Day 27: Come what may

wp-1486142478772.jpg

Hello lovelies, thanks for visiting again. Today we are talking about advice and chronic illness.

What’s the most helpful advice you’ve had? 

When you’re ill, chronic or acute, you’re never short of advice from other people. Some of it is helpful, others not so much. Before I go in to detail, I just wanted to share a list of things and advice NOT to say to someone with a chronic illness:

  • “You should try…”
  • You just need less stress
  • Just push through it
  • You just need more exercise

Chances are, we know the things we should and should not try. We know the things we need to do in order to have some relief from our symptoms. We don’t need to be told about new miracle treatments. We don’t need to be told we need less stress (let’s be honest, EVERYONE needs less stress).

Now here are the two major pieces of advice I have been given, that I have been living by:

I have said this time and time again, but life is about how well you’ve lived, not how long. Quality over quantity. Everyone focuses on quantity, living as long as possible. It’s an easy thing to measure, measured in the number of years you’ve lived. The longer you’ve lived, the better, right? Not necessarily. You can absolutely live a long, happy life. On the other hand, you can live a long unhappy life. It’s hard to really measure a life full of quality. What exactly is a quality life? How do you measure how good your life is? I want both, I want a long, happy life. but I’ll settle for a happy one.

Another thing that has recently been bestowed on me by a fellow spoonie, and one of my partners in crime. No really, if I were to get arrested, it would probably be with her doing something ridiculous. Anyway, she lives by the phrase “come what may”. I’m not going to say that I don’t have bad days, days that I hate what my life has become. I absolutely do, and have been feeling that way recently. We all have those days – chronic illness or not. No matter what happens, we keep pushing through, though. Come what may.

Anyway, thanks for reading.

Lots of love,

 

Megan

Day 26: Impact of chronic illness on loved ones.

wp-1486142478772.jpg

 

Hello lovelies. Thanks for stopping by again. Today we are addressing how chronic illness impacts loved one.

Chronic illness doesn’t just impact the patient, it impacts everyone around them. Family, friends, partners, etc. Me and my loved ones are certainly no exception to that. There are many ways in which people around me and around other chronic illness warriors are impacted. I think most significantly is the emotional impact that it has on people. Many of my loved ones have experienced emotions quite similar to what I have experienced: Guilt, anger, depression, fear, etc. In addition, I also experience these emotions, as well as irritability, and have taken those strong emotions out of my family and friends. Those no one will say as much, I’m sure there have been times where my illnesses and how I react to them have put a major toll on my family. Additionally, I do not really have a partner or significant other to speak of. I’ve been on a few dates since getting sick, but have not had a serious relationship. Part of this is not wanting to burden someone else with my baggage, and there’s a lot of that. I’m also terrified of how people will respond when they know the full.

That is all I really have to say on the matter for tonight. I’ve been feeling a bit despondent as of late regarding my illness, and particularly TPN. I am and will be okay, it’s just a lot to process sometimes.

As always, thanks for reading.

lots of love,

Megan

Day 25: Activities despite and because of illness.

wp-1486142478772.jpg

Hello lovelies, thanks for stopping by again. We are getting pretty close to the end of the 30 day challenge. Day 25 is as follows:

5 activities you have managed to pursue while being ill

1. Painting and art

Painting and art are going to be on both of my lists. I don’t think that I would have pursued anything artistic if it wasn’t for the fact that I got ill. At the same time, art is calming but can also be exhausting, time consuming, and effortful.

2. Learn

I am currently on a leave of absence from school, with only 2 courses left to go. That being said, I managed to stay in school for quite a few years after being diagnosed. Additionally, despite being out of school at the moment, I continue to push myself to learn.

3. Take care of myself (mostly)

For a normal 27 year old, this might not seem like a huge deal. There is a point in your life where you should be able to take care of yourself. But being able to take care of yourself is actually quite difficult when you are sick. The reason I said I mostly take care of myself, is because I do have someone that comes in a few hours a month that help me with household chores, and do have help with running errands. That being said, I do mostly travel to appointments myself, I manage my health equipment myself, do laundry, shower, etc., myself.

4. Live on my own

Again, to a normal 27 year old this might sound like nothing. But when you’re chronically ill, faint regularly, and are reliant on IVs to live, this is quite a big deal. Yes people check on me regularly, help with tasks, and I modify things a lot so that I am able to continue to live on my own.

5. Compassion for others

There are several different “ways” you can go when you have a chronic illness. You can be bitter/angry, anxious/afraid, hopeful, etc. None of these responses are “bad” responses. They are all appropriate for the situation, and are in no means mutually exclusive. Some days I’m okay, happy, hopeful. Other days I’m a bitter, irritable bitch (pardon my language). If there is one thing I have noticed consistently throughout the chronic illness community, though, is compassion. Compassion and understanding for others and their journeys.

5 activities you have done that you would not have pursued if you had not become ill

1. Painting and art

See above.

2. Blogging

I have tried MANY times in the past to blog. I’m one of those people who falls out of the habit. The most I have blogged in the past was 1 or 2 entries. Having a chronic illness sucks, but it has given me something to write about. It has given me a unique experience to share with others who might be lost, at the start of their journey.

3. Visit hospitals, doctors, etc

I’m not saying this is a good thing (though it isn’t necessarily a bad thing). I have been introduced to some amazing health care providers, and in tern have been able to introduce others in need to those providers as well.

4. Things to do in life list

As I have mentioned in the past, this what others call a “bucket list.” I just don’t like that term, so I changed it to “things to do in life list.” I will be the first to admit that before I got sick, I took everything in life for granted. Getting sick has made me realize how fragile and short life can be.If there is something we want to do, we should do it while we still can. I never would have taken the time to think about what I wanted in life, or how I was going to achieve those things had I not gotten sick.

5. Gaming

Okay, don’t judge me. I was a casual gamer before I got sick, but since I got sick I have become a pretty hardcore gamer. Gaming has not only given me a healthy outlet for my feelings and emotions, but it has also introduced me to some pretty amazing people, as well as something I am passionate about.

 

Thanks for reading!

Lots of love,

Megan

Days 23 and 24: pep talks and socialization.

wp-1486142478772.jpg

Hello lovlies. Today’s post is 2 days worth. It’s also just me rambling on and on again. Sorry if it’s short. Spoons and all.

Day 23: What do you say to yourself when you need a pep talk? 

I intentionally did not post yesterday because I honestly just don’t know how to answer this question. I don’t really tell myself anything when I need a pep talk. Not that I am consciously aware of at least. Things like “you can do this”, “breath”, etc, just seem so cliche and unhelpful to me. I do have a lot of coping techniques, though – e.g., painting, drawing, reading, playing games, snuggle with my cat.

I would absolutely love for people to share what kind of pep talks they give to themselves, though. I could certainly use a pep talk right now!

Day 24: How have you managed to juggle your social life through your illness? 

This is an interesting question. I think for many people, sick or not, this is something that changes on a daily basis. I do struggle to get out of my apartment and be social with people in real life. And other times when I do schedule something to be social with people, I often have to cancel or reschedule. Many factors come in to play, unexpected appointments and hospitalizations, lack of energy, fainting, pain, nausea/vomiting, etc.

I do have other outlets for my socialization. As you may or may not know, I am a hardcore gamer. As such I have a group of gamer friends as well. Some I know in real life, some from my area, others I have never met in person, and/ or don’t live in my area. We communicate quite often online, and on a app called Teamspeak (like skype for gamers).

In addition to this, as I mentioned in the past, facebook is an amazing place to network with people with similar issues. I have met some amazing (as well as some not so amazing) people with chronic illnesses as well.

 

Anyway, I’m exhausted so that’s it for tonight.

lots of love,

Megan

 

Day 22: Letters to my health care team.

wp-1486142478772.jpg

Hi lovelies, thanks for stopping by and taking the time to read. Today’s post is very near and dear to my heart. It is more for my own sake than anyone else.

Day 22: How do you feel you have been treated by the medical system? explain. 

I have been mostly fortunate with how I have been treated by health care physicians. I had one neurologist who refused to treat me after my EEG came back normal, and one cardiologist who told me it was psychological – even after my psychologist at the time said he didn’t believe it to be psychological. Other than that I have been lucky. I know plenty of other chronic illness warriors who have, and continue to be treated like they are faking it, doing it to themselves, or like it’s all psychological.

My current health care team is amazing, and I wouldn’t switch them out for anyone else. There are 3 members of the team in particular, who I strongly believe are responsible for me being alive today. As such, I have decided to write a letter in this blog to each. Please excuse the length of this post.

Names have been withheld for privacy’s sake

To my Nurse Case Manager,

I was thrown on to your case load a few years ago, after being hospitalized frequently for dysautonomia. Initially, we would only talk after hospitalizations, or after a few weeks time. These past few months, something changed in my already dysfunctional body that ultimately got me to where I am now – unable to eat or drink, solely dependent on artificial nutrition pumped into my veins to live. It has been a grueling few months filled with tests countless treatments, reactions, infection and complication, and endless heart break. Throughout all of this you have spent hours patiently on the phone with me listening to me cry, complain and express my feelings. You’ve fought to get me the help I needed, and have spent both professional and personal time communicating with me and other physicians regarding my case. I’ve been selfish with your time but being sick, so young, has been unimaginably hard. Watching anyone, especially someone young, go through something impossible knowing you can’t fix it has to be difficult too. So does hearing a 26 year old call you daily saying “I think I’m slowly starving to death, and no one is doing anything to stop it.” Despite everything you’ve soldiered on and continued to fight for me. You continue to check on me, and my physical and emotional well-being. Words cannot express how grateful I am to have you on my health care team. As far as I’m concerned, you are part of the reason I am still alive.

Thank you from the bottom of my heart,

Megan

To my Primary Care Physician,

After my last Primary Care Physician left, I felt lost. I finally had a physician who believed me and was willing to fight to get me the answers I needed. Then suddenly she was gone. I heard good things about you through my previous physician, my case manager, and some of your other patients. Despite this, I have to admit that I was anxious about our first appointment. I had been having difficulty with eating for a few weeks prior to our first encounter. I was worried that you wouldn’t believe me, worried that you wouldn’t take me seriously, and worried wouldn’t be as informed on POTS as I had been lead to believe. My worries were unfounded. Our first encounter you were on the game. You started us down the road of the long, arduous journey – a journey that you have reliably and consistently fought to get me answers on. Your guidance, support, compassion and genuine concern has kept me fighting when I felt like there was no reason to fight.

I believe that you, and a few other members of my health care team, are the reason I am alive today.

Thank you for being an amazing and caring part of my team.

Megan

To my Gastroenterologist.

I do not even know where to start my letter to you. The first time I met you, I was admitted to the hospital due to my inability to eat or drink. The moment I met you I was impressed with your bedside manner, compassion, and knowledge of dysautonomia. You have taken my issues seriously, and have have stuck by my side while treatment after treatment has failed. Each time, you have come back with something new to try, even when you were unsure of what to do next. You have been unafraid to reach out to others for new and differing thoughts and ideas. You have patiently and calmly addressed all of my concerns, no matter how big or small, and allow me to be a part of the decision making process.

I deeply believe I am alive, in part, because of you and your efforts.

You’re an amazing, compassionate physician, thank you for being a part of my health care team.

Megan

I would also like to take a moment to mention my nutrition physician, and infection disease specialist. My nutrition physician and I have spent much less time communicating and meeting than I have with my other physicians. I’m not sure if I made a lasting impression on him or not, but he made an impression on me. He was among the first to suggest supplementing my nutrition as I was not getting the nutrients, vitamins and minerals, or calories that I needed to survive. He is the physician that prescribes and manages my TPN. As much as I dislike TPN, and the complications that come with it, I am also grateful for it and the fact that it has kept me alive. My infectious disease specialist, in different ways from my other health care providers, has also saved my life after battling with sepsis. She is also an amazing, caring, and compassionate provider.

Thanks everyone for stopping by and reading. Lots of love,

Megan

Day 21: The wonders of the internet!

wp-1486142478772.jpg

Day 21: What networks or websites have you used for support or information about your illness? 

The internet is an amazing source of information, resources, and support. Below are some of the sites that I have used, and/or still use to this day for information, resources, and support.

For detailed information about POTS, causes, diagnosis, treatment, and more click here

Dysautonomia International is an amazing source of information, current research, dysautonomia related events, as well as a place to connect with other people with Dysautonomia. Please click here to visit the main site.

The Dysautonomia Information Network is also a great source of information about dysautonomia and its many forms. Additionally, it is a great place to network with other dysautonomia patients. Click here for their main site, and here for their forums.

The Dysautonomia Support Network is yet another source of great information, support, and resources for patients. Please click here for their website, and here for their facebook page

The Gastroparesis Patient Association for Cures and Treatments (G-PACT) is a fantastic resource for people with gastroparesis, intestional psudo-obstructions, and chronic inertia. Click here for their webpage, and here for their facebook group.

The Mighty is probably one of my favorite, and most visited sites. It is a community that allows people to share their chronic illness stories with others. It is not limited to people with dysautonomia or gastroparesis, but in fact covers MANY chronic illnesses and disease. Stories written for the page are written by fellow chronic illness warriors. Please click here for their website, and here for their facebook page. https://themighty.com/

Additional facebook groups:

POTS Support Group

TPN Support Group

Gastroparesis Support Group

 

 

 

Day 20: Spoonie friends!

wp-1486142478772.jpg

Hello lovlies. thanks for coming back again today.

Day 20: Have you met anyone with the same illness(s)? Did it help? 

POTS is a very unknown disorder to just about anyone. So when you hear about someone with POTS you think they must be in the minority. I thought that myself after I was diagnosed. I felt completely alone, and isolated. What’s interesting is how very many people you learn have POTS after you or someone you know has been diagnosed with it. In fact, according to Dysautonomia International, it is estimated that between 500,000 and a million individuals (mostly women) are effected by POTS. I know of at least 5 or 6 others in my immediate area that also have POTS and other conditions related to their POTS. In addition to this, there are tons of facebook groups that have allowed me to network with and come together with other people with POTS, Dysautonomia, and Gastrointestinal dysmotility.

Knowing and talking with people both online and in person who have the same issues as you is immensely helpful.The truly understand what it is I am going through, as they have been there themselves. Additionally, others with POTS and other chronic illnesses don’t judge you or give you a hard time for having to cancel plans due to low energy, doctors appointments, etc.Though Chronic Illness is always isolating, having spoonie friends also helps to decrease the amount of isolation.

 

Thanks for reading.

Lots of Love,

megan

Day’s 18/19: Chronic illness ≠ better person/a chronic future.

wp-1486142478772.jpg

Hello again lovelies. Thanks for stopping by again. I apologize for no post yesterday. It was a combination of forgetting (of course, gotta love brain fog), and not having enough spoons when I did remember. So, I will be doing day 18 and 19 today!

Day 18: Do you think you have become a better person through being ill? Explain. 

I don’t think that having a chronic illness necessarily makes you a “better person”. I feel like I was already a good person to begin with. That said, I also don’t think that it necessarily makes someone a “worse person” either. Chronic illness has made me, and many others, more compassionate of others, appreciative for life, and understanding. It has made me more passionate to help others. It has made me more honest about how I feel, and less tolerant of bullies and hate. It’s made me more sarcastic. Having a chronic illness has made me more honest with myself, but less honest with others. Let me explain this last part. When I said, less honest with others, what I mean is that I am not always straight forward with others about how I feel. Like many other people with chronic illness, when asked “how are you?” I tend to default to “okay”, “hanging in there”, etc. Let’s be honest, no one wants to hear about how miserable you are all the time. Plus, I don’t want to give in to that misery. I often feel much worse when I say that I’m miserable, than when I say that I am hanging in there. I’ve taken my illness out on myself, screaming at myself, beating myself up emotionally because of what I can’t do. I’ve also taken it out on other people – irritability is a part of chronic life.

Do any of these qualities or behaviors make me a “better” or “worse” person than I already was? Than I was going to be without a chronic illness?

Day 19: How do you feel about the future? 

There was a point in my journey that I didn’t feel hopeful for my future. I didn’t necessarily think I was dying or going to die young, just wasn’t hopeful for a quality future. Over the past year, particularly since developing severe gastrointestinal symptoms, I have adopted a new attitude in life – Life is about how well you live, not how long you live. I could very well have a long life ahead of me. But none of us know the future. Even the healthiest people could have their life taken or drastically altered in a matter of moments. At one point I told myself I would finish school and go to medical or PA school once I felt better. There may be a point in my life that I feel “better”, but there might not. I’m not going to sit around and wait for that day. I plan on finishing my degree once my financial situation is a little more stable (my student loans have all be forgiven and I don’t want to take any more out). I plan on pursing my advanced degree once I have all the prereq classes. If I am capable, I’m not going to wait to do the thing I want. Is it going to be hard? Absolutely! But the reward will be so much sweeter.

I feel like I’ve been rambling on for a while. I feel like my blog entries go through phases of great structure, to absolute ramblings. Before I leave off, I also wanted to take a moment to thank a few of my friends. I don’t want to call you out by name on a blog, but I have several friends who have been helping strive to achieving some of the stuff on my “life list” (I prefer this term over “bucket list”).

Lots of love,
Megan

Day 17: goals!

wp-1486142478772.jpg

Hello lovelies, thanks for stopping by again today. Today’s topic:

Day 17: How would things be different if you weren’t ill?

I don’t like this question, because it makes me feel like I’m missing out on something. I may or may not be missing out on stuff, but I choose not to look at it that way. Instead, I am going to ask a different question: What are some things you want to do? A few weeks ago, I was asked if I had a bucket list. When I was initially asked this, I was kind of scared to even address the matter. Having a bucket list makes me feel like I’m giving up. In reality, I’m so far from giving up that I’m fairly certain my physicians are tired of hearing “What’s next?” from me! As I’m sure everyone reading knows, a “bucket list” is a list of stuff you want to do in your life before you die. Having a bucket list doesn’t mean that you’re at the end of your journey and want to pack in all the things you never did before you die. Having a bucket lists simply means you want to life your life now. You have goals you want to achieve, places you want to visit, things you want to do. So here are but a few of the items on my bucket list:

  • finish my undergraduate degree
  • go to medical or PA school
  • Travel to Scotland
  • See the Northern Lights (this is one of my biggest goals)
  • See a Broadway play
  • Go to a gaming convention
  • Start a blog or a vlog (CHECK)
  • Ride a zip line
  • See the redwoods
  • See the Hobbit Huts in New Zealand
  • Whale watching
  • Visit a castle
  • Kiss a Sea Lion
  • Play with/bathe an elephant

I’m sure there are many more on the list, and more to come, but these are some of the top ones.

Lots of love,

Megan

Day 16: Inspirational quotes

wp-1486142478772.jpg

Hello lovelies, welcome back to my blog! Today’s blog:

Day 16: what is your favorite inspirational quote? 

I don’t have just one favorite quote. Below are a few of my favorite quotes. I don’t know if all of them are necessarily considered to be “inspirational”, but they have certainly helped me. Also, don’t judge me for the number of J.R.R Tolkien quotes… In case you haven’t figured it out yet, I’m kind of a nerd.

courage-is-found460f43b0bf1a2e3cf7ee6ff10a476519255015421-rikki-rogers-quote-strength-doesn-t-come-from-what-you-can-do-it338801-adrienne-rich-quote-there-must-be-those-among-whom-we-can-sit-down

14368852_10210316667461377_5123274498357125316_n

Please feel free to share your favorite quotes that make you feel better when you’re down.

Thanks for reading!

Lots of love,
Megan