The DOs and DON’Ts I’ve Discovered since MS

As my blogs go on and my story continues, I’m sure by now you realize that having MS is far from a walk in the park. 

Starting out with a disease you know nothing about is probably one of the most challenging parts. You don’t know how to react, what to say, what to do, and you often don’t know who to talk to. SO sometimes the initial reaction is to do nothing. But THAT right there, is my first DON’T.

1) DON’T do NOTHING

When faced with a challenging situation or a mountain high build-up of adversity, it’s certainly easy to lay back and not do anything at all. But it has been my discovery that doing nothing during a time which requires action, lands you further away from your ultimate goal of becoming the best version of yourself. It doesn’t have to be a big step. Just be brave enough to take one, and see where it may lead you. 

Reach out to others who are facing a similar situation, friends and family for support, and be sure to do your own research so you can become educated on how to best tackle each and every day. 

For a long time, my decision to continue doing what I was doing in terms of work, physical activity, relationships Etc. WASN’T a decision NOT to do anything. It was actually a decision to continue doing EVERYTHING that made me happy. I also made the decision to become educated on the disease so when and if it struck, I was ready. And boy did it ever!

2) DON’T Drown yourself in Self-Pity

Of course it’s okay to feel sorry for yourself sometimes. It’s a natural part of life regardless of what you’re dealing with. It’s a PERFECTLY understandable reaction when you’re dealt cards you never saw coming, or when you are grieving either the loss of a loved one or even the loss of yourself.

BUT there MUST come a time when things are put into perspective and you realize that your life is FAR from over. It’s about finding other means to be happy, and finding alternative solutions to building the best version of yourself, regardless of the adversity you are forced to face.

It’s okay to once in awhile have mini or MAJOR meltdowns, just as long as you don’t drown yourself in pity, and blind yourself from seeing the potential this life still has to offer. And if you’re having trouble doing this, just think back to my favourite quote which I’ve mentioned time and time again…”There is ALWAYS someone who would LOVE to have your bad days”

3) DON’T Belittle the Severity of Other People’s Problems

Sure, it is easy to look at other people and think “how can she be complaining about this? Or how can he be complaining about that? When they are able to walk, they’re able to do whatever they want to do and I’m here in a wheelchair not being able to do so many things I used to be able to do..😡

Trust me I’ve been there. I’ve been the one straight up pissed off at the person who mentions how brutal their cold is on Facebook or how awful their back pain is during pregnancy, when I had THAT back pain, PLUS suffocating tightness throughout my torso, the inability to breathe at times, the inability to sleep, the feeling of my body being burnt in a fire etc. Etc. 

BUT I’ve stopped all that. I’ve stopped mentally belittling other people’s problems because once all is put into perspective, each person’s problem is their own reality of awful. AND although they most definitely are genuine when they feel badly for our struggles, we can’t expect them to fully understand what they don’t experience. NOR can we expect ourselves to fully understand other people’s struggles because of the exact same reason. We don’t know it because we have NOT experienced it.

We can be sympathetic or empathetic, but until you walk a day in their shoes or they walk a day in yours, it’s unfair to place judgment. And there will NEVER come a time when we do walk a day in each other’s shoes, because even when dealing with the EXACT same disease, we don’t deal with the EXACT same symptoms. Even the closest we can get will NEVER be exact.

Of course, if we find ourselves dealing with a similar situation we can lend our support, opinions, or advice on how WE cope, but we can’t expect everybody to see things the way we do. We are UNIQUE Individuals. EACH with our own UNIQUE stories.

Understanding this alone has given me the clarity necessary to recognize that the problems others deal with are REAL, and sometimes although we may not think they are close to the severity of our own, just remember that often people have problems of which we know absolutely nothing about. 

We DON’T know how bad that back pain was during pregnancy or what other struggles they endured. We DON’T know how bad that cold was or what other health problems it may have led to. 

You see the problem with social media is that most of us put our best face forward and leave our problems in the background. We like to shine in the spotlight when we are proud of our accomplishments but most of us don’t talk about the struggles behind them OR take selfies when we feel and look our worst. 

So although Facebook is great at connecting us all together, we must also remember that there is likely a whole lot of NOT so amazing parts of people’s lives we will never hear about nor see.

I have never recognized this to the level I do now. We are all facing our own unique battles, and there should NEVER be a reason why we feel OURS needs to win a grand prize. 

Because at the end of the day, it’s not our job to be a ‘problem severity detector’ or to be the ones placing judgment on another person’s life. 

Problems are ALL problems. NONE are a walk in the park, and NONE are a trip to Disneyland. PROBLEMS are PROBLEMS that NONE of us wish to have.

4) DO be Courageous

Over the years BOTH living as an MS warrior AND as myself prior to MS, I’ve come to the conclusion that hardly anything ever comes easily. Almost EVERYTHING I’ve accomplished thus far in life has included FEAR, CHALLENGE and FRUSTRATION at some level or another. 

In fact I can’t even remember a time when something worthwhile came easily. 

ESPECIALLY now. ESPECIALLY when just waking up and getting through the day seems like a bigger task than I ever imagined possible. BUT somehow I always get up, I always fight through ALL the debilitating symptoms, and I ALWAYS make it through one more day. 

I’ve learned that in order to continue to do this day in and day out I must be courageous, I must be brave and I must be willing and able to build the resilience necessary to ‘Keep On Keepin On.’ 

I may not escape this life unscathed, but I WILL escape this life knowing I didn’t hide from my fears, I didn’t run away when things got tough. INSTEAD, I stepped up to the plate and got tougher.

Not all at once… It wasn’t always this way, but life’s a journey, and although this isn’t my desired ending, I am happy and grateful for this place I’m at now.

5) DO get Dressed up

I really do genuinely believe that feeling good and looking good are very much related. And I’m not talking about getting dressed up to the point you’re wearing heels and a ball gown around the house, as I’m not even able to physically do that.

For me it’s about getting out of my pajamas, into a fresh outfit, doing my hair and doing my makeup so that I can look put together the majority of the time. 

Obviously being a mother, and with the physical restraints I face, this isn’t easy and it doesn’t happen one hundred percent of the time, but I really try to make it a priority. 

It doesn’t make my pain better or miraculously make me walk better, but it boosts my confidence, my mood and it makes me feel like I am ready to conquer the day. 

Often the amount of pain I endure on a daily basis is more than I can even describe in words, and on my WORST days I am often plagued with partial body paralysis, leaving me with the inability to hardly move at all.

But still, even on my WORST days, I have made it my mission to freshen up in order to look the part of the warrior I KNOW I need to be. 

You don’t have to deck yourself out with makeup, or as I mentioned, walk around the house in a ball gown and heels. Even putting on a fresh yoga oufit and putting on some lipstick goes a long way for me.

Some of you may be thinking, isn’t this a little vain? To which my response is: ABSOLUTELY NOT! It’s about taking care of yourself, putting love and effort into yourself, and thus becoming ready to conquer the day, so you can get one step closer to smashing that almighty goal of yours. You don’t have to do all of what I said. Skip the makeup if you want. 

But do whatever you need to do in order to create POWERFUL self motivation. Enough motivation to get doing what you KNOW needs to be done, and look good while doing it might I add. 😎

6)Do Remain Patient and become your OWN Advocate

This may be the hardest one of all. When things aren’t going right in life we immediately want to fix them, or find somebody else who can help us to fix them. But unfortunately with an incurable illness like MS, there is no quick fix and in fact there’s currently no fix at all.

Hopes remain high that one day there will be a cure, but until then, like I said at the very beginning of this article, DON’T do NOTHING.

Patience is not sitting around and hoping for the World to Change. In my opinion, it is actually the complete opposite. It is being a self Advocate, a go-getter, determined fighter, and a persistent never settling warrior. It is always looking for the next BEST Avenue to explore in your ever winding Journey.

And when things don’t go as planned, and things don’t become as successful as you once hoped, it’s about NOT giving up. It’s becoming tougher, building an additional layer of resilience and pushing forward to find the next best thing to explore.

It’s all the phone calls and emails necessary to possibly get involved with a brand new opportunity. Maybe it’s a clinical trial, new job, or maybe it’s something totally unrelated to work or health.

But regardless of what it is, things will not land in your lap. You must be a self advocate in order to find these things, and if they don’t become part of your journey right away, it’s being patient enough to realize that maybe one day they will.

Everything I have mentioned in this last bullet point takes an immense amount of patience. Patience to be accepted, patience for it to work, and patience if it doesn’t. It’s NOT getting discouraged and INSTEAD becoming a whole other level of DETERMINED because you KNOW you are that FIERY and FIERCE fighter who won’t stop until the job’s done or the goal is reached.

The GOAL is totally up to you, your life, and your situation. Maybe it is a combination of goals and maybe it is a lot of stepping stones you must reach and cross over BEFORE moving on to the next best thing. But whatever it is, be patient, kind to yourself, and understanding that some of the best things in life take a whole LOT of time. 

REMEMBER that patience is a virtue and Rome wasn’t built in a day!

#theDosandDonts #lessonslearned #lifelessons #bethebestversionofyourself #patience #bravery #fighter #MSawareness #warrior #burnfireburn!!

2 thoughts on “The DOs and DON’Ts I’ve Discovered since MS

  1. Sharon says:

    As a person living with MS for the past 19 years, I totally agree with your “DO” of getting dressed up each day as much as possible. It can be exhausting, but it makes me feel better and ready to take on my day. MS controls the inside of my body, I’m not letting it control my outside.

    Like

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