I Can’t Feel My Legs

I Can’t Feel My Legs

There are few things more terrifying than waking up unable to feel your legs. Trying to stand up and, instead, sinking to the floor. Having to crawl to the bathroom; dragging your body across the floor and feeling so incredibly overwhelmed…helpless…disabled.

This seems to be the way my body works. Ever since I can remember, when I got sick, I REALLY got sick. It’s an “all or nothing” response. I remember when I was quite young, I was sick with tonsillitis, which had moved to my limbs. I woke up in excruciating pain! I could hardly take my covers off. I laid there crying to my sister to help me get to mom and dad’s room…I couldn’t feel my legs.

When this type of thing happens, you don’t think you’ll ever get the feeling back or that you’ll ever not be in pain. Like I said, there are few things more terrifying. Within the past 3 years or so, I’ve woken up, taken a step out of bed, and completely collapsed to the floor. I would then sit there, stunned. What had happened during the night to have paralyzed my legs? Within a minute or so, sensation would return and I’d get up and carry on with my day.

Today, however, I woke up to the most debilitating fever. I should have anticipated it since I went to bed with the chills…the first sign of a fever. However, I was too tired to be bothered to grab a cold cloth; thinking nothing of how serious a problem this would turn out to be. When I woke, I couldn’t feel my legs…and the paralysis didn’t subside for at least 20 minutes. Crawling on the floor, whimpering because my sensation and strength weren’t coming back. My head was pounding…I could feel my heart in my ears, and I thought my head was going to explode.

For anyone, fevers are not fun and can be quite dangerous if not controlled. In the case of MS however, fevers that are indicative of respiratory infections…like my case, today…can aggravate MS symptoms. Hence the numbness, weakness, dizziness, etc. I was reassured by my neurologist’s MS clinic team that usually MS symptoms subside as the infection improves. Thank goodness! I was of course worried because the last time I had a fever, like this one, my symptoms got progressively worse; which was over a year ago, before my diagnosis. I will say that I am relieved to hear this and that I was able to get my fever down…and can now walk; though still weak.

It’s times like these where you really want your family close by…just in case! I admit that I did act childish while I was whimpering on the couch to my roommate that I couldn’t feel my legs…not my proudest moment…

So again, I have to be patient with myself and listen to my body. I have to take a deep breath and relax; trying to keep my body temperature down…which is not the easiest task when you already have an impaired ability to regulate you body temperature. It is frustrating that small colds can cause such havoc within my body. That I HAVE to take extra precautions during flu season and when I do get sick. That even a small amount of stress can tip my compromised immune system over the edge and cause my MS to respond negatively. I never want to find myself in a situation where I can’t feel my legs again. But, realistically this is only the beginning of my time with MS. I will take it as a learning curve, because I have a feeling that this won’t be the last time my legs disappear from under me.

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An Objective or Subjective Life

An Objective or Subjective Life

“Experience is simply the name we give our mistakes.” – Oscar Wilde

Experience…mistakes…funny that they can be interchanged. Funny that we objectify rather subjective, personal events. Because mistakes do give us experience and can actually make us experts in those areas; those areas we delve into seeking answers…knowledge…perfection. Then we are graded based on these “experiences.” And in turn, we grade ourselves; comparing our successes to our failures. But, here is where we are wrong. There are no failures…no “true” mistakes, just experience and learning.

Of course some experiences have heavier consequences and this is where the concept of mistakes comes from. Just because the result may not be what was intended, in the short term, it was still an experience that brought with it learning. I’ve made countless “mistakes;” many of which I have given far too much weight in defining myself. It puts such a negative spin to life and those important learning events, I feel.

So, what experiences would be would we classify as mistakes? Relationships…a job…something you did at work…a poor test grade…a spill…trusting  another…a missed opportunity…? [Please share any of your thoughts]. And how much have you reprimanded yourself for these? I know that I have…and still do. Because, they are mistakes…miscalculated decisions. But now think, have you also learned from these? So…experience.

I am, currently, trying to forgive myself…make amends for a decision that I made not too long ago. I really wish that I could see what the future looks like sometimes because, as an indecisive person, I want to know what I’ll learn from this.

Having MS, I really don’t know how others perceive the concept…or me. I don’t want it to define me, but I DO have it so…I OWN it. It comes with me everywhere; like that blanket or teddy bear forever attached to a child when they are young. Having this experience, I can’t possibly pin point a mistake that lead to this…and I hope I never do, to be honest. But, everything I’ve done has brought me to this point and, when I reflect, I am generally content with my life thus far. I’ve taken aspects that weren’t great and learned from them…that touching the hot stove top will hurt! That, instead of walking for an hour…or even half an hour…I’ll walk for 15 minutes several times in that day.

It’s just like the objective experiences we put towards our careers; in job applications…as requirements…as assets that qualify you for that position. You wouldn’t categorize these as mistakes…am I right? You want to sell yourself…with experiences; and, I think we should do that for ourselves. Find the confidence, the learning, the experiences we’ve overcome and are going through. To sell you to yourself; and keep your learning experiences your own. No one person’s life is identical to another person’s. Though, we can relate to one another through the choices we make and the challenges we face…the similarity in decisions or mistakes made.

Keep learning and find success…find happiness, specific to you. We also try to objectify our happiness; quantifying our quantitative successes. We display this through materials, money, and other measurable means. But, it is so much more simple…so much more personal…so much more subjective to each individual. No one can decide what happiness you are entitled to, because you ARE entitled. I am entitled. Getting this far, no matter the distance, I’ve had experience; I’ve learned, I’ve chosen, and I’ve been happy. Learning is ongoing, with experience. And my happiness…with myself and my life…is ever growing. So…I guess what I’m saying here is that, when you’re down on yourself, reflect. And in that reflection, remove those objective mistakes and focus on what you’ve learned. Teach yourself to be happy with yourself, in your experiences. You are your subject of study! I am mine…and learning through my experiences.

Drunk & Dangerous or Just MS…

Drunk & Dangerous or Just MS…

I mentioned before that a lot of the time I look like a drunk…staggering around and bouncing off stable surfaces. I’ve joked about it numerous times with my sisters and friends; never actually thinking I’d find myself in a situation of exactly this nature.

Tonight I went out for a relaxing night of billiards and wine. I consider myself a VERY responsible person, especially when alcohol is involved. I actually don’t know why anyone would purposely make themselves feel incapacitated…but that’s just me. Anyways, I am a responsible drinker AND I was also with my mom and a roommate…no reason for rambunctious behaviour.

Three and a half hours later; after some pool games, 2 glasses of wine, 2 glasses of water, and a good portion of nachos; I went to the bathroom stumbling no more than how I was when I first entered the bar. I felt a bit nauseous, so I did relieve myself a bit quietly…but then some nosey person knocked quite vigorously and asked if I was okay. I lied and said, “I may have had too much to drink.” I sat down and waited for them to leave…also because, as some may know, bathroom trips can be a timely process. They knocked again, asking if I was okay and I responded, “yes, I am okay.” She was quite persistent with a quick comeback, “well, you just said you weren’t okay, so I’m going to wait here till you get out.” This was absurd! So I was straight with her, “I never said I wasn’t fine. I am fine. I have MS so I will be a while….etc…I have a condition and I am honestly fine.”

They were there when I left the stall and insisted on following me to where my mom was sitting and said they had to escort me out…I was speechless.

This is a GREAT example of ignorance regarding situations/conditions that a number of people deal with on a daily basis. Such lack of awareness and education to staff; and the stereotypes placed based on the time of day (night), the surrounding drunk population, the fact that I look quite young, and me simply stating that “I may have had too much to drink” in attempt to avoid sharing my situation with people who are really just looking for drama. Gosh, I cannot win here. AND, either way, they found out that I have MS…Where is the dignity in that type of treatment? That type of world?

My mom, trying to stand up for my dignity, was physically held and shoved to a wall! She didn’t lay a hand on anyone. And these women told her what I had said to them…like it was a lie…the ignorance. It breaks my heart really, that I tried to enjoy a night and people make it a goal to go out of their way to create drama and make a mess out of nothing…out of an innocent bathroom trip. The LAST thing I would have EVER thought I’d have to ACTUALLY deal with.

The ignorance. The lack of awareness. I am stunned…at the extent people will go to oppress others; because of assumptions…because of authority. Tell me, what kind of life is that? Do I have to go around with a neon sign on my forehead saying, “NOT DRUNK & DANGEROUS. I HAVE MS”…?

This is to awareness! This is to dignity!

A New Me

A New Me

Restart Button

Do you ever have a week where you’re not yourself; everything seems to be going wrong and, as much as you want to appreciate each moment, you can’t wait for a better day? Among many others…this past week was one I couldn’t wait to put behind me…

Ever since June of last summer, I’ve been receiving monthly 2 hour-long infusions of an aggressive treatment to delay the progression of my MS and subside some of the debilitating symptoms.

With a pain that takes hold of my hips, burying itself in my back and stretching it’s limbs up to the base of my neck and around my waist, with a tight squeeze; how can you not want to fall to the floor crying? The pressure…the discomfort…the mind-numbing pain follows me through every part of each day.

Sitting provides some acute relief, but pain is persistent, and relaxation becomes a feat on it’s own. Therefore, I am stuck between complete immobility and rigid, spastic, uncoordinated movements. Because fatigue is also a good friend of my dear MS, finding enough energy throughout the day requires excellent planning and an impeccable balancing performance of daily tasks. Even then, each day comes with it’s own challenges and makes it almost impossible to plan. I find myself cutting time out of the things I really enjoy; like walking or dancing in my living room; because I’ve used all of my reserve on necessary, responsible, “adulting” things. When I do find some energy, it’s wonderful…I am not sitting! But then comes the heat waves…the vertigo, the numbness, the spasms, and the amplified dis-coordination. And there I am, stumbling around like a drunk…which is an accurate description of how I actually feel…and I want to collapse because I can’t feel my waist down to my toes and the pain in my back takes an even tighter hold!…Persistent, right?

This provides some insight to my week leading up to treatment. Outside of my MS, I try to lead a “normal” life. I am 6 weeks away from completing my school program as an occupational/physiotherapist assistant…ironically. However, this past week was also the first week of my full-time 7 week block placement. So…being on my feet all day, ready to learn, and trying to making a good impression while dealing with my symptoms did not make for an optimal week. Like I mentioned before, it’s almost impossible not to compare yourself to other able-bodied people without getting frustrated and angry with yourself.

Fortunately, my treatment was a breath of fresh air…a restart button. I got home and jumped for joy…literally, I did jumping jacks! I felt like a whole new me. Don’t get me wrong, my symptoms don’t just disappear; they are managed. Like if you put cold water over a burn…it feels better temporarily, but continues to itch for attention afterwards.

It’s actually incredible how much impact pain and anything going on inside of your body has on your mood and reaction towards others. I close myself off and sit like a ticking time bomb ready to explode. You can probably call me emotionally labile. In a way, I’ve always been that way …since I can remember. I was quiet as a mouse, internalizing everything until I was full to the brim. Then, I would explode out of nowhere. Anger and tears spilling everywhere; leaving me empty and embarrassed. Now, I experience some derivative of this pubescent outburst when I find situations aggravating. Unfortunately, my emotions are primarily channeled by my symptoms and pain. So now, I try to take a deep breath and restart myself if I am able to anticipate when I am getting overwhelmed. Sometimes, however, I am unsuccessful and there’s little to no warning before an outburst; which is also frustrating. I really dislike being labile.

Feeling the difference my treatment makes in my day…like a restart button…I’d like to give it a try on my own in the way I handle and self-manage my symptoms. Maybe it’ll make that dreadful week more bearable. Maybe it’ll make me less of an emotional bomb. I can’t tell just yet…but I do know that everyday still counts.

I know and/or hope that, with time, I will get better at my balancing act between perseverance and rest; while considering self-acceptance and forgiveness of my faults and weaknesses. When I am in pain I know my body is trying to tell me something and instead of getting stubborn and upset I can stop, reflect, and hit refresh. I can take the tough moments as a learning curve instead of one I need to combat.

No self-destruction…but rather self-construction.

My Support Team

My Support Team

Regardless of what stage you’re at in life; a group of friends, a handful of followers, or that one person you trust the most can make all the difference in making a tough situation manageable. I can honestly say that I wouldn’t be where I am now, especially with my MS, without the people around me.

Having lived on my own, I can say that I don’t prefer it. I actually was quite lonely, preoccupying myself with work and avoiding being home…just to stay up until 2 am when I did get home.

This experience has really opened my eyes to the importance of keeping people around, appreciating their time and company, and enjoying shared thoughts/memories/ideas. I admit that I am one of many who push others away when things get tough; not wanting to feel vulnerable and rely on others for support/help. However, THIS way of thinking is the complete opposite to successfully get through life’s challenging obstacles…or life in general! Why else do you think there are so many of us on this planet? Or why you have sisters, brothers, parents, best friends? The list goes on. We find companionship in one another, naturally, and surround ourselves with people who make us feel good and beautiful and worth what we want most in life.

It is unfortunate that comfort and security can be associated with a situation of abuse and worthlessness. That there is comfort in disturbance; especially when there is history and emotions attached. But, let me say this: Are the few moments of feeling appreciated and secure worth a lifetime of absent/unstable support?

THIS feeling, I decided, was not for me. Living with my sister, who has encouraged me to stay in touch with people who love me and care about me, has been a most enlightening experience and lesson I am continuing to understand.

I wish it hadn’t taken me getting MS to realize my worth; my worth that I neglected the past several years. And, maybe it is just coincidence, but people matter and I plan to surround myself with the good ones. With those who love me, with the ones who seek my help/support, and with those I can share with and teach about life’s challenges. And in doing so, I hope to enlighten, even a small handful; and continue to be amazed by all the beauty and colour people bring to life.

I Miss Me

I Miss Me

03/21/2016

Sometimes I wish there were things I could take back, redo, or do differently. That some choices I made could be changed…where would I be now? What would my life be like? Do I really want some different rendition of my life now?

I want to, and have learned, to appreciate life now and what I’ve done to get here. I did not imagine where I’d be today 10 years ago…5 years ago. I cannot possibly foresee where I’ll be in the same time it took me to get here!

I hear about 5 year plans and the importance of envisioning where you want to be/see yourself in 5 years…what are your goals? I worry about the future and the things that I cannot control. I try to make my 5 year plan, but I keep coming up to the same problem…I miss me…I want what I was 5 years ago. It’s torture every time I think about all the ambitions, the power, the thrill I had then compared to how I feel now. I was invincible and empowered!

I made some choices to put others before myself and forgot about my happiness and self-love…and now, I have MS. It’s really difficult not to be furious with myself for forgetting about me all those years…so difficult not to push myself deeper into my self-destructive hole.

I feel, now, that I have been put in this situation to address this exact issue. Confront my thoughts and find myself…love myself…as I am, and be me rather than missing me.

It is really wonderful to reminisce and be proud of accomplishments, for everyone. But, those ARE just the beginning to something more and ARE NOT the only moments to be cherished. Life doesn’t just STOP when you’ve been happy once. In fact, life is ever-changing…molding to events like the brain’s plasticity while aging or after injury. The body compensates to function at it’s best in what condition it finds itself. And we, in life’s events, must mold to fit where we find ourselves and push the boundaries of the factors that limit our potential.

A 5 year plan may be one way to start. I am still going to work on mine; with the goal of I can’t wait to be me! Because everyday I AM me…I can’t possibly miss me. The time I miss was specific to that situation and I was NOT limiting myself. I can’t miss me, because I’m still here. My mobility/disability doesn’t “define” me or what I am capable of…Of course, realism is important for goal setting, and at this moment I cannot run. But, to give some perspective, last summer I couldn’t do jumping jacks and now I can! It wasn’t easy, but it was a goal and I had to stop comparing myself to what I could do 5 years ago.

I think maybe, as a stepping stone, I’ll begin with a 1 year plan and move from there. MS has an unpredictable course, like life for anyone really. But I am deciding on patience today. To love myself and all I AM capable of. I will not be my limiting factor!

A Walk In My Shoes

A Walk In My Shoes

03/20/2016
I wrote the following blurb last summer to let out my thoughts about my diagnosis. I decided for it to be the first thing I post here; as a beginning marker to my journey with MS…

A Walk In My Shoes – 08/07/2015

Shoes, now those are definitely a battle on their own to walk in. This was one of my early clues that something wasn’t right. I remember, even as a kid, I never liked shoes; running around in my bare feet on the gravel. But, about a year and a half ago (almost two years now!), as I took a long walk with my mom, I had this immense urge to take my shoes off…like I needed to cool down…and it helped for a brief moment, until I warmed up again and I had no shoes left to remove. Still stumbling in my bare feet, feeling dizzy, and my stomach so incredibly bloated to the point where it was impossible to hold my abs in and support my body; there was nothing I could do to get cool enough to feel “normal.” I wanted water to drink, or to jump into a cold lake, or as least soak my feet and hope to God I would feel better than how I was feeling.

I was exhausted when we got home, but my mom was fine…though parched from the long walk. Even my twin sister was ready to bounce around and clean the house with the energy she still had. What was wrong with me?

Seeing my twin sister be able to do the things I once could do was, and still is, heartbreaking. How could we be so similar, yet so different? How was she not feeling what I felt? We started going to the gym; and after several weeks, I STILL couldn’t run. I hated myself for getting THIS out of shape; since I used to dance professionally, this just wasn’t an acceptable physical state for me. I was NOT okay with this. Every time activity became challenging…which was pretty much every time I did anything…I suffered in silence and would not accept this for myself; though I was unwilling to seek help. I wanted to do better so badly, though my mindset was probably not healthy. I do miss my determination throughout my ignorance, especially since my situation has gotten MUCH worse.

Sometimes, I am so frustrated with myself and how able those around me are that I lash out and cry because I am so sad; wishing they knew just a little bit of how I felt every day. Don’t get me wrong, I would never wish this on anyone! But occasionally, I feel it would be nice if those around me understood what I have to battle every moment of every day. I fear it will never be over.

Right now my twin is in another province. And as much as it angers me to see her do things that I cannot, I miss her being here to help and joke with me when my legs stop working and I look like a fumbling drunken goof. She is definitely a blessing in my life. She pushed me to get my situation investigated and has supported me the whole way. I am so thankful! I am also thankful to all my family; my mom, my older sister, and my dad who have been my shoulders to cry on and ears to listen.

Although my diagnosis is young (at the beginning of June), I know this struggle began years ago. My eyes were always sensitive and would get blurry and red, and my balance…though I danced on cruise ships, ironically…was, well…let’s just say that I fell a lot; along with many other symptoms. Anyways, it all pointed to MS; something I never EVER would have considered would happen to me. I wish it was all a bad dream to be honest. I’m not even 24, haven’t been married, or had kids (which I am so unfathomably terrified about because of my situation and there is no good way to explain that to anyone). I haven’t even finished school yet and find it very hard to motivate myself to continue.

I know it’s going to be a long hard road; but I also know that the shoes I wear, my attitude, determination, perseverance, willingness to succeed, and effort to keep those who love me close will make all the difference. I believe that’s what life is about and that everyone walks their own road, with their own potholes; this just happens to be mine. Everyone has a difference purpose and I must accept mine, choose to be happy, see the good, and make the best out of my life. I know I will never be able to walk in someone else’s shoes and can’t expect anyone will walk in mine; it is what makes us all different and has given me a whole new perspective of finding happiness and fulfillment in any situation. I always used to say “it’s a beautiful day, I have air in my lungs; I’m alive” when someone asked me how my day was. So I’ve decided that I need to truly believe this when I say it and really walk in my shoes; with the air in my lungs, basking in each beautiful day I am given.