This post is part of a Patients For A Moment blog carnival that Duncan Cross is hosting. Duncan is a dear and always includes me on his mass emails so I know when he’s hosting an interesting topic. This time’s topic is “What does it feel like?”
<<Side note to my regular readers: I’m so sorry about the inexcusable lack of posts lately. The summer sort of got away from me, and the post that I thought was all set to go up in August disappeared somewhere between when I set it post and the time it should have posted. It seems silly to post about summer stuff now, so I’ll save it to post next summer. Life updates to come as soon as I can manage it.>>
The idea of trying to explain what it actually feels like to have a chronic illness sounds so much easier than it turns out to be. I find that when people actually ask me this, I’m tempted to respond with generic phrases or even just shrug. It’s not that I don’t want to explain. Most of the time, I’m all about educating people who are interested in learning, but it’s hard to describe pain in words. First it’s hard for people to get their heads around the foreign concept of constant pain. Then their perception of what I’m feeling might be nothing resembling what I’m actually feeling because everyone perceives pain differently. However, being able to explain how I feel is useful beyond the hallowed halls of my rheumatologist’s clinic exam room, and I hope that this will help the readers who email me because they are trying to understand what a loved one is going through.
“It hurts,” is sometimes the best I can do when someone asks how I’m feeling. I realize that this doesn’t really explain much, but when everything hurts it can be hard to formulate a coherent response. The best way that I can describe it is to ask you to imagine the worst flu you ever had. The kind of flu where you feel like someone took a baseball bat and beat you black and blue from head to toe. That achy painful feeling in your muscles and joints? That all encompassing fatigue that makes you feel like getting out of bed to walk all the way to the bathroom in the next room might be physically impossible? That’s more or less my baseline. That’s how my body feels every day. On a good day.
My muscles ache and stiffen like I’ve been doing crazy weightlifting workouts and they cramp up. My joints get swollen and stiff, and that makes them painful too. This includes the connections between my ribs and my sternum in the front and my vertebrae in the back. Those rib connections get swollen and every time I take a deep breath it feels like I’m stabbing myself right at each of those points. Even shallow breaths get to be painful. My hips, knees, and the joints in my hands give me the most trouble but almost all of my joints swell sometimes. If I sit/lie still for too long, my joints stiffen up and I end up having a hard time moving them. This can mean it’s hard to straighten out a joint, or it can mean that it’s hard to bend it depending on how I was sitting. After a full night in bed, this is even worse.
I get headaches. I get skin rashes – sometimes across my nose and cheeks where they are conspicuous, and always if I go out in the sun and forget sun protection. I get mouth sores that make it hard to eat or drink anything. My mouth almost constantly feels like I’ve been walking around with cotton gauze in my mouth – no matter how much water I drink. I also get nerve pain which feels like someone turned my nerves into electrical wires and then started running shocks down them. I get restless legs which make it hard to sleep because I feel like ants are crawling up and down my legs. A lot of times I feel like I have a fever, but it’s very low grade and often times I don’t even have one but it feels like I do anyway. The roots of my hair hurt sometimes, even if I haven’t tied it tightly or pulled it in any way. My hair falls out a lot more than it should too. Sometimes my eyes go blurry and unfocused, though thankfully that’s rare, and they often get dry and scratchy. I often have trouble with insomnia, and that aggravates all of these symptoms. I’m also almost always exhausted, which is frustrating. All of this together means that when I say I hurt all over, I mean that I basically hurt from the roots of my hair all the way to the tips of my toes.
A description of the physical aspects of my chronic illnesses really only encompasses a part of what these illnesses “feel” like though. There are also a slew of emotional aspects to living with a chronic disease. I feel like a burden when I can’t do my share of the work, and can’t work enough to move out of my parents’ house. I find frustration is key when I can’t do what I want when I want – especially because in my late 20s I feel like I ought to be able to do those things. That frustration plays into a number of other feelings as I often plan things with friends and then have to cancel at the last minute. It causes feelings of inadequacy along side the frustration. Sometimes it also induces worries about losing those friends. Even the most understanding friends, quite understandably, get a little frustrated when I’m cancelling plans, or falling asleep in the car while they drive us to/from an event, etc. I think the inadequacy extends beyond personal relationships to the concepts of career/life goals and feeling like I’m living a meaningful existence. My illnesses cause me to feel awkward when I can’t figure out how to explain a situation without talking about my illnesses when I’m uncomfortable doing so such as in a work setting or with someone I don’t know very well. They certainly causes stress when it comes to dating because I can’t figure out when to mention them or how. (I think a separate post on dating with chronic illnesses will probably be up in the next few months.)
It doesn’t help that some of the meds used to treat these illnesses can cause symptoms like weight gain or puffiness which play into the whole self esteem concept like feelings of inadequacy can. On a more philosophical level, on a really bad day I start to wonder “why me” and it makes me feel like maybe I did something to cause my illnesses even though I logically know that I didn’t. Or I start to feel as though I’m not living life to the fullest as I don’t know that my life will be as long as everyone else’s, even though right now my health is in fairly stable shape. Plus I have trouble with “brain fog” which makes me feel confused or lost. I forget things and I feel like I’m not absorbing everything around me. Even barring things like work/school, this can be incredibly frustrating as it makes conversations difficult and a lot of things that need to get done get forgotten.
I often feel like I’m constantly acting. I pretend to be feeling all hunky dory when really I’m in so much pain that I could cry. I pretend that I’m not about to fall asleep. I pretend that I’m not uncomfortable with the way I look, or my dating situation, or the amount of time that I spend with my friends. I pretend that while I’m always overjoyed by my friends’ happy times, I’m often feeling a twinge of jealousy too. I pretend that I can balance life/work/school/etc even though I feel like I’m drowning. I pretend that I can brush off peoples’ dismissal of the reality of my illness, even when it sometimes feels like someone punched me or as if I’m talking to wall. I pretend that I’m just stretching casually when really I’m trying to loosen a sore muscle. I pretend that I just stood up to reach for something when really I want to make sure that my joints have enough time to get used to the change in position so I don’t fall when I try to walk. I pretend that I don’t worry about going bald every time I run my fingers through my hair and a huge number of strands come out. I pretend that I’m ok with the way my life and career have gone off the rails that I worked so hard to put it on. I pretend that I’m not bitter about the million things that I have had to give up because it’s just not possible to do them with the illness that I have. I pretend that I can see the abandonment of people who I thought were friends as only a blessing in disguise rather than a painful blow. I pretend that I worry about ending up old and alone more often that I should. I pretend that I don’t know I’m overdoing it when I choose to be irresponsible and knowingly overdo it.
This is how I feel with my illnesses. I’m sure that even with the same illnesses it is very different for different people. Lupus is notorious for the way that it presents differently in different people. So how about all of you? What do your illnesses feel like? Help me and my readers to understand what you go through…