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slippers

It’s my party and I’ll have fun if I want to

Have you ever had this happen…a friend calls you up to invite you over for a get together. You would love to go but the challenge of a long drive, late hours, and lack of accessibility makes the decision for you. You politely decline but inside feel miserable because you realize how limiting your life has become.

There are times when having a disability is a great thing because you have an excuse to decline an invitation to a party you have no interest in going to or a reason to not help a friend move the furniture in their house. But it’s sad when you can’t join in on something you really want to be a part of.

Life changes with MS…which sucks. You find yourself making decisions based on how difficult it is to climb the stairs rather than on whether you have to pick up a gift and a platter of food on the way. The depression that weights on you can be hard to deal with and even overwhelming at times. It’s not an easy thing to come to terms with.

At this time of year it can become extra hard because you see people going out enjoying the holidays, spending time together shopping…doing all the able-bodied things people do that you are no longer capable of doing. It seems the winter months have this way of ushering in a sadness along with the cold and the snow. I’ve felt it myself at times. It can become overwhelming if you allow your thoughts to rule the day and slip into the “why me” places.

I know it’s hard, but try and find something good in the chaos. When you have to stay home, choose to have your own party in your PJs. Even if it’s a party all by yourself, have it anyway. Don’t let the fact that you can’t go somewhere get you down.

I have a party box filled with puzzles, colored pencils, coloring books, games, legos…all those creative things I played with as a kid. I pull it out and have fun. Strangely, it’s quite therapeutic and helps me to pass the time without turning the evening into a pity party. I like my PJ parties so much better. 

So the next time you have to decline a friends invite, put on some festive PJs, make some hot cocoa and pull out your party box.

I gotta go now. I have some new Play-Doh waiting to be turned into something amazing. I think I’ll mold an alien with googly eyes and spiky hair.

pie

Take a break and have some pie

I woke up this morning to my teeth chattering. It’s grown cold and I’m not a fan. The cold tends to stiffen my muscles and causes me to have to work extra hard just to move. The heat isn’t my friend either. Oh, to live in a place where the weather is perfect—not too hot and not too cold—would be amazing. I don’t think that place exists, but it’s great to dream anyway.

There’s nothing worse than feeling out of control. The temperature tends to do that to me. It comes along and throws a wrench into my plans and messes things up. Everything I do tends to take more effort and a whole lot more energy. I get exhausted just imagining my day and all the things needing to get done…and I haven’t even gotten out of bed yet.

Many times, if you’re anything like me, you push yourself hard anyway…sometimes too hard. All that energy you use making your muscles function and your body move leaves you worn out. You want desperately to be able to do the things needed for the day, but your body just won’t let you. You find yourself weaker in your efforts to make yourself strong. Then discouragement comes knocking at your door along with some of its friends…weariness, frustration, defeat and disappointment.

At those times, it’s important to take a break. My kind of break may be different from yours, but anything that puts life back into perspective helps. It may be taking time to pamper yourself by getting your nails done or going to a local miniature golfing spot to ride the bumper cars. It could be finding a secluded spot away from the world to shed a few tears and pray in private or even something as simple as having a slice of chocolate pie…anything that helps to calm your heart and put peace back into your day.

Taking a break doesn’t mean you quit on life or on your plans, it doesn’t mean life will change and all of a sudden you will have this amazing boost of energy and your nerves will work properly again, it just means you put things on hold for a bit in order to take care of yourself.

You deserve that. You deserve some “me” time. Don’t let MS cause you to give up and stop believing in who you are. You matter more than you realize.

Multiple Sclerosis and me are not a good fit

Some things just don’t go together, like peanut butter and mustard or swimming and lightning. Or how about music and ear plugs or driving and texting. Something else that doesn’t go together is Multiple Sclerosis and me. We are just not a good fit, the two of us. It’s a constant battle of what I want to do and what MS will allow me to do.

I still find myself over doing things and pushing myself beyond what I should be doing. And every time I feel the effects of it later. You would think by now I would know not to push so hard, but I seem to do it any way. Sometimes it’s because I just want to fit in with everyone else. Other times it’s because I still think I’m invincible. And then sometimes it’s because things just need to get done and I’m the only one to do them.

It’s important to know your limits and take time for yourself. To treat your body with care. Our bodies need more care than most and we have to be sure to not over do it. We all get busy. We all push too hard. We all forget at times just how much our body has changed because of MS. But we all need a break…a vacation from MS. Is that even possible? Taking a vacation from a disease that just won’t go away?

Maybe I can’t rid my day of MS, but I can  purposely give myself a break and do something just for me. I’m going to pamper myself and not lift a finger. No cleaning up messes. No work whatsoever. Just me time and coffee. Even if it only lasts for 30 minutes, I’m going to do it. Even if that means locking myself in the bathroom or hiding out in the closet…I’m choosing to step away from the chaos and rest. I’m choosing myself over MS today.

Every day seems like moving day

Packing up your house and moving hundreds of miles away can be a daunting task for a healthy body. Add Multiple Sclerosis into the mix and it can become terrifying. That’s not an over exaggeration either.  Anyone who has moved can testify to that. The energy it takes to box up you entire life, load it into a moving truck and then unload it a few days later, wears a body out. It is my job now to make sense of the mess and boxes as I work to put my life back into order.

It’s kind of the same thing when diagnosed with MS. It’s as if one day life was going great and plans were set…then bam, it’s time to pack up and move from your normal, ordinary way of doing things into a new way of living filled with uncertainties almost on a daily basis. Sometimes those shifts are easy to make. Sometimes they are the hardest decisions you could ever imagine possible.

I still remember the day I started using a cane to help me walk. I was so stubborn at first. I knew I needed something to help me because I was stumbling and wobbling about, but I just couldn’t break down and get a cane. My doctor was the one who made it clear I needed to get one. She told me that a broken bone was not near as easy to fix as broken pride. Boy was she right.

I have had that same struggle with each major life changing moment along with way due to MS progressing and causing me challenges. Going to a walker was another huge move that I found hard, then a wheelchair. The wheelchair was a really tough decision.

I have also had tough changes to make around my house to make sure I’m living as safely and as comfortably as possible. Things like shifting to using lighter silverware to eat from since my old set of forks and spoons were heavy. Or placing my dishes on lower shelves for me to easily reach on my own. Or having grab bars installed in the shower. Or adding a ramp to the entrance to my house.

There are so many changes we make as this disease progresses. One thing I have learned over the years, MS will shed you of your pride one way or another. It gets chiseled away little by little. You would think by now I would be pride-free, but I still have a hard time asking people for help. Not in everything. But sometimes I still find myself just wanting to do things on my own…even if I have to struggle in the process. And I don’t think that’s a bad thing.

It’s okay to have a stubbornness in you that refuses to give up. It’s okay to ask a friend to allow you to do something even if you struggle in the process. It’s okay to try, try, and try again all on your own. But it’s also important to know when to ask for help. There’s nothing wrong in asking someone to help you do something. The asking part gets easier, trust me. And besides, from my experience, people really do want to help. Many times they just don’t know what they can do so they pull back and do nothing. When you open up and become honest with others about your true, genuine needs, most are ready to jump in and be a support. We just have to ask.

And to the ones that aren’t a help…you learn who they are fairly quick and that’s when you start to lighten your load. I’ve throw a few boxes off the truck in my lifetime. Make sure the people around you are a support and not a hindrance. It’s okay to lighten the load. I’ve had to shed a few people from my life because they caused me more trouble than helped.

Moving is tough…but it’s also rewarding. You learn who your true friends are in the process. Not may people are going to carry a heavy couch up three flights of stairs for you. Hold onto those people and be sure to let them know how much you appreciate them. Sometimes we forget to tell them.

you are brave

Find your brave

Dear Weary One,

I know your heart is heavy. Right now you are on the verge of tears…tears that have been collecting deep in the spaces of your heart and flooding over into your mind. You have met reality face to face and you don’t like it one bit. Multiple Sclerosis is your reality. It’s real and you feel it deep. You are finding yourself overwhelmed and Continue reading “Find your brave” »