Category Archives: coping

Bikinis, Battle Scars, & Warm, Woolen Mittens

I’ve been writing this post in my head for months – since January! Somehow it never got written, and then new things kept happening that I thought should be included…  and suddenly it was November. Tomorrow is Thanksgiving, so I am determined to finally get this post written and online. I can’t think of a more appropriate time to post it.

Living with a chronic illness often means that we are forever bemoaning the loss of yet another person who has jumped ship from our lives. While this sentiment is often justified, I sometimes feel as if I spend so much time focusing on those moments that I forget to truly appreciate the friends that have stuck around and understand what my life is like. Sometimes this understanding is blatantly obvious in the form of gifts and such, but other times it can only be found by reading between the lines.

I don’t really send my blog link out to people that I actually know in real life very often. I pour so many honest, personal feelings into my posts that everyone knowing them would just feel awkward and like a violation of my privacy. Of course, that means that people only know what I’ve actually told them, and I’ll be the first to admit that it isn’t always very much. Still, sometimes I get off-hand comments from people I’m not close to anymore telling me that they saw something on my blog. That always shocks me, because I sent them the link such a long time ago, and we’ve drifted so far since then, that I didn’t even realize they still look at it. Likewise, I have an old friend that I barely even keep in touch with beyond a big group dinner or drinks when she’s in town for Thanksgiving. Yet a couple of years ago, she told me that when she heard about the lupus she spent a lot of time learning about it online. She’s nowhere near the only person that told me she looked into it, but she was the one that shocked me the most because I’d never talked to her about it even once.

Way back last January, I met up with a close friend for dinner. She made a comment that stuck with me. She told me that when she, and our third friend, say, “How are you?” That means that I can gripe about my illness, or I can just say that I’m fine. Or I can ignore it altogether and just talk about work or the weather, and all of those options are perfectly ok. Those three words are so disarmingly simple. Just “How are you?” We say them all the time, sometimes even to strangers. But we don’t always mean them. They’ve become an extension of the standard “hello” greeting. Or, even when we do mean them, sometimes we don’t really want all the details. Over the years, I’ve learned which friends need me to skip over the illness-related realities, because I can see that they’re visually uncomfortable.

The funny thing is, those sorts of statements and questions are so generic that it’s easy to miss the depth of their meaning. It’s not so much what the words are as what they represent. I love when I get texts from a friend saying things like, “Thinking of you in this turn of cold weather.. Hope you’re doing alright.” It’s comforting to know that the sender cares and is aware of how my body reacts to this kind of weather…. but she doesn’t require a definite response. I don’t have to muster up the right way to say, “I’m holding up ok.” or “Yeah, it really sucks.” At the same time, now I can do so if I need to, without feeling as if I’m mucking up someone’s day with whiny texts.

The weight gain caused by my medications was something that I really struggled with. Losing the weight was a huge struggle too. Now, even though I’m more or less satisfied with my weight, I’m still self-conscious about the stretch marks that all the weight changes left behind. Honestly, last summer was the first time I’d worn a swimsuit, let alone a bikini. I was a little uncomfortable with it, but I knew that I was safe with my friends. I still made an awkward off-hand comment about the fact that I try to think of them as something along the lines of battle scars. They didn’t bat an eye. All I got were grins, chuckles, and a new conversation topic. And, frankly, I doubt that they even remembered the comment, but their reaction was so natural that I stopped feeling awkward about all the marks.

When another close friend of mine went on vacation to Machu Picchu, she came back with gifts for some of her friends. She’d chosen unique gifts for each person, based on what she thought they’d like best. She handed me a pair of thick woolen mittens, commenting that she remembered how much I’d struggled with the truly brutal winter we suffered through last year. Sometimes I think maybe people just sort of space out when I start talking about things like how brutal winter weather is for me… and sometimes they really do. I see their eyes glaze over. It’s times like that one, though, that I feel like I’m about to cry. In a good way (yes, boys, there IS a good way), because those moments remind me that there are people who are paying attention and who actually remember and care about what I said.

The other day a friend commented that I didn’t really have anyone to talk to when I was going through the whole diagnosis process. She meant that I didn’t have anyone who’d actually been diagnosed with lupus to talk to, but my response was, “Well, but I had you.” and I meant it. There is something to be said for talking with someone who’s actually been through this stuff, but it’s also easy to underestimate the importance of the continued support of the people that have always been there for you. You expect that those people will be around for you, so you aren’t shocked except if they suddenly aren’t anymore.

It’s hard to tell whether these people realize how much these little things mean to me. Sometimes it’s hard to articulate, because I’m not sure that there are really words for those feelings of love, and belonging, and reassurance (yet those words just don’t seem to encompass the feelings completely either.) I would say that “friendship,” is supposed to encompass all of those feelings, but that just seems cheesy. So I will just say this: to those of you I mentioned in this post, and to the rest of you who are equally important (but I had to stop myself before I wrote an entire book,) this is me saying that I’m thankful. I’m thankful, and I’m very, very grateful even if I don’t always manage to say so. I couldn’t have dreamed up better friends had I tried.

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Filed under "...said WHAT?", advice/suggestions, coping, shout outs & thank you's

Return to Sender: A Letter to My Pre-Illness Self

This post is part of a Patients For A Moment blog carnival that Duncan is hosting. This month’s PFAM blog carnival topic is “Write a letter to your pre-illness, pre-diagnosis self.
I was supposed to write a (short) letter to pre-illness me. This was harder than it sounds, because it was hard to know what to focus on. Details? General wisdom? In the end, I went with generals because I couldn’t figure out which details to focus on.
Dear Pre-Illness Me,
I hate to break it to you, but there’s no good way to do this other than to rip off the bandaid. Something very wicked your way comes. Soon. Ok so that sounds like something of an epic, species-threatening scope. It isn’t, relax. But it is absolutely of a life-shattering, personal reality-discombobulating scope. Right now, you have no conception of the realities of chronic illness, and there are some things that I wish we’d (I’d? You’d? This is so confusing…) figured out before it happened.
Live your dreams, but think of some backup dreams just in case. Fight for your dreams, by all means. But remember that some things in life can’t be found no matter how much you fight for them. Sometimes it’s necessary to have back up dreams. Welcome to the real world, I hate to be the one to usher you in.
Stop taking your friends and family for granted. It’s so easy to get caught up in your own life, but remember that you give what you get in life. Someday soon you’ll realize how important those friends are to you. And at that point it will be so much harder to be able to hang out as much as you’d like. Don’t let the people who are important to you drift so far away that they don’t want to fight for that friendship even when you do. Friends are important, but you won’t truly understand how important they are until the world starts to crash down around you. On the flip side of that: stop wasting your time with the people you can’t rely on. If you can’t rely on them when life is peachy, you won’t be able to rely on them when things turn rotten.
Learn to choose your battles. You have to be able to shrug off the minor grievances. Your strength will be limited. This means you can’t waste the strength that you have on things that don’t really matter in the long run. That coupon you forgot to use? That paper-cut on your finger? Yeah, not worth all that whining…
Don’t take your free time for granted. You won’t be able to have as much free time pretty soon because you’re going to require a lot more rest. Moreover, what you can actually do with that free time will be even more restricted by the realities of chronic pain, arthralgias, myalgias and the need to stay out of the sun. So get out there on the lake or hike up that mountain, that chance may never come back around.
Learn to truly appreciate the little things. These are the things that matter, but they’re easy to forget about in a world filled with constant new thrills and adventures. That afternoon you could spend reading with a cup of tea? Lovely. That time you were able to have a three hour chat a coffee shop with a close friend? Wonderful. That family dinner you managed to cook and eat without fighting with your sister? Near miraculous. These are the things that matter. It’s easy to forget about these little things when the bigger picture has fallen apart.
Just remember – the people that matter, and the things that truly matter, are still there. It’s easy to lose sight of them, but they still exist. When things fall apart, it’s easy to fall into a despair, but those little things that truly made life meaningful are still there. You just have to remember to appreciate them.
Love,
Future You
The thing is, though, that I can only try to remember what I really thought and felt back then. What I think I remember of myself is tainted by hindsight. Who I’m trying to write a letter to and who I really was back then are two different people. So my letter keeps coming back, marked with words that Elvis immortalized: Return to Sender, Address Unknown.

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Filed under advice/suggestions, blog carnivals/grand rounds, coping, introspection

Sunday Breakfast Club – Poesies & Metaphors

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them. So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

No matter what you’re accustomed to during a “normal” winter, Winter has been pretty brutal across a large chunk of the USA this year. I live in the upper Midwest where we have had some really nasty wind chills and such. We expect cold winters, but not like this. It’s been miserable, and the extreme cold plus the snow have had my body in hysterics. The occasional warm spells didn’t really even help, because the sudden jumps from way-below-zero highs to highs in the teens or 20s (F) back to way-below-zero highs again confused my body even more. Meanwhile, I’m trying to walk or drive on the ice rinks we are currently calling streets. It’s been the kind of winter that starts to make me feel like maybe this year will be the year when Spring just forgets to show up…

There’s a bit of poetry that popped into my head during one of our especially cold spells, and has been providing a bit of solace ever since. It’s part of a much longer poem, and is taken rather out of context, but part of the appeal that art and poetry hold for me is that I don’t necessarily have to interpret them the way they were intended to be interpreted.

For winter’s rains and ruins are over,

And all the seasons of snows, and sins;

The days dividing lover and lover,

The light that loses, the night that wins;

And time remembered is grief forgotten,

And frosts are slain and flowers begotten,

And in green underwood and cover

Blossom by blossom the spring begins.

-Algernon Charles Swinburne, Atalanta in Calydon

I’ve been reciting these lines in my head as a reminder that eventually Spring will return, even if it doesn’t feel that way right now. I may not be able to see it, but daylight hours should be getting slowly longer. I try to remind myself that Spring starts to develop deep in the Earth and trees long before the buds start to show on the branches. Besides, the line “frosts are slain” has a splendid sort of vindictiveness to it that fills me with a rather unkind glee…

The thing about this concept of not always seeing the early signs of something is that it applies to more than just the Spring. It also applies to my flares. Just like I usually get a warning of their impending doom, they have usually started to gently ebb away before I realize that there is some relief coming my way. Of course, since I don’t see the signs, I’m busy cursing the flare in the meantime. The point is, really, that I’m so miserable, be it from a flare or the winter cold, that I can’t, or won’t, see the signs that relief is coming. Albeit slowly.

So while my body continues to flare in anger at the weather, and Winter marches interminably on, I try to put some faith and hope in the invisible signs of better days.

What inspires you to hope for better days?

*Disclaimer: As I stated above, I have taken these lines out of their greater context and applied the meaning as I am choosing to interpret it. To the people who never feel satisfied until they have mocked someone else: should you feel an absolutely redundant but inescapable need to point this out to me, please send me an email rather than leaving a comment. Preferably with a subject line with something along the lines of “mocking your interpretation of the poetry” or something so I know what I’m walking into when I open it. Thanks 😉

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Dating and the Chronic Life

 

Chronic diseases affect just about every aspect of a person’s life, but which aspects are most painfully affected varies from person to person. Many people struggle with maintaining friendships and feeling like an active, contributing member of society. I have been very lucky in those two areas lately, but I find that the dating and romantic relationships prove to be the hardest part for me to deal with. Dating can be a pretty difficult process to begin with sometimes, but chronic illness just adds another level of messiness.

 

With both full-time work and part-time school, the amount of time that I can potentially spend with someone is already limited. This is then compounded by the fact that trying to manage my schedule with my illnesses means that by the weekend I really just want to collapse into bed and stay there. I’m exhausted and pretty much useless company by Friday night. … and that’s just on the regular days. The problem is, I can never predict which days will be regular days and which days will be “OMG I’m so exhausted I can’t see straight” or “OMG I’m in so much pain that the idea of even trying to get out of bed is excruciating.” So I could potentially plan a date that fits into my ridiculous schedule…. and then wake up that day and say “yeah…no.” Which really sucks, and makes it hard to convince a guy that I’m actually interested. This, of course, applies througout a relationship. I can never truly guarantee that I’ll feel up to doing something. Then there’s the fact that as a vegetarian with gastroparesis, dinner dates are hard. Yes, I can usually find something that’s vegetarian, but I can usually only finish maybe 1/3 of it. It’s uncomfortable sitting a table and picking at my food. It seems like a minor thing, but it makes my dinner dates all the more awkward.

 

Of course, those are only the initial issues. The major elephant hiding under the rug, of course, is the reality of my chronic illnesses themselves. I never really know how or when to let the elephant out of hiding. Trying to hide that something is going on with me is about as easy as trying to hide an elephant under a rug. The big lump under the rug shows in the aforementioned issues with scheduling a date in the first place, it shows when I can barely manage to eat a child-portion meal, it shows when I wince as I try to stand up after sitting at the dinner table for so long, and it definitely shows in my limitations in terms of activities for dates. Hikes? Ummmmm yeah. Not so much. The end result is that people either think I’m not interested, or see the bump under the rug, but can’t figure out what it is. But most of the time they don’t seem to care whether it’s an elephant or maybe a hippo or a rhinoceros? The reality is, most of the guys feel uncomfortable and don’t really want to get into any kind of relationship with someone with this much baggage. Now, granted, a friend reminded me awhile back that most everyone has baggage of some kind. My friend, in her infinite wisdom, said that the trick is finding someone who can accept your baggage and whose baggage you can accept. Well, getting someone to accept it seems to be the issue.

 

I think part of the problem is that I never know when to bring it up. I don’t like to bring it up too early because then I feel like it’s casting a shadow over me and who I really am. I want to at least stand a chance of a guy being interested in ME before I mention my illnesses. On the flip side, if I wait too long I’ve had guys say that they feel cheated and that I should have ‘fessed up earlier. It’s hard to judge the right moment when every guy is obviously different. More than one guy has been put off by my timing, and one even said that he had thought I just wasn’t that into it, but this reality was “way worse.” I once had a guy catch sight of my medical ID bracelet in the middle of asking me out. He faked a page and left without even finishing his sentence. Which just begs the question “Is there truly even a good time?” It’s nice to weed out the guys who don’t want to deal with the realities of my life early, but sometimes I feel like maybe if they got to know me a little first they might be interested in at least giving it a try.

 

Watching my friends move forward with their lives is hard too. One of my best friends got marrried last summer, another one around Christmas, and I’m pretty my sister is headed in that direction in the very near future. Sometimes it’s hard to deal with the dual-ing feelings of joy for their happiness and my own loneliness. Dating isn’t easy even without chronic illnesses, and a lot of my friend are still single right now. This sort of helps, of course. Still, certain times are hard. Valentine’s Day. (Last year my sister bought me a bag of chocolate. Which she later announced – in front of a group of people, mind you – was “pity chocolate” that she bought me because she “felt bad that I was home alone when she was out on a date.” This was supposedly a joke. I don’t think I’ll ever find that kind of cruelty funny, and it certainly didn’t make it any easier.) Summer wedding season is rough too. I try to remind myself that days like Valentine’s Day don’t actually matter in the grand scheme of things. I know this in a logical frame of mind, but sometimes my emotions overrule the logic. This of course leads back to my acceptance theme for this year. Trying to just accept that it’s probably going to be harder to find an accepting guy. Trying to accept that this is only partially in my control. Most of all, I’m struggling with trying to accept that it’s ok for me to feel both overjoyed at someone’s luck and happiness AND miserable about my own love life (cough. lack there-of).

 

Whenever I post something about dating, I invariably get comments or emails from the people who have been lucky in this arena. Generally, when one or both members of a happy couple start to lecture, grating feelings of resentment and annoyance tend to be induced. However, there is some solace in knowing that there are people out there who can be accepting of illnesses like this. Honestly, I get the most reassurance from people who started dating someone after they already had their illnesses. I think this is because, at least to me, asking someone to accept me part and parcel with my illnesses is different from asking someone who is already in a committed relationship with me to accept that I’m being diagnosed with a new illness. I’m sure that that situation has its challenges too, though, and I’d love to hear from people about what they did to get through either of these situations. Have you found any good ways of getting around these issues? Or in explaining your illnesses? How do you judge when the right time to “‘fess up” is? I know that some of this is just a matter of finding the “right guy,” but if anyone has any tips or tricks I’d be grateful…

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2014 Resolution: Acceptance

It took me a long time to settle on a resolution for this year. I wanted something that I could reasonably work on given my school & work commitments, but that would still feel like I was working on something important. In the end, I settled on something based on a comment that my therapist mentioned back in December. We were discussing how awful this winter’s bitterly cold weather is for my body to put up with. At one point, she asked me what I could do about the issue. Obviously, basically nothing. I’m not in a position to move to another state right now – not only because of my academic program, but also because I just don’t have the money. At best, I can try to wear even more, even warmer layers. She made a good point point: pretty much all I can do is accept it.
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In many ways, it feels as if this is just a big old metaphor for living with chronic illness. I can’t do anything at all about the fact that I have a chronic illness. I can’t do anything about the fact that my body reacts badly to almost any weather type. I can’t do anything about the fact that some people will never try to understand, and that others will never get it no matter how many times I patiently explain in excruciating detail. I can’t control how many medications are currently approved and I can’t control how my body reacts to them. Pretty much everything that I CAN do is akin to wearing more layers. I can take hot baths and I can use a heating pad. I can try to protect myself from the elements with winter gear, sun hats, and sunscreen. I can take various pain killers and try to eat only things that don’t seem to aggravate my body. I can make a concerted effort not to overwork and overextend myself. None of these things can fix the root problem of the chronic illness though.
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The funny thing about acceptance is that, apparently, I do a better job projecting high acceptance levels than actually having them. At a New Year’s Eve party, an acquaintance overheard me mention to a close friend that I was having a rough time [with my pain levels] due to the very low temperatures. This acquaintance asked what that meant exactly, and I explained. She was pretty shocked and wanted to know how I can possibly manage to live in the upper Midwest. I sort of shrugged and said that most places have something that makes them a problematic place for me to live – too much sun, too much rain, too much cold… none of these are ideal. My close friend, who had been listening to this exchange, made a comment about my having such a good attitude about it all.

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The truth is, though, that I rail against the unfairness of it all in my head all the time. I just try not to keep it under wraps because it tends to make people uncomfortable. I feel like they can’t do anything about it anyway, so what’s the point, right? What I’ve recently come to realize, though, is that I can’t do anything about it any more than they can. So why subject myself to my own constant, albeit silent, complaining when I won’t subject them to it? It isn’t helping me feel better (although I full admit that the occasional whine does feel good sometimes) and it’s having a pretty detrimental effect on my mood.

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So this year, my goal is to try to be better about just accepting the unchangeable realities of life with chronic illness. This doesn’t mean I’m going to go out o my way to disregard the lines. What it means is that I’m going to try to remind myself when I catch myself complaining that while I did not ask for this, I also can’t change it. I’m going to try to remind myself what works (and do it) rather than letting myself wallow for days when something happens like I end up cancelling plans with a friend. Sometimes twice in a row. I don’t want to make a resolution saying that I won’t complain, because I don’t think that I can keep that. I do think that I can try to remind myself whenever I catch myself whining, though. At the end of the day, there isn’t yet a cure for lupus or fibromyalgia, which means that I’m going to be living with it for the foreseeable future. Learning to accept that reality is a struggle, but I think that the acceptance of reality will relieve some of the emotional strain that comes with chronic illness.

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What are your resolutions this year?

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Breathing Underwater

This post is part of a Patients For A Moment blog carnival that Leslie is hosting. This month’s PFAM blog carnival topic is “What do you do when you can’t keep up?”

 

Keeping my head above water? Almost impossible right now, but it’s gotten a little better. In order to explain why, I need to do a quick (and very, very long overdue) life update: I have been working full time for about a year and a half now. In September, I started a part-time MBA as well, in an attempt to figure out a new career direction. I’m taking 8 credits at a time. This means that in addition to 8 hours a day at work, I have class Mondays and Thursdays from 6.20-8.20 and on Saturdays from 8-11.30. Oh and I have homework. Lots and lots of homework.

 

I spiraled into a flare right before classes started. I think this was mainly due to too many weeks of the constant chaos involved in summer weddings, weekend trips to visit friends in other towns, and hosting family who came to visit us. Well, all that mixed with the ridiculously hot summer weather we had this year. Then my parents were out of town the first couple weeks of school which meant that I was left to do a lot more of the driving, plus all the cooking, cleaning, and laundry chores that my mom and I usually split. It was nuts. The first few weeks of school were miserable. My counts were really off, and I didn’t think to mention the new school thing to my rheumatologist when she called to check in on me. She was really displeased about that, because she said she would have liked to put me on low-dose prednisone for a few weeks to get me through the flare. On the plus side, she does seem to think that I can manage this MBA from a medical standpoint now that I’m through the flare, so that’s reassuring to say the least. I probably should have discussed adding part-time school with her first… whoops?

 

Part of the problem I’m having is that going to class at all these times limits my exercise regimen. I don’t get to the gym enough to get my cardio in anymore. Also, the yoga classes that I’ve been going to for years are Monday/Thursday evenings and Saturday mornings, so I can’t go to any of them. This is seriously problematic. Not enough exercise means that my pain levels spike. Without the cardio, my muscles cramp up more. The lack of yoga is not doing my joints any kind of favors. Oh and my stress levels don’t get managed properly, which is never good for my health. Especially since I have even more stress now. I’ve been trying to compensate by doing yoga at home. This is helping my joints, but it doesn’t seem to have the same beneficial effect on my stress levels that an instructor-led class does.

 

Unfortunately, the exercise can’t be cut any more than it already is…. And I really can’t afford to get any less sleep than I’m getting which is already slightly less than the ideal minimum. This means that, unfortunately, my social life gets cut because it’s the one thing that can go. It isn’t great for my mental health, but there isn’t much else that I can cut. I’ve stopped watching most of the shows that I used to watch, which has helped. I’ve also barely read anything. Now, those of you who know me in real life, or via twitter, know that without my reading time I basically lose it. So this not reading is not so good. Plus, I feel completely out of touch with my twitter friends and I haven’t been posting to this blog nearly as much as I wish I were able to. This month, I’ve been trying for a better balance. I cut another TV show so that I can read more. I run 15 minutes less every run so that I can have coffee or dinner with friends once a week. Dating is out of the question right now without majorly cutting something else. Believe me, I tried. (But that’s a story for another post…)

 

It’s hard to do everything, and there isn’t really any perfect way to do it all because there just aren’t enough hours in a day. I can’t say I’m satisfied with the balance that I’ve struck. I don’t have enough time to keep up with anything, and I feel like I’ve been doing a mediocre job of everything as a result. I’ve been trying to keep my head above water by balancing everything, but it isn’t working. I think I’m going to try being content with swimming just under the surface for a while and see how that goes.

 

 

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I feel…

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…

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