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…

Advertisements

7 Comments

Filed under advice/suggestions, coping, introspection, rant

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.
para
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.
para

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.

para

para

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.

para

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.

para
What are your resolutions this year?

2 Comments

Filed under coping, introspection

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.

 

 

4 Comments

Filed under blog carnivals/grand rounds, coping, introspection, rant

everything has changed…

This post is part of a Patients For A Moment  blog carnival that Lorna is hosting. This month’s PFAM blog carnival topic is “change.” 

When I first got diagnosed with lupus at 16, after 6 months or so of testing, I got really lucky and the first round of prednisone pushed it into remission. The doctors were surprised, but obviously really pleased. As a result, though, I didn’t really have to learn to live with the condition until it flared back into existence 5 years later. For the purposes of this post, I’m going to focus on the changes that have occurred in my life from that point forward.

To say “everything has changed” might sound a little melodramatic, but the truth is that very few things are the same as they were before. Every hour of waking time is different from what waking time was like before. Sleeping hours, when I manage to sleep in the first place, are also a whole different situation. My relationships – with friends, family, and potential partners – have all changed too. People think that dealing with a chronic illness means just dealing with the physical illness and maybe its mental effects like the frustrating brain fog that makes me forgetful. Oh and maybe the inconvenience of swallowing lots of medications.. but there’s a lot more to it than that.

First there are all the things that I can’t do because they’re too physically challenging. Contact sports are out, and I can’t run because it makes my knees swell so anything that requires running is out too. I get tired too easily to be on my feet all day, but sitting in one place for hours is rough too which makes long distance travel difficult. This means travel is hard in general (for many reasons, of which this is only one). This impacts hobbies and outings with friends as well as travel and family events.

Changes in weather prove to be a huge problem too.  I think sudden changes in weather are a problem for everyone to an extent.. outdoor plans get cancelled, you suddenly need an umbrella, or a hat, or a sundress, etc. However, changes in weather for me can be debilitating. Rainy days make my joints achey. Extreme heat or cold also leave my body aching and often drain my energy. Plus, sudden changes in temperature have similar effects.

Then there are the changes to life plans. When I went into that flare, I was in medical school. I was forced to leave that program, and won’t be able to go back to medical school. So now I’ve had to reassess the rest of my life from a career standpoint. There are some careers, like medicine, that I can’t manage not only because the rigors of the education required to get there are more than I can handle, but also because the hours and time on my feet involved in the career itself wouldn’t be possible.

Even eating isn’t easy anymore. With all the meds that I take, I have to arrange appropriate food at appropriate times to coincide with not only the timings of my medications doses but any requirements for what they need to be taken with. I also have a lot of trouble with nausea, which makes eating hard. Sometimes my pain levels contribute to the nausea too. Then there’s the fact that gastroparesis makes it difficult to eat much in the first place, and end up throwing things up fairly often. Plus there are eating restrictions – like I can’t have soy milk.

It’s changed my relationships with my family members too. Dealing with a child’s illness is an awful lot for a parent to deal with, and my parents sometimes deal with denial or denouncement. My sister tries to help when she can, but sometimes too many offers of help can be frustrating too. I feel like a burden on my family, which is something I never had to deal with before.

Making plans with friends is hard, because there are a lot of things that I just  can’t do anymore. Oftentimes, I don’t know for sure that I can make it until the last minute which means that I flake out without much warning. While most of my closest friends are understanding overall, it still strains the relationships. I feel unreliable, and it’s hard to make plans very far ahead.

Having a chronic illness also has a huge impact on my love life, or lack thereof. Dealing with all the ins and outs of a chronic illness is a lot to ask of a person who doesn’t know you all that well yet. It makes dating hard (see plans with friends above). It also makes it hard when you start talking about what a life together would be like. I’ve found that it’s a deal breaker for a lot of people. And while I know I should be holding out hope for that one person who won’t care, it’s a frustrating experience all around in the meanitme.

All in all, pretty much everything has changed.

2 Comments

Filed under blog carnivals/grand rounds, community education, introspection, rant

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…

3 Comments

Filed under blog carnivals/grand rounds, community education, coping, introspection

PFAM: How do you recharge?

*GASP* A new post! I can’t believe how many months it has been since I posted anything. Sorry I have been MIA lately, I know I need to post an update soon. Life has been throwing too much at me to handle already, and I just haven’t been able to find the time and energy to blog. I’m doing ok, and will post an update as soon as I’m able to. In the meantime, Duncan over at http://duncancross.net/ sent me an email last week asking me to submit a post for this month’s Patients for a Moment blog carnival. This week’s topic is “how do you recharge?”  Thanks for jerking me out of my blog somnolence, Duncan!

 

How do I recharge? That’s a good question, because sometimes it feels like I’m not managing to recharge at all. This question is also awfully broad in scope – are we talking mental or physical recharging? There are some things that I find work for me (sometimes)… not always, not always completely. A lot of my efforts to recharge are grounded in my efforts to let go of my troubles in the first place.

So, here we go, in no particular order:

 

  • Yoga/Meditation.

I try to go to yoga classes at the gym, because I feel like I get more of a relaxation when someone else is leading the class. I don’t have to think about anything that’s going on in my life – just do whatever stretches/breathing I’m told to do. I think I disconnect from the troubles in my life best when I’m in a yoga class or a guided meditation. Of course, this option requires me to be physically able to go to yoga that day. Meditation is easier since I can do it lying down just as well. Online/DVD/CD versions of “instructors” work well for me too. Basically, I just need someone else to take the reins and tell me what to do so I can let go of even that for a little while.

 

  • Books.

I’ve always been an avid reader, but sometimes I think that my chronic illnesses have made me even more inclined to pick up a book. If I can lose myself in someone else’s life then I can focus on their problems and forget about mine for awhile. Sometimes,  I sit for hours – and then get a shock in my joints when I go to get up (whoops). For those few hours, though, I was able to forget about everything and I find that temporary release of those problems help me recharge.

  • Movies/TV.

These, of course, are similar to books. For me, this doesn’t work nearly as well. I find my mind wandering off, and I just can’t focus as well. I think that might be more of a preference and habit thing, and I know that TV and movies work well for a lot of my friends. When my brain fog is really bad, I much prefer movies and TV because I don’t have to keep track of such a complicated plot and numerous characters.

 

  • Aerobic exercise.

This one, like the yoga, depends on my physical ability that day. If I’m capable, even a few minutes on the elliptical seems to be worth it for me. The exercise releases endorphins, and that really helps. There’s also something about sweating away the day’s troubles that helps me to let go of things that are eating at me. It’s almost as if I sweat them out of my mind.

  • Pretty Plants.

Much to my mother and grandmother’s chagrin, I am absolutely not a gardener. Even when gardening wouldn’t have required all the sun-proofing procedures that being outside does now, I just never enjoyed working out in the garden. However, pretty plants seem to help my state of mind a lot. (Shocker, right?) On a philosophical level, I think that the plants remind me of seasons, and that things get better and worse in cycles. It’s a nice reminder that even if today is an awful day, tomorrow might be better. Or the next day. Or the one after that. …. Eventually, things end up on an upswing again. Plus, they’re just … pretty!

 

  • Vacations.

I find that the occasional vacation day helps me out a lot more than long vacations do. I’d rather have a 3-day weekend every couple months so that there’s something to break up the tedium, something to look forward to. That one day goes a long way to reviving flagging spirits and low energy levels. To take a week off, I have to work every day for months on end, by which time I’m completely worn down. Of course, if I had enough vacation days, I’d do more of the weeks off.

  • Tea and a cuddly blanket.

Ok, this sounds silly … but somehow if I wrap a cuddly blanket around myself and make a nice cup of herbal tea it tends to make other things sort of soften around the edges. They don’t go away. I’m not distracted enough the way I am with a book, but they don’t eat at me quite as much. Of course, this is best paired with the book, plants, music and/or TV/movie option.

  • Music.

This is such a huge one. I can’t even be more specific, because the type of music and all depends so much on what I need and why I need to recharge. Mental or physical strain? Do I need to be social or lock myself away to achieve it? Either way, music is pervasive and with the advent of wonderful little mp3-playing devices, I love that it’s always possible to get away from the world for a few minutes as needed. It’s my easiest, most flexible option.

  • Group/friend therapy.

I’m very lucky to have reliable friends – both in real life and in the internet worlds who are always around to support me. Sometimes there’s nothing that works better than to discuss life’s trials and tribulations with someone who can be supportive and cast perspective. My friends always know what I need to hear – and aren’t afraid to tell me even when what I need to hear isn’t necessarily what I want to hear. Even when nothing is particularly wrong and I’m just feeling low, a lunch/dinner/coffee/skype date with a good friends always lifts my spirits.

 

  • Treats.

I’m not a big eater. The gastroparesis doesn’t help this at all. Plus I’m (still) trying to lose the prednisone and lyrica weight, so I don’t tend to indulge much in treats. It seems silly but treats, either comfort foods or something so decadent I that I rarely indulge in it, are often all I really need to put me back on feet.

I’d love to hear what you all do to recharge. I’m always looking for new, wonderful ideas!

I promise to get an update post up as soon as I can manage it. Sorry for my absence, friends.

1 Comment

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

Tales from the Emergency Room Crypt: Spinal Tap

The lovely Selena (you can find her at Oh My Aches and Pains) is hosting a blog carnival. With Halloween on the way, she has aptly chosen the topic “The Fright Files: Stories of Medical Mistakes.”

I think almost everyone who has been diagnosed with a chronic illness has at least one horrifying story of how something has gone majorly wrong. If we spend that much time getting complex medical care is it statistically inevitable that something is bound to go wrong at some point? I hope not, but with diseases that require a lot of juggling and refuse to follow a standard pattern…. That being said, many of our experiences, like mine, can be chalked up to nothing more than negligence or disrespect for patients.

When I first became ill, my lupus completely failed to present like a textbook case. This is a common occurrence, which is why so many people are not diagnosed for years on end. In any case, one day I found myself so intensely dizzy that I couldn’t stand up on my own without tipping over. My mom freaked out when this wouldn’t stop, and as it was after hours by then, rushed me off to the Emergency Room.

We waited for hours to be seen, but were eventually led back to a room. A doctor came in and asked a few perfunctory questions. Then she said  she needed to do a lumbar puncture to see if the spinal fluid could give us any answers. I thought she’d tell us to go see someone in the clinic the next day, but she said that she didn’t want us to wait that long so she would do the procedure herself – immediately.

I don’t know if you’ve ever had a lumbar puncture before. I was told to basically curl up into a fetal position. The first step was to numb my skin. Then more anesthetic was injected along the path that the needle would go. As that anesthetic went in, I informed them that my skin hadn’t numbed since I could feel that needle. I was told that sometimes it takes awhile for the numbness to set in. I had to wait a bit for the numbing agent to work, and then the doctor came in to do the procedure.

That anesthetic didn’t do a damned thing. I felt that huge needle boring into my spine.

It hurt. Like hell. A needle going into the spine is a completely indescribable feeling. As I write this, I can still feel that needle going in and I’ve gotten all squirmy. I’ll never forget that feeling as long as I live. The doctor just told me shush and that I couldn’t actually feel it. Apparently, I was just scared and so I thought I could feel it. Right. I was awfully tired of this “it’s in your head” sentiment as I heard it often in the days leading up to my diagnosis. I told her very firmly this was not the case, and that I really could feel the needle going in. She told my mom that was I was just scared. She asked my mom to hold me still and quiet me down so the doctor could focus on the procedure.

Now, I am a strange person who can’t scream on command. I’ve never been able to scream on command, and as far as I know I have never before or after screamed at all. Oh but at that moment I was screaming bloody murder. To be fair, it kind of felt like I really was being murdered. Another doctor came rushing into the room to see what was happening. I managed to tell him in between sobs and whimpers. It was not pretty.

It turned out that the doctor who had been treating me was a resident. The new doctor, who turned out the be an attending, had me checked into the hospital to do the puncture the next day.

When I was checked in, I told the attending on that floor that I didn’t want that resident anywhere near my room. She worked in the ER, so there wasn’t really any reason why she should be treating me once I was checked in but I wasn’t taking any chances. I guess this attending (and perhaps the one in the ER) must have logged my complaint somewhere. The resident showed up the next day absolutely livid. She informed me, in a tone that belied her words, how sorry she was that the procedure had not gone well. The anesthetic had been given properly, so she wasn’t to blame. However, it was a hard procedure, and I shouldn’t have made such a fuss, because now she was in big trouble. Didn’t I know that a student has to learn?

I informed her that learning to do something on a patient shouldn’t mean torturing the patient. Moreover, if she wants to learn to treat patients, she ought to learn the basics first: listen to your patient, damnit! She should have listened to me when I told her that I could feel it, instead of just shushing me. My complaint wasn’t about how she did the procedure, it was that she had no respect for me as a patient. She ought to learn that first. I didn’t mince words. She flounced out of the room in a huff. Sometimes I wonder whether she ever got anything out of that experience or she just wrote me off as a horrid patient that got her in trouble for no good reason. One can only hope..

In any case, they finally did the procedure under general anesthesia, because there was no way in hell that I was going to allow that procedure to be done while awake. Ever again.

After all that, the results from the spinal fluid came back negative. Figures.

13 Comments

Filed under blog carnivals/grand rounds, insensitivity/ignorance, rant