How Chronic Illness is redefining my "normal"
(I am sorry in advance for any spelling and grammar errors...My mouse is being annoying and I don't have the patience or spoons to deal with it...)
Over the course of the past few years I have gone from a very busy person doing pretty much what I wanted when I wanted to a person who is controlled by my body's ability or lack there of. As I am typing this I am in my beautiful craft room filled with supplies for me to make beautiful cards and other creations...but most days I cannot sit long enough to create anything. I am at a loss to try to get others to understand just how frustrating and debilitating it is to live in this body that has been taken over by Fibromyalgia, Myofacial Pain Syndrome, and CPTSD (My "big 3" but not the only medical issues I am dealing with.).
A little background- I have 5 children and up until the oldest was in 6th grade we homeschooled all of them so I was mom, teacher, nurse, principal, gym teacher, music teacher, art teacher, driver and all of the other roles a homeschool mom fills. I was tired and beginning to feel like my kids needed for someone else to be all of those things so I could just be their mom. (I am in no way saying that all kids need this, homeschooling is a tremendous way to give your kids a strong foundation and I am 1000% for it!) Our family was just at a point where it was what we all needed. After a year "break" I went all in and became a full fledged PTA mom and was very involved in volunteering and I really enjoyed it with all of my heart. I am very proud to say that I ran a PTA free from drama (until the end, but I had no control over that....which is a story for another day). I also finished my Associates degree ( where I stupidly racked up a ton of student loans that I don't know how I am ever going to pay back...)and started working in the school district.
Fast forward to 2018 where I was not working for the district anymore to focus on getting my crafting business going (and leave the DRAMA). I worked once a week watching 2 very sweet and rambunctious little girls ( who were 3 and 1 at the time). I absolutely loved this! They were a handful (as all little ones are) but I loved reading to them, playing with them, showing them ways to deal with their frustrations and just loving on them. At some point during this time I started experiencing extreme sensitivity to touch. When the little girls would climb on me I literally had to keep myself from crying it hurt so much. They were not doing anything wrong or different, toddlers climb on people, it is totally normal! What was not normal was that to me it felt so painful that it brought me to tears and it made it hard to care for these little sweethearts. When this type of pain did not go away and with my ongoing joint pain that I have had for awhile (I thought due to past injuries) but just continued to get worse I made an appointment with my doctor who then referred me to a specialist. It would be over a year later that I was formally diagnosed with Myofacial Pain Syndrome and then not long after that the diagnosis of Fibromyalgia was also added. While it was great to get a diagnosis finally, I was (and am) in pain every day and unable to do a fraction of what I was once able to do.
I am still unable to do much on a daily basis due to pain. Sleep is very rarely restorative and sometimes makes my pain worse due to pressure points. This past couple of week I have has to sleep in the recliner in the living room and even then there have been a few days I only got about 2 hours of restless sleep. That alone would make it hard for most people to function but add to that pain in my SI, back, neck, knees, and ankles and life is just hard and most days I just "get by". When I get up I usually make myself breakfast (eggs if I actually feel hungry). As I am making my breakfast I unload and load the dishwasher and when I am done I literally have to rest for several hours because I am hunched over in pain...FROM 10 MINUTES OF WORK!!! It makes me constantly frustrated. On the rare days I do manage to make dinner it is basic at best. Lunch is usually quick foods that I don't have to stand much to make. Grocery shopping wears me out so I use SHIPT to get my groceries delivered. A load of laundry takes me all day to do and several days to fold and put away.I am going to the gym as much as I can (we only have one car so that limits my ability to do much) and some days (like yesterday) all I could manage was to ride the bike for 8 minutes and use the hydrotable before I left (bent over from pain...)I did manage to go to Wal-Mart for some things and only because I used the cart to keep me upright. At one point a woman was in the aisle coming the other direction and she thought I was trying to get past her and said let me move over a little so you can get by. I told her that there was room to get by I was just not sure which way I wanted to go and that honestly I had hit my limit of shopping. She just smiled and went back to shopping, but I literally was DONE. I turned around got the last few things on my list and went home...and came home and rested for a couple of hours then made dinner. I made meatloaf and mashed potatoes (no energy left to make a vegetable because I either had to go to the downstairs freezer to get a frozen one or peel and cut carrots to cook and that was too much work). The last time I made meatloaf I was in so much pain from mixing the meat by hand (the cold was too much) that this time I mixed the meat with my Kitchenaid mixer. I put the meatloaf in the oven then went and sat down for about 30 minutes in the recliner then I got up and cut the potatoes ( not energy to peel them) and put them on the stove to boil while I went back to the recliner. When the potatoes were done I managed to make the mashed potatoes and dinner was done...and so was I!
I got up today and remembered that today was trash day so I got dressed (most days I stay in my PJ's) and grabbed my boots and went to the living room. A quick glance out the window above the front door told me that the trash cans were not at the curb yet so I put on my boots and walked down the 2 flights of stairs to the garage (after I grabbed the overflowing bag from the kitchen first). After both cans were dragged to the curb in the snow (only a little bit, maybe an inch or so and the driveway is already mostly melted after a couple of hours) I came in and went up both flights of stairs again. That is probably all my body can handle for the day...that is my life. Pretty much one "big" task for the day is my limit.
I am still unable to do much on a daily basis due to pain. Sleep is very rarely restorative and sometimes makes my pain worse due to pressure points. This past couple of week I have has to sleep in the recliner in the living room and even then there have been a few days I only got about 2 hours of restless sleep. That alone would make it hard for most people to function but add to that pain in my SI, back, neck, knees, and ankles and life is just hard and most days I just "get by". When I get up I usually make myself breakfast (eggs if I actually feel hungry). As I am making my breakfast I unload and load the dishwasher and when I am done I literally have to rest for several hours because I am hunched over in pain...FROM 10 MINUTES OF WORK!!! It makes me constantly frustrated. On the rare days I do manage to make dinner it is basic at best. Lunch is usually quick foods that I don't have to stand much to make. Grocery shopping wears me out so I use SHIPT to get my groceries delivered. A load of laundry takes me all day to do and several days to fold and put away.I am going to the gym as much as I can (we only have one car so that limits my ability to do much) and some days (like yesterday) all I could manage was to ride the bike for 8 minutes and use the hydrotable before I left (bent over from pain...)I did manage to go to Wal-Mart for some things and only because I used the cart to keep me upright. At one point a woman was in the aisle coming the other direction and she thought I was trying to get past her and said let me move over a little so you can get by. I told her that there was room to get by I was just not sure which way I wanted to go and that honestly I had hit my limit of shopping. She just smiled and went back to shopping, but I literally was DONE. I turned around got the last few things on my list and went home...and came home and rested for a couple of hours then made dinner. I made meatloaf and mashed potatoes (no energy left to make a vegetable because I either had to go to the downstairs freezer to get a frozen one or peel and cut carrots to cook and that was too much work). The last time I made meatloaf I was in so much pain from mixing the meat by hand (the cold was too much) that this time I mixed the meat with my Kitchenaid mixer. I put the meatloaf in the oven then went and sat down for about 30 minutes in the recliner then I got up and cut the potatoes ( not energy to peel them) and put them on the stove to boil while I went back to the recliner. When the potatoes were done I managed to make the mashed potatoes and dinner was done...and so was I!
I got up today and remembered that today was trash day so I got dressed (most days I stay in my PJ's) and grabbed my boots and went to the living room. A quick glance out the window above the front door told me that the trash cans were not at the curb yet so I put on my boots and walked down the 2 flights of stairs to the garage (after I grabbed the overflowing bag from the kitchen first). After both cans were dragged to the curb in the snow (only a little bit, maybe an inch or so and the driveway is already mostly melted after a couple of hours) I came in and went up both flights of stairs again. That is probably all my body can handle for the day...that is my life. Pretty much one "big" task for the day is my limit.
FRUSTRATING ANNOYING UNFAIR...but it is my new REALITY
I don't share this for pity. My hope is that maybe people can understand a little bit about how a person with chronic illness feels and what they have to deal with. I try on a daily basis to give myself grace and be patient with myself. I also try to celebrate the wins. I made dinner yesterday and have enough for dinner today as well...SCORE!! Maybe today I will add a vegetable. Sitting at the computer writing this have triggered my back and I will go put on a lidocaine patch ( my pain specialist recommended them when I went to see her Monday) and rest for a little bit. Then I need to try to make a card for my daughter's birthday. She is leaving for a trip for a few days so I want to give it to her before she leaves. I also need to mail some things and finish working on some other cards but that might have to wait.
I share this as a sort of explanation to my family and friends....
- I miss you and I want to hang out and play games/catch up...but I just don't have the spoons for it at the moment
- I want to clean and organize my house...but I have to take it very S L O W
- I have so many ideas for cards, scrapbook layouts, T-Shirts, photo albums, recipe books (I have only been working on these for 2+ years, no big deal...)
- There are so many books I want and NEED to read, but I cannot read for long
- I know I missed your birthday, Christmas, and other cards....I'm sorry, maybe next year
- I have not forgotten you, I am just over here barely surviving each day, but you are in my thoughts more than you know
Sorry this is so disjointed and probably hard to understand at points, but this has been on my mind recently especially since my youngest son left for Illinois for a year to go to school to be a mechanic. As the day approached for him to leave I helped as I could. I bought him sheets, some household items, and easy prep shelf stable foods from Target via SHIPT. I wanted to make him some fresh homemade cookies...no energy. I wanted to make him a nice homemade dinner...I made frozen chicken strips from a bag. I wanted to help him load up his car...I watched from the chair in the kitchen.
I am literally crying as I type this because these chronic illnesses have stolen so much from me. I cannot be the mom, wife, and friend that I so desperately want to be. I am working on it and learning self care. I am reminded about the warning that you get on a plane...in an emergency put the oxygen mask on yourself first so you can help others. I am at the stage where I am figuring out how to get the oxygen I need. It is a process and I know I will get where I want to go...I just wish it would happen faster. Please bare with me...
