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Hi,

I am working with an Occupational therapist. She asked me to write a daily journal of my day. This was two weeks ago. She will be coming tomorrow.

I am trying to build some sense of rhythm to my day for my well being and to help my dysautonomia (I am home bound due to its severity) 

My request is for others to write out their day. Sometimes I sleep for 13 hours. Sometimes it takes me a very long time just to eat a bowl of oatmeal.

Seeing things written down has been helpful, but also a bit sad. I pretty much do the same thing every day and it’s looking like the diary of an 85 year old woman.

There is room for change, and part of this is not being on the second floor with no elevator, but for now, this is where I am at.

Please help me by letting me know what you did today (even if it was stay in bed all day) because it will really help a lot. 

I have terrible blood pressure issues, I can’t be upright for very long, and so far, I’ve been allergic to nearly every drug for help, but Midodrine. 

But, that’s a topic for another day. 

Thanks in advance.

 

 

 

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I'm a college professor.  Some days I teach, other days there are no classes.  Either way I try to get in to school before 8am (to get a convenient parking space).  I generally eat breakfast in my office while I get my thoughts straightened out for my 8:30 class.  Class 1 is 8:30 to 9:45, class 2 is 12:45 to 2:00.  Monday and Wednesday there is also a lab for class 2, which is 2:10 to 5:00.  I do not stand up to teach.  Maybe some of the period, but certainly not the whole time.  Standing the whole time would result in too much fatigue, lightheadedness, and brain fog to be able to do additional work that day.  I sit cross-legged on a table in the front of the room instead.  College professors are allowed to be eccentric, so it works.  After classes I work in my office, usually with my feet on the desk.  If I am too fatigued to think or get started on work, I take a nap.  I also have an under-desk elliptical trainer, which is the only way I have been able to get in my cardio these days.  I eat lunch before the 12:45 class, and sometimes I get hungry later in the afternoon.  About 5 pm I go home, usually tired.  I may take a power nap.  I try to have lights out before 10pm, but I am not always successful.  I generally save housecleaning tasks for weekends, but sometimes I hit up the grocery store on the way home during the week.  I also try to get to the gym twice per week for weightlifting.  I have been feeling better recently after starting to make and drink 2 quarts of Pedialyte-style electrolyte replacement drink.   I hope this helps!

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Wow Lily! Your so productive and have great techniques to help you thru the day. Sea-poet, I too am home bound and unable to leave my home for any length of time. I started to write down my day today after seeing your post and sadly it did depress me too. What you have to remember is none of us are the same. We all have limitations - some more than others. I hope your OT can help you explore furthering your productivity during the day. But try not to be too hard on yourself. Take care.

Terriann

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I made a schedule for myself when I stopped working and felt I needed a routine. I feel like my activities resemble an old woman too:) I made my day general, but there are some days I am in bed more, some days I can be up more. 

730 coffee in bed

800-1200 take medications, get dressed, light breakfast, watch local news and weather. Put a roast in the crock pot for supper. Today was my day to go out and have my hair washed and dried. Other days, I do small household tasks like tidy up the kitchen, make the bed. Today I just did them later. I rest in between things as I need to, so the morning seemed to go by fast.

1200-1300 Light lunch and did some reading on the computer, checking email and the dinet site, read some information on pots from Dr. Blair Grubb.

1300-1600 Usually rest time. Sometimes I listen to some old talk radio podcasts( Bruce Williams), relaxation music, or quiet.

1600-1800 I make a cup of coffee and watch the Ellen show some days at 1600. That often cheers me up, as she has some funny or cute things on. Some evenings I talk on the phone to my sister, about once a week. I do any supper prep, I try to do things that can be put in the oven to bake, salad in a bag, or veggies that can be microwaved. I take a bath and put on my nightgown, and by then, supper is ready.  I usually eat in bed, since I have an adjustable bed I can sit the back up, and have my legs up. If I eat in the kitchen, I prop my legs on an extra dining room chair. Sometimes my husband is home, and my daughter gets home from work, and we visit a bit. 

1800-2100 In bed. I listen to the local and national news. My husband tells me about his day. We usually have Wheel of Fortune and Jeopardy on tv. Then we watch something we have recorded. We like General Hospital, (I have been watching it for 40 years, since high school), and a new show called The Good Doctor, Dancing With The Stars. I fall asleep by 2100 and sleep until 0730. (up to the bathroom once)

Sometimes it seems I have not done much during the day, it seems everything takes longer. I drink water and Gatorade all day.

 

 

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I'm pretty much a creature of habit - doing the same thing usually keeps me from feeling awful. 

Yesterday I woke at my usual 5:55 but stayed in bed until 6:40 because I felt like I was in a coma (I justified the late start time because I just washed my hair the day before and it didn't look or smell that bad so I could skip and stay in bed longer).  Then I took my thyroid meds and woke my kids.  I popped 2 salt tablets and took a shower (but the water kept going too hot and then too cold so I was getting paranoid that I would start getting symptomatic) so I made it a quick shower and put on my compression stocking ASAP.  I took my blood pressure and ate a bowl of my gluten-free buckwheat flakes (with lots of salt on top) and then popped yet another salt tablet and then 1/4 Methyldopa tablet.

We were running late to get my younger one to school so I yelled at her to run ahead and catch the bus for me (which she did) so we wouldn't have to make the dreaded 10 minute walk to her school (she got off the bus herself so that I wouldn't have to wait around 15 minutes for the next bus.  I then transferred from the bus to the subway and prayed that a train would come right away and that I'd get a seat.  I only had to stand waiting for 3 minutes so it was a win-win situation.  I made my way down to the first few cars to try to beat the others for a seat.  It got pretty hot on the train so I had to peel off my jacket and drink 1/2 bottle of water but I made it to my stop ok.

I made the 4 minute walk to my job ok, stopped by McDonalds and picked up my daily bacon egg and cheese (more salt) and ate that at my desk.  I started work at 9:00 (sat most of the day with multiple trips to copier/bathroom/kitchen/bathroom/bathroom and bathroom :) I drank about 6 bottles of water in total throughout the day and ate about every 2 hours to keep my blood sugar in check (cheese sticks, ham sandwich, yogurt, chips and guac followed by another couple of salt tablets).

I usually work until 5:00 with my husband picking me up (I don't do well after being at work all day) but I left at 3:00 since it was Halloween and I wanted to help the kids dress and get dinner made early.  I had a mini-freak out in the car home because I forgot to bring a bottle of water with me and we were stuck in traffic.  I was ok though.  Husband dropped me at home and he went to pick up my daughter at after school (because I couldn't possibly do that being at work all day).  I made some quick homemade meatballs and pasta and sat on the couch.  I made sure to walk to the door slowly when the kids came knocking for candy.  I didn't go with my own kids because that would mean me climbing up and down hot stairs (kids hog up the elevators in our development). 

My kids and their friends came back to the apartment but my husband hadn't come back from his meeting so I got a little panicky that I'd have to walk one of the friends home and at 9:00 I really am not doing well (my feet are big swollen balloons by then).  I had to bite the bullet, chugged down some water and had to speed walk the 15 minutes each way to get her home (anything slower and I wouldn't have made it).  My legs were starting to get uncoordinated like jelly and I didn't think I could make it so I walked faster and faster, kept yelling at the kids "hurry up".  I returned home in a big sweat and headed to bed so I could put my swollen feet up.  Then I just watched tv and fell asleep (followed by more snacks and another salt tablet, of course).  It was a really good day for me!

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If you had asked this in  2014 I would have said resting for 45 minutes up trying to do household chores or some floor exercise for 15 mins . I didn’t believe I would ever be able to work again especially teaching ballet 

Three years on I am back working full time during term time , I run a ballet school three afternoons a week and recently started a baking business so I can work around my symptoms / bad days. Each day is different for me routine wise but I write a plan ever Sunday for meals,shopping, must do list and exercise /quiet time ideas, helps me with the brain fog ! Also means I don’t have to think if I really need to delegate any job due to a bad day . Every morning after making hubbys lunch for him to take to work I sit with a coffee and decide around work  committments, chores exercise and most importantly my rest time .

Accepting that a rest time even if it’s most of the day is not time wasted it’s an investment in my health,

 

 

 

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I work part time evaluating attorneys across my state. So I'm only working maybe 1-3 days a week. But when I am working, I'm traveling. Up to 7 hours of driving somewhere, sometimes leaving at 2am, then a day of court, and then driving back home. So I'm out and about for 18+ hours straight sometimes. The way I see it, it has pros and cons. The long work days, and especially hours sitting upright in a car, are incredibly rough on my body. I have to be hypervigilant about hydration and not eating anything that my body will react poorly to. I often take a nap after court prior to driving home, and dress in layers to help with my body temperature regulation issues. That being said, I have up to 5 days a week off, which helps me rest and stay healthy. It's just about powering through the rough days and then being allowed nothing but self care the rest of the time. 

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This is such a good idea to give others hope and insight!

my day starts at 6:30am drink a bottle of water before even attempting to get out of bed it helps a lot and I do this every single day! Get up and get my kids up for school and be ready by 8:30am to get out the door. I have to shower at night I can not do it during the day or morning it causes too much adrenaline in my body. I get to work after a very yucky drive which is only 10 minutes away but driving is still very difficult for me to do atm. I work at a primary school helping students so I am on and off my feet until 2pm when I get to take that wonderful drive home! I’m lucky that my other half picks up the kids from school so I can come home put my feet up and nap upright for about 30 minutes before they get home. I help with homework my partner makes dinner then I clean the kitchen and prepare lunches for the next day and then fall into bed after having a shower at about 10:30pm. I make sure I drink 2 litres minimum of water and I have the odd cup of tea. I can not handle coffee or anything with two much sugar like soft drink or even cordial as the sugar sets of my palpitations. 

I struggle to get through every day and at the moment I am just living to work and earn a living for my family. I am physically and mentally exhausted when I get home and the weekends are spent recouperating and not being able to do anything except try and prepare for the week ahead!

A side note I was diagnosed a year ago and I want able to walk without a walker and couldn’t be on my feet for more than a couple of minutes so I am very thankful I have recovered this much I’ll take whatever I can get!!!

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Keeping the journal sounds like a great idea.  I'd like to try that.

I'll tell you my day so far and my plans for the evening:

Up at 7:30 and got the dog outside.  Then I had some cereal for breakfast and took all my meds.  I spent most of the day knitting and watching tv.  I'm trying to get a jump on Christmas presents.  After lunch of a peanut butter sandwich, I did some research on the computer and took a nap.  I was going to cook dinner and realized that I had miscalculated the cooking time for my chicken so tonight will be left-over chili and we'll have chicken tomorrow.  For the evening, I'll probably knit a little more and watch tv and talk with my husband and daughter.  Not sure how long that will last since I'm really tired.  By 10:00 I will be upstairs in bed.

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