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What I Want People to Know About My New Limitations Due to Hemiplegic Migraines

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Before hemiplegic migraines I was able to do so many things. I suppose this story is for me a graveyard of memories.

It’s been a year since I was diagnosed and my mind just won’t let these thoughts go. I’m putting them into a format that many can understand with or without invisible illnesses or disability. Maybe this will strike a cord with those that are caregivers to someone they love. (Hold onto that thought. We’ll come back to that last sentence.)

I could clean my entire house without thought. I was never a perfect maid. However, at times, I’d get a great burst of spring cleaning no matter the season. Like when someone calls saying, “Hey, I’ll be over tomorrow” – or in an hour…Egads! My house! Scrub the floor, wash dishes, throw in some laundry, tidy everything, and vacuuming? Heck, for years, I was the queen of vacuuming with multiple dogs. Toss together a wicked good casserole that would make the house smell delicious and cozy. I could handle a huge heavy laden – with food in the crockpot in the morning. Set it and forget it.

I could mow the lawn, fuss in my little garden, water and hay my horse, muck out her stall, poo pick around the yard, throw toys and sticks with my dogs for a long time. Handling farm tools, buckets, and a wheelbarrow with ease. All in a few hours. Now, I drop or fumble with things like paper and a pen.

I could groom my horse, pick out her feet, reach up around her neck and hug her, sniffing deeply into her mane for periods of blissful peace. Now she’s gone and sold to a wonderful home. I don’t get to see her often because I’ve opted to stop driving.

Safety of myself and others is paramount to me. I loved to drive and travel around visiting friends, making errand stops to little shops or curiosities here or there. I still have my drivers license. However, hemiplegic migraines are so disabling. At any time half your body stops working. Your arm and leg feel like dead weight. When I stopped feeling the gas pedal and missed the brake pedal one day, I said, “That’s it. You’re going to end up killing or hurting someone. Your vision is blurry with aura. The entire world spins.”

I miss the freedom to just walk out the door and drive anywhere at anytime.

Everything has to be planned ahead of time. I used to be so spontaneous.

I used to find out about music, shows, and run out the door to dance, commune, and laugh with friends over cocktails. Now the light shows that I loved hurt my eyes and head. I used to love going to movies, now they can trigger a migraine attack at times. I still love movies and music, but I worry about being in public now and suddenly being unable to move, falling down, having the embarrassing happen.

And a career? I was a secretary for years, handling busy offices, communication, and my semi-photographic memory was a gift. My short-term memory is horrible now. I took care of children of all ages in a daycare and at a home daycare. That was a busy time and I look back in fondness at that experience. I dabbled in dog training and always cared for people’s pets intermittently.

My dogs no longer get long episodes of playtime or walks outside. It has to be a really good day for me to want to get a driver to load one up, as when I am feeling bad, I can’t take all of them like I used to. I have to have the stamina to get in and out of a car, and the strength and dexterity to hold onto the leash without them pulling me down. The guilt over this is immense.

I’m grateful my insurance covers an aide a couple times a week. The daily pain and weakness is indescribable. Sometimes I feel bad that someone else has to clean my mess. Touch my laundry, wash my family’s dishes so the world keeps functioning. Sweep and vacuum my house because I can’t maintain any longer. I don’t want a pity party, I just want an understanding of my limitations now.

That thought I told you to hang onto – here it is: Even if that person I was seems to be gone…guess what? Under the layers of illness I’m still here. I terribly miss my old life. I have been mourning who I was and my old capabilities. I’m grateful to the friends that have stuck around and come to see me, or include me in their plans. It is true – when tough times happen, you do find out who your friends are.

I’m still Amanda, the lover of dogs and horses, and music and fun. I just need more help now.

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Thinkstock Image By: brickrena

Originally published: May 30, 2017
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