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sleepy

Sleep? What’s that?

I can’t tell you what a good night of sleep feels like because I don’t remember the last time I had one. Most nights I either toss and turn due to insomnia, continually wake up because the pain is relentless, or I actually sleep for hours yet still have the ability to wake up without getting any sleep. The kind of tired I feel on a daily basis just can’t be explained in a simple word: exhausted, ready to drop, fatigued, sleepy, run-down, pooped, worn out…nope, they just don’t explain my kind of tired.

The description I have of Multiple Sclerosis fatigue is the way someone feels after they’ve not slept in two days straight and then hiked 50 miles up the side of a mountain while carrying a backpack loaded with rocks on the hottest day of the year. But who in their right mind is going to attempt that kind of journey to truly understand what my tired feels like? It just doesn’t seem possible to feel tired like that every day. But then again, my body does a lot of things that don’t make sense.

For those that may have forgotten, my body is in rebellion and has turned on itself. That’s what Multiple Sclerosis is. My immune system has become overly charged with super power strength and sees my Central Nervous System as the enemy. It’s an amazing fighter, my immune system, it’s just fighting the wrong thing. It’s attacking what my body needs most to function properly.

And if you should think the Central Nervous System isn’t all that important, I would challenge you to find one thing in life that you can do without it. Our nerves are a part of everything we do from seeing, to walking, to eating, to sleeping, and even to yawning, blinking and sitting still. Have you ever had a pinched nerve in your back, leg or shoulder? Yeah, that didn’t feel so good, did it? Now imagine nerve problems like that which can’t be fixed with an adjustment or a pill because the nerves aren’t simply pinched…they are chewed up, and many times unrepairable. I would love to be able to simply un-pinch my nerves in order to feel better.

I’m yawning as I write this and can feel I need a nap already and I haven’t even gotten out of bed yet. I look forward to the day I wake up and Multiple Sclerosis is no more. That’s my dream…and I’m sticking to it.

snowman

Baby it’s cold outside

Cold weather is not my friend. My muscles and joints choose to stop working the colder it gets thus making walking and moving any muscle especially difficult. If you were to ever see a snowman walking (or is it snowperson? I never get those things right), I think I would be what that looks like. I can totally understand why bears choose to sleep through the cold. I need to take a long vacation to the Caribbean right about now…or hibernate for the winter. I’m open to options.

Between my hands having trouble holding onto things and my legs freezing up, I’m a bit of a sight during the cold weather months. I’m definitely not looking forward to having snow. Have you ever tried maneuvering a wheelchair through a foot of snow? Talk about stressful.

Because so many people with MS choose to remain indoors during the coming months, it’s a time when depression has a tendency to creep in. Parties are in the making, gatherings are happening and get togethers are more frequent among friends.

I don’t think people understand the things we have to consider when receiving an invitation to go someplace this time of year. Is the location accessible? Will the wheels on my walker or chair leave wintery slush tracks on someones nice carpet? Will my body play nice? Will I be able to manage the crowds and traffic? Will my finances be stretched too thin? Will fatigue hit hard keeping me from being a part of the fun? Will people understand my decision to stay home? Will they even invite me in the first place?

Although this time of year can be difficult, don’t let depression walk in the front door…or the back door for that matter. I know that’s easier said than done, but try to keep the gloomies out. Find something you enjoy doing and stock up on all the supplies needed to keep you going for awhile whether that’s knitting, drawing, writing or movie watching. Get creative and make your own fun. The warmer weather will be back before you know it.

Living in a snow globe

Do you ever feel like you’re living in a snow globe?

I live in a snow globe kind of world. The wind doesn’t blow and the rain doesn’t fall. Instead, the earth shakes and everything flips upside-down, right-side up, then upside-down again. The torrential swirls that are created sends shockwaves throughout my world and threatens to topple Continue reading “Do you ever feel like you’re living in a snow globe?” »