Saturday, April 23, 2016
A day in the life of my chronic illness
I have been thinking a lot about wisdom, order and having a balanced life. Monday through Sunday it is a balancing act and I am lucky if I survive! Is it too much to ask to have a quiet sane life? Apparently my brain doesn't want to let me. Whenever I wake up in the morning I wonder what kind of day it is going to be for me. How much am I going to be able to handle and how insane are my kids going to drive me? How close am I going to get to the edge of my sanity? Are they going to push me to the edge of the cliff or are they going to push me all the way off? It was brought to my attention that I cover some topics, but too broadly. Where else would my readers like me to delve in deeper? I just worry about rambling on, which I can do if you want? ;) I like to keep things short and sweet because I often do not read long posts myself, because of time. So I pin them for later and they sit in Pinterest gathering dust and cobwebs.
I thought maybe if I shared what a typical day for me is like, you would understand what I have been prattling on about for so many years. Maybe it will help you feel stronger than you think you are or maybe not so alone.
I set 3 alarms 15 minutes apart so that I won't sleep in and miss taking my kids to school. On the first alarm I am not sure if it is day or night. I feel shaky and very aware that my body is stiff and in pain. I fall back asleep usually. Then my second alarm goes off at 7:15. I take a few minutes to sit up and say my morning prayers. I dread mornings but my kids have to be at school so I have some motivation there. I am still very groggy. It doesn't take lone before I feel nauseated. Some woman only get morning sickness when they are pregnant but not me. I wake up with it every day. Sometimes I am up before the 3rd alarm goes off but sometimes I have to massage my legs to get them moving. I praise myself for getting out of bed because about 6 years ago that was almost impossible.
Figure out what the kids are up to and how much getting ready still needs to be done. I make my shake because usually I can't eat much in the morning. I really want my mornings to be stress free but usually with 4 kids there is always something that needs my immediate attention. I lotion and change my three year old so he won't itch all day. He has really bad allergies. His allergies require a clean home that I cannot just keep up with. I sit down and read my scriptures and keep checking on the kids. I use to be able to wake up early for this but my body just won't.
A timer on the oven goes off and we head off to school. It is a loud one so they all can hear it. I drop 3 of my kids off and my 3 year old and I go home. I finish my scriptures while he listens to his on tape or watches a video. Then I figure out what I can do that day. If it is a high pain level I choose one thing that must get done. Then I break that into little chunks of time. Next, I shower to try to get my muscles moving.
Get dressed and stretch if I can. Usually I am chasing my three year old and he is pulling out everything we own. I try to do my most important thing for the day. I work 15 minutes and rest 30 minutes at a time.
It is time for me to grimace some more and eat some food. With the pain in my stomach I have to eat small meals every two hours. I clean up in the kitchen for 15 minutes and sit down and read to my little guy or play. I am ignoring the mess. I am ignoring the mess. It is so hard to stay mindful and just enjoy playing but that is what I need to do.
I go pick up my Kindergartner early. I enjoy sitting there for 30 minutes or so while my three year old is strapped in a car seat. It is even better than quiet time. We come home and eat lunch and clean up for another 15 minutes. Then I read to both of the boys and they go do quiet time.
I try, try is the key here, I try to blog and meditate. My three year old does not take naps. He is like a jack n a box, popping in and out of my room.
This is my afternoon routine. This is where I am usually done as far as energy goes. I eat another scoop of my shake and deal with all 4 kids being home. My stress is really high at this time so I do minimal tasks until dinner. I try to have a plan for dinner but that doesn't always happen.
We eat dinner and clean up. There is always battles at this time. Always! We are serious about getting ready for bed when 7 o'clock rolls around. The bed time battle is the worst. I do not enjoy bed time even though we cuddle together and read. It feels more like a wrestling match them calming. We have to do some more lotion and some medication for our little one and put him in jammies that he can't scratch himself to death during the night.
I am done! So done! I can't handle another thing. I think most parents can relate to this one. I can't clean up after this time so the house is however it is. I start to get ready for bed, journal and do relaxing exercises. I also do all my planning for the next day and remind myself of any events that day. This is also the only time my hubby and I have together. Sometimes it is more like 9-10 but I try to stick to this schedule.
I must be in bed by this time. I start to borrow energy that I need tomorrow if I don't. I need 8-10 hours of sleep but rarely get that from feeling restless or kids waking us up. This is where my fatigue cycle starts.
This schedule is if I am having an okay day. If the weather is stormy or too hot my energy is drastically reduced. If I eat something that makes my stomach angry that can ruin my whole day. If I worked too hard the day before, didn't get enough sleep or am too stressed; that can also take its toll on how much I can do. If I do too many social activities I might feel like I am going to pass out or have a foggy brain. As I was mentioning before I have to use wisdom and conserve my energy but move enough so I do not become completely bed ridden. It is a balancing game that I have not figured out yet. So many times I push myself too hard and end up in a flare for weeks. I get up the next day and try to do better than yesterday. I will never be pain free. I have accepted it. But it is so hard and isolating. I used to be so different. I mourn the loss of who I used to be and what I used to be able to do. However I am so done feeling guilty and depressed. So I continue to search and seek answers. Isn't that what God wants us to do? The word of God is powerful!
5 And now, as the preaching of the word had a great tendency to lead the people to do that which was just—yea, it had had more powerful effect upon the minds of the people than the sword, or anything else, which had happened unto them—therefore Alma thought it was expedient that they should try the virtue of the word of God.
As I seek to find balance for this damaged vessel I am strengthened and comforted by the scriptures and somehow I make it through another day. If I am not rushed and listen I am guided to what I should do and where I should explore next. I may be near a cliff but I am getting smarter and building guard rails. When I can no longer fall I will back away one step at a time until I make it to my heavenly home. What do your days feel like to you? How do you manage your time and keep your energy going?
I don't know how you do it! Have you ever heard someone say that? You just do....right? All the while balancing life with your super hero apron on!
Thanks for caring,