Another excellent post from my friend Kate at illuminatingkate.wordpress.com
Kate is a 26 year old woman from Australia. In 2015, she caught Glandular Fever (mono) and never really recovered, which has left her housebound (and still often completely bedbound). Kate started her blog from my bed to document the highs and lows of a life with Chronic Illness, and connect with others in the Chronic Illness Community.
If you have a post similar to Kate’s that you’d like to see published, please check out our submission guidelines.
I’m a fairly logical person. I think that’s why the unpredictability of chronic illness baffles me so much. You’d think I’d just accept it now after all this time, but every time I experience an exacerbation of my symptoms, my brain starts ticking away, trying to figure out what caused it. Was it the extra hour of television I tried to watch yesterday? Was it my futile attempt to make myself lunch while standing up? Could it be a side effect of one of my medications? You see, I want there to be an answer. I really want it, more than anything else. I want there to be a clear pattern of cause and effect. If there’s a pattern, I can take steps to prevent myself from feeling like that. I can avoid unnecessary pain. Isn’t that something anyone would do?
However, my illnesses aren’t like that. I doubt many chronic illnesses are. Some days, I just wake up and I feel profoundly worse than I usually do, and there isn’t necessarily any rhyme or reason for it. On those days, everything is more painful and more exhausting. Sure, sometimes there can be triggers – too much activity, too little sleep, emotional stress or acute physical illness – but it isn’t always that simple or clear cut. I can’t always find an answer. Sometimes, my illness is just worse, and there was little I could have done to prevent that. All I can do is wait for the worst to pass, and manage what I can – take my medication, manage my pain, balance activity with rest, and look after myself as best I can. The last few days have been like that for me. The few things that I’m usually able to do at this stage in my illness, such as shower in my chair or do some stitching in bed, have felt impossible. Attempting them has left me consumed by pain and exhaustion, so instead I’ve withdrawn. I’ve curled myself into a ball on my bed, closed my eyes, and tried to shut everything out until the worst of it has passed, because everything has just been too difficult. Light has hurt. Sound has hurt. Social interaction has hurt. Movement has hurt. Everything has hurt.
I understand that I can’t completely control my illnessss. That is their nature. I must admit though, their unpredictability is extremely frustrating, and I’m still learning to deal with it. I’m still learning to accommodate my illnesses without feeling bitter and resentful that this is my life. They’re here to stay. They’re part of me. I can’t shove them under the carpet and pretend they don’t exist. They’ll keep inconveniently showing up, kicking and screaming and banging their fists on the floor, until I’m forced to acknowledge them. However, I’m determined to not let them govern my life. So I’m focusing on accepting them right now, without wasting energy on fighting the uphill battle of denial first. At the same time, I don’t want my illnesses to be all I think about. I don’t want to be afraid of them. I don’t want to avoid pushing myself or trying new things out of fear of possible repercussions or payback. I don’t want them to become my entirety. I am so much more than illness. I want to live my life despite illness, not because of illness. It’s a constant balancing act, but I’m figuring it out. I am. I’m learning about setting limits and pacing myself, and most importantly, I’m accepting these things as necessary, rather than viewing them as personal failures or shortcomings. I just need to do what I can, when I can, and most importantly, listen to my body. It seems to know what it needs best.
So my current goal is to just accept those days where illness leaves me crippled with exhaustion or curled over in pain, because there isn’t really anything else I can do. I will accept them, and remind myself I can survive them. I’ve survived them before, and those extra awful days eventually do pass. I always eventually get a little moment of relief, and right now, that’s enough.