Chronicles of Life with Multiple Sclerosis
Note: This is a serious word vomit, unedited and will probably be so incoherent I’ll be horrified later and intend to edit/delete it but not actually do it because I have overloaded myself like an idiot.. which is what this is about. so hey, just keep on scrolling.
Had high hopes for this weeks blogging etc but well … life exploded and because I am still not capable of knowing, acknowledging, and expressing my limitations to others, I’m doing too much and paying for it dearly.. while still clawing to fulfill the expectations I let be put on me for a long period of time.
People will say ‘well you look good’ and mean it as a compliment.. People will try to understand and very seriously try and respect their understanding of our limitations. The problem is that they are incapable of understanding them on any real level.
Even people that know me well can’t understand what it really means when I say I don’t feel ok. That when I say I’m tired, I really mean I’m on the verge of tears and collapsing on the floor. Some of that is simply what it means to live with an invisible illness, but some of that is me.
I’ve never been one to say ‘I’m on the verge of tears and collapsing on the floor’, I say “I’m just so tired” and thats it. I can hope that those that know that I’m chronically ill can interpret that to be more sever in some sense than if someone else said it… but with an invisible illness people don’t always remember, or place the magnitude on it that you are meaning.
Many of us use this as a coping mechanism. A ways of trying to convince ourselves that maybe we don’t mean it in any other way, or that if we “don’t look sick” we can pretend we aren’t and somehow that will make us function as though we aren’t.
Problem is thats never the reality. No matter how its perceived or what extreme our verbalizations of how we feel are or aren’t, it will all reach critical mass because we are chronically ill, we are disabled.
I’ve always been good at taking on too much, wanting and agreeing to help with everything and anything and even now, in my 30s and chronically ill, not truly being able to say no. NO. Those two letters together are a magical thing. They are life saviors, heart breakers, alienators, and a level of self care that is too often the hardest to achieve.
We can hope that somehow our explanations of pain, fatigue, cog fog, balance issues, sight issues etc will resinate with those we love. We can repeat our metaphors, our spoon theories to people who ask us what its like, people who know us and wonder why we take some of the actions we take. We can hope that those who know us can read between the lines enough to understand when we’re saying we’re not ok, when we hesitate when responding to ‘how are you’ or when asked ‘can I do anything’ and response is a slow but ultimate no. We can hope, but we can never expect.
Thats the point of my post tonight. We can never expect and we can try and explain, hope, provide ‘rules’ but we can’t expect understanding from individuals who have no way of conceiving. Theres a line I’m treading here I realize. I’m not at all saying that we shouldn’t have expectations of our loved ones, of strangers even. There is an element of awareness, acknowledgment, and humanity that we should expect from all individuals. We should fight ableism, demand our doctors listen to us when we describe our symptoms, expect to be taken seriously and never let others demean us for what we can and can’t do at any point. But there are things that, after some time living with a permanent and chronic illness, we need to demand of ourselves. Please know that I am mostly writing this to myself after the last several months. We have to say no, we have to say we can’t and we have to be ok with it. WE. meaning *I* have to stop agreeing to do things I know, even though I don’t want to accept, are beyond what I’m physically capable of. I need to protect whats left functioning of this body through self care and personal respect. I need to be able to hear ’ well you look good’ as a compliment AND be able to say I DON’T FEEL GOOD AND I CANNOT DO THAT BECAUSE I WILL DRIVE MYSELF TO HOSPITALIZATION AGAIN. THAT has to be ok with ME. I should and do expect that its something that others who care about me and well.. aren’t assholes.. will respect.. but I have ti be the one to say that. I have to be the one to accept that I cant’ do it all, I couldn’t before I got this sick and I definitely can’t now. I need to be able to respect myself enough to say that and not drive myself into a depression. I also need to be able to say no without it being an assumption that I will never be asked again and/or will never have the opportunity to say yes again.
There are these moments that come and go and, I know I’m not alone here, I over think, over analyze and over do so much. Its my personality. I was born of a workaholic and I was one from as far back as I can remember. More over, I was the helper. I don’t know how to hear a problem and not try and fix it. Its a sick, and if you think about it pretty arrogant, personality flaw that now is also detrimental to my health. I can’t always fix it, I can’t be everyone’s go to, I can say no, and if that ends a relationship, work, friendship etc, then its not one I should be in anyway. I’m 33 years old and I’ve been working on internalizing this for ages.. but I can tell you today, I haven’t even come close. I may be better at verbalizing responses to things I don’t like or agree to, but I still passed out twice, was hospitalized and continued to push myself because I said I would do XYZ. Thats me. I did this to myself. I should most definitely say “no, I’m sorry. I cannot do this because I need to rest, I have xyz else I need to do for my own well being and if I put them off to do your XYZ I will be back in the hospital”.
Honestly that last sentence? its shouldn’t even require that much explanation. The financial expectations and attempts to push myself there are a bit more complex, but thats for another day. If I can’t start by explaining to those I love, and who claim to love me, that I’m not the same person both mentally and physically and while I may have been the go to girl, the one who’ll give in and say yes, in the past I cannot be that anymore. If I can’t say that to them, and reinforce it with a NO I can’t, and expect them to still love and care about me? Then I can only expect these frequent flare ups. Its not self blame. I know it might sound like that a bit, i expect those I love to learn and cope and then understand and act accordingly. I do. I guess I’m just angry with myself. I’m angry with myself because I still seem incapable of pushing that. Of saying no in a straight forward way more than just once. I expect that understanding, but I can’t expect mind reading and I can’t expect others to stand up for me when i’m skirting an issue myself.
I can’t say “well I guess I can do that, but you know I might get sick so maybe you should have a back up… but you know I’ll be there” and expect that to be interpreted as a “NO! I’m SICK. I already feel like shit and I am overwhelmed and I need you to know thats what I mean when I hint that I might not be totally ok with whatever”. Thats not fair. Its not and I have done this my whole life and fought to change myself and yet, I still fucking do it. Just like asking for help, i don’t know how to do it, it comes out like a passive comment, and the responses I get? I did it to myself.
So yeah, I had high hopes for blogging this week. I had topics and I planned to do the 30 things meme (Still do actually) but I got in over my head, and then even more over my head, and then the shit hit the fan even more. So yeah. Some reblogging and this giant ass word vomit for today. Thank goodness I have someone close to me that is reasonable and called me on some of the aforementioned BS I pull.. and is helping me out. So tonight I will sleep in my own bed, I will take the damn pain meds, and I will do what I can and not more than that. I hope this is something can do instinctively *before* everything gets this bad… at some point in my damn life… Cause this story is getting REALLY old after 33 (very very soon to be 34) years of life.
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yep, and I always end all attempts to feel better with a giant cloud of icy hot that generally leaves me coughing/sneezing and makes zoya mad even when I’m in the other room. heh.
I think you have a damn good plan. Thats what I’ve been doing with my “tysabri wearing off” week.. especially the parks and rec part.
Feeling pretty exhausted and a bit hurty so I’m going to spend this afternoon doing nice quiet things. Possible list below, but not a to-do list because if I get sleepy I’ll just nap.
• fix hair
• bake cake for boss (trade for Wednesday off)
• trawl through magazines to collect visual inspiration for this year’s school projects
• paint my gnawed off nails
• lotsa Parks & Rec
So I’ve come to realize, through this wedding experiences that its really my own neuroses that stop me from taking care of myself. Friends in these sorts of situations, the ones that really care, even if they can’t see now… they will not resent you in the end for doing what you need to do. The real problem is when you are not capable of stopping when you know you need to. The ability to stop and say ” no I can’t do this anymore” or let yourself rest and not worry that you’re messing thins up and/or missing out on something, is a skill that really must be obtained in order to survive these sorts of life events. I guess I realize the hardest part isn’t outside of me, but in accepting what I can and can’t do, accepting that there are things I’ll miss out on, and accepting that I won’t always be able t be the superhero I was before or pretended to be before hah. Leaning to live through the minor conflicts and having faith that in the end the people you love and trust most will be there.. thats a damn hard thing to do. I’m working on it. As a passive conflict avoider its not so easy.
Maybe, however, its what i’m meant to learn from my illness. The friend in question actually pointed this out to me today. That as much as all this sucks. maybe this is life trying to kick me into learning a lesson I’ve found to be one the most difficult thins to internalize for all my life: you can’t please everyone, you can’t always be there to save the day, and you have to learn to say no no matter how hard it is. Another wise friend of mine wrote me and reminded m of this too. I’m gonna keep working on it. Not doing so well this time around, as I feel like shit and have pushed myself way too much, but I’m making progress and am cognizant of the need. So its a first step I guess. I’ll bet I’ll be internalizing it a lot more next week when I spend days collapsed on my couch trying to recover from all of it.
in any case, i think sometimes we work so hard to appear strong, to be as “normal ” as possible, that we create these messes for ourselves. We have to learn that our love ones, if thats what they really are, will understand in the end and its OUR responsibility to draw lines and set limits for ourselves. This may be the hardest part of MS of all. I for one and far from having learned it.. but I suppose awareness is a good first step.
Lots of people talk about the right to be happy, but for me I need to tell myself that it’s ok to be unhappy. That my experiences and my pain are valid and if it hurts me then it’s because what I am dealing with is hard.
And it’s ok.