Living with a chronic illness can be extremely lonely

I think one of the hardest things about living with a chronic illness is the pressure from certain people to just get better. It’s almost as if they think I have this secret power tucked away in my sock drawer that will rid my body of all the symptoms, difficulties and struggles MS is causing in life, but for some unknown reason I choose not to use it.

When I am unable to join in on the outings, parties, dinners and shopping trips people are taking part in, the vibe I get at times from them is one of doubt that things could actually be “that bad.” I can almost see the thought bubble above their heads as they wonder how it is I can go from feeling okay one minute to feeling like crap the next.

The best thing anyone could ever do for someone living with a chronic illness is to allow them to decide how they’re actually feeling and what they are capable of doing. I like it when people leave it up to me to decide what I can and can’t do, and are okay with my decision. After all, it’s my body…it’s my life. I should now how I’m feeling.

Those that love me enough to give me the option to choose and are okay if my decision is different than what they want or planned for…those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel.

Living with a chronic illness can be extremely lonely and amazingly enough it’s possible to feel that way sitting in a room all by yourself as well as in a room full of people. Sometimes you just want someone to sit by your side and simply be there, to give you a hug, to listen, to care.

When you find yourself sitting in a puddle of your thoughts wondering where everyone has gone, know that there are others with MS who understand. We may be separated by miles and miles of distance and separated by oceans and seas, but we are connected through wires and keystrokes. We are in this together. Sending a virtual hug your way today.

Broken but still standing

I know how difficult things can get. It’s not easy making it through the day when my body is screaming at me. I didn’t ask to be the strong one. At times when people tell me to stay strong, I actually feel so weak that I have no idea how those words are suppose to be comforting. To me, they feel more like a punch in the gut than the gentle hug they were meant to be.

Stay strong? I don’t like to admit that there are times when being strong is simply not possible. Oh, I try. Boy, do I try. But when I wake up in pain, exhausted, weary, and unable to feel parts of my body because the numbness keeps creeping up my legs, arms and even my face…the struggle crumbles me. Stay strong? I feel more like a crumpled piece of paper than a rod of steel.

How am I supposed to stay strong when I am broken? People who say they never break are either lying to you or to themselves. I have been broken many times and feel more like a pieced together puzzle that’s been glued together over and over again than a strong oak simply bending in the wind.

It’s a great thing to think about, being a tree swaying in the wind, but anyone who has ever lived through a tsunami, hurricane or tornado knows that even the strongest of oak trees break. It may still be standing when the storm subsides, but scars are left behind as a reminder of what once was as branches and sometimes even the trunk breaks.

The truth is, Multiple Sclerosis changes you. It leaves scars both in your brain and spine, but also in your heart. You change. The storm you are enduring…people can’t see it. Some try to understand, but without living in your body and experiencing your journey by walking in your shoes, they just can’t understand the mental and emotional pains you face each day along with a slew of symptoms. They don’t know how often you cover your tears with a smile and piece together your heart with bubble gum and shoestrings.

Are you stronger because of MS? Absolutely you are. You are stronger even in the breaking. You have endured much and just like how a tree grows new limbs once a storm has torn it apart, you are growing and changing every day. You may be at a place where you feel like the storm is overtaking you, but the winds will calm and the sun will come out.

Hold on with everything you’ve got, then when you find your strength again…stand proud of what you’ve come through and all you’ve overcome. You may look tattered and worn, but you are still standing. That, my friend, is how warriors are made.

Not many people can make it through a storm, break, then keep standing…but you are doing it. So the next time someone tells you to stay strong, smile in your brokenness realizing that your scars speak of your strength and tell a story that only a warrior can tell.

I never thought I would be living with a chronic illness

I never once thought I would be in my 40’s living with a chronic illness, surviving on Social Security because my disease progression forced me out of a career I loved, staying home much of the time because of mobility and accessibility difficulties, requiring regular visits from a home healthcare nurse to help me manage everyday life, and losing friends left and right.

My plans were so much bigger than that.

I dreamed of greatness. I was going places. I was doing things. I had arrived.

It’s important for everyone to understand that our journey in life can change at any given moment…for the good or for the bad. It will be filled with victories and defeats. It will twist and wind through the mountains as well as plummet into sink holes and ravines.

Yes, the journey is important. It’s great to have goals and plans, to be able to reach for something bigger than yourself, to dream. But what I have found to be even more important than winning and losing, bigger than the highs and lows in life, is learning how to handle those victories and disappointments. That’s what matters. It’s not the actual winning or losing that counts, it’s how you win or lose.

I grew up in a huge football town. We took winning seriously and losing hard. When our team won we would have victory parties in the town square with everyone excited and partying through the night. When we lost, although the atmosphere would be more solemn and there would be a lack of cheers through the crowd, we still gathered and celebrated in our loss.

I learned how to win big and lose gracefully.

So when life threw me a curve ball and brought an end to everything that I thought was wonderful, instead of screaming “Why me?” or becoming bitter and angry at the dramatic change, I shifted with the change to find something to celebrate…even in my loss.

Sure, I lost my mobility, strength, career and many friends, but I gained something through it all. I found hope in the darkness. I developed strength out of weakness. I learned how to smile in the pain.

How did I do that?

I decided that regardless of the disease that is ravaging my body and changing my life, that I would find something each day to be grateful for. It may be something little and at times minuscule, but it’s still something.

Today I’m grateful that I woke up to clear skies, birds singing outside my window and a fresh cup of coffee to be able to sip on as I write to you. I wish it was something more than that like I won the lottery or multiple sclerosis was cured while I slept, but I’ll take what I can get.

There is always something to celebrate in a day. Find yours and choose to rejoice in the small victories rather than wallow in the defeats…even if you find yourself lying in a hospital bed, sitting alone on the couch or trudging through rush-hour traffic.

Hold your head high and know that regardless of the speed bumps, the pitfalls and the unexpected turns, you can still find joy in the journey if you look hard enough.