Who am I?

I feel like I am losing myself or am I?

A comment triggered me the other day and I wrote a post on LinkedIn about it to get it out of my head and into the world and bring awareness to it. After a few days, it still deserved more attention. More explanation of why it ‘chaps my a$$’ to hear comments like this.

These are statements and comments that are meant to reassure and make me feel good. They are all said with good intentions:

"well, you look great"
"you're so strong and healthy"
"you'll feel better tomorrow, rest"
"Take care of yourself"
”Have you tried leafy greens, Kale did wonders for my neighbor”
”Just keep moving, things will be better soon”
and I could go on, but while I smile and nod on the outside, I cringe to my core every time I hear them in relation to my #MS.

Those of us with MS aren't alone but those without MS aren't in the same arena as us. It literally takes one to know one. However, as we are actually so different that’s rarely the case. We are all snowflakes and our symptoms are special and individual to us. For example, if you know someone with MS and tell someone else they are doing great. there is a good chance they wouldn't agree.

I actually bet people reference me when talking about MS and say, “She’s doing great”.

I am, if great equal fatigue-ridden daily, with tingly pain in my legs and spasms in my hands, whole body weakness, and brain fog so thick I forget words and activities when stressed, anxious, or even over-excited.

Then yes, I'm great.

Don’t get me wrong, I am not blaming, saying not to respond or react to my MS but perhaps we change the conversation. No one should be blamed. No one should feel bad, abandoned, or overlooked. But those with MS do. I feel if I don’t get up off the couch and walk to the sink for my own glass of water, I’m taking advantage of those around me. If I ask for help in the slightest way or say I simply can’t right now, I am letting those around me down.

I love to hike and be outside and in nature. On the days my partner asks me to join her for a walk after work, I respond, “yes, let me get some shoes on”, when all I want to do is sit and rest. But doing that makes me feel lazy and like I let her down. So we go. I do enjoy it and my time with her. There is plenty of time later to rest, right? These are very simple examples because if I feel this way about the simple things, imagine how I feel about the bigger things. Skiing with my daughter, hiking to the top of a mountain, cooking dinner for my family… it all gets done and with a smile on my face. I love it, my body just doesn’t like to handle it.

I know I am not alone. Most of those with MS cover it up. Don’t even share with close friends or family as they don’t want to be a burden or questioned on the validity of their diagnosis due to ‘looking fine’. Those without a chronic illness, an invisible, incurable disease shouldn't and couldn't know what those of us with one are experiencing weekly, daily, and even moment-by-moment. The symptoms of MS are almost spontaneous.

While laying in bed feeling rested, able, and as if a good night's sleep was had things can shift. I sit up, go to the bathroom, get dressed, and as I head down the stairs to start my day I’m tired and wondering what was done so strenuously to feel this way. Was it the socks? Should I have bypassed the socks to be able to make it to the sink and start a pot of hot water?

But it isn’t as simple as sitting down and resting. This is fatigue and no amount of rest or sleep will stop it from coming on. It’s MS. So yes, rest allows my body to not do things, but in my eyes, that’s not good enough. The day is meant to feel productive. I need to feel like value was added at work, at home, and in my life.

I’m losing myself. Or that is at least how I feel sometimes. I don’t know myself anymore as my body tells me what it’s capable of daily, it’s not a choice, it’s a determined fact at that moment. I struggle to know myself and my worth. I just keep smiling and pushing through my days and my nights. I rinse and repeat.

To thwart these feelings I have started engaging more with those with MS. Those like me. Joined writing groups and a book club all with a focus on MS and connecting to each other and how we feel. I have started to be more engaged on social media and make myself available for podcast and webinar opportunities to share my story. I have become an #MSAmbassader so I am available and educated to talk to my town, my community, and those wanting to learn more about MS.

And it's why I #advocate so damn hard. So others are aware. And people start using phrases like, "it must be awful, how can I help?" or "it’s unimaginable for me, is there anything I can do?"

We don't yet and maybe never will let the fact be that we aren't the person we once were. I try to do a phenomenal job at smiling and getting everything that needs to be done, checked off my daily list. Making it look easy and like I have more to give. Rarely there is ever more to give, or in hindsight, I didn't actually have anything to give, to begin with.

It's all out of sheer panic that I will disappoint. The terror of letting others down and not living up to the potential I used to have and doing the things I used to be able to do.

'I can't do it' is a phrase that breaks my heart. I used to be able to multi-task and sprint through my day enjoying several activities and things slammed into a full schedule and was eager and ready for more. Now having a little to give for a short hike and can find myself asking, “can we have a simple dinner?” where sitting down is the priority.

I was asked the question the other day, “Do you still work?”
I proudly answered, “Yes, of course.” Then came the kicker, which is ironic because it did kick me right in the gut.
“What happens when you no longer can work and what if it’s because of MS?”

Hmm, I’d never thought of that.

I have always been so open and honest about my diagnosis at work because I know with stress comes my disability so if I could take the stress away and get help on my workload and people understood to bear with me during my hard days allowing me to bounce back, that I would always have a job.

But now we enter the “what if” stage the question triggered. What if my hand spasms got worse and I couldn’t type any longer, what if I lose my sight or it gets blurry and I can’t see my double monitors, what if I couldn’t sit for long periods of time without my legs being in agonizing pain, what then?

A lot of people seem to identify by their job titles. Do I?

Yes, I am a mother, and yes I am a nature lover. But what identifies me most right now is my expertise in the ‘social verse’. My ability to strategize and think outside the box when it comes to digital marketing. I am an expert in my field so what happens when I don’t have that career?

Who am I?

When I really sit down and think about it, I am so much more than a kick-ass mom or a social guru at Dell! Because of my life struggles I am a farmer’s daughter with skill sets only limited by my willingness to learn, I am an out and proud member of the LGBTQ + community, I am an MS advocate and I am living my best life with healthy choices and lifestyle changes becoming an inspiration for many and a new friend to some.

Thank you for the question. I know who I am.

I am Sarah friggin’ Locke!