live it. We post photos of laughter but we cry miles of pain. Crying out to the only one who can bring it.

I don't answer to the world, I answer to it's Creator, my almighty God who feels my pain with me. And He's got His hand in this. Lord and Savior I need it. I give you my life, make what you need from it, lift me from my pain and let me feel it. Holy Spirit surround me and fill me with Your presence. It's only from You Lord I am filled with all I need in life. You and only You are my amazing rest in it. Love me, stretch me but at the end of each day please just bless me. I cry out to you Lord in need of great redemption. Complete me through this pain, prepare me for your presence. In heaven I'll be restored, no longer a burden of restlessness. Until then I lay awake of this world around me, feeling both my pain and yet also Your presence, hoping to be something to someone in need of direction to the life which comes after this.