Multiple Sclerosis is a Bitch

Hey there! Be sure to read my first post before continuing onward. My name is Amy and I live with MS. This is a blog to archive what I go through. Enjoy~

[msisabitch]

April 24, 2018

Hey guys, I know it’s been a while... This isn’t entirely MS related, but I felt this was the best place to put it all down. I’d been taking Anti-Anxiety medication for about 3 months now, and yesterday was the first day I didn’t take any (My prescription ran out and I hadn’t had the chance to refill) So I wanted to talk to you about the downward spiral I felt last night...

Drowning, Crushed, Stabbed exactly 7 times, Smothered, and Having all the air pulled from my lungs..

That’s the 5 ways I decided I wanted to die last night. I didn’t care which option was chosen for me, but I wanted it to happen. That is, that’s how it felt, but I knew of sound mind that it was just the depression talking.

Despite the cynical name of this blog, I’m a pretty positive, optimistic person. I try to see the best of every situation, and I feel no need to worry about petty things. However, last night I absolutely wanted my life to end. Not by of my own decision or will, but of someone else’s, anyone else’s. 

Let’s start from the beginning (sorta)...

I was driving to a restaurant after work to meet up with co-workers/boss to have a pseudo-meeting whilst also eating dinner, mostly company paid. It was pouring rain (As it does in Florida), and I was being as cautious as I possibly could. When I needed to cross the street via median divide, my brakes couldn’t handle the slick, wet roads as I skidded like a skipping stone, nearly into oncoming traffic. I thankfully steered my car towards the median, which absorbed some of the “impact”. That alone was scary and stressful. 

Anywho, dinner goes fine and we’re all enjoying our food, then it’s time to go. I hop in my car, weary of the drive ahead of me. I contemplated leaving my car and taking an Uber (”No, I can’t do that, I’m too broke right now”), maybe get the roommate to pick me up (”No, he’s out of town for a funeral”) and maybe even just driving back to work (3-5 min drive) and just waiting it out (”But it’s already 9:30pm”)

Despite the hesitations and fear, I went along and headed home. It was only a 10 minute drive, but it felt like eternity. I made sure to be no less than two car lengths apart from everyone, and even kept an eye on where I could swerve if, God forbid, my brakes gave out again. Thankfully I made it home with no real danger or impacts. 

Now at home, I’m greeted by my dear partner. We say hello, gently vent about our days, and then settle into our nightly routine of YouTube or separate video games.  

Now that I’ve settled in, no longer muddled by distractions of work, driving, or whathaveyou, it settles in. The existential dread.

What if this is how I’ve always been? Maybe the meds just make me pretend I’m fine.

No that’s nonsense, that’s the depression talking. You’ll be fine tomorrow.

But what if I’m not? What if this is who I am?

The thoughts swarmed and nagged and poked and prodded into my subconcious. each sinking thought shoving further down the rabbit hole.

What if you fucked things up with [name]? What if you’ll never be able to recover from that friendship? 

What if [name] is only talking to you out of obligation, or worse, pity. 

What if you’re not a likeable person?

What if you’re not even desirable?

Obviously you can’t be, look at yourself you’re a fucking mess.

I always say I’ve made friends with my inner demons, but I guess they’re just backstabbers. 

More and more I was swirling, falling, recoiling into myself. I couldn’t move, I was frozen with dread. Finally I decided to take a step forward and try to be proactive of the situation. 

“Hey babe, where’s the pipe?”

I huffed and inhaled as much as I could, trying to drown the demons that wanted to drown me. That was a big mistake (That I don’t entirely regret) While yes, I became numb to the comments, they only increased in volume and severity. 

I feel like I could die right now, and that’d be okay.

How would I want to go though?

Drowning sounds nice, that’s how I feel right now anyway.

The thought would linger off, still swimming in my remorse. Then it’d come back

You know, being stabbed 7 times.. it’d be pretty liberating.

Hush demons, I know your tricks. None of this is actually true, be quiet.

I take another puff

Ooo, what about just soffocating? What if you just stopped breathing right now?

Puff. Puff. 

Oh! Or we could just choke on something.. like that drink. That’d be nice, it’d be like suffocating AND drowning. 

Oh great, now we’re back to drowning

Imagine feeling your lungs fill with fluid, that’d be dreamy.. it’d be like a nice hot bath inside yourself.

I start to notice what’s going on, ableit a bit late. I cuddle up to my partner, unable to really verbalize what I’m going through, only signalling through whines and whimpers. Unknowing of my situation, he extends his hand for me to clutch onto. Good, now I’m grounded in a reality. 

Man, I could sure use a blanket.. or someone to hold me... hell, I could really use just some pressure placed on me.. maybe be crushed, even.

Oh boy, here we go. Puff.

I pull myself out of this trance as best as I can, enough to scream for help as best as I could, via social media. A post about needing some cuddles on Facebook, and a flagrant “LOL IM DEPRESSED” post on Snapchat. Yea, that’ll help. Only, it’s 1AM now.

I finally pull myself from the couch, arms folded and tucked against my body as if I’m protecting myself from some unstoppable force. I brush my teeth, then lay down for bed. I asked my partner to accompany me, as I was finally able to relay that I hadn’t taken my pills. He understands my need for them, and despite being inconvenienced, agrees to accompany me (He’s an insomniac).

We lay in bed, in the dark as I always do, and he offers his body for me to cling to, and I do. I bury my face into him, whimpering to myself as I listen to the demons some more.

Drowning, suffocating, being crushed.. c’mon, pick your option.. there’s always being stabbed, or maybe just sucking the air out of your lungs. It’s just like stretching your limbs

I whine more, and ask him to embrace me, I wanted to feel his body against mine, the weight of it, to try to ground myself again to reality. It almost worked. I start to dwell more on previous fuck ups, and insecurities.

You fucked it up with [name]. You always fuck it up. You get too close, then you overstep your boundaries, and you fuck it all up. Good job you piece of worthless human being garbage.

I break into light tears, curling up more against my partner before coming to terms that he cannot help me. This is a battle I need to fight myself. I tell him he can go, that I’ll be okay (I lied). He leaves me in the darkness by myself, and as I snuggled up to my stuffed animal sloth (His name is Patrick Stump, google it) I cry until I don’t feel the need to anymore. At some point, I finally fell asleep. I think it was 6 AM.. I’m not sure, it was all blur, to be honest.

The next day, I’m doing a bit better, but I see how deep the rabbit hole I’ve gone. I explain to my friends on FB that I post about my mental illness to break the stigma, which is also why I’m writing this.

To anyone out there who has these thoughts, you are not alone. Depression and suicidal thoughts are the absolute fucking worse. But you’re not alone. Please remember this. YOU ARE NOT ALONE   Don’t ever think no one is listening. Please reach out to someone, even if it’s a vague facebook post.

 I cannot thank my friends enough, those who saw my cry for help, and provided me with something to look at. For anyone close to me who is reading this, I assure you, I am not and will not harm myself. I will not take my own life, ever. If not for myself, for everyone else. I know myself well enough to know when it’s the depression talking, or when it’s a real problem. My partner knows I suffer with these illnesses, and does an amazing job supporting and helping me. Thank you all for reading this post, have a wonderful day. (Also please dear god take your pills)

[msisabitch]

Oct 22, 2016

I am so so frustrated. My body is failing me, my libido is failing me, I feel like I'm failing me. My mind is going my emotions on edge, and I feel so full of hate and anxiety and anger all towards myself. No one fucking understands what I'm going through. No one can comprehend how difficult this is for me and I have to continue my life as if nothing is wrong. Just fucking kill me I'm so over it.

[msisabitch]

Aug 24th, 2011

Sorry it's been a while.. I haven't had much flare-ups thanks to Tecfidera.. On a bright note, though, I'm scheduled for an MRI in two weeks! I'll finally have a diagnosis soon!

[msisabitch]

June 7th 2014

I'm going to keep this short for now so i can sleep but I didn't want to forget.. today i noticed that my limbs on my left side feel slightly heavier, as if I had 2lbs weights on them. More to write in the morning

[msisabitch]

June 7th, 2014

As I stated previously.. my vents and rants shall be page breaked as a means of sepearating the more objective stuff from the subjective stuff..

So yeah..

Without divulging too many details, my mood was set on edge yesterday by a friend of mine. I'm currently applying and hoping to get a temporary handicap permit for my trip to a Music and Arts Festival.. 

See, I've gone to this thing previously while suffering through a relapse.. 

I've tried to keep record in the past of my relapses and while I don't have one to show for June, I do for April.. here's what I've written previously.

I'm making a log to track the progression so 1. I can give this to a doctor at some point, and 2. So that the next time I have a relapse, I'll be able to know what to expect. I figured Facebook was the easiest way to track it, seeing as I'm on it almost 24/7.I have had MS symptoms in the past, I can't pinpoint what years, but I haven't had it in years. Because of this fact, I completely forgot the burdens of it all, so I'm writing this to better prepare for next time. Also, for anyone who does care, it's sort of a diary in the way that this messes with my psychologically. Once again, thanks to anyone who reads on.

April 28th, 2011

 I was doing perfectly fine all day until about dinner with my parents, Jess and Hailey. I noticed everytime I licked my lips that they felt weird, and tingly as if they were asleep. I tried to shrug it off, but it continued for an hour. I told my parents, who told me to watch out to see if it progresses. It wasn't long after that that I noticed a small quarter-sized area to the right corner of my lip was also tingly like it was asleep. I kept this in mind, and went to bed that night.

April 29th, 2011

 This morning I woke up for the protest, and when Tom picked me up to take me to it, I rubbed my eye. I noticed as I was rubbing it that my lower lid was tingling like it was asleep. Upon further investigation, I found that the entire right side of my face felt like this. Isn't that fantastic? I also noticed my right hand felt the same way. As Tom and I were heading to the protest, I decided to write him a check for some money I owed him. As I was writing it, my hand was being difficult. I had trouble making clear letters, and my hand just went all over the place. It was so infuriating. After the protest, Tom and I went to McD's, and got some breakfast. My hand was so weak, I couldn't hold my Sweet Tea without the fear of it falling. When we got home, we fell asleep. When I woke up hours later, I decided to make a sandwhich. Never before have I had a difficult time spreading mayo onto bread, laying turkey meat on it, and even cutting the god damned sandwich. I was so frustrated at the whole thing I just wanted to throw the knife and scream, but instead I hugged Thomas as tight as I could and just calmed down. The rest of my day was fine, other than having trouble typing, clicking and moving the mouse, I then found out my right ear was numb. Fantastic. Around 1 AM (Which I found out about my ear around 9) I find that my left hand is going a little numb. Great. Ontop of all this, I'm having a difficult time properly talking.It's so frustrating and infuriating to not be able to create comprehensible sentences right off the spot, I just want to scream. It makes me feel like a baby, who can't talk yet, who can't express it's feelings. I feel like I could scream and no one would notice. It's also frustrating knowing I can't do the simplest fucking tasks without something going wrong. Everything I do is just perfectly set up for disaster. and I'm just waiting for that one brainwave to not make it, and everything gets ruined. I'm so bothered by this whole dilemna, I'm sleeping over Thomas's house just so I don't feel so alone, so I can rely on someone to be next to me when that one disaster happens. We'll see how this whole MS thing goes, maybe it'll get bad enough so I can get tested and know for sure.

<3 Amy May 2nd, 2011

After the past couple of days, I've lost sensation in my face, feet, and hands.. it's getting harder to type, harder to hold my limbs up, harder to hold my body up. I choked early because my throat decided it was ready to swallow the nacho.. which hurt extremely. When I was taking a test in math, I had such a hard time, I just wanted to quit. I wish I could say a lot, but there's not much I can say... Thankfully I'm gonna get medical help soon.

When I went to the festival it was in the middle of June.. We were parked extremely far out and had to walk at least a half an hour to get the festivities. We would walk back and forth a couple times a day to relax/eat/get geared up for the next concert. You know, typical festival stuff.

I can't recall too much other than I had a hard time walking due to my muscles not cooperating, and I can remember having to wear tennis shoes instead of flip flops because my flip flops kept flying off my feet. It was a very exhausting and aggravating experience. Considering my relapse seems to be worse this time around - surprisingly while I'm taking medication even -  I felt it was fair to ask for a temporary handicap tag so that I could park closer to the festival and not have to subject myself to such an intense amount of stress between the summer heat and possible lack of hydration.

While venting to my friend about how much of a pain the paperwork is becoming, she actually looked to me and said "Yeah, but do you think you really need it? I mean, you could be taking the space of some guy in a wheelchair.."

Honestly.. I was insulted. Not only insulted, but I felt a metaphorical slap to the face.

She's been through a couple surgeries which have caused her to have a similar problem in that she has an invisible illness. I'm sure she goes through a lot of turmoil with her physical problems now, so I thought of all people she would understand. I now feel that I was utterly wrong.

I tried to defend my case, but she continued, so I gave in and changed the subject.

The problem with me is I like to let things fester. I like to brood and think about it until it bothers me to the point of no return, and that is where I am.

While I may not be some "guy in a wheelchair", that doesn't negate my need for help. As it is, the guy with the wheelchair doesn't need to worry about walking.. he has a wheelchair. I have no means of help other than my friend offering a shoulder to lean on.

As it is, it's not a reservation system.. I'm lead to believe it's a "handicap get in first" kind of deal over those who are not.

Either way, I tried to defend my case by mentioning how I can't feel half my body, and I've had trouble walking in the past.. so I felt I needed it.

She set me off real well by trying to relate her stomach problems to my MS problems.

Let me disclaim right now -- She spent 6 months to a year in and out of the hospital from a major surgery that went wrong a couple times. Through the whole process, I'd like to think I was there for her the most with the exception of her boyfriend and maybe her mother. I tried to be the best support for her I could be, and I've seen her at her strongest and weakest. I absolutely adore and love this girl..

I understand that having several feet of intestines removed will do something to a person emotionally, mentally and physically.. I've seen that side of her.. I understand that for the rest of her life she will have to get this medical condition monitored, and that she won't be able to eat certain foods or even properly digest food the same.

While it is a terrible, terrible thing she has to go through.. she will still be able to walk. She'll be able to talk fluently without mess ups, she'll be able to write.. 

Hell.. she'll be able to live a fairly normal life.

If my MS is anything like my grandmothers.. I have a limited amount of time.

I understand that we're in the "Golden Age" for MS and everything, but I have to live by my motto "Hope for the best, expect the worst." I'm expecting it get bad.. especially with how intense this has already become.

What annoys me a lot was she tried to relate to me in the whole "I have to use a private bathroom in public so I don't kill people with my noxious fumes" kind of complaint. The reason why this annoys me is 1. apples to tomatoes, and 2. she was complaining not long before about a friend of hers who tried to relate his own minor surgery to her problem and she was furious that he would do that.. so for her to do the exact same thing felt hypocritical.

I'm the kind of person that tries to make people laugh to cheer them up.. I always tried to make jokes out of bad situations.. thats my coping mechanism. Maybe that's why she doesn't take my problem seriously.. because I hide it. I go to work, try to be as functional of a human being as I can be, laugh and joke about "haha, i cant feel my arm! *poke*" and I mock the very thing that's killing me.

What she doesn't see is what my close friend sees. I come from a simple day at work too exhausted to eat, much less clean or help with dinner. I go upstairs, lay down, and dwell on how I'm never going to get better, that I should just accept that I'll always be numb. I cry into my pillow over the fact that I can't even find the energy to change out of my own clothes.

She didn't see me at home with my close friend the weekend my parents went out of town.. I had to have him stay in the next room while I showered out of fear because I couldn't feel the floor, so I wouldn't know if it was slippery and god forbid I fall and hurt myself with no one around. She didn't see him help bathe me because I couldn't tell if I was actually doing it.

She didn't watch me cringe and shiver in pain because the skin on my body was too sensitive for even the slightest touch.

Maybe that's why she doesn't take it serious.

Maybe I should stop trying to stay positive and let the world know how horrible I feel every night. How broken and empty I feel when I can;t even remember a conversation I started a minute ago.

Maybe I should just give up and let this thing consume me and let the world see how I suffer.

/...or maybe I should stay positive..

Maybe I should keep fighting..

Be a role model for other young girls who're going through the same thing..

Maybe I should make my Nana proud...

She told me up until the end "Don't sweat it."

I want to make her proud.. I want her to see me beat this.. for her.

Yeah..

I think after all this venting I feel a little bit better, and honestly, I think I'm going to confront her sometime soon about it..

The reason why I haven't is because she's been on edge lately herself. And while I understand her problems, there's no reason to take it out on others.. everything just seems to be a pissing contest with her lately.. and I feel if I try to confront her she would just be dismissive and get even more mad.. so I need to find a tactful way to do it without hurting anyone's feelings.

This is going to be a challenge.

[msisabitch]

June 6th, 2014

So my dear man friend has disappeared for the weekend so that means I'm on my own. Which is fine.. my symptoms are manageable.

Speaking of which.. Physical Symptoms:

Numbness on left side

Meticulous motor skills depreciated

Mental Symptoms:

Forgetfulness

Emotional Status:

Anger

Anxiety

  I've been numb for what seems like over a month now.. It's progressed and regressed back and forth.. obviously stress makes it worse, so I'm trying to keep my stress levels down.. I'm in this weird state of "is it getting better or worse?" I really don't know.

As for my forgetfulness, I'll just go on a tangent, and my attention will quickly move to another subject and all hope is then lost on what my initial thought was.

My emotional status could be because of some unkind words that were spoken to me today that I reflected on for several hours.. well, for the anger at least. As for my anxiety.. I've had what feels like a constant anxiety attack for the past 3 days with a tightness in my chest on and off each before that for the past week.. it's torture, but I'm managing.

I have a hard time getting to sleep for some reason.. it could be stress or my crappy bed.. or some other physical problem. Either way I've actually managed to have some energy today, hence my writing this.

More to come as it comes to me..

[smoestoe]

Today’s mental health reminder: a relapse, a sudden series of attacks, a string of awful days, (or whatever your step back may be) does not decrease your value. Take your time, do some self care, reflect on the progress that you have made. You are strong; one step back is nothing when you look at the journey you have already made.

[msisabitch]

Welp, here goes nothing

Nevermind the unforgiving chin fat from laying down

Hi there! My name is Amy and I live with  MS. This is my blog, appropriately named "Multiple Sclerosis is a Bitch" or "MS is a Bitch" for short.

This blog is being made as a means of keeping record of my trials and tribulations, up hills and down falls of dealing with my relapses, remissions, treatments and ultimately my diagnosis.

 Now I'm sure I've already confused you. "Diagnosis? You said you have it!" 

Well, yes, I do have it. But it has not been medically, professionally diagnosed.

Now before you go thinking I'm a hypochondriac, let me tell you a thing.

This woman right here is the strongest woman I've known. Her name is Joan Thompson, and she's my grandmother.. or better yet, my Nana.

For as long as I know, my Nana has always had trouble walking, standing, just about anything, to be honest. Being the young silly girl I was, I thought this was due to old age. I was sadly quite wrong.

My grandmother, you see, had been suffering from Multiple Sclerosis for a very long time. I hardly knew a time where she could walk with little to no help, honestly. Despite this, however, she did live a full, long life up until a year ago, when she finally passed from cancer. It was actually when I last visited her that I decided to secretly get my first tattoo.. of an MS ribbon.

While my grandmother was an amazing, talented, strong-willed woman, this isn't her blog however. She is my inspiration, and my hope and guidance even from beyond the grave, but this is about my story.

I've always had a problematic body... 2 eye infections, three ear infections, one dog bite infection, torn eardrum, blindness in one eye... jeez I was a mess.

All of that seemed like normal "kids being stupid and careless" kind of stuff up until I was 12 years old. I started noticing numbness all over my body, and I had trouble gripping even the lightest of objects.. It was then that my parents decided to do some research into it.

A spinal tap and couple other tests later, my parents sat me and down explained that they think I have MS.

I was twelve years old, the worse thing to happen to me at the time was my period. I had no idea what MS was or what that meant to my overall health. I just said "Oh. Okay."

To make a very longer story somewhat shorter, I am now 20 going on 21 in a month and have had relapsing-remitting MS for at least 8 years. Over the years I've dealt with numb limbs, loss of motor skills, emotional stirs and mental lapses of judgement.

This blog is being created for many reasons..

1. As a record-keeper. I can't keep writing down stuff about my MS in random notebooks and statuses on Facebook in hopes of archiving it. I'm on Tumblr on a consistent enough basis to keep track of it. and Tumblr is surprisingly good for this sort of thing.

2. As a personal diary. I will write posts about the physical and mental complications that I go through, but I will page break for my more personal and inner-most thoughts and emotions. I like looking into the psychology of things, and I'm sure others are as well. Not to mention I need an outlet for my frustrations and this would do a good job of tracking my emotional status.

3. To inform. I want people who don't live with this type of disease to have a means of learning what it's like. Of course, those who are able-bodied will never be able to empathize with what I deal with on a day-to-day basis, but they can at least see the inner workings without having to ask questions or bothering others. Not to mention it's a good helpful guide for those who know people with MS.

4. To connect. When my Nana passed my first concern was "Who do I confide in with my problems?" No one else in my family has this disease. I'm the only one. I have no one to complain to about it that would understand exactly how I feel. I'm sure I'm not alone. I wanted to create this as a means of bringing a small community of people together. To give them someone else to relate to. Much like I hope to have myself.

So, without much else to say...

Hello! My name is Amy and I live with MS. Here's my shitty blog that will show you the inner most workings and thoughts of a girl who is currently working on treatment. :) 

  Thanks for sticking around for the entire read, and I hope you stay and follow along this journey with me.