Chronically Something
Chronicles of Life with Multiple Sclerosis
Dear Control Freak
One of the hardest things to learn to live with when diagnosed with a chronic illness is the unavoidable need to rely on others. Friends, family, doctors, insurance companies, you are inevitably at the whim of others.
In many ways it can be positive. You learn to trust, to accept, and to communicate (that last one has yet to happen in my case). When it comes to doctors and insurance companies you learn how to be assertive, even when you’re in pain. You learn to trust your instincts despite being told you don’t know what you’re talking about. You learn to search for what you need and keep trying to find a way even though it seems impossible to find.
This is all stuff you’ve heard. Its everything the support material reminds you, your friends say to empower you, therapists tell you, your doctor says while smiling and patting you on the back on the way out of the office. The negative is a positive! yah! Its true, in some way, but there’s a lot they don’t tell you, probably because they don’t know or can’t understand.
Feeling powerless in a situation is something every human being goes through at one time or another. Some more often than others. When it becomes the unavoidable background music to your life, however, its a whole different story. Its not to say that we don’t fight, don’t take control in as many ways we can, cause we do. It is that no matter what control has been lost and dealing with that is a forever struggle that lives inside you (literally).
It begins with your body. You take your medication, you eat well, you exercise, but despite the positive impact these actions can have, you are still at the whim of the illness. Your loved ones love you, and the initial impact of a diagnosis can be as jarring and painful for them as it is for you. There is a difference there though. You continue down that path dictated by your illness and, though they are there for you, they are still in control of providing the support you are asking for, tolerating the depression and anger that comes and goes with every incident, and able to step away when they can’t deal with it. Though it should be noted that life is surely messing with their control as well and we can’t ignore that even a little.There are other life circumstances that chronic illness places you in. Financial issues, housing issues, work potential, you are at the whim of your current capabilities which, for the most part, are changing CONSTANTLY. More over, you are no longer in control of assessing your own capabilities. You are judged by strangers, told what you should and shouldn’t be able to do, and support is issued accordingly.
If you rely on the kindness of others, those who through no blood obligation assist you with the aforementioned life circumstance, you are still required to adjust, be grateful, and react as such. These are the toughest situations in my opinion, perhaps because I am dealing with these so directly at the moment. LIfe moves forward and things change for those who are love you and are helping you, at the same time changeing their ability to do so. In those situations, when things change and people can’t sustain things that you have been relying on or grown accustom to, its painful for both parties. I have found, of late, that what is hardest about these situations is the inability to react. You are powerless to change things, powerless to hold back the feelings these out of your control changes cause, and then powerless to let yourself feel them save for hurting those who have been so vital to your survival thus far. Getting out of your head and leaving behind your reactions and emotions, because they are irrelevant and often detrimental to the reality of the situation, is difficult when you are busy grasping for any scrap of control you can find out there.
In the end, accepting that you are powerless is a step you are nicely told you have to take, despite also being told to fight your hardest for that control. I feel, sometimes, life living with a chronic illness for a while creates two versions of you. There is the you that experiences and the you that, though in a much less negative way than it is generally used, has to learn to manipulate yourself, your emotions, and your situations. You learn how to talk to your doctor in a way that gets you what you need, you try to create a private space where you can feel and not tire out those who try so hard to be there for you. You learn to nod and smile and limit your confessions as much as you can, you learn to take in information without processing it (trying to save it for later if you can remember heh) in order to avoid reaching that very near emotional edge you generally live on.
This all sounds so negative, but its just the reality of living this way. Everyone has to do it, even without a chronic illness. Life’s a bitch as they say. But for those of us with that Chronic Illness label it is a looming reality every single moment of every single day for the rest of your life. Knowing you’re never going to get “better” you’re just going to stagnate or progress. Its harder some days than others. I sometimes wish that there were pamphlets for this sorta thing. A letter to yourself explaining the need for these coping mechanisms, ones you would otherwise assess negatively, that is given to you on the day of diagnosis. Doesn’t have to be as long as this rant.
Something Short and Sweet I think :
Dear control freak,
Control will be a mirage you reach for just like it is for everyone else (so stop thinking you’re the only one), but know that your mirage will look a lot smaller, shorter, and much harder to pretend is real than those of lots of other people you know. This is the reality of your new lifestyle. Learn to love it, live with it, or at least pretend till you can occasionally *think* at least that you are ok. Best Of Luck - Your illness
And they didn’t even give me any candy :(
I know I’m debbie downer a lot, and whine constantly on twitter, but I’m alone in my apt and need to voice this (one more time before I do either of the things I mention at the end of this). I just went out to my car to get the heat humidifier I keep by Zoya’s terrarium in the winter, since its getting cold and her substrate dries out so quick. Anyway, I’ve been in a tone of pain the last few days so, despite my general attempts not to out of stupid pride, I’ve been using my cane even inside my house. So I was using it just now when I went outside where landlord & fam. were talking to some teenage trick or treaters (their youngest son is a senor in HS, I believe, so they were prob his friends). One of them asked who I was supposed to be and where the rest of my costume was because I was hobbling with the cane. My landlord, knowing my situation, tried to butt in and stop them but convo ensued anyway. I smiled and kept going, heard them discussing me on way to and back from my car, then got stared at as I passed on my way in. I know they felt bad but I feel worse. I am wishing I was tougher cause I’d pretty much like to drink myself into a stupor or cry myself to sleep…none of which are good ways to respond. I need to brush it off. trying to brush it off.. if I vomit it into the universe a few times it might go away right?
I know they meant no harm but this was the most blatant face to face with this sort of thing, at a time when I was already irrationally depressed over a stupid holiday I shouldn’t care about but still made me wish I was ‘normal’, so its really getting to me. think I should back away from the internet but then the silence will smoosh me.. and not into a muffin like I want to smooth all the snuggly animals and cute things/ppl I see.
I need to remember that I could be crying about having no power, no life support, no home to go back to, a flood that destroyed everything.. cause with that happening around me I need to bitch slap some perspective into my brain.
So I’m on a bit of a “wordiness hiatus” due to some serious “last week before infusion” fatigue. I’m in shit load of pain and so exhausted. I’m sure you all know all about it prob more than I do. Anyway, now that I’m stopping tysabri I’m not sure how this will work out for me. I will likely not be on any meds for at least a month or 2 while I get the gazillion tests required for Gylenia and wait for insurance to approve the medication. The fatigue is usually helped by the next infusion but now I’m wondering if maybe I’ll just have to deal? dunno. Fingers crossed and all that.
SO, I just thought I’d stop in and say hi and share this sculpture I’ve been working on (semi related to the project I’ve been working on but not directly… ) The piece is about 1/3 of the way to some sort of completion but its a big one and is Resin based so it smells to all hell.. have to do it outside when semi warm so as to not asphyxiate myself and/or my landlord & fam. Anyway, I’ll send some more pics as I just added a polishing layer to the top and am working on a mold for the second go (cause you’re so interested right? right. ) I’d share the main project but I’d like to wait till I have something semi complete to share. So this here is a side project, half head with personal MRI prints, cast in Polyester Resin. Its not whole and is cracked, but thats sorta the point.
so I guess this was pretty wordy though I said I was on a hiatus, so uh.. sorry I never shut up once I start :o
Obsessing about comments my neurologist made: aka am I a society sucker, drama queen, anxious depressed lazy ass?
So I can’t stop obsessing about my Neurology appointment Monday. My doctor said some things I can’t stop thinking about no matter how much I talk myself down from the proverbial ledge. I think he was trying to give me a kick in the ass of motivation, or something tuff love-ish, without knowing the whole situation since he hasn’t been my neurologist from the beginning. But I had an exam Monday after having a shitty week of the pre-tysabri infusion fatigue/pain/etc, messing up the dates to my appointments for the whole week, and falling on my ass repeatedly all month. Since my exam Monday, post infusion and infusion recovery days, came back pretty normal (BOOYAH! I’m proud of that) he referred to some of the issues I brought up at my last infusion and throughout the month and kept saying things like I should be working and living my life and “You’re not disabled!” claiming SSI is calling myself disabled and there is a psychological impact to that (heh like he has to tell me that after the years of psychology and therapy). That its not about the funds which he’s “not talking about” but that I am labeling myself that and I shouldn’t. which I also agree with but this makes me so defensive since I was so hesitant to apply for any services when all this happened for just this reason… until homelessness was on the table and well.. yeah.
I had also, previously, brought up the fact that my psychiatrist seems to be prescribing me way too many meds and that I don’t want to take them and don’t think its good for me and that I’m looking for a new one. So he listed everything and continued on his rant about how the psych meds were prob causing me more problems than MS right now. This is probably true but I’m not taking everything prescribed… and I’m not sure he got that or cared for it if he did. Doctors don’t seem to like you regulating your medication yourself even if they think your other doctor is prescribing too much.
What I was trying to explain is that I just fill the prescriptions since I have been without insurance (was during my diagnosis period and months after) and lost everything paying for hospitals and medication out of pocket for months (which I now know I should have defaulted on but damn me for doing the right thing heh). I spent all savings and loan money for school paying to be seen when I was blind in one eye and falling all over the place. So now I’m broke, massively in debt, and my symptoms have progressed till I started the tysabri when things started to stay stable. So yeah, I hoard meds. I do. I keep them so that if I don’t have insurance one day I don’t have to stop medication cold turkey that could very likely cause me to go completely nuts and can’t afford cause that crap is a gazillion dollars.
So he continues with the fact that my fatigue is depression related since so much is going on (which I can’t deny is probably related. This shit has fucked up my life. I can’t not be depressed about it. It sucks but uh… my inability to move my arms and legs in the morning is not just depression ). He tells me I have to get it together and push myself and get my anxiety and depression under control. It wasn’t said in a mean way really and I know he was trying to be all “GO! YOU CAN DO IT!” but he still doesn’t know me well enough and that sorta thing makes me crazy.
I mean, shit my bp going to 80/41 during my infusion wasn’t my anxiety and I’m not sitting around saying I’m gonna live off SSI forever… but those are the sorts of things that I use to not take medication at all or never apply for services because I believe I can handle it or should or don’t deserve help… or people will assume I am entitled or dramatic or giving in. When my friends (who are amazing) came to me to tell me they were fundraising to help me pay bills before I had insurance they approached me with “Ok. Don’t be mad”. Heh. Accepting help is not my forte and once I do it I feel horrible about it forever after.
SO. now Im obsessing, I can’t talk myself out of thinking he assumes I’m making shit up for meds (he also told me to stop taking my adderal completely which isn’t working out so well) being lazy and over dramatic, giving in to depression and anxiety, and trying to take advantage of the system. I know this wasn’t his intention, and he doesn’t quite know all the details, but I’ve been struggling with where to go from here now that I’m able to pay for food and sustain life and dealing with the reality of giving up on my life goals and the path I’ve been working towards for years and years, and figuring out what to do, within my means which are different now. Blah. If you actually read all of this I’m sorry. I sound like a whinny ass bitch. Which I am I guess. But if there is one thing I agree with that my doctor said, its that Anxiety really screws you up.
whiiiiiiiiiiine
My head hurts!
(you know.. on top of all the “usual” crazy unexplainable MS malfunctioning my bodies been doing lately).
Dear Control Freak
One of the hardest things to learn to live with when diagnosed with a chronic illness is the unavoidable need to rely on others. Friends, family, doctors, insurance companies, you are inevitably at the whim of others.
In many ways it can be positive. You learn to trust, to accept, and to communicate (that last one has yet to happen in my case). When it comes to doctors and insurance companies you learn how to be assertive, even when you’re in pain. You learn to trust your instincts despite being told you don’t know what you’re talking about. You learn to search for what you need and keep trying to find a way even though it seems impossible to find.
This is all stuff you’ve heard. Its everything the support material reminds you, your friends say to empower you, therapists tell you, your doctor says while smiling and patting you on the back on the way out of the office. The negative is a positive! yah! Its true, in some way, but there’s a lot they don’t tell you, probably because they don’t know or can’t understand.
Feeling powerless in a situation is something every human being goes through at one time or another. Some more often than others. When it becomes the unavoidable background music to your life, however, its a whole different story. Its not to say that we don’t fight, don’t take control in as many ways we can, cause we do. It is that no matter what control has been lost and dealing with that is a forever struggle that lives inside you (literally).
It begins with your body. You take your medication, you eat well, you exercise, but despite the positive impact these actions can have, you are still at the whim of the illness. Your loved ones love you, and the initial impact of a diagnosis can be as jarring and painful for them as it is for you. There is a difference there though. You continue down that path dictated by your illness and, though they are there for you, they are still in control of providing the support you are asking for, tolerating the depression and anger that comes and goes with every incident, and able to step away when they can’t deal with it. Though it should be noted that life is surely messing with their control as well and we can’t ignore that even a little.
There are other life circumstances that chronic illness places you in. Financial issues, housing issues, work potential, you are at the whim of your current capabilities which, for the most part, are changing CONSTANTLY. More over, you are no longer in control of assessing your own capabilities. You are judged by strangers, told what you should and shouldn’t be able to do, and support is issued accordingly.
If you rely on the kindness of others, those who through no blood obligation assist you with the aforementioned life circumstance, you are still required to adjust, be grateful, and react as such. These are the toughest situations in my opinion, perhaps because I am dealing with these so directly at the moment. LIfe moves forward and things change for those who are love you and are helping you, at the same time changeing their ability to do so. In those situations, when things change and people can’t sustain things that you have been relying on or grown accustom to, its painful for both parties. I have found, of late, that what is hardest about these situations is the inability to react. You are powerless to change things, powerless to hold back the feelings these out of your control changes cause, and then powerless to let yourself feel them save for hurting those who have been so vital to your survival thus far. Getting out of your head and leaving behind your reactions and emotions, because they are irrelevant and often detrimental to the reality of the situation, is difficult when you are busy grasping for any scrap of control you can find out there.
In the end, accepting that you are powerless is a step you are nicely told you have to take, despite also being told to fight your hardest for that control. I feel, sometimes, life living with a chronic illness for a while creates two versions of you. There is the you that experiences and the you that, though in a much less negative way than it is generally used, has to learn to manipulate yourself, your emotions, and your situations. You learn how to talk to your doctor in a way that gets you what you need, you try to create a private space where you can feel and not tire out those who try so hard to be there for you. You learn to nod and smile and limit your confessions as much as you can, you learn to take in information without processing it (trying to save it for later if you can remember heh) in order to avoid reaching that very near emotional edge you generally live on.
This all sounds so negative, but its just the reality of living this way. Everyone has to do it, even without a chronic illness. Life’s a bitch as they say. But for those of us with that Chronic Illness label it is a looming reality every single moment of every single day for the rest of your life. Knowing you’re never going to get “better” you’re just going to stagnate or progress. Its harder some days than others. I sometimes wish that there were pamphlets for this sorta thing. A letter to yourself explaining the need for these coping mechanisms, ones you would otherwise assess negatively, that is given to you on the day of diagnosis. Doesn’t have to be as long as this rant.
Something Short and Sweet I think :
Dear control freak,
Control will be a mirage you reach for just like it is for everyone else (so stop thinking you’re the only one), but know that your mirage will look a lot smaller, shorter, and much harder to pretend is real than those of lots of other people you know. This is the reality of your new lifestyle. Learn to love it, live with it, or at least pretend till you can occasionally *think* at least that you are ok. Best Of Luck - Your illness
About Me
Thoughts, ramblings, and unsolicited advice about life with Multiple Sclerosis / Chronic Illness, by me and other people on the internet.
Because sometimes it feels good to be able to say "oh man I can relate".
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