Chronicles of Life with Multiple Sclerosis
went to my rheumatologist appointment this afternoon to get my test results back:
all my fucking pain has a completely unknown reason.
it may be fribromyalgia, it may be coming from my MS, it may all be in my fucking messed up head.
my rheum doctor says that the gabashit that isn’t working is the right treatment and he’s going to have a chat with my neuro to discuss possibly raising it.
but this is just fucking awesome! that i get to fucking suffer in all this hellish pain every fucking day and not have anything to do for it and have no known reason for why i’m having it! doesn’t that just sound fucking AWESOME?!
i want to die so fucking badly. people don’t understand how serious i am about how badly i want to kill myself. i keep telling people how fucking depressed i am and that i need support and that i need people in my life, and no one is taking me seriously.
HOW ABOUT I KILL MYSELF! WILL YOU TAKE ME SERIOUSLY THEN?! WILL YOU THEN FINALLY REALIZE HOW FUCKING DEPRESSED I AM AND HOW BADLY I FUCKING NEEDED YOU!?
no one would even fucking care after a couple weeks. i’ll become just as forgotten as i am now.
I absolutely understand that feeling.. the last few months have me silent for the most part, even here on tumblr. You get a lot of credit for expressing yourself to others. I know the feeling you’re describing, but you can’t go there. People that aren’t dealing with it can’t understand the pain and It really is the most frustrating feeling in the world. Its that combination of trying to put yourself out there while knowing inside that you can’t explain the pain you feel both inside and out and somewhere knowing that no one can say anything that can truly make you feel better. that is the worst part. Even with the MS, as you know, the symptoms don’t make sense, they aren’t always things that people can see or notice or even try to. People with disability placards yell at each other in the parking lot because one person isn’t as disabled looking as someone else and blah blah. We suffer, everyone judges, things just fucking suck. they suck a whole damn lot. The thing is? you can’t give up and you are not forgotten. you are NOT forgotten. You deserve better, we all do, and fuck I wish I could do or say something worthwhile; that would give you some rest or peace for just a little while. Unfortunately it never works that way and too many of us are suffering in silence or pseudo silence behind the computer screen. Things will change.. not necessarily for better.. just change.. different things = different ways of coping …so hang on cause you might be able to deal with things better in the future. Its all an up and down roller coaster that makes you want to vomit. With chronic illness its a ride in a theme park we didn’t pay to get into and can’t get out of.. but you’re here now.. and even if you lost your place in line at the moment.. stay here. Come hang by the concession stand with me and the rest of the folks around here till you can figure out what to do next. Its not the most fun but you’re not alone. (hope that heavy handed metaphor made some sense.. heh)
I tell myself daily that I’ll get back to writing here more regularly. It just hasn’t happened. Its been a god awful frew months (since the mid summer at least) and I took a bad fall before I was supposed to go home for christmas and never made the trip. It was loaded with drama, more on the familial end than mine, but stress inducing all around. Still dealing with the effects and the flare up that has been going on for months now and won’t die even with solu-medrol infusions.
Then, a couple days ago, I seem to have acquired a bad cold too. Seems everyone I know is sick these days. Tried to quarantine myself to my apartment but I got it anyway (I’m calling it the #twitterplague) This trend of life feeling as though its reaching critical mass is appropriate for the end of the year. A year that I had high hopes at first, that quickly scoffed at those ideas.
I know its mostly my lacking the strength I should have to move through these months and life events that aren’t even necessarily my own… but all the bootstrapping, help asking, proactive measures I’ve been trying are not doing much to pull me up. I know I will do it myself somehow. I have to. I always have. At the same time, I know that part of me needs to allow myself a space (such as this fantastic internet space) to say I am hanging on by a thread right now. I’m not ok. Haven’t been for a while.
MS issues growing daily in awful ways that I know I complain about lots but I can’t quite express how they actually impact my physical life and emotional wellbeing. Or maybe I don’t want to, cause that feels counter productive. Don’t know. Life events around me, positive and negative, are overwhelming as well. Add a cold to that and the financial dire straights i’ve been working really hard to get myself out of, in even the smallest way possible. I believe I’ve reached a level of ‘negative spoons” that might take a year or more to break even. heh.
At the same time, people are moving to the point of frustration and annoyance with my new reality (3 years and its not so new there is sympathy… and empathy only goes so far… and expectations never changed… so I’m disappointing people more and more these days). Its hard to swallow but also shows me where I shouldn’t focus my energy. that knowledge is helpful but still not without its emotional impact.
anyway, there is more to all this (heh though mostly more than you’re interested in knowing), new diagnosis, new financial crazy, new things I’m working on accepting and learning from. I’d say thats a new years resolution post.. but I think this is all beyond that sort of list making.. I’ll call it my hopes and goals and attempts at cutting myself some slack while kicking myself in the ass all at the same time. A new years resolution has never been effective so lets stick with the aforementioned list.
Anyway, More on that later. Thanks for not unsubscribing.
and MOST importantly, hang in there… everyone…everyone that reads this, or stumbles on this, or just everyone out there thats dealing with crap right now. Its a rough road for all these days.. chronically ill or not.
I suggest we all invest in some knee and elbow pads before we grab on to a forward moving vehichle and hope we end up somewhere better- whatever that is for all of us.
In slight addition to the aforementioned, I go through phases of completely longing for human affection and then switching to total misanthropist mode. Now, i’m in my ‘longing for affection’ mode. Maybe it’s because i feel so completely empty inside i just need something to bring me back up to earth, and i feel like maybe if i had someone who was genuinely interested in me as a person and not my fucking symptoms/asthetics/limitations/failures/freakish behaviour as a result of the previous, then maybe i might actually have a reason to feel almost human like again. I miss conversations that would end in the early hours, I miss that connection, I miss just feeling wanted and needed and even special? I miss it. I’ll never get that back because I have declined in more ways than one, physically, literally, metaphorically, mentally etc…everything you name it and i have well and truly declined in it. So i’ll never feel comfortable in that scenario again because of how anxious and paranoid and depressed and ugly i have become because of my ever present tortorous pain levels and distressing symptoms hacking away at me like a chainsaw. Yet still i long for such affection even though I wouldn’t know what to do with it, probably push it away lest I let down my guard and become exposed and vulnerable and that terrifies me because i’m not ready for that. AH contradicting life and times of myself.
I want to write a novel, as well. I feel like everything in my head, needs it’s own book. I can churn out sentences like my body churns out it’s undigested food. In seconds. meh.
The problem with a history of depression and anxiety is that you can never know if you’re “just having one of those weeks” or if you’re sliding back down into those places you swore you’d never go again.
and your doctors use that as reason to ignore you and your new symptoms for years.. till your lucky or unlucky enough to get a serious chronic illness diagnosis..
then you can say SEE i’m depressed anxious AND I have MS!
it doesn’t feel as good as you thought it would heh.
then you realize that its not “just” anything.. even if it constrained to one of those weeks alone.
I’m trying to raise money to buy a therapy lamp for my seasonal affective disorder. I’m struggling with it already and winter hasn’t hit yet. I don’t know if I can handle another majorly depressed winter. If you could donate or, at the very least, reblog this I would appreciate it more than anything. I’ve put a donation button in my side bar.
If you have any questions for me or about S.A.D come ask me.
Help this person out! and do some reading about S.A.D. and light therapy.
or have any affordable recommendations? or thoughts in general about effective equipment for home use? any advices would be appreciated!!
Story of my life off the internet..
this is where I go to get it out so I can keep smiling. Thanks internet for taking it and not throwing it back in my face (too often ;-) )
I hate being me. I hate being sick, I hate being in pain. I hate not being strong enough. Being weak. Needing help. I hate that to everyone around me this weakness always looks like some failure I choose. I hate that it couldn’t be further from the truth.
I hate that I live in a household where I am not the only person who is disabled, but because of the differences in our circumstances, I’ve watched all my life while allowances have been made for my sister and while she has been helped without complaint, as it SHOULD BE… but then through an unfortunate series of circumstances no one understands I ended up needing help too… Not even nearly as MUCH, but no one cares to offer it without an indenting comment or insult to go with it. I feel like it makes it that much harder to get by… because I know if I had the RIGHT disability, if I was born that way, or if I was someone else and the circumstances were right they would give me what I need instead of being able to believe my parents are just insensitive selfish pricks overall, I have to live knowing it’s just me.
And I hate myself. I don’t know how to do this anymore.
I just want to sleep forever. Never wake up. Or die. What’s the point? It can’t be that bad. How could it be any worse than this…
hugs. saying I understand is sorta useless so I will just say “sucks :( why is life such a failboat sometimes?”