I've been working from home full time for almost 2 months. And pretty isolated.
Thank you Vestibular Migraine. I would rather a "Regular" migraine that goes away after 1 to 7 days. This has been non stop since December.
I will be meeting one of two of my assigned neurologists next week - thank goodness! Living like this is frustrating, depressing, and I'm just spinning all the time.
But because I'm me, I keep going. I keep working. I keep doing what I can do around the house. I walk the dogs (one at a time). I cry (a lot). I feel alone. I sew to find my happy and sparkle again.
I really want my sparkle back.
I want my life back.
I thought dealing with Chronic Fatigue Syndrome for 14 years was bad. I never wished that on anyone else. Now I'd wish CFS on someone over Vestibular Migraines any day.
And anyone who says, "It's just a headache," I want them to FEEL what I feel just for a week. Good luck dealing with that. Then they'd NEVER say it's just a headache ever again.
Just because I may not visibly look like I'm suffering, I'm great at putting on a smile, give a laugh, and try to mask my pain and isolation.
It's unbearable most of the time. I'm fortunate to have drive and will to keep going.
What do my daily symptoms entail?
- Dizziness
- Full blown vertigo when exposed directly to LED and Fluorescent lights
- Swaying (like I actually sway due to the dizziness)
- Derealization (I feel like I'm here...but not really)
- I see flashes in my vision
- Eyes can't always focus
- Muscle weakness - especially my legs
- Rotating numbness of my arms, legs, and face (I thought when my face started going numb that I was having a stroke - my General Doctor thought I had Multiple Sclerosis)
- Sometimes my legs go numb from my feet to knees and I need a cane to walk (waddle)
- Slurring of words
- Brain fog (forgetting words, where I am, where I am going - like driving somewhere and having no idea where I'm driving to!)
- Lack of focus
- Photophobia (light is not my friend - hence working from home - our office put me into 2 months of full blown vertigo, tears, and nausea every single day)
- Misophonia (I had this before - but sounds can make me angry)
- Lack of Balance (I can't Downward Dog or do Warrior 3 at the moment)
- Neck is so sore - no matter how many times a day I do my stretches
- Other symptoms that I've written down (As my memory is shot)
And that's daily.
Every 3-4 days I get the lovely head pounding that people associate with Migraines. These last 2 to 7 days along with the above symptoms. Sometimes it's all pressure in the front of my face, but the last week, I've had two migraine episodes that felt like a clamp on my head - like a REALLY tight headband that I can't take off.
It's exhausting. Some days I want to give in and just lay in bed and not get up.
But I can't let my brain win.
I think.
So behind the camera, I'm just a girl waiting for help, alone in my own mind.
At least today's outfit makes up for it?
Today I'm sporting my Elora Dress and Cocoon Cardigan.
Halla's Elora Convertible Dress
I modified this strapless dress to have straps, as I fear strapless dresses will fall down, and I prefer straps.
The bodice is made from some knit fabric I won with my first sew along - it's Sew Cute!
The skirt is one of many sarongs I've collected on my journeys to Mexico. It made the perfect Elora Skirt!
I have two Eloras, and I love wearing them in the warm weather. It also covers my knees, which is a must!
And look at the bust ruching - isn't it pretty?
Patterns for Pirates Cocoon Cardigan
I've made 3 of these.
Two for myself, and one for Mom.
This one has MINIMAL stretch, so the arms were tight for a bit, but my second one has stretchier fabric, thus a looser fit that doesn't cut off my circulation. But it's lightweight, so perfect for warmer weather.
I'm always cold, so always need some sort of cardigan or hoodie.
It has pockets, and covers my hips and behind, so I find it flattering - and I can get away with wearing it in the office (when I go in - I'm a bit scared of my work from home accommodation ending, and having my head go back into photophobia hell).
Both of these were easy sews and great staples for anyone's wardrobes.
I'm also sporting the comfy Wardrobe By Me Love Yourself Hipsters....soooo comfy and I forget I'm wearing underwear.
I'm wearing underwear!
I'll show you my good undies pics with my head chopped off!
Sew On!
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