There are people who don’t share their chronic pain or illness because they do not want it to control their life. They do not want that to be a part of their personality or the only thing they are known for. I totally understand that perspective, however, it is a huge part of my life. There is a lot I can no longer do, at least without any preparation. I loved being spontaneous when I was younger, but if I do not properly prepare for certain things, my body could really let me down and I would be paying for it for some time.
When I saw that A Chronic Voice posted this “A Day in the Life” linkup, I thought it was a great way of introducing others to my pain, and help people I already know understand me a little better. Not only did I want to share on this post, but I also wanted to add more of a personal touch to it and share it on my Youtube channel.
Q&A: A Day in the Life with Chronic Illness, Pain and/or Disability
In brief, illnesses and/or disabilities I have:
I suffer from chronic migraines, Interstitial Cystitis, Polycystic Ovary Syndrom, and Fibromyalgia.
Chronic Migraines are the most debilitating for me.
Where do you come from? How accessible is your city/town?
I live in Columbus, Ohio in the States. In terms of public transportation, it needs help. I cannot speak for other accessibility options.
My first thought and/or sensation when I become conscious in the morning:
I usually wake up with extreme head pain and achiness. Ice packs and stretching helps, as well as blackout curtains.
How long it takes for me to go from zero to functioning, if at all:
Oh man, I am completely unable to do much for a couple of hours.
What my morning routine is like in general:
Stretching, Meditation, hygiene tasks, breakfast
Best, and worst times of the day in terms of pain, fatigue, etc:
My pain is slight in the morning, my fatigue is a whole day pain, and in the late afternoon and evening, my pain starts to rise.
What I consider a daily self-care must do:
Stretching and meditation
The household chore I have the most trouble with:
Cleaning the litterbox
A task I wish I had more help with:
I actually feel entirely supported.
The part of the day I like best:
I like the late afternoon and early evening when I have completed most of my responsibilities in the day and I can relax with my cat and read a book.
What’s breakfast, lunch and dinner typically like. Any diet protocols?
I try to follow the DASH diet – and I try to not consume anything processed or with a lot of sugar and sodium.
How do I unwind for the evening?
I will curl up with a good book, take a hot bath, make some tea, watch tv, or play games. I journal in the evening to try to get everything that is going on in my brain – the to-do lists, plans, etc., I meditate in the evening as well.
Are you are able to do any exercise? If so, what do you enjoy and does it help with managing your pain?
I cannot do anything that requires me to jump or run – so cardio can be hard for me – I usually do a video, or dance, or cycle – but yoga and pilates are my favorite workout that does not usually put me in high pain.
Things that help me de-stress in my every day life:
Meditation, yoga, and stretching, and hot baths.
If working, how do I keep sane with the work stress? If staying at home, how do I keep sane with the isolation?
I still haven’t figured this one out yet.
Do you have any pets and how are they are a part of your life?
I have two cats and they help me so much with my pain and stress.
People I see most often and my favourite activities to do with them:
I mostly see my family and anything with them is a good time and puts me in high spirits. We like to play games, make lovely dinners, watch movies together…
If you got ‘normal people sick’, how much impact does that have on top of things?
Oh, it is worse than anything I thought I have had before. The pain is so high and when I am sick with a cold or the flu, it takes everything that I have to just move positions.
If I could leap out of bed pain free for ONE day within my current environment and circumstances, I would…
Go on a long, intense hike. I love hiking so much and would love to be able to do more extreme hikes. I would also want to go to a waterpark and use the slides. I always loved them as a kid, and it is pretty hard to go on one now.
Is there anything else you’d like to share about daily living with chronic illness/disability?
Even when you have the most awesome support system around you, having chronic illness/disability can be so isolating. Everyone thinks they know what is best for you or they have suggestions for things that might help you – “have you tried yoga?” “Have you tried this or that?” it can drive someone with chronic pain absolutely crazy, BUT take a step back and try to realize that they are just trying to help. On the other side of this, those people should understand that anyone that has chronic pain has most likely tried all of the things you have suggested and things will not magically get better if someone drinks some bone broth and people who suffer need someone to just understand that others do not understand, and merely listening or even distracting from the pain, is so much more useful than suggesting remedies that were most likely already tried.
If you want to hear me talking about my chronic pain/illness in a little more detail, please watch and subscribe to my Youtube channel 🙂