It's hard to have your life upended over, and over again on a regular basis. That's the reality of someone living with a chronic, incurable illness. I go through cycles with my many illnesses. It's both physically and mentally taxing to deal with getting sick on a regular basis; from feeling "normal" to being immobile. Most college seniors probably do not understand the struggle of getting up; of actually physically trying to push yourself up, and swinging your legs over the edge of the bed to get up. Most people don't have much thought during this process, other than maybe that they're tired and they'd like to sleep longer. I wake up more and more often spending at least a half hour trying to stretch out while laying flat in bed trying to get my muscles and joints mobile enough to get up with as little pain as possible. I stretch out a little more when I sit up. Then there's the quite painful standing up, which usually feels like the weight of the world on my bad hips, knees, ankles, and feet. I walk slowly to the other side of my room and put on my robe, hoping that eventually I will in fact make it into the shower. I slowly make my way up my stairs, which usually sucks most mornings lately. I'm already exhausted at this point. I take some ibuprofen and sit down in my recliner in the living room and put my feet up. I try to wake up more, because I'm still not mentally all there. I scroll through Facebook and try to do some reading for school. This usually ends with me getting really frustrated in my inability to read over and remember my school work, and I give up on it for awhile. If it's a good day and my joints are feeling a little better I'll hop in the shower. The hot water makes my joints feel a little bit better, but standing for so long is exhausting. Washing my hair, which is almost down to my butt, is a serious task for my arms. They are sore and weak and can't stay up long enough so I'm leaning up against the wall all weird trying to give them support while I get some shampoo washed in. The water feels so nice, especially if my Raynauds is acting up (which it usually is, because winter has set in here) but I know all this hot water is going to do terrible things to the dry patches of skin all over my upper arms and shoulders. I do my best with my arthritic hands to turn off the water, and then try not to fall when getting out (tub/shower) because my legs can't lift that high. It's probably anywhere between 12-3pm by this point. I've just gotten myself together for the day. I've missed my meetings, my classes, my routine. Chronic illness doesn't care at all about your routine, about your responsibilities. It lets you get stuff done when it feels like it. Sometimes I get to keep my routine and have my life, but other times I just don't have that option. I can "push through" and "be strong" as much as anyone else, but the reality is that I am physically unable to have the life I choose very often. I can not get around this fact. I can work around it to the best of my ability and find other things that are fulfilling during these times, but I can't just magically not be ill. Right now I'm going through a cycle of my life being upended, of having no routine, and being sick more often than not. I know that it will pass, but right now that is my life. I know and can accept it for the most part, I just wish those around me understood and could accept it as well.
Nothing is going as planned. Trying to be something I'm not is becoming quite taxing. I'm not the healthy college senior excited for graduation, but stressed about finals in the next few weeks. I'm the sick girl who has missed more school this semester than any other semester she's been in school, who is so behind she's not sure if she can get caught up. I'm the girl who is too sore and depressed to try to get up out of bed at a decent time most days. I'm unfortunately lately a great example of what it's like to try to live your life with a chronic illness like lupus (and sjogrens, myositis, vasculitis, fibro, tachycardia, and lung disease). Doing anything is hard. I'm so behind in school. Writing this is fairly easy, but trying to sit and gather the mental strength to read research and then write about it is very difficult right now. A lot of chronic illnesses cause "brain fog" where keeping yourself focused and such is damn near impossible sometimes. I forget what I'm reading a lot lately, even stuff that I'm genuinely interested in. When I start to feel overwhelmed by it, it gets even worse. I'm worried about getting the grades I need this semester. I used to be so concerned with getting all good grades, and I realized I unfortunately can't get the grades I know I'm capable of most of the time now. It makes you feel kind of bad about yourself when you're going through life with a bare minimum attitude, but when it's the best you can muster you just have to suck it up. The fact tomorrow may bring about certain chaos and stress because of a situation right now is also not helping matters at all. I suppose if that goes badly I'll update you about that. Peace out. I should be doing a million things today. Yet here I am, sick again. The second time in a month. I feel like this must be lupus related as much as I didn't think it was at first. I think it's flaring in a bit of a different way than usual. I haven't been able to take my pills right, spreading them out to at least have them in my system. Once I have the energy and what not I need to make it up to the hospital to get help with my insurance. I really need to see a doctor and get my meds filled. I don't need a lecture about my meds, I know how important they are. I'm going to get it figured out, it's just a daunting task when you have a million things to worry about and also feel like you have the flu. I'm stuck in that fun cycle of stress makes you sick, and being sick stresses you out. Hopefully things will all work out soon! |
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February 2019
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