I hear you strong and courageous one…

I hear you chug chug CHUGGIN along at the very back of the bunch. I can feel your effort, your exhaustion and your pain. I can feel your teeth gritting together as you take one small yet ever so important step after the next. I can feel your hands sweating as they grip ever so tightly onto whatever it is you are relying to keep you up right.

My hands shake along with yours as you try to propel yourself forward just one last inch. I can feel your anger, your frustration, your disappointment, your fear, and most importantly your determination.

I know it’s harder for you than the rest. I know you look ahead and wonder why that can’t be you? Or maybe even more accurately, why that’s NOT you anymore?

I know it has been a long time since you have felt the effortlessness of lifting your legs, something similar to the feeling of floating in a salt water pool.

I totally understand how defeated you feel when the rug beneath your feet feels like fur, and I know how scary it is NOT to know what the next thing is you will trip over.

I can resonate with you ever so deeply when you say that you just don’t know what ‘normal’ feels like anymore, and that you simply can’t even IMAGINE what life must be like without pain.

I place no judgement whatsoever on the days you breakdown in tears, have the ugliest of ugliest cries, or scream at the top of your lungs and surprise yourself at how off pitch you can be.

I don’t wonder for a single second why you are more sensitive on some days over others, or why you feel a LEGIT celebration is in order for solely cooking your own meal.

I understand to the nth degree why you feel like throwing yourself your own damn fiesta JUST for cleaning your own room, and why HECK YES, walking to the end of your modest 1250 sq foot home DOES deserve a champagne popping party EVERY SINGLE TIME.

I know YOU know, that you have 50,000 reasons to scream while also realizing you have 50,000 more reasons to smile. But I also know, it just doesn’t always feel as such.

I know you are grateful for SO many things, while at the same time wondering ‘What the FAAAAARRRIG’ is going on in my body???

I know you are happy for others going through great times in their life, yet also feel empathy for those who are going through struggles of their own. I know you’re a good friend, a good parent, a good child and an overall great person.

But if nothing else, I want you to know that I get it. I get how you feel and I know you are trying. I know you are trying to be strong, to be grateful, and to be kind. I know you are trying your best to simply keep TRYING and I know you are ALWAYS trying your best to keep smiling.

I also know it’s not easy. I know it’s not easy to sometimes feel like a burden on others, yet continue to surprise those same people with the many triumphs you endure.

I know it’s not easy to get dressed in the morning let-alone ‘dressed up’ and I know on SO many days it would be SO much easier to just NOT…

To simply NOT get up, to NOT get dressed, to NOT smile, to NOT be kind, and to NOT be grateful.

Yet you ARE.

You may be the slowest, and most worn out one of the pack, but you are also the mightiest, bravest, most courageous and most experienced, because this reality is YOURS. It’s yours in every single essence it embodies, and YOU my friend have become the veteran of it all.

It will NEVER become easy, but in so many ways you have mastered the art of making it appear so. You will ALWAYS cross that finish line no matter how disadvantaged you start OR with how many huffs and puffs you exude, because after all, YOU are the the little engine that COULD and YOU my brave warrior are KILLING it!

#thelittleenginethatcould #chuggalug #nevergiveup #braverthanyourbattle #Igetyou #keeponkeepinon #strongerthanyouthink #MS MSawareness #warrior #blog #blogger #personaljourney #burnfireburn

The Undeniable Truth about Nerve Pain

Can you PLEASE check just ONE more time? There HAS to be something there. Maybe check a little higher, a little lower, or a little to the right, you say… Maybe get out your flashlight and put on your glasses, you say…

But no matter how many times checked or by how many different people, the same confident answer is always provided… “There is NOTHING there.”

HOWEVER, no matter how flawless your body may appear, negative of any cuts, scrapes, burns, rashes, bug bites, bee stings or breaks… YOU are right. There IS something there, only no one else can see it.

YES, the terrible cross-between feeling of being burnt in a fire and excruciatingly frostbitten, all exists just as horribly as it sounds, but only you can feel it while the rest must solely imagine.

CHRONIC NERVE PAIN: The absolute DEVIL of all pain. The type that can make you feel like a torture victim inside, yet forces to you to smile like the Queen of England on the outside, because as discussed above, you look GREAT!

While ALL pain is awful in its own individual way, I truly believe that nerve pain is often UNDERSTATED, simply because it is MISUNDERSTOOD. It is not the type of pain that most people experience in a lifetime, let-alone on a daily basis. Even most doctors themselves are more likely to have experienced the pain of a herniated disc, or childbirth, over chronic widespread nerve pain.

Often when I tell people I suffer from this type of pain, they compare it to something similar to sciatica. And by NO means am I trying to belittle the pain of sciatica, childbirth, OR a herniated disc, because I’ve experienced all of these before, and ALL are terribly painful. Every person’s pain threshold is different, and while I would never sign myself up for any of the above, I personally find nerve pain not only the most excruciating I have ever experienced (winning the prize over an all natural 18 hr long labour), but also the most difficult to treat.

AND…(a big AND)… since it is chronic in nature, there is NO end in sight. It invades my body during every second, of every hour, of every day, and there is no amount of time in which it will heal. #BRUTAL

Also, when asked, I find it one of the most difficult types of pain to describe, but here goes nothing…

SOMETIMES it feels as though my body has been thrown in a fire, SOMETIMES as if it is covered in a million little cuts with rubbing alcohol being poured into each and every one, and other times as if I am being stung by an entire swarm of bees.

SOMETIMES it feels as though my bones are literally going to split open from the overwhelming feeling of pressure, and EVERY day I feel as though a girdle is being ruthlessly tightened around my torso, notch by notch without EVER releasing.

With every move I make, the neurological feeling of pain and tightness from the top of rib cage, around my back and down to the very tips of my toes, increases in severity and often doesn’t improve for days or even weeks.

I have tried EVERY nerve pain medication on the market, including medical marijuana, and EVERY option offered at the pain clinic, yet STILL even the highest dose of my prescribed medication BARELY takes the edge off. I have also, without luck, tried many non-traditional medicine therapies.

My pain is also highly effected by environmental factors such as the weather, certain foods (which I religiously avoid) and VERY much so by any teeny tiny bit of bug or bacteria that enters my body, to the point that just being IN a hospital often increases my pain. And on a daily basis, if my level of pain spirals drastically out of control, NOTHING can reel it in. Two Tylenol threes don’t even touch it.

Over the past 5 years, and more specifically the last two, my nerve pain has increased in severity, just as my illness has progressed.

Ironically however, it is has been within these same two years, that I have developed more resilience than I ever fathomed possible.

It is also within this most recent year, that Wheelchair Tennis has taught me just how independent one can be in a chair both on and off the court.

SO… How am I able to be in such extreme pain on a daily basis, yet still compete on the courts? If the pain increases with every inch I move, how am I able to train at the intensity I do, and travel all over the place JUST to play tennis?

For me, it literally comes down to MIND over MATTER. And no, that doesn’t mean that I have some magical ability to ‘ignore’ my pain… I WISH.

But it’s either I do it in pain or I don’t do it all (and STILL be in pain.) The mind needs a distraction and Wheelchair Tennis just happens to be mine.

It’s either pushing through the pain or becoming a victim to it. The choice will ALWAYS remain mine to make .

To which many MS patients likely agree, we simply MUST find a way to channel our energy, and in a different way than we once did.

For many of us, we have already lost so much from our ‘Pre’ MS days, including the sports we ONCE loved, the car we ONCE drove, the heels we ONCE wore, and the blocks we ONCE walked without effort.

The gym we ONCE attended, the date-nights we ONCE enjoyed, the job at which we ONCE excelled, and the type of parent we ONCE thought we’d be.

We’ve been forced to overcome the not so subtle stares which we ALL know we receive, as we limp, stumble, or wheel into a room full of people.

We have been forced to find a way to disregard the feeling of a billion eyes fixated on us as we struggle to complete one of life’s ‘simplest’ tasks, such as stepping off of a curb, or transferring from our wheelchair into our seat at the dinner table.

We have had to find NEW ways of being happy, NEW ways of being successful, and new THINGS to be successful at. We have had to find NEW ways of exuding the confidence we ONCE held, and NEW ways of becoming strong.

We have had to find NEW date nights to enjoy, NEW flat as heck shoes to rock, and NEW ways of being the world’s BEST parent.

SO…in answer to WHY we are able to do such intense things whilst under such INTENSE pain, is simply because we are MS Warriors and we MUST.

We MUST go on in this life with a smile brighter than we ONCE eminated, a mind stronger than we ONCE fathomed possible, and hold hope higher than we EVER have before.

We must walk, limp, stumble or wheel into a room with confidence exuding from EVERY. SINGLE. NERVE. we so intensely feel, because this is our NEW life, the NEW version of ourselves, and our NEW level of resilience. These are the NEW cards we’ve been dealt, and with these cards baby, NO pain NO gain!

#althoughnopainwouldbebetter #bestrongandcarryon #thetruthaboutMSnervepain #braverthanyourbattle #MSawareness #neverlosehope #channelyourenergy #burnfireburn #literally