Category Archives: blog carnivals/grand rounds

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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Work Series: A Day In The Life

This blog post is part of World Autoimmune Arthritis Day 2014.
6:00am: Wake up. Feeling awful after tossing and turning all night. It snowed overnight, and my pain levels spiked, which led to insomnia.
6:05am: Snooze alarm goes off. Force myself to wake up, and start doing a few daily stretches in bed so that I’ll be able to stand and walk when I get out of it.
6:15am: Drag myself out of bed and proceed to brush my teeth. Stiff fingers haven’t loosened up enough yet, so this proves difficult because I can’t get a good grip on the brush.
6:30am: Take a hot shower. This helps a little, but I don’t have enough time to really soak most of the stiffness out. Take first part of morning meds.
7:00am: Time to leave for work. Luckily I made my lunch the night before. Mom offers to drive, but I insist because she recently hurt her knee and driving on the icy roads might stress it out. We discuss taking the bus due to the roads, but this is not an option because there isn’t a bus available at the late hour when my night class gets out.
9:00am: Finally reach work, an hour late. Achey and exhausted after getting little sleep and the long drive. Make a cup of tea and plug in my heating pad while my computer starts up. Take remaining morning meds.
9:30am: Heating pad starting to release the tension in my lower back a bit. Have thawed out and getting down to work. Managed to eat my apple (breakfast) and the cup of tea has revived me a bit.
10:00am: Get called to another part of the building. Spend the next 2 hours on my feet running around the building. Feet hurt despite sensible shoes.
12:00pm: Lunch time. Too tired and pain levels too high for hunger, but make myself eat a bit. Manage maybe half of my lunch. With food in my stomach, able to take painkiller.
12:30pm: Nosy co-worker comes in for something work-related, then wants to know why I have a heating pad. Make a joke about keeping warm in this frigid winter, because am not comfortable talking about my illnesses at work, especially with gossipy co-workers who I barely know.
1:30pm: Try to get some work done. For once, grateful that at least some of my job involves just sitting still and working at a computer, because don’t feel up to running around the building some more.
4:30pm: End of the normal workday. Happy hour planned for officemate’s birthday. Feel like I’d rather just have some time to myself to rest before class, but feel that it’s important for my work relationships as a large part of the office is going. Attend but don’t drink because have taken painkillers and have to go to class in a bit. Pretend I’m feeling well, because I don’t feel like answering questions. Don’t want to bring down the group mood, and most of the staff don’t know about my illnesses to begin with.
5:30pm: Leave happy hour and cross campus to classroom building. Pick up a cup of tea from a coffee shop to help me get through class.
5:45pm: Time for class. Snack on some nuts and dried fruit with my tea. Foggy brain makes it hard to focus.
9:05pm: Class finally ends. I’m exhausted.
9:30pm: Finally get out of the parking ramp due to all the students leaving campus at the end of night class. Drive home is painful as knee is stiff from long drive in the morning. Mom took bus home at the end of the workday.
10:00pm: Reach home. Try to eat a bit of dinner so that I can take my nightly meds. Wish for a hot soak in a bath, but fear I’ll fall asleep. Take a hot shower again instead.
11:00pm: Lights out, finally. Fear another night of pain-induced insomnia.

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Book Review: In the Kingdom of the Sick

This post is part of a Patients For A Moment blog carnival that Duncan is hosting. More specifically, it’s part of Duncan’s “ILLiteracy Project” carnival.

(Note: Duncan chose the book and has asked that we focus on reflection and not on the book’s topics which he will outline.)
3.5 stars
Before I can lay out my thoughts on In the Kingdom of the Sick: A Social History of Chronic Illness in America by Laurie Edwards, I must make a confession. I have a masters degree in public health. This means that I have studied this topic in a lot of detail. The interplay between the ill and society was a topic of strong personal interest to me long before I identified as one of the ill, and I have therefore done a lot of reading on the topic even outside of my classes. Obviously, this colors my view of a book like this, so please take what I say with the appropriate grain of salt.
I had mixed feelings about this book. This is a topic that I have a lot of interest in, and yet I found that it rambled on a lot. Contrarily, I would have liked more detail, because while she covered a lot of years and a lot of changes, the detail in each of those areas wasn’t sufficient to satisfy me. (I will freely admit that it probably would have been discouragingly long had she actually elaborated that much.) However, I think that this is a good introduction book. If you find the topic of the relationship between society and chronic illness – no matter whether that is a general interest, an interest due to your own experiences of living with an illness in our society, or the experiences of a loved one – of interest to you, then this might be an interesting book. This is true if you are looking for a comprehensive historical timeline or a general introduction, or are interested in the shifts over the years. If you are interested in a specific interplay or illness, then this probably isn’t what you’re looking for. Edwards hits on an extensive list of issues and topics, which a reader could go look into in more detail if needed. There is a comprehensive bibliography in the back. 
Edwards fights chronic illness herself, so I was expecting this book to hit me on a more personal level. The cases shes uses to demonstrate and detail the topics were compelling, but it didn’t feel like her own experiences really came through. That being said, her description of what it’s like to be suffering but unable to get a diagnosis certainly struck a familiar chord with my own experiences. I appreciated the cases, because public health is often a lot of dry statistics, with the personal experiences lost to the sands of numbers. It’s validating to see that my own experiences with and views on how society views illness are supported by Edwards’ extensive research (both the technical and the personal testimonies.) More specifically, I liked the way she interwove the stories with the history she was trying to present. She gave the stories context in the historical social timeline, which was interesting to me from an academic point of view, but less so from a patient point of view. In some ways, it’s a validation. It says “See? This patient wasn’t crazy! Society really did believe/act in ___ manner!” On the flip side, I felt as if the feelings in the story were marginalized in the process. I’m sure she didn’t intend that, and most people will probably disagree with me, but it felt that way to me. I think it felt that way because the narrative line of the story got a little muddied. Of course, the topic is the social history of illness in the US, with the stories used as illustration, so I guess that’s excusable.
Edwards also did a great job with overarching themes and the changes provoked in them as society, science, and public policies changed. This provides the reader with a chance to put some thought into, “Okay well what we have now isn’t stellar , but how much worse was it in the [enter decade of choice here]?” or “Was it really better in that decade? Is it really better now?” and so on. I also thought that she had some thought-provoking moments in the discussion of how the realities of living with chronic illness could run contrary to the goals of major movements like Women’s Suffrage simply because a patient was unable to claim the rights they were fighting to receive due to the limitations of illness. Most interesting, for me, was the discussion of the Disability Rights movement and how that didn’t always line up with the needs of chronic illness sufferers. There is, to this day, a lot of debate over the definition of “disabled” and who should qualify for the definition and therefore the rights afforded to it. The discussion of chronic pain was also well done. She wasn’t withholding any punches, and I liked how she included the contradictions involved in the judgement felt by people who suffer from chronic pain. Pain is, first of all, by its very nature un-measurable, because everyone’s perception is different. This is compounded by the fact that if you stay in bed, then society likes to think you’re lazy and you’re in pain simply because you won’t push yourself through it. Meanwhile, if you drag yourself out of bed, you not only aggravate your pain but are also judged to be exaggerating, because if you could drag yourself out of bed, then you couldn’t possibly be in that much pain could you? 
As a patient, I think there was certainly a lot of validation in reading this book. It’s thought-provoking and it does give readers a lot to think about. I think people who have no personal relationship with chronic illness (their own or a loved one’s) but an interest in the general topic could get a lot out of this book. There are a lot of places where I got pretty indignant about the realities of the society-chronically ill relationship over the years, and I think that speaks to the fact that it was well written enough to engage my emotions. I liked the emphasis on the fact that illness is a natural part of living. Granted, the idea of chronic illness, especially at a young age, is not part of our societal construct, but illness itself is part of human existence. We are born, we live, we are ill, we die. Environment and genetics certainly play roles in this, but they aren’t the only things that are involved. A person healthy enough to take part in long distance bike races today could be hit by a car tomorrow and have chronic pain for the rest of her life. The line between the kingdom of the well and the kingdom of the sick is paper thin. I’m choosing to skip a discussion on the psychology involved in the human denial of illness, simply because it would take multiple blog posts to cover with any semblance of adequacy.
 
The one thing that kept leaping out at me, though, was this fact that despite the over 150 million chronic disease sufferers in America (there are those pesky public health statistics again!), we don’t have a unified face. Our illnesses often keep us restricted to our homes or even our beds. However, with the advent of the internet, I believe that this is slowly changing. We have blogs. We have forums. We have Facebook. We have Twitter. We have YouTube. We don’t have to be isolated anymore. I think Edwards made a good point with that – we don’t have the voice we need to have within the world of health care and public policy, let alone society at large, because we were never able to truly rise up before.  We can now though.

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Book Review: How to Be a Friend to a Friend Who’s Sick

This post is part of a Patients For A Moment blog carnival that Duncan is hosting. This month’s PFAM blog carnival topic is “What is your favorite book about illness?

(Note: Those of you who interact with me via twitter, etc know that I read voraciously. This means that my favorite book about illness today may not be my favorite book about illness tomorrow. I’m going to try to post book reviews from time to time of books that I have loved or not loved and why. However, for the sake of this blog carnival topic, I decided to pick up a book that was recommended to me, but I hadn’t read yet. As such, it isn’t my favorite, but I thought it was worth writing up a post about. I’m excited to see what other bloggers chose as their favorite books. I think my to-read list is going to be growing considerably in a few days…)

3.5 stars

The book How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin was recommend to me by my therapist when we were discussing how hard it is sometimes for me to be a good friend and equally to deal with unsupportive friends/family. Pogrebin started thinking about this topic when she was fighting breast cancer and noticed the varied reactions of her friends and family. The book is actually a collection of short stories from people with varied experiences intermixed with Pogrebin’s own story. What I liked about the book was that she included the reactions to friends’ behavior as well. There are Dos and Don’ts lists and varied suggestions for how to rephrase common questions that are inadvertently offensive or difficult to answer. I chuckled over her commentary and lists of commonly heard comments and questions, many of which I’ve heard myself. A lot of this advice feels obvious, but it’s easy to forget in the stress of seeing a loved one fighting what they’re fighting. Moreover, I think different people will get different things from this book based on what their experiences have been so far and what sort of guidance they are looking for. It did seem a bit long, but I think that’s partially because it’s clearly geared to be helpful even to people who have never had an ill family/friend before.

I think the trick to reading this book (for both patients as well as friends/family) is to try to keep an open mind, remember that everyone’s needs are different, and not to get too offended when you disagree with something that Pogrebin or one of interviewees opined. The book is theoretically aimed at the friends/family of patients, but I think patients can get a lot of out of this book as well. One of the things that made this book feel more appealing for me was the inclusion of incidents in which Pogrebin felt she had failed her friends/family in terms of offering support. And, in truth, even a person fighting a chronic illness can be inadvertently unsupportive of someone else fighting the same illness, because the two people have completely different needs from their friends. There is no one size fits all answer to the “How do I be supportive?” question, and this book drives that home.

As a patient, it’s nice to hear stories that show me that I’m not the only one that has struggled with incidents where friends/family that I rely on were unsupportive. However, reading through these stories was also a great reminder that people generally don’t intend to be unsupportive. They want to help, but they don’t know how to help ME. I emphasize that because one thing that struck me as I read this book was that with so many people fighting so many varied illnesses, especially when combined with how much each person’s needs vary from the next, it’s entirely possible that friends/family are doing what they were told was helpful and supportive for someone else. If you’re told that it was helpful once, it stands to reason that you would offer the same help/advice again. From a patient’s point of view, one of the best things that I got out of this book was a reminder that I need to be clear about what I need from people. It isn’t fair to always assume that they’ll be able to guess, especially if what I’m going through is totally beyond the context of their own experiences or that of their other close friends/family. Reading what worked for other people gave me some new ideas of how to direct my friends/family towards what is actually helpful, hopefully without making them feel hurt or offended, because I know deep down that they’re only trying to help.

For friends/family looking for ideas on how to be supportive, this is a really good place to start. Reading different people’s experiences might provide a more detailed and diverse view of what a patient is feeling in these circumstances. This book may also provide some guidance of what is commonly found to be offensive. Of course, what one patient in the book found helpful might be totally offensive to your own loved one. However, the book can only provide a limited amount of guidance here. This is what I would suggest: I think that the lists of Dos and Don’ts are a good place to start. Pogrebin also included helpful re-phrasings of common questions/comments. For example, “What are you feeling right now?” instead of “How are you feeling?” or “I can only try to imagine what you’re going through.” instead of “I know just how you feel.” These are a good start, but at the end of the day I think that most people would be open to your sitting down and saying “Hey, I can’t begin to understand what you’re going through, but I really want to be supportive. Here are the things I’ve read, but I don’t know whether they apply. What would be helpful for you?” Remember, though, that if you ask and then don’t follow through, that person is going to be even more confused. The fact is, if you’re reading blogs and books to find out what you can do to be helpful, then you’ve already realized that you don’t have the information that you need. Blogs and books like this one can get you part of the way there, but you need to be able to customize that information to your loved on. There’s only one person who can tell you what you truly need to know, and just sitting down and having an open conversation shows how much you care and makes it possible for both of you to be happy in your friendship.

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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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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.

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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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