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Me, MS, or why I can’t just get over it

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Multiple sclerosis depression… it’s a real thing and it happens. Not even the happiest, peppiest, most positive person in the world is exempt from it’s effects. It can sneak up on anyone. It’s not known exactly why multiple sclerosis has a higher rate of depression than other chronic illnesses, but it’s believed to be caused by changes in the brain’s functionality along with the emotional stresses of unexpected progression, loss of mobility, pain, social isolation, and financial struggles.

Those of us living with MS are fighting our bodies every second of every day. At times, we feel as if we have slipped into a raging river and the current is pulling us under as we fight the rapids in order to pull our head up far enough to get a breath of air only to sink yet again. We find ourselves lying in our bed with tears flowing, completely worn out, weary, and with  awful thoughts spinning out of control.

All those “what if” thoughts, doubts, fears, and questions flood our minds. They have a way of overtaking even the smallest amount of hope we have left and leaving us with only a tiny strand of hope to pull us up to safety.

That has happened to me more than once. During those times, I find myself feeling alone and worthless in a world that doesn’t seem to understand me, MS, or why I can’t just get over it. It always catches me off guard almost as if I got sucked into a vortex filled with every mixed up emotion imaginable and it pulls me deeper into the abyss of depression. It’s not easy pulling yourself out of such turmoil and confusion. This kind of thing it invisible to the rest of the world, so they just don’t get it.

What I have learned most during those awful, vulnerable times in my life is that I need someone there with me to help me process those crazy random thoughts that I find bouncing around in my brain…not with advice, opinions, or judgements, but with a hand to hold, an ear to listen and a box of tissues near by. Oh, and maybe some ice cream or chocolate.That somehow always helps.

Don’t beat yourself up just because you are having a bad day, week, month or even year. Depression is real and sometimes it’s really, REALLY hard to overcome. It takes guts to talk with your doctor, friend, counselor, spouse, or family member about what’s going on inside your head and heart.

Don’t allow guilt to creep in and cause you to think that you can’t open up about what’s going on. Sometimes we need help to weed through everything that’s going on in our life in order to find hope once again. And just so you know, seeking help is not a sign of weakness. It takes great courage to admit you have a need.

Don’t ever be afraid to ask for help. Sometimes that’s the hardest step you will ever take…but you can do it. I know you can!

Words from my heart

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Some people live their lives in the Land of Clichés and Memes. What are they you ask? Well, a cliché is a phrase or opinion that is overused and betrays a lack of original thought and a meme (rhymes with team) is a humorous or thought provoking image, video, piece of text, etc. that is copied (often with slight variations) and spread rapidly by Internet users.

One thing to note…technically all clichés are memes but not all memes are clichés.

I have noticed a trend in people using phrases when talking about multiple sclerosis. Words that once were amazing, but have become so common that they no longer provide the strength they originally carried. Things like:

It could be worse.
Time heals all wounds.
Everything happens for a reason.

Personally, when I’m feeling bad and having a terrible time with MS, I’m not comforted with statements like: I have MS but MS doesn’t have me. That is one phrase that has become so overused that I don’t even listen to the person sharing it. It’s not comforting to me. It was cute the first time I heard it, but now that it has been so overused and worn out, it gives no benefit to my life.

The reality is…sometimes, MS does have me. Sometimes, I have really crappy days. Don’t get me wrong, I totally believe in staying on the positive side of things and looking for the good in any tragic situation, but there are times when I need space to think and grieve, and to decide for myself how I want to move forward. I don’t need words carelessly tossed out as a solution by someone who’s not even listening to the words they are throwing out.

Seriously, if you’ve ever shared a cliché or meme in response to someone dealing with a relapse or sitting in the hospital awaiting test results because you want to bring comfort to them, I urge you to never do it again. Why? Because in a moment of tears, they need time to process the chaos and would get more benefit out of a hug than a worn out set of stale words.

Why not just use your own words? The best thing anyone could say when times are at their worst are words from the heart. And for many, saying nothing at all, simply being there is all a person needs. Standing with them in the pain and holding them up when they have no more strength left to stand on their own… that does more than worn out words.

Instead of quoting from something you’ve heard over and over again, thoughtfully put together your own words filled with care, understanding, sincerity, and lots and lots of love. That’s what brings comfort. That’s what helps bring smiles to a face covered in tears. Well, that and maybe a joke or two to break the moment with a laugh…and some chocolate. Chocolate always helps.

You’ve made it this far in life with multiple sclerosis

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You’ve made it this far in life living with multiple sclerosis, so what makes you think you will fall short of your goals now? Whether they are goals of being able to care for yourself, goals of using your muscles to get around without burdening others, or goals of hanging on to sanity in a crazy mixed up world.

You have had your fair share of those who delight in foreseeing problems in your life because of MS. Those who actually enjoy criticizing any failures you’ve dealt with regardless of the cause, and freely voicing their opinions while dwelling in the comfortable safety of theory, unbelief and inactivity.

Words, words, and more worthless words have been used against you along your journey. When will you finally decide to believe in the beauty of who you are? When will you choose to laugh at all those silly careless words that have been spoken against you and toss those words away… rising above the shadows that loom in the distance?

If it is safety you want, then you will do far better by removing any distractions or obstacles in your way so you can follow your heart. Has experience not taught you this. Besides, warriors like us have always seen safety in a different light than those who try to make a living out of exploiting the disabled. Yes, those people do exist.

Laugh at the threats that come your way. Laugh and get on with enjoying your life. I do. Follow your heart and follow your dreams… you have great ones to follow.