The Real Answer to the Question “Are You Feeling Better?” When Living With Chronic Illness

“Are you feeling better?”

A question that makes me cringe. It’s an awkward and uncomfortable question that, unfortunately, is asked frequently by friends and family members of those who are chronically ill.

I personally do not get upset with the people who ask me this. After all, if one does not experience chronic illness first hand, can we really expect them to understand? However, I was asked this question by classmates of mine for the first time, and I have to say, it was one of the most uncomfortable encounters I have had with my classmates to date.

And I thought and thought about this.

Why is that question so darn awkward to answer? Why does it make me stutter over my words, not knowing what to say, almost as if I were a deer in headlights?

Because I don’t want to tell them the truth. And the truth is, no I am not feeling any better. Sure, I may not be feeling as bad as I was that day I missed class, but I am never 100%. My battery is never fully charged. But that’s just how I live. In fact, I don’t even know if I really remember what normal feels like. This is my new normal. I live with this fatigue every single day. Little things make me tired. Doing nothing makes me even more tired. Sleeping does not cure the fatigue. In fact, it makes it that much harder to get out of bed. My heart rate jumps when I stand, I get dizzy, my legs feel like spaghetti noodles. I have learned to live with it, and I continue to learn how to best manage each day. And you wouldn’t guess that I struggle like this, because I show up with (most of the time) a smile on my face. I talk and engage in conversation. I laugh. I participate. But the effort it takes to just do these things is more than you know. I push myself.

Of course, this is too much to say in brief conversation. Does anyone really want to hear the truth anyway? Even if they did, the effort it takes to verbalize all of this is too great. So, I am writing it down. I am much more cohesive with my thoughts when I write than when I speak. Words seem to escape me when I try to talk, yet another symptom of my chronic illnesses.

So, to truthfully answer everyone’s questions that come my way about if I’m feeling any better, the answer will be no. The likelihood that I will actually say this is slim to none. You can expect a big old “yes” to come out of my mouth, but in case your wondering, that’s not accurate. It’s just easier because it uses less energy, and diffuses the awkwardness from the situation. I appreciate the thoughts and intentions behind this question, as I believe they are usually good ones. I just have not figured out how to live like a healthy person in a sick body, and I don’t know if I ever will.

 

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An Open Letter to the Doctor Who Believed Me

Dear doctor,

I am so glad that I was able to get an appointment with you. I am not sure you are aware of the countless doctors I have been to that have not known what to do with me, or how to help (if they even believed me at all). I am not sure you are aware of the tears I have shed due to doctors thinking that my diagnosis is not valid. I have let other doctor’s beliefs and personal opinions effect me so deeply that I started questioning myself and my own sanity. I am not sure you know what that is like, but I do know that you can and want to help. I know that you are the right doctor for me, because you aren’t afraid of me and the complexities that come with my illnesses. You are not invalidating my experiences, and you are not brushing off my symptoms. You are not putting your two-sense in where it does not belong. You are not questioning and doubting my diagnosis. You are not giving up.

I have had many doctors dismiss me and my struggles. I have had many doctors make comments when they do not truly know or understand my illness. I have heard “that won’t really affect you unless you become pregnant.” I have also heard “that diagnosis is likely not valid. You probably received a false positive.” Then there is my personal favorite, “you aren’t severe enough. We can’t help you.”

Okay.

During my appointment, you looked me in the eye and held up the results from my muscle biopsy stating: “THIS is real. This is not in your head. You did not make this up. This stuff is real.” I don’t know if you realize just how grateful I was for that moment of genuine reassurance. Yes, the doctor who diagnosed me told me it was real, but when you have subsequent doctors telling you that you are fine, that it is no big deal, or that you are making it up, you start to believe it. At that moment, I believed you. I believed in the doctor who diagnosed me. I believed in myself. I heard what I needed to hear and said in the right way. Thank you for spending over an hour with me, explaining my illness in a way that I could understand. Because let’s face it, a lot of it has gone over my head. I know the very basics and that is about it. Thank you for taking the time to show me results that I never saw. Thank you for being thorough, and for embracing patients who have been seen and labeled as a challenge. We need more doctors who do just that.

Sincerely,

a hopeful patient

 

 

When You Are Too Sick To Be Well, But Too Well To Be Sick

Some people may not consider me sick. Heck, half the time I don’t consider myself to be sick. Sure, I have all of these diagnoses; too many to count with mental and physical illness combined. But sometimes, that is just not enough. Often times, I feel like I am stuck in this limbo between being sick, and being normal.

Too sick to be well, but too well to be sick.

When I was first diagnosed, I was much worse off than I am now. My world came crashing down with my first and only hospital admission where I stayed for a week. Due to severe dehydration and Dysautonomia combined, I was really struggling. I struggled to walk, struggled just to make it 5 steps to my bathroom. I was shaking, dizzy, weak. When I was discharged, I was not much better than when I was admitted (minus being rehydrated). It was difficult getting around. I used a walker and a wheel chair much of the time. I spent the majority of my time in bed, sleeping or just laying there with heating pads. But then something happened. Slowly, I started regaining my strength. Maybe it was because I said to myself: “enough is enough!” I started pushing my body just a little harder. I signed up for classes, I slowly incorporated more activity into my life, I brought my puppy home who has been the biggest blessing. There was no treatment that kick started this improvement. It was slow and gradual, and for the life of me I can’t pinpoint how it happened. But isn’t that a defining feature of chronic illness? Disease symptoms that wax and wane in intensity throughout someone’s life?

I am not cured. I am not in perfect or peak health condition as I used to be. I still struggle after showers with tachycardia and low blood pressure. I still struggle to stand for more than 5-10 minutes at a time. I still have difficulty walking around the mall or grocery store, and often need my walker for these tasks. I still feel as though I could easily fall asleep during the day. I still get tired and fatigued. But at the same time, I am in school part time. I am a grad student. I go to my internship for 15 hours a week. I work part time from home teaching children English. I do all of these things, more than what many people can do with chronic illness. And sometimes, I feel as though I don’t belong in the spoonie community. That I am too far along, ahead of the game. I don’t go to doctors multiple times a week every week. I don’t have access to IV fluids. I don’t have many hospital admissions. I don’t have much testing left. I am in the stage where, yeah, we know what’s wrong, but I just have to keep doing what I’m doing.

“Keep plugging along.

Keep taking your medication.

Conserve your energy.

See you in three months.”

Sometimes, I don’t have all that much to talk about or update my spoonie friends on (particularly on IG) because I’m stagnant. Sure, I go to physical therapy and work on my dietary changes, but life really isn’t all that exciting right about now. Which, don’t get me wrong, is good. I am lucky that I am not worse! But sometimes, I feel like I have to work extra hard just to keep up with my counterparts and fellow classmates. I am constantly going, running, trying to keep up with people who do not have chronic illnesses. And it is so hard. It is a tough situation to be in. Because the truth is, I cannot do all that other people my age without chronic illness can do. I am still sick. I still am dealing with symptoms. But I’m not in the hospital. I’m not on my death bed. Heck, I’m not even in bed at all some days (minus the days I am free of obligations, lol). So honestly, I don’t know where I belong. I don’t know where I fit in. I don’t know where I should focus my energy, on my life with chronic illness, or my life without chronic illness. In so many ways, I am still dependent on other people in several areas of my life. I see my classmates living alone, supporting themselves, and I feel guilt over not being able to do so. I kick myself for being so far behind, because if I am well enough to do what other people my age are doing, why am I not there yet? Why do I feel as though I am running to keep up?

I know why.

Because I am sick. But not sick enough. I am well. But not well enough.

I am in limbo, bouncing around between being sick and being well, not sure of where I fit in.

But I know I am not the only one in this situation. And that is what I need to continue to remind myself. That, and giving myself grace.

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Living Our Best Lives with Illness

Chronic illness. Two words that represent anything but fun and joy. Rather, those two words are the epitome of pain and suffering.

Those with chronic illnesses know that following a diagnosis, and even before one receives a diagnosis, life can be utter hell. People’s once happy, fun-filled, and busy lives gets turned upside down. Sometimes in the blink of an eye, other times it is a slow, gradual process. Both of which are equally as painful and devastating.

But – we, as chronic illness warriors have two choices.

  1. We can wallow in our pain and feel sorry for ourselves.  Or
  2. We can make the most of our situation and find ways in which we can feel a little better and live our lives to the fullest – WITH illness.

Now, I don’t mean for this to sound harsh. Believe me, I am fully aware that there are varying degrees of chronic illness, and some of us are in excruciating pain every day or bedbound. I was once house bound and spent most of my days in bed. It is not fun. It is crushing. You feel as though you are a sack of potatoes not able to do anything or contribute to society. You wonder, what is the point of my life? 

But I am here to tell you that it may not always be that way. In fact, it probably won’t always be that way. Many chronic illnesses wax and wane in severity. Different treatments, medications, IV fluids, homeopathic options, will allow you to eventually find something that works. Even if it helps just a little, there will be some improvements made at some point in your life. Maybe one day you will be able to get out of bed, leave the house, do some form of exercise, engage in physical therapy, or meet friends at a coffee shop.

This past weekend, I took a road trip with my boyfriend. We went to the mountains to go skiing. Last year was the first time I tried skiing at my local ski club in three years. I was only able to do a couple runs, and I was exhausted, but I was so proud and ecstatic with that accomplishment. My trip this past week was a blast. I was at the ski resort for a total of 4 hours. We had to make lots of stops along the hill, and go in to take a break, but I still had the best time and was satisfied with all I was able to do. I pushed my body no doubt, and of course I payed for it later that day and a few days after the fact. But I did it. I had fun. I enjoyed myself. And for the first time in a long time, I felt normal. Even walking around the town with my walker the day after skiing, I felt alive. Sure I had to use a walker and was the only one wandering the town with an assistive device, but because of that device, I was able to do what everyone else was doing.

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What I really want to get at here, is that we can still have fun. We can still enjoy life. We can make the most of this life and practice gratitude for all that we do have. Sometimes, you don’t always have to be grateful it isn’t worse. We are allowed to have bad days. Believe me, I have my fair share of them with chronic and mental illness. But it does help to remind myself of all my blessings, and that somewhere out there, just miles within my little radius, some people have it worse. There is so much suffering in this world. Every one of us struggles. Every one of us suffers. Every one of us experiences some sort of pain. But we don’t have to let our pain define us. Chronic illness friends: do everything in your power to lead the life you deserve. Try different treatments, work your muscles if you can, do things that YOU ENJOY. Take up knitting or crocheting, draw, paint, get out of the house when your feeling up to it, meet a friend, watch your favorite television shows, take a bubble bath, write, connect with others via social media. Live your best life, because it is so possible. We may not be able to do all we once did, but we can live life to our fullest despite our conditions, and with illness.

Getting My Head Out of The Sand

Some of you may know that I have an eating disorder. Or should I say, am in recovery from an eating disorder. Some of you may not have known. Well, now you all do. Cats officially outta the bag!

Now, I liked to think that for the past year or so I haven’t had an eating disorder. I have not really struggled with eating or counting calories. I can’t really exercise anyway so that’s out, and body image, well yes there are issues with that. But won’t there always be?

I have just been going through life taking challenges head on, and not really looking back. Yesterday, however, I was reminded that my eating disorder is still a part of me. That voice, though small, is still there. And when it wants to come back loud and rearing it’s ugly head, I cannot have my head in the sand pretending everything is just fine and that I will never relapse.

 

Let me just be clear about one thing: I do not plan on relapsing back into my eating disorder. Ever. But – I am not a magician, and I am not a psychic. In other words, I can’t do magic and I can’t see into the future. I HAVE an eating disorder. It may not always be active in my life, but that small ED voice is always going to be in the back of my mind. It’s whether or not I choose to listen. But even when/if I choose to listen to my ED, it is not as simple as “oh, there Claire goes choosing to listen to her eating disorder instead of choosing recovery.” No. It is way more complicated and complex than that. Eating disorder thoughts and behaviors are so engrained in me, and in others that suffer, that it’s not always just a matter of choice. These things can sneak up on you, life can sneak up on you. It’s a sickness that’s intent is to destroy and ultimately kill. It’s not so simple.

But, let me get back on track. Yesterday, I was reminded that I do still have an eating disorder. And that I have to be cautious, careful, and mindful of this fact. I was going skiing with my family for the first time this season, which, is a big deal due to my having chronic illnesses. I tried on my snow pants, and sure enough, they didn’t fit. I could not do them up. Immediately I felt ashamed and embarrassed, not to mention anxious over what snow pants I could find that WOULD fit me. Well, I tried my sister’s on and they fit. So those are the ones I wore. But I just could NOT stop thinking about how I couldn’t fit into my snow pants. It put me in this awful mood; I was upset, sad, anxious, and wanting to shed some pounds more than ever.

Well, fast forward. I ended up going skiing. I took five runs and had a great time. That’s when it hit me, and everything fell into perspective again. So…my snow pants didn’t fit me. Maybe, over the last year I have gained a few pounds. Maybe I am not a stick anymore. Maybe, I actually have a woman’s figure. Maybe my chronic illnesses cause weight fluctuations (even those without chronic illnesses experience weight fluctuations). But you know what? IT DOESN’T MATTER.

There you go, I said it.

It really does not matter. Your size doesn’t matter, your weight doesn’t matter, what does/doesn’t fit you does not really matter. The things in this life that DO matter: family, friends, love, health, happiness. If you are healthy, that is all you can ask for. So, maybe size and weight matters in some circumstances, because it can be linked to health and health issues, on both ends of the spectrum. But overall people, your weight in the grand scheme of things is not the most important thing. And above all, our size should not dictate our self-worth. We should appreciate all of what our bodies can DO, instead of how they look. My body has been through so much over the years between eating disorders and chronic illnesses. It’s time I start taking care of my body instead of punishing it; not seriously restricting my food intake, but eating foods rich in nutrients that will help my body heal. It’s time I start appreciating my body rather than criticizing it. It’s time for you to do the same.

Does Social Media Help Chronic Illness Sufferers, or Hurt Them? My Thoughts

 

I have grown my chronic illness Instagram quite a bit over the last year and a half, and I have met some amazing, strong individuals and connected with a lot of great people. But sometimes, I feel as though chronic illness can be looked at as a competition: who is the sicker one? Who takes the most medication? Who sees the most doctors? Who has the most diagnoses?

And – I am not saying that the chronic illness community on Instagram in particular is giving off this vibe on purpose. And I am also not saying that I am not contributing to this competitiveness within the community, because I very well could be. I look at it as a similar problem that is seen in the eating disorder community. One has to be very careful and selective of the people that one follows in the ed community, because it is soooo easy for Instagram to become the “who has the worst eating disorder” competition. And, as someone who suffered from Anorexia for eight years, I can safely say that a part of eating disorders is comparing yourself to others, and trying/wanting to look the “thinnest” or the “sickest.” And if you aren’t the thinnest or the sickest, you do not belong in treatment. This was my mentality. It’s sick and twisted, but I was sick…very sick. And it’s no different with chronic illness. The community that is built to support one another can so easily be turned into a competition if not careful. People, by no fault of their own, can get trapped in this cycle of seeing posts about doctors, medicines, blood pressure and heart rate numbers (which, by the way, I am guilty of posting) and feel like they are not sick enough or that they need to post more of these pictures, too. I feel this way sometimes. Scrolling through IG does not always leave me feeling better. In fact, at times it makes me worse. It makes me feel like maybe, I don’t belong in this chronic illness community on Instagram. I see the pictures of the doctor appointments, medications, and numbers…and I get anxious. I feel as though I need to post more of those things, and so I do, whenever I can or get the chance. And there I am, sucked into this vicious cycle or black hole where I am not really living my life, but engulfed in the IG world and defined by my illnesses. And trust me, that is NOT how I want to live. I don’t need pictures to prove to myself, and to others, how sick I am or that I really am sick to begin with.

Don’t get me wrong, IG has been great in that it has allowed me to make connections with others and gain support of people who get it. It has allowed me to support others who are going through similar issues. Not only that, but it has served as a good way to keep track of how I am doing. For that, I am so grateful for my account and the community. I think, we just need to be aware of the extent to which social media and the community can start to effect us in a negative way. If you find that you feel worse about yourself after scrolling on social media, or if you feel like you have to prove how sick you are, or if you start wondering if you even belong in the community or meet the criteria to be called a spoonie, then maybe social media is becoming more toxic than helpful. And I think we have to be mindful of this, and honest with ourselves about how advantageous our social media accounts really are. And of course, everyone has a different experience. Some people absolutely may not feel this way. Maybe it is my obsessive compulsive disorder and competitive nature that starts twisting things around.

Call me crazy, I just think that sometimes we get so wrapped up in social media that we forget that we actually have lives to live. And I want to do a little more living and a little less scrolling.

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What are your thoughts? Does social media bring out your competitive side? How does social media impact you as a chronic illness or eating disorder sufferer?

New Year, Better Me

Hello everyone! I have returned to WordPress. I previously had a blog on here that I was so dedicated to. Then I switched my blog around leaving WordPress, and wrote just every so often. I missed WordPress, I missed blogging, and I missed this community. So one of my New Years resolutions, or, goals, was to get back on the blogging bandwagon – and that’s what I am doing. When I couldn’t sleep at 3 am, I decided to put this site together, and I am excited for what is to come.

New Years…I’m pretty sure that I wrote a post a year ago on why I DON’T like New Years resolutions. Well, I think I am changing my tune, because this year, I’ve made quite a few! I think it depends on how you look at your resolutions, and what the purpose is. AND – that is the beautiful thing about us humans – we are constantly changing, growing, and evolving into better and different versions of ourselves. It is totally okay for me to dislike New Years goals (resolutions) one year, and warm up to them the next and actually get excited for having goals that I can accomplish in the next 365 days. Notice my title: New Year, Better Me. Not New Year, New Me. Because, it isn’t a new me. I am not changing who I am as a person. Rather, I am working to better myself as a person. That’s the key. Our goal shouldn’t be to change who we are, the essence of our beings. The goal is to improve upon ourselves and keep building that solid foundation that makes us the wonderful individuals that we are. There was a time where my New Years goals were very surface level goals. I wouldn’t say superficial, because that undermines everything that I have been through. But my goals were never made in the image and likeness of improving myself as an actual person. Now, I have come to realize that with the right intentions in mind, New Years resolutions can actually be quite powerful. Not to say that those who make their resolutions to eat healthy and lose weight do not have ‘good enough’ resolutions. That is not what I’m getting at here. Because those ARE good resolutions, if done for the right reasons. For example, someone with an eating disorder should probably not make their New Years resolution be ‘to lose weight. ‘Just saying. But for some, eating right and losing weight is a perfectly healthy and good resolution to make! Get my point? I hope so because that was a long ramble about resolutions without actually stating any of my own resolutions! So – I will spare you and cut to the chase. Goals and/or resolutions give us incentive. They give us motivation to achieve and conquer what we set out to accomplish. They give us hope and help us to reach our full potential. So this year, I put some thought into my resolutions, and I wanted to share them with all of you.

New Years Resolutions 2018

  1. Follow the Paleo/Ketogenic Diet to better manage my chronic illness symptoms. Stick with it. Every day. Make the right choices.
  2. Going off of that, learn to cook more for myself. I was never really one to cook and bake, but now that I am on a special diet to manage my chronic illnesses, it’s about time I learned how to do this for myself. Cooking and baking is something I actually do enjoy, so making time for it and making it a priority will be the challenge that I am willing and ready to take on.
  3. Take my supplements – 4x a day like I should.
  4. Do my PT exercises at least twice every day, especially on non busy days – no excuses. They will only help me to get stronger.
  5. Read a new book each break I have from school. So, I am to finish Turtles All The Way Down before returning to school at the end of January.
  6. Ski on my trip to the mountains for at least half a day. Doing my PT exercises in the meantime will help me to build up the strength to do this.
  7. Write. Journal. Blog. Use my writing as a creative outlet. Continue to write for The Mighty and blog once a week.
  8. Keep in contact with friends. During the semester, I tend to lose contact with people, immersing myself in my studies and work. It is important that I keep friend time a part of my routine. It doesn’t have to be weekly, but I do have to make time for friends, especially with social anxiety.
  9. Read my daily devotion each morning to set me on track for the day and remind me of what really matters.
  10. Fill my jar of good things with good times throughout 2018. I may write a post later on this little craft that is such a cool and different way to practice gratitude and positivity.

So that’s that! I look forward to connecting with all of you, reading your blogs, and writing content for others as well as myself – cause that’s important too! Happy New Year!

Tell Me: Do you like to make New Years Goals/Resolutions? What are some of yours for 2018?