Chronicles of Life with Multiple Sclerosis
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.
I really need help.
Nothing has been more debilitating than my recent overload - of sensory overload.
I have major troubles with sensory integration.
I can’t go anywhere without it destroying me.
I can’t do anything without it destroying me.
I’ve always had a sensory integration issue, but right now it’s out of control.
When I can no longer isolate each sense from the rest, that’s when things get bad.
My nervous system starts to shut down.
My heart rate soars into the upper hundreds without POTS
My throat closes up a little and my breathing isnt steady
I get a severe headache at the base of my skull
Everything starts to feel like a dagger to my brain
it differs from my panic attacks, because it’s not even comparable.
it resembles that of a seizure sometimes, my muscles will spasm during these attacks sometimes
it’s usually triggered by chaotic layers of sounds over sounds
fast motion in my range of sight
and even sometimes it’s strong taste or being startled by touch
I can’t do schoolwork or have my free time I can’t go in public I can’t do anything
I’m seeing a CBT/psych on friday, but if you know anything at all that can help, if you can offer any advice, please message me
I’m struggling so much
ok. I’m medicated now & ready for bed.. brain barely works to begin with much less when trying to force it shut down. Anyway, your post hit so close to home. you need to stop trying to not experience what you’re experiencing.
Both in panic attacks (as you know) and when having a neurological incident, trying to analyze whats happening, control whats happening, etc, will just make it worse. if you can’t go in public at this point? don’t. Do what you need to do to make yourself as comfortable as possible and get yourself through these moments. Its so much harder than typing it I know.. I’ve been there.. but don’t worry about what other will think if you don’t finish your homework, don’t answer emails, calls, don’t do xyz. Right now just get yourself through the moment. You can, and will, deal with the rest when you can.. cut yourself some slack too because your body itself is telling you that you need to focus on it. Like if your body could bitch slap your brain?
Then you def. need to see both a psych and a doctor. you should find one that you feel most comfortable with.. cause if you’re not comfortable and don’t feel like you’re being heard, whatever is going on with your body and your mind will likely be overlooked, or missunderstood, or you’ll feel that way in which case its useless.
blah I hope you’re doing ok-ish. I am not an expert in anything other than being crankie and whiny and chronically ill so keep that in mind too.. but i’ve felt the way you describe and wanted to give my 2 cents and support-like thoughts.
Send me a message if you want, I’m not the quickest to respond to things (slow like a tortoise hah) but I’ll do my best. I know lots of people on tumblr & online can understand and are extra supportive (they’ve inspired me) so hopefully others will respond too.
not unusual but I’m sitting here with everything shut off, set every alarm i’ve got, but tumblr is open while I stare at google maps forever. I’m so damn worried the alarm won’t wake me up in time to get my brain functioning enough so I can drive to doc appointment tomorrow without panic / accident/ and arrive on time. This has been ridiculously plaguing me since this afternoon. If I could just be normal and sleep and get up and leave early and not panic about it like I might never have a chance to see a doctor about these issues ever again if I don’t get there in time to do all their check in and paper whatever.. then I’d prob be ok.. but well.. I can’t sleep and I’ve learned throughout all this.. missing a doc appointment is pretty much like the aforementioned nightmarefantasy. heh. Crap. SLEEP ME SLEEP DAMNIT!
and find out for sure if I can add a new name to my list of auto immune disorders. Have a bad history with Rheumatologists’ miss diagnosing me with lupus, blowing me off, telling me things are all in my head or maybe I’m just fat. So I’m anxious about it. My neuro told me he trusts this guy and I like my neuro so fingers crossed. He’s pretty certain thats whats adding to my pain but he’s not a rheumatologist.
Been too tired to post much more than a line or two response to things. but this is the second new specialist after the Sleep specialist I started seeing in the last month or so. I’ll have to post more about that but what she told me was ‘hey, so you barely have sleep apnea and I think your first Neurologist was use a jerk and didn’t think you had symptoms of MS (other than blindness hah) and sent you to do sleep studies to ignore you.” That, oddly, was not shocking at all. Its why I left old neuro for my current neuro who is at an MS clinic. Specialists are important whit this sorta thing. #lifelesson heh. If only I had been strong enough to leave sooner.
The neuro change ended up ok for the most part and the sleep specialist seems really good and knowledgable about MS (understanding co-existing issues holy shitballs! ). Have a GP I like.. I’m wondering if I’m getting too lucky on the doctor front..
Ignoring that potential luck issue, Here’s hoping tomorrow goes in the same sort of direction. Mostly any direction that doesn’t stress me so much I can’t drive myself home from the depths of downtown boston medical area at what will be close to rush hour. heh.
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.
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?”
I really don’t. Like I mean, it seems pretty standard that because the pain from a herniated disc is just that debilitating, people WITH herniated discs get treated with stronger pain medication than just what is around their house. I have NEVER read of someone GETTING that diagnosis and NOT being prescribed narcotic painkillers. Now I know it must happen, I’m not denying that these things occur other times too, but I follow tons of blogs, look up tons of personal accounts of things online to help me figure things out and deal with what I’m going through, and it’s seemingly pretty rare for someone to get diagnosed with an injury of this magnitude and NOT get a narcotic script, because it’s just that debilitating. It makes sense… if there is anything that narcotic painkillers EXIST for it is situations like this. And then a person won’t be on them forever if treatment works out, because surgery is often looked at within the first months it seems for some people… nerve blocks and physical therapy are tried for some people, but if they fail, surgery is the next step, and given it’s successful, while it may not fix EVERYTHING, it will set someone back in the right direction and they won’t need narcotics painkillers forever, at least… that’s the idea, I think in most cases.
But then… with me the issue is that I’m not SUPPOSED to have a herniated disc… I was told by countless doctors who flat out REFUSED me an MRI for quite a while before I found one who would even take a LOOK that people my age just don’t HAVE disc issues, I’m must too young, they all had their own ideas on how my issues were my own fault none of which made sense.
And then when I DID find a doctor who would do an MRI and it showed I had a badly herniated disc at L5-S1, there was very little done for me, and a YEAR later… nothing. I HAVE nothing to take, but I can barely even take care of myself for the pain, there are NO plans for the future to do anything to help me. I mean, when we started, he didn’t give me anything when I was diagnosed. I did nerve blocks, and physical therapy. I did the three allowed during a 12 month period, and all my physical therapy. (I, in fact, still do my physical therapy on my own, despite it seemingly making things WORSE and not BETTER.) From there kind of nothing was done. And now he’s ordered blood work to see if I have a connective tissue/autoimmmune disorder, which I think is irrelevant, because I know I have another illness going on, but that’s not HIS issue, I go to him for my back, so I MIGHT have something like that, YES, but my back doesn’t CEASE to be an issue. He’s saying it might not be if I have something else going on, but I know my body, and I KNOW it is. I have the symptoms TO A T, and I have a herniated disc and I don’t think it’s a coincidence. And I was a competitive jump roper, which is very bizarre, and not commonly seen yet, for years when I was younger, which is why this happened. I remember more than a few times specifically when I had severe trauma to my lower back as a result, but then, it’s also just that the spine absorbs ALL of the shock… they say most back problems start in the feet, and I pounded my feet on hard tile floors for hours and hours a week for YEARS, so if the BACK gets all the crap for what the feet do, then I SHOULD have back problems. But my ortho instead of treating me is now trying to pawn me off on another doctor or bide his time until more nerve blocks can be done… I’m not stupid. Because I’m young… and he doesn’t want to risk treating me with narcotic painkillers, and he won’t even go NEAR the subject of surgery. The words “chronic pain” come out of HIS mouth more often than mine, because he has no intention of FIXING this injury, so he knows the pain won’t stop… because the source it going to remain there… it’s like you never put a cast on a badly broken leg, you’re gonna have some issues, except, broken bones WILL heal themselves… maybe not RIGHT, but they WILL do it. This won’t, it can’t. But when I ask about ANYTHING for pain, he’ll just say “WELL, you really can’t treat chronic pain with narcotics…” which one, is a lie… people do it all the time. They don’t have to continue to treat it, but I was given short scripts to deal with migraines before, and my diagnosis of “chronic migraine” has chronic in the name. And I mean, I’m not a drug addict, or anything, test me and see. And really, even logic alone leans towards the fact that it’s better to treat chronic pain with narcotics than not to treat chronic pain, but I’ve read compelling articles and research that say that treating chronic pain with narcotics isn’t the horror story people believe it is. And then since it’s going to be chronic because of your CHOICE not to even lay out the surgical option on the table for me… shouldn’t I get some relief? Or the surgery?
But then… that’s the thing… I’m young so I’m unreliable, a hooligan, impulsive, irresponsible, likely to abuse my medication if I’m given anything abusable, right? That’s how I’m treated. And then I feel like the surgical option also isn’t laid out because I’m young and because of the risks involved, but more for them legally than for me… I feel like they feel as though because I’m young if something went wrong they are more likely to face legal repercussions, than if I was older. It doesn’t even make THAT much sense to me, but for some reason, the only one who really thought it was maybe the right option for me was the doctor performing my nerve blocks, which is weird, because he’s ACTUALLY getting something from me NOT getting surgery, because I can only assume (or hope) that giving epidural nerve blocks was not just a hobby of his or something, it was something he got paid for, his JOB, but he was honest and said that sometimes they just don’t do the trick and that the surgical path is the right one for a lot of people. (Heck , that doc even trusted me enough to give me percocet instead of lortab after my procedures, because lortab makes me puke roughly 2 out of every 3 times I take it when I’ve had it in the past where percocet I don’t think has ever made me puke, even when I haven’t felt like eating and have taken it anyway. He was an absolute SAINT. He should get some kind of award.) So why can’t my doctor be that kind of person who puts all my options out there and let’s me decide how to live MY life? Because I’m the one who has to deal with it for the rest of my life, not him. Even if my doctor KILLED me, most doctors kill a few people in their careers, but most of them learn to distant themselves from it, so they probably wouldn’t even have to live with THAT the rest of their lives… they’d forget me completely. But I have to live with my body and it’s ailments.
The thing is, if I was older, I feel like I could color half my problems with doctors non-existent.
My mom for example, while she has a broken tailbone, was talking on the phone today with either my grandmother or my father, about how she’s not really in any pain, she even TOLD the doctor she is seeing that, but he’s basically THROWING painkillers at her, he has her on work leave, he saw her the day it happened, a week after, and he’s either calling here to check-in Wednesday or has to go back, or something, but she’ll see him again within the next couple of weeks for sure. And I get it’s a more minor faster healing injury, but I mean, he’s going all out, and taking the risks for her to prescribe her different painkillers repeatedly when she even says she DOESN’T need them, which my mom feels weird about, but it goes on HIS record. And then all the looking after and all. I’m fairly sure if it had been been me, the attitude, or even the instructions for me would have been something to the effect of “walk it off, kiddo”, and then I would have been ignored for six weeks, gone back for a follow up, things would have been however they were, and then they would release me because there would be nothing further they could do anyway.
And then my dad is constantly doing things to himself, injuring this or that… he’s had more surgeries than I can count, and my mom has had a couple too. Does anyone ever talk about surgery with me, when it should be talked about because it’s the only logical course of treatment? Uh uh. No. Not my back. Nothing surgical was even laid out at my ENT appointment, despite that several things that might necessitate surgery were brought up, and doctors tend to lay out what MIGHT be a course of treatment at a first appointment from my experience, even if it’s not the first thing they’ll go to. I mean, that’s a subject doctors won’t touch around me, but I mean, with my dad, a lot of his surgeries were things that possibly COULD have been left, and people COULD have tried to treat medically, some of them they could have even succeeded with possibly, but surgery was faster, so you know. I don’t know… maybe doctors just think I have all the fucking time in the world since I don’t work a full time job, I don’t know… but that doesn’t mean I want my full time job to be suffering…
And then the first impression so many doctors have of me is to think I’m a drug seeker, a low life, or that I did this to myself, because kids this young aren’t sick or hurt. A common thing is that they like to think that me being fat and lazy caused all this instead of the other way around, because when this started, I was pretty thin, and active, and there was no reason I suddenly should have had all the symptoms I did… and who would have KNOWN that being in MASSIVE amounts of pain, or being on ridiculous amounts of drugs with the side effect of weight gain, or being unable to move for how much pain you’re in or how sick you are the majority of the time would cause someone to gain weight? I know it’s just unfathomable how that works. -eye roll- And then doctors like to think I’m a drug seeker, because I don’t have the “luck” of having a diagnosis yet (i hate to call it that, luck, because it can come off the wrong way to people, like saying “hey, I WANT to have an illness!”… but I know I’m sick, I just don’t know what it is yet, so all I want is to know what it is, and a diagnosis brings a lot of opportunities and takes away a lot of pressure and bullshit, so in a way, luck is what it can be to someone who has been so sick for so long but who has remained undiagnosed.) and then classic drug seekers complain of a lot of the same vague symptoms I do. I’ve had the “luck” (that is actually said sarcastically) of developing some other symptoms as of late, that aren’t so vague, or commonly complained of I don’t think, and then my herniated disc WAS confirmed, so if pain is a chief complaint, I have at least one reason to be in a very good deal of it that is confirmed so they should have no reason to believe I’m drug seeking, but still because of my age, so many doctors have the balls to think I guess am playing up my pain (when I downplay it so I DON’T look like a drug seeker) or I’m lying about some of my symptoms or I’m not as sick as I let on JUST so I can get drugs STILL, because of COURSE everyone my age would just LOVE to sit around and get shit-faced, right, because it’s not like teenagers EVER just want RELIEF from actual physical agony, or anything, because they can’t FEEL things. They don’t have souls. Or other things they could do other than get shit-faced, so ALL they want is these drugs so they can get high. Oh, no, maybe they want them so they could SELL them too, I forgot… teenagers like money. >.> I mean, GOD. We’re not a different species, or some type of demon, we’re humans, capable of getting sick/injured too, but for some reason, NO doctor ever buys it.
This is just a really long-winded, rambly rant, I know, but I can’t help but think about this a lot. I can’t help but think if I had waited, if I got sick ten years from now instead of five years AGO, then I would be doing so much better now. I would maybe be fine, maybe not as in cured, but as in functioning, because I wouldn’t have been so much ignored in the beginning, and no one would have dared accuse ME of causing this, or treat me like a drug seeker without giving me a chance. And maybe I’m wrong. And 28 is still young, so maybe with my thought process I’m not going old ENOUGH… I mean, I don’t think disc issues or these types of things are all that common in 28 year olds either, so maybe I’d still be treated like I was a demon, who knows? But I feel like a lot of it is because in the eyes of society, I’m not REALLY an adult, even though I legally qualify as one… I’m still a child. One of the nurse practitioners who treats me repeatedly forgets my age and thinks I’m still in high school. So to them I look like a kid, and to a lot of better off adults in today’s world, the kids in society today are something to be afraid of, and to be incredibly wary about. And at 28 at least they’d probably be able to tell I’m not in high school, and I’d have done something with my life maybe and so they would treat me more respectfully and less like a threat.