A few weeks ago someone said to me, “You’re so plucky, I love it!” And I had to google what the word meant since I didn’t know 🙈
That being said… ☝🏼it’s one of my new favorite words and after learning the meaning, I took what she said as such a compliment. It’s a word I’m sure many people who deal with chronic/invisible illnesses would be proud to be described as.
Last year, I was so fortunate to receive an email making me aware of an online event called the Migraine World Summit. I didn’t know what it entailed and I wasn’t sure what to expect, all I knew was that world known doctors would be interviewed about migraines, headaches and everything that comes along with them. So I immediately signed up to participate!
There was so much information being talked about–and there was a week of interviews that were available for me to watch! Best part? I was able to participate and watch straight from my bed. Score.
This year, ‘m volunteering for this international event that is going to bring thousands and thousands of participants. I can’t wait to hear what the people interviewing have to say! BTW, some of the people being interviewed include leading experts and doctors from the National Headache Foundation and the American Migraine Association. Sooooo yeah, that’s pretty awesome.
The event begins next week, April 23rd!! Make sure to check out the website here: https://www.migraineworldsummit.com/ and register for the event! I promise you will learn very valuable information and perspective on the migraines and headaches that you’ve been battling day in and day out.
The 2017 List of Top 10 Allergy Friendly Restaurant Chains is now out, people! GO CHECK IT OUT!
Having been diagnosed with an anaphylactic food allergy only a couple of years ago, I still live with the dreaded anxiety that tags along when I eat out at restaurants. It’s an anxiety that is hard to explain to people without food allergies, because they’ve (fortunately and thankfully) never experienced the terrifying feeling of having their throat start to close or having their body become covered in hives.
Once you’ve experienced those awful symptoms, it’s understandable to be worried and anxious when eating out at restaurants–especially because one of my anaphylactic reactions happened at a restaurant due to a wait staff member in their words “not taking my allergy seriously.” FOR REAL?
Since then, I’ve been extremely careful when eating at restaurants, because it’s up to the wait staff to take our allergies seriously (even though we shouldn’t have to tell people to do that, *eye rolls for days*.) Once we place our order and inform them of our allergy, we have to trust them to then efficiently communicate to the chef and then we have to trust the chef to execute accordingly.
Restaurants that pride themselves on and who prove themselves to be allergy-friendly have so much of my gratitude and respect. A restaurant should want to make sure that all of their customers are happy, comfortable and satisfied.
The restaurants on this list prove themselves to be allergy aware and friendly, which in return proves themselves to me to be outstanding places of business!
So next time your friends want to go out to dinner, maybe suggest one of the restaurants on this list. You’ll eat delicious food with good company, and you can worry a little bit less 🙂
*My personal favorites on the list are Chipotle (because it’s an allergy friendly chain that offers fast food pickup) and Not Your Average Joes (because their staff is outstanding and so is their food–seriously, try their bread!)
This is not a sponsored post, just one blogger’s opinion 🙂
I’ve finally come around to creating my Facebook page! I was telling myself that I shouldn’t do it yet because I haven’t finalized a logo–but then I said, why wait!
Come connect with me on Facebook!
No couple is immune to the hard work that goes into their relationship. Each couple has their own unique obstacles that they have to overcome, their own speed bumps to get over and their own challenges. Each relationship is unique. Relationships that involve someone with a medical condition such as an invisible/chronic illness, present a whole new category of challenges and obstacles.
Since I was about 12 years old I’ve battle migraines.Then a couple of years ago my chronic daily headaches developed. Two years ago I developed an anaphylactic food allergy. In the last few months I’ve been diagnosed with hypermobility ehlers-danlos and mild postural orthostatic tachycardia syndrome. You can probably assume that I don’t lead the same type of lifestyle that most normal “healthy” young adults do. These health issues present a number of challenges that would take up a whole page to list them out. But one that other people may not think about is the challenge of dating as someone with a chronic illness and/or condition.
It wasn’t often that I opened myself up to someone. And there was always an underlying reason that I often tried to downplay–which was I didn’t want to try to explain my headaches to someone else. It’s a challenge in itself to get someone to even remotely understand what I feel like every day. Which makes sense–you can’t really understand someone else’s physical pain–but it is such an overwhelming and anxiety inducing thought just thinking about explaining it to someone else and trying to help them make sense of it. So I just avoided it.
What I’ve found, though, is that with the right person it may still be difficult to explain and express to them how you feel with your chronic illness, but it will become much easier over time and the burden of having to explain over and over will be lifted.
I have been lucky enough to be in a relationship with someone who, even though he may not be able to understand my daily physical pain, tries his hardest to do so and is there for me every step of the way. Dating as someone with a chronic illness means you look for someone who will stick by you when you’re at your worst. He has laid beside me when my migraines have been so awful that it hurt to talk and think. He has rubbed my back while I lay curled in my bed. He’s rushed me to the ER and rushed himself to the ER when I found myself there without him. He’s held my hand through countless IV’s and needles. But not only has he seen me at my worst physically, he’s seen me at my worst emotionally. He’s been by my side when the unpredictable blues hit and I lay fetal position in my bed crying due to frustration, pain, anxiety and disappointment.
You can imagine that being seen in such states can make you feel incredibly vulnerable. I feel fragile, broken and completely exposed. It took me a while to show that part of myself to him, but even now, I have a hard time expressing everything that I’m feeling. It’s hard to be as vulnerable as that and not feel guilty about it. Showing that much vulnerability can make your partner sad because they see with their eyes how much you are hurting. It’s not fun for them either. Which is why I try my best to hide it sometimes, even when I know I shouldn’t.
Even though i’m the one who is in constant physical pain, it takes a toll on him as well. It takes a toll on our relationship at times.
Once or twice the words “go on a break” have been tossed around before and we have found ourselves facing crossroads of our relationship. It’s no surprise that there is a certain amount pressure put on a person who is dating someone with a chronic illness to be stronger, more reliable and more flexible than a person who is dating someone “normal.” I’ve been stubborn and told him he should date someone normal because it would relieve him of this unnecessary and burdening pressure and frustration that he inevitably faces by dating me. I have become short and impatient because I was telling myself that he should be with someone easier and healthier, which results in him growing fearful and frustrated as well.
By living a life with chronic illness, I’ve gained a lot of insight I never expected to. One major thing that I’ve learned about being in relationship as a person with a chronic illness, is that we must give back. Love is a two way street. Our partners constantly give and give and give to help us out when we are feeling at our worst. And it can be easy to let it slip our minds, especially when we aren’t feeling well, that they are putting out so much effort to make us feel better. We end up taking and taking and not giving anything back in return.
We have to be mindful and remember to give back. Be outwardly and openly thankful. Be verbal about it but also show it through actions and do something small (or grand) every once in a while to show your partner just how grateful you are. Surprise them with thoughtful gifts, write them notes, tell them how much you love them every day, take part in their interests, cook for them when you’re feeling well, help them in ways they may not feel comfortable asking for just as they do for you.
There are numerous challenges that we face when we live with a chronic illness. Being a part of a relationship is one of those challenges that bring about many challenges of its own. But if you can make it through the hardships that chronic illness throws your way, you can make it through any of the other relationship speed bumps you may come across.
There are many days where I get the blues. Most of the time, it’s due to the limitations and frustrations that my headaches have caused. There’s no way for me to pinpoint what gets the blues going. There’s no moment that I can recall setting them off. They just happen. One moment, I’m energetic and laughing, the next I feel like I can’t physically move from my bed.
This chapter of “How To Live Well With Chronic Pain and Illness” is all about getting the blues when you live with a chronic medical condition.
*I skipped a couple of chapters, because this chapter is very powerful, I believe.
This chapter discusses some things the author believes can help with your blues.
- Avoid “comparing mind.” It’s easy to believe that we are the only ones who get the blues. Our friendly neighbor across the street seems to always be cheery. Our friend who has the perfect job and relationship seems to have it all. Etc, etc. But that’s not the case. Everyone is subject to illness, hurt and struggle. You are not alone.
- Treat the blues with friendliness and compassion Even if we aren’t physically alone on the days when we get the blues, the blues can often make us feel as though we are completely isolated. I feel this way normally when I get the blues. By trying to convince yourself that you shouldn’t feel that way, you are only hurting yourself. Lend yourself some compassion. You are allowed to feel this melancholy way.
- Change the environment–physical or mental. Sometimes you need to just get out of the space you are in. Go for a walk outside, go for a drive, sit in a local coffee shop. Somewhere new. Somewhat recently on a day that I had the blues, my boyfriend took me on a long drive on a fall evening. I don’t know how to describe it, but it worked–it pulled me out of my blues and that one little change of scenery had a larger impact on me than I imagined. It was difficult to get myself out of bed and into the car, but 5 or so minutes into the drive I was really happy that I did. You can also change your mental environment. Do something creative–I like to write and sketch. It pulls my mind in a different direction and gives me the outlet that I need.
- Remember that the blues are impermanent. Moods and emotions are unpredictable and always changing. Even though it may seem muggy and gray right now, tomorrow may bring about brighter days with happier times. Just like the weather, they will change.
Note here: “the ‘blues’ is to be distinguished from a heavy or dark mood that goes unchanged for weeks at a time and interferes with work or personal relationships. The latter could be a sign of clinical depression, in which case you should consider seeking advice of a health care practitioner.”
People will forget what you said, people will forget what you did, but people will never forget how you made them feel.
This chapter is all about being kind. She says that kindness is a universal form of communication. We so often direct negative judgment toward ourselves. People with chronic illness (I’m speaking for all of us here, as an assumption,) definitely tend to do this. “Why does my body hate me?” “Why can’t I do things like I used to?” “I hate living this way.” etc etc etc.
But just imagine what it would feel like, if instead, we treated ourselves with the constant kindness that we so often show others. If we can be friendly to others, we should be friendly to ourselves as well.
She goes on to talk about how the mind is flexible and changeable. In order to get us all to start cultivating kindness, the author share in this chapter some of her favorite quotes on kindness:
“Tenderness and kindness are not signs of weakness and despair, but manifestations of strength and resolution.”
When we extend kindness to someone else, it helps take us out of our own minds and away from being preoccupied with our own problems.
“Kindness is within our power even when fondness is not.”
This quote I think is even more relevant in today’s world. Where we may not all agree with one another, we can still be kind. Even though we may not find another person easy to get along with, we can still show compassion.
“I’ve always depended on the kindness of strangers.”
–A Streetcar Named Desire
We with chronic illness can definitely relate to this one. We may find ourselves in situations where we have to rely on a stranger or acquaintance to help us if we are not feeling physically well enough to do something ourselves.
“No act of kindness, no matter how small, is ever wasted.”
Every. Drop. Counts.
The author ends the chapter with this powerful quote by Henry James:
Three things in human life are important: first is to be kind; the second is to be kind; and the third is to be kind.
Chapter 8 of “How To Live Well With Chronic Pain and Illness” outlines the many benefits of patience when it comes to living a life with chronic pain and/or illness. We are patients. And we need to be patient. This word patient is such a commonly used word in our life’s dictionary.
Everyone loses their patience–maybe traffic is bad and you just want to get home; maybe the wait time at the doctor’s office is unbearable and you can’t stop glancing at the clock while sighing; maybe today just isn’t your day.
One hard truth about life: sometimes, it just doesn’t go your way. But the author puts this fact into perspective for us a bit in this chapter. She says that “it’s not the fact that we don’t get our way that makes us miserable; it’s how we respond to that fact. The question becomes, do we get angry and upset, or do we tolerate and accept whatever’s happening that we don’t like?”
The author notes that by practicing patience in her life, she has noticed two things:
1) being patient is a way of treating yourself with compassion
2) being patient gave rise to equanimity–the even-tempered, peaceful state of mind that accepts with kind understanding that our lives will not always conform to our preferences.
The author then outlines her four-step approach for working with stressful and painful emotions. See below:
1) Recognize it: Recognize that impatience has arisen
She goes on to talk about how we often tend to think that the environment around us should conform to our expectations (ex: no traffic jams, no long lines, etc.) ; we tend to think that people should conform to our expectations (ex:they should behave the way we think they should) **I am very guilty of this** ; our expectations are often unrealistic when it comes to mastering new skills ; our expectations are almost always unrealistic when it comes to what goes on in our minds.
She suggests trying to come up with specific examples from our own lives that we can fit under these categories, which in turn will help us recognize that we are responding with impatience.
2) Label it: Label impatience when it is present in your mind
Try investigating your emotions from an objective point of view. It’s easy to place judgement on ourselves for how we’re feeling, but that isn’t fair nor compassionate to ourselves.
3) Investigate it: Investigate how impatience feels in your mind and in your body
Try to pay attention to how you feel when you’re impatient–is your body relaxed or tensed, is your mind calm or anxious?
4)Let it be
“Calmly accept the presence of impatience knowing that, with time, conditions will change..and so will my mind”
It’s the peace of mind that comes with accepting, without aversion, that delays, difficulties, and annoyances will inevitably be among life’s experiences.
When you live with chronic illness or pain, you find yourself constantly trying to manage your health as our relationships with others as skillfully and as well as we can. Based on our evaluations of how we are managing both of those parts of our lives, we have to make choices that will most be the most beneficial. This leads to tough choice after tough choice. Do we keep the plans we made or listen to your body and stay home? Do we let down our friends or our bodies?
Start where you are. Use what you have. Do what you can.
In this chapter, the author writes out some tough choices/questions that we have probably all found ourselves facing at some point during our lives with chronic illness/pain. See below:
- “Do we talk openly about our health problems, or do we keep them private?”
- This is a choice I find myself facing nearly every day. When I interact with strangers or with people whom I know I won’t be seeing often, I find myself wondering if I should even bother trying to explain my symptoms and health conditions. Sometimes I feel like I have to explain myself or the person/people I’m talking to will think I’m weird, or lazy, or boring, etc. But then other times, I feel like I shouldn’t have to explain to someone who may just be a temporary character in my story. The best thing we can do for ourselves in this dilemma, is read the situation and circumstance and do what we feel will be the most beneficial and compassionate for us–not for anyone else.
- “Do we follow our doctor’s treatment plan, or do we try alternate therapies?”
- This question frequents my mind much more often than I would like it to. So often I find myself going back and forth on whether I want to try a new treatment that my doctor has suggested. For years, none of the medicines I was being told to take worked. None of them. Countless pills and nothing to show for it. So I am skeptical. However, there are some treatments that my doctors have suggested that have proved to be beneficial and have provided me with even the littlest relief (any relief is a win). So I am hopeful.
- “Do we ignore a new or worsening symptom, or do we have it checked out by a doctor?”
- I can not tell you how often I have asked myself this question. You can ask my family members and my boyfriend–they won’t be able to remember either because it’s a substantial number that keeps growing. I find myself so much more in tune with my body than most people. While this can be beneficial, it can be extremely tormenting. It is exhausting to waste so much emotional efforts focusing on every single ache, twinge, or pain that is felt in our bodies. Trust me–I do it every day. However, no one knows your body as well as you do. There have been times that I have gone to the ER over a symptom that ended up being nothing to worry about. However, there have also been times where I have brought up symptoms to doctors and it has helped get me steps closer to treatments that actually work for my body. All you can do, is listen to your body as carefully as you can. You are the expert on your body. You know it best.
- “Do we use makeup and the like to cover up how sick we are or how much pain we’re in, or do we let people see how we really feel?”
- This is a question that I often answer too quickly–and most of the time, my answer is to hide how much pain I am really feeling. The author said something in this paragraph that stuck with me real hard. She said “Health people tend to assume it’s all or nothing: people are either sick or they’re not; they’re either in pain or they’re not. As a result, if they see us doing anything ‘normal,’ they assume we’re 100% well.” I mean this is an every single day occurrence for me. I’ve lived through thousands of interactions where someone has said to me “oh you have a headache today? I’m so sorry.” Well…I actually have a headache every single day, it’s just some days they are worse and more painful than other days. It’s not their fault, I know. But it’s extremely difficult to always remind people of my constant pain. So, most days, I just hide how I’m feeling. People are not deliberately insensitive to our pain though. They just simply don’t know.
The author ends this chapter by talking about how physically and mentally exhausting it is for us to have to continually “assess, evaluate, and choose a course of action while already struggling with chronic illness.” and she couldn’t be more accurate. Pay attention to your body and you will find the answers to your choices come much more easily.