Chronicles of Life with Multiple Sclerosis
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
[Image: 6-piece blue colored background with a Siamese cat with blue eyes. Text reads: “As the medications add up… …So do the side effects.”]
Despite throwing a bunch of prescriptions, and over the counter stuff at my body, things just seem to be getting worse instead of better.
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
[Image: 6-piece blue colored background with a Siamese cat with blue eyes. Text reads: “ ‘Any change in your weight due to this med should be negligible’ — Maybe you should define negligible.”]
Maybe this is just me, but a 7% weight increase in two weeks (despite sticking to a rigorous food and exercise routine to manage arthritis/chronic pain) seems a bit like you shouldn’t have blown off my question about these psych meds causing weight gain, doc.
Every day I give myself a shot of Copaxone. I rotate around 7 spots on my body - my hips, thighs, arms and belly. The medicine is given with a small needle and it is supposed to go into the layer of fat just underneath my skin. Copaxone doesn’t have very bad side effects, but it does cause swelling at the injection sites- especially in areas with little fat. (I don’t have much fat, so cookies are always accepted.)
This was a particularly bad day. Giving myself a shot in the belly is kind of like getting a beesting right next to my belly button. It gets and stays swollen, itches, burns and is generally uncomfortable for a few days. Besides the giant red welt, the two lower marks are my appendix scars. All of the other small red spots are injection sites from weeks prior.
The meds are supposed to decrease the chances of recurrences and they increase the chances of being mistaken for a heroin addict.
sending you a box of yummy cookies. Copaxone did this to me too.. and I have a decent amount of fat to go around. heh.
M.I.A. again. yeah, sorry about that. Lots going on and paying for the last month (and wedding week especially) with fatigue, pain, and general ugh-ness. I will be back online whining, babbling, and responding to asks (which I’m so grateful for btw.. I love hearing from others) asap. Not that you all are waiting on bated breath or anything. Just want to make sure I respond to everyone thats offered me support and advice. On that note, till I get my self together again, I wanna send a fist bump to all of you. you’re badass.
First Tysabri infusion thursday went reasonably well. No reactions during or anything eventful really. The nurses kept saying things like “aww are you here alone?” as though that meant I was a hermit with no friends/family (which I sorta am but let me keep my illusions damnit). By the time I got home, however, I was feeling pretty shitty. Started sneezing, having hot flashes, dizziness, and aches. Freaked me out a bit. I did some googling (which was a bad plan) that led me to many sites about PML, including stories of about people who have died. That wasn’t the best thing to read. I think that sorta scared feeling exacerbated the side effects I was experiencing. I would say the feeling was a lot like a much much lighter version of my Rebif side effects (which almost killed me) but they were gone when I woke up on friday. I have high hopes for this, partly because of research, partly because its only once a month, and partly because I have to have high hopes. hah. Anyway, thats the major event of the week. So I guess I’m not just queueing things today after all.
I have such a horrible time when my copaxone injection is in my leg, especially the thigh. I mean, it always hurts but this is like a little atom bomb in my leg that proceeds to send electric shocks up and down that side of my body for days after. I steel myself for it before but every time it kicks my ass a little more. I know I should be thrilled I’m no longer on Rebif (which had me calling the ER and crying my eyes out from under a pile of ice packs) but this still sucks.