The Remote

Having a serious chronic illness is like having a remote which controls your life, whether you pause it, slow it down, stop it… without actually being in possession of that remote. Something else has the remote and you don’t have a say in when it is used and which button is pushed. You are just left dealing with the consequences.

Lately my remote has been messed with and I would very much like for it to stop. Especially sense it came at a time when I was feeling fairly healthy. Almost guiltily healthy (which is a whole other ranting blog-post). But I was doing well. I had gained enough weight that I was starting to try to lose it (again… whole other blog-post). I wasn’t dealing with excruciating pain. I wasn’t fainting.

I was doing well and living a life that was fairly chronic-illness-free.

That’s when the remote came in though, and with seemingly one push of a button, my life stopped running smoothly.

It started slow at first with stomach pain that just wouldn’t go away. I started modifying my diet, eating safer foods, and was at a new, albeit a slightly more  exhausted: stable.

That stability came crashing down around me 5 days ago…or was it 6 days? I’m still having trouble remembering anything from those days. What I do remember is my heart completely going insane, making it impossible to walk very far. Distances that were no problem before, suddenly had me sitting on the sidewalk gasping for breath. I had no idea what I was doing half the time and couldn’t remember what I had done the other half. I still can’t.

I’m finally coming out of it a week later. Feeling exhausted. Feeling pain. But mostly feeling bitter about this invisible remote that can so easily pause my life, slow my life…stop my life?

Chronic illness

Am I Strong Enough?

I’m a little overwhelmed.

For nearly a year now I’ve pretty much had a break from the “patient world”. I went to doctor appointments but they were rare and only once every couple of months. Each appointment was an “ending” since I was moving. It was nice to be able to go to a doctor with the attitude that I wouldn’t see that doctor again. I almost felt like a normal healthy person who doesn’t have 5-10 different specialists and weird tests scheduled that most people haven’t heard of.

I felt healthy and normal.

So now that I’ve moved and entered into a huge medical hospital community for my health insurance and now that I have a diagnosis to give to the doctors everything has become so much more real. I don’t know how to handle it. I don’t know how to join my two worlds into one. How do you bring the “weak vulnerable patient” world to the “confident hard-working PhD student” world? I don’t know..

Today, for example, I was studying and working on my research and I was freezing. So I took my temperature and it read 96:

I gotta admit though that it is nice to have validation of what I'm feeling..

I gotta admit though that it is nice to have validation of what I’m feeling..

Ok. So I have a reason to feel like I’m freezing. But it’s distracting and I need to take care of it and that’s going to interfere with my work. But whatever. It is what it is. I took a bath to warm up and that worked but way overshot the mark and my temperature went up to 99.4.

Woops

Whoops..

I felt like crap. The sudden change made me feel horrible but I ignored it and went on studying, trying to make up the time I lost with the bath.

But this is the thing that worries me the most: Am I actually really weak? I’m I just using this illness and how poorly I feel as an excuse? Does everyone feel this way and really they’re just so much stronger and better at getting through it and hiding it than I am?

So maybe that’s why I don’t want to combine my two worlds. I’m afraid of being looked at as weak. I’m afraid that people will automatically lower their expectations of me. Most of all, I’m afraid that I really am weak and that if anyone stepped in my shoes they would achieve so much more than I have and could, but with a lot less tears and pain and insecurity.

I think soon though, I won’t have a choice. I’ve entered back into the “patient” world. In less than two weeks I have three MRAs, one echocardiogram, and a cardiology appointment scheduled. After that I have a neurology and GI appointment. I am also supposed to schedule a glucose tolerance test at some point too. It’s a lot and a bit overwhelming with the work that I already have from my “PhD student” world.

At this point, I just really don’t know what to do or how to handle it. I’m taking it one day at a time and praying that everything works out.

I just really really want to be strong enough for everything.

Anony-mouse

Above everything else, with my disease, I am anonymous (or anony-mouse.. as this seems to be my “sick spirit animal” as featured in another post). I feel that if people were to know about my disease and how weak and sick I sometimes feel, I would be viewed and judged as “broken”.

This train of thought brings up a question that I have seen asked many times in the chronic illness community: Would you rather your illness be visible or invisible?

I see many different answers to this question, but the one that seems to be most common is: No, I do not want my illness to be visible.

You see, there is a catch-22 with this question. Having a visible illness means multiple things. You are clearly sick. Which means you are not faking it. No one will accuse you of being a hypochondriac or over-exaggerating your symptoms. While doctors may not know/understand what’s wrong with you, they probably will not say that it is all in your head. But then, on the opposite hand, everyone knows you are sick and they will make many assumptions based on that fact. With a visible disease, you are at the mercy of how people feel they should treat you instead of how you want to be treated. With a visible disease, you can never escape your reality. There is no hiding from your disease or hiding the disease.

And that’s the downside of a visible disease. There are many of my symptoms which are viewed as, at the very least, awkward, and at the most extreme? Disgusting or shameful. Like today, for instance, I went to the bathroom (already uncomfortable?) and when wiping noticed a bright read streak. I looked in the toilet bowl and saw drops of blood floating in it. There are some aspects of any disease which are found to be embarrassing or awkward. This is part of the negative stigma associated with disease.

Much more harmful, however, is that all too often, if someone views you as having something physically wrong, they will often assume that you also have something mentally wrong. So as soon as you present with an illness, your intelligence is questioned.

Working towards a PhD in molecular biology is a demanding and competitive field and I am terrified that any hint of my not being capable of doing something will mean an automatic disqualification from even trying. I am afraid that the strain of working towards a PhD will make my invisible illness more visible. If this does happen, I’m very afraid of how my advisor and fellow classmates will view me.

There may be a day when I am confident enough in my own abilities to not care how others may view my capabilities, but till then, I plan on being anony-mouse.

My Lose-Lose Scenario

One of the challenging aspects of having a chronic illness is the tight rein you have to keep on things. While some people may be able to get away with certain things, I can’t. I need to be careful with most of what I do and try to remain neutral, not straying too far out of the bounds of my health.

So I recently screwed up. I was careless in lab and burnt myself.

The offending culprit right after my act of lab-stupidity.

The offending culprit right after my act of lab-stupidity.

Luckily, by now, I know that “healing” isn’t my strong suit. So I put a ton of neosporin on right after I burnt myself. Covered it the next day at work with a band-aid and added even more neosporin. I thought I was doing good…

A now infected burn. Lovely. Fan-freaking-tastic.

A now infected burn. Lovely. Fan-freaking-tastic.

So when the first round of at home treatment doesn’t work, I move on to the second round: Hydrogen peroxide. It’s my secret weapon. I’m really hoping it works. I would feel incredibly stupid for having done this to myself if I end up needing to go to the doctor.

But, you see, that’s the main problem. Whenever I stray from my limits and end up doing something that harms me, I feel stupid. I feel stupid for cutting myself, missing a doctor appointment, eating poorly, not getting enough sleep, not exercising properly (either too much or too little)…etc. Now, if you noticed, those are things that most people mess up with or do on a daily basis. But for most people, the consequences are less dire. A burn, like mine, on anyone else would probably have healed just fine without getting infected. But because the consequences are more dire for me, I punish myself for slipping up more so than most people would.

I’ve created a lose-lose scenario for myself.

Either I have no maneuverability in my life, or I call myself stupid.

So I’m going to start punishing myself less for making mistakes. I am going to stop thinking less of myself for doing a stupid thing when my progressing illness decided to raise the stakes on me without letting me know. I’ll just take care of the problem and try to do better next time.

Am I My Illness??

Does my illness define me?

This question has haunted me for a while now. I call it a “mirror question”. A question that I’m afraid to truly ask for fear of what I’ll find out about myself.

For a while, I had thought that perhaps I was my illness. Maybe it was something that I had let define me. But worst of all, I was afraid it was something about me that I  liked. I would stay up at night thinking “what would I do if I didn’t have these symptoms?” and to my horror, I felt upset at the idea. So did this mean that I had let my illness define me?

No.

My illness does not define me.

It took me a little bit of time to realize that, but first I had to be brave and finally face my “mirror question”. When I finally thought about it however, I realized that the lack of knowledge about what was affecting me was the thing that was making me upset. This is a bit tricky and a tad convoluted, but I hadn’t quite realized that if I didn’t have my symptoms, then I wouldn’t be sick. All I had considered was that I would have to start all over in trying to figure out what was wrong.

Once I realized that this was my hang up, I was able to answer my question honestly: If I didn’t have these symptoms I would do everything that I already am doing, but it would be a lot more easily done.

So what am I?

I am a Masters student in biology. I will soon be a PhD student in cellular biology (I got accepted into three programs!!!). I work full-time hours. I have many hobbies that I enjoy. I have friends who I hang out with.

So what does my illness add to this equation?

It makes everything so much harder. Those full-time hours? Being a graduate student? Those are so very hard to juggle by themselves, but with an illness? It’s a challenge. And that’s me being modest about how much of a challenge it actually presents. Often, I feel like a failure, because I can’t do it as easily as most people seem to be able to. I have limits. My illness gives me limits.

I would give anything to be able to get rid of those limits.

Working With a Chronic Illness and Limitations

Being able to work is something that comes easily for most people (assuming you can find a job) but is rather difficult for me and anyone else suffering with an illness. The fact that I am able to work 30-40 hours a week while going to graduate school with a chronic illness is something that I am very proud of.

Unfortunately, at times, I feel like this is a perfect example of the saying: “Pride goeth before the fall”. Just because I do work that many hours, doesn’t mean I should work that many hours. Both times I ended up in the ER last semester, I was in my work uniform. Which is not a sexy look…believe me on that… I know without a doubt that the last time was a result of my pushing myself too far. When I stupidly push myself too far, bad things happen like blood and protein in my urine, elevated CK levels, and a slight leaning towards acidosis. I’m not sure why this happens, but it’s definitely a trend now. I can now reliably predict when I will have elevated CK levels. For these things to happen because I choose to work a shift the day after doing a bit of yoga is a tad ridiculous though. Sadly these are the realities of working with a chronic illness.

I didn’t understand this at first. Before I was as bad as I am now, I thought that I could push myself through anything. That hard work and perseverance really did make up 99% of success. I never thought that I could be limited by my body. Exhaustion is one thing, but bloody urine? Muscle breakdown? Those are HARD limits. Those are the types of limits that could start a downward spiral. And then what happens???

I don’t know.

There’s the catch. I don’t know what happens when/if I crash. I don’t even know what a “crash” would entail. Whether I would come back from it or whether it would represent a new limit that I would have to live with. There are so many unknowns with chronic illness. So you have to decide what is worth pushing those limits for. Right now, work is worth it to me. Work represents independence for me. I am able to support myself and live on my own. I am able to make my body do what I want in order to get what I want. That is what work is. I’m afraid that this may not always be the case, but for now I’m able to do it.

guardian angel

5 Realities of Living With a Chronic Illness

Don’t hate me for being one of “those people” but I’m going to jump on the “The Fault In Our Stars” bandwagon here. I know that many people have fallen in love with this book/movie and that even if they can’t relate as well with the characters, they can live through their stories and appreciate it. After all, who doesn’t love a good “sick person” story every now and then? And there certainly has been an increasing number of them coming out lately (personally, I want to watch Red Band Society). They make good stories after all. As long as the average person can put it down or turn it off at the end of the day and return to normal daily life.

For me, however, these stories tend to really hit home. There are so many messages in it that the chronic illness community has been trying to espouse for years now:

  1. We are NOT inspirations for the simple fact that we EXIST. This is the basic function of life. Existing. You might as well find a virus inspirational. After all, they exist without even being alive. Now that’s talent! Seriously though, just because life happened to give me a different challenge than it gave you, and just because you can’t imagine yourself with my particular challenge, does NOT mean that I am inspirational for dealing with it.
  2. We ARE excluded. We are looked at strangely. We are avoided. We are talked around. We are talked about. We are so many things that you THINK we don’t know about. I know why the elderly couple in the waiting room keeps glancing at the strange 20- something young adult and whispering in hushed tones. I know why I’m given the shocked looks when the nurse calls my name and I actually stand up and follow her. I know that my co-workers talk behind my back about all my call-offs and doctor appointments. I know what that worried glance means when I’m sitting or laying on the floor in a public place. As if you’ll actually be required to step in and do something. And how distinctly uncomfortable my pain is to you.
  3. Are we worth it? This is a thought that often runs through our minds every day, multiple times a day. “Great, he has this sick pathetic person as a mate. He must hate what I have become. I am such a burden.” How can we not think that? Doctor appointments aren’t fun. Would you want to go to them weekly? We don’t. We certainly worry that our friends and families don’t either. I go through phases where I just want to hole up and hide. Don’t look at me. I’m shameful. I want to be sick in private. It’s my own personal shame that others shouldn’t be subjected to.
  4. There is pain. There is always pain. I may look at you and say I am feeling fine and dandy and that today is a perfect day…but… that is only because I am referencing it to another day that wasn’t as fine or dandy. A day that was hell and that makes this day look like a warm cheery bonfire. My scales are different from another person’s. If you lived in pain every day, you would start rating a normal 2-3 as a 0 or 1. After all this is the baseline. This is the normal. Also, this goes back to #3. If we are feeling particularly insecure about our illness, we will hide how it affects us.
  5. There is fear. There is always fear. Chronic illnesses are uncharted territories. There is no easy guaranteed course that our disease will take. There is no promises that once A happens, it will lead to B, then C is next…etc. All there is, is a big huge UNKNOWN. And that is freaking terrifying. Many people try to comfort us by saying crap like “well I could get hit by a bus any day” or “We’re all dying”. It. Is. Not. The. Same. I’m facing dying by a lingering possibly progressive, painful disease. I’ll take the bus next life-time.

There is so much involved in being sick and the longer you’re sick, the more there is to deal with. Living with a chronic illness has a huge learning curve and there is a lot to get used to. Often times you are faced with the choice of not telling anyone that you are sick, in order to be treated normally, or telling people and then living with the stigma of “being sick”. That’s not an easy decision to make.

The Spoon Theory: I’m a convert.

I’m finally beginning to think that there may be something to The Spoon Theory. If you don’t know what the Spoon Theory is, I highly suggest reading about it. So many people in the chronic illness community herald it as the best explanation for what they go through with their illnesses and often refer to themselves as “Spoonies”.

For a while I have been very hesitant in describing myself as a spoonie and indulging in the comments and posts that usually involve statements like “I ran out of spoons today” or “Praying for extra spoons”. I think now that this may be due to a form of denial and anger at my illness. In my denial and anger, I refused to play a part in anything to do with the spoon theory. I struggled to believe that taking a shower, getting dressed, taking a walk, or any other normal daily activities could cost me a spoon. It was ridiculous that such simple things could detract so much from my energy as to make me sick. Slowly, I am realizing the truth in the theory however.

Taking a shower does exhaust me. 99% of the time I end up on the shower floor, struggling to turn the water to cold or flopping helplessly against the door in an effort to escape the hot suffocating environment. Often, during these times, I’m losing sight and feeling nauseous and already half way to fainting before I give in and slide down the wall. Getting dressed can also be difficult. At my worse, I have had to sit down in order to put pants on because I could not support myself on one leg. There’s something incredibly humiliating about having to sit down to put on your pajamas while sharing a dorm room with someone. All these things take effort and stamina and a functional working body. Without those things, the activities get slightly more difficult.

I came to this realization one night when I returned home from a meal exhausted and physically sick. Spending my time more often than not curled in a ball waiting for the pain and nausea to subside. This was particularly painful for me since I clearly remembered at dinner thinking to myself “hey, I can eat this! I’m finally on the mend!” Apparently not. I realized that night that I did too much. I stretched myself too thin and I was suffering the consequences. In fact, that has been my biggest lesson last semester. I have limits. Those limits are somewhat more restrictive than what is “normal” and if I don’t obey those limits, I WILL pay for it. Whether through an ER trip or through some horrifying new presentation of my body’s instability and weakness. Believe me, this is a HARD lesson to learn in your 20s.

I guess, now, I measure my days in spoons. Thankfully, tonight, I have a few extra 🙂