I have Myasthenia Gravis. I also deal with anxiety & depression.
First thought when I become conscious in the morning is usually “Damn I dread getting up to take my meds”. Because that means I have to eat breakfast. I dread moving basically.
Takes me about 30 mins to an hour to get myself up and moving. If I’m having a good day maybe less than that.
My morning routine:
- Talk myself into getting out of bed
- Bathroom & Instagram time
- Struggle down the stairs to make something to eat because I can’t take meds on E
- I have no appetite but gotta take my life-saving pills…I throw something together
- I’m usually tired from standing and cooking
- Smoke (Ew, not cigarettes people LOL)
- Force myself to eat
- Force myself to take meds
- Throw up from pills (9 times out of 10 my stomach rejects them)
- Get back in bed & work on the blog or my jewelry business
Best time of day for all my symptoms is morning. In the late evening/night I feel pretty worn out. Even if all I did was watch Netflix all day. I’m in the best shape in the morning/afternoon. I try to schedule appointments, meetings, etc… earlier in the day. I feel the most “normal” in the mornings.
A daily self-care that is a MUST for me is anything hygiene related. I make sure that I wash my face, brush teeth, shower, and do something to my hair. If you are anything like me; after you’re done “getting ready” for the day, I need a nap. LOL, I make sure to do these things because they ensure that I feel the best. Look good and you’ll feel good.
The household chore I have the most trouble with is washing dishes. The heat from the water makes me hot plus standing makes it hard. I pull up a stool and have the fan blowing on me when I’m doing this chore.
A task I wish I had more help with is doing my hair. Even though I have locs in my hair and don’t have to worry about weave or curling it; holding my arms up for long times is torture. Driving is also another one of those tasks. It’s hard on my lower body and my eyes.
The part of the day I like best is when my mom gets off around 5 or 6 pm. My mom is kind of amazing and is my best friend. She understands my limitations, my attitude… she understands and knows me. I get lonely throughout the day being at home and seeing her at the end of a work day is the best.
Breakfast is usually the hardest meal for me to prepare and consume. If I have an appetite, lunch is great (or I’ll skip). Dinner is my favorite meal of the day. I don’t have any dietary restrictions.
I unwind in the evening by smoking a strain of my favorite Cannabis and writing articles for my blog. I love structure so I also enjoy pulling out my calendar and scheduling my activities for the next day. I try to keep my mind and hands busy.
I am able to exercise, but only easy and low-intensity exercises. I enjoy doing yoga every night before bed. It helps manage the achy muscles and weakness I have related to the MG.
Things that help me de-stress in my everyday life are: reading, vaping, eating (sometimes), engaging with followers on social media, making jewelry.
Shop My Jewelry Here: https://www.etsy.com/shop/HoneyBeeCreationsGA
I work from home. My main form of work is my blog/brand (Ashley’s Anatomy), public speaking engagements, and my jewelry business. It gets lonely sometimes, but I keep sane with the isolation by scheduling at least one/two social outings or visit with friends. Especially if I catch myself resenting or feeling jealous towards friends that are out having fun.
I have two cats! Sylva-Fox and Luna. Sylva is mine and Luna is my baby sisters. They are the biggest comfort/emotional support animal you could ever ask for. When I was on recovery from my Thymectomy and unable to leave my bed; they would keep me company all day.
The people I see the most are of course my family members. My sister and I are best friends we hang out all of the time. We’re usually watching Black Mirror on Netflix and cooking tasty meals.
When I get ‘normal people sick’, I almost always end up being admitted to the hospital. I’m unable to get this treatment that most with autoimmune diseases get called IvIg. Instead, I have to get a plasma exchange. I made a whole video about my experience here:
Plasma exchange requires 10 days total so I try not to get sick.
If I could leap out of bed pain-free for ONE day within my current environment and circumstances, I would go to the beach. I’d take advantage of the lack of heat sensitivity, loss of appetite and all of the other horrible symptoms I have every day.
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