Thursday, April 25, 2019

The Lies I Told Myself





I knew I was planning a bit too much for the week.  But I rationalized.  Dinner with a friend.  I would be eating better than I would at home and we would just be sitting in a booth the whole time.  Then there was a movie - again, it’s all sitting, basically resting, right?  Then there was a dress fitting with a friend.  Again - easy peasy.  Lots of sitting, snacking, nothing strenuous.   

Then came Thursday.  Thursday came on hard and heavy.  Sore throat, swollen lymph nodes, body aches, chills, and a migraine.  My mind was in a complete fog all day.  By 4:00pm I basically blacked out for an hour, completely unconscious to the world.  I awoke to feeling like a semi-truck had just run me down.  If only I had the energy to get off the couch...  Too tired to eat, having no energy to chew, even though I knew a bit of food would help. My week of plans, most of which involved sitting... was still too much.  This was a harsh reality check!

Myalgic Encephalomyelitis, you took me prisoner once again and threw out the key!  Or did you?

Some days you let me think I’ve got a grip on this whole pacing thing, that I’ve figured out a routine that works... and then suddenly you rip the rug out from under me.  And I despise you for that.  I despise that you’ve made me accept non-stop pain as my new norm.  That you’ve done it in such a way that no one sees it but oh, do I feel it.  That invisibleness - it adds a whole new layer of challenges to my life.  Many people think if they can’t see my pain it must not be there.  Or they simply forget that the pain is ever-present.  I don’t talk much about it because I don’t want pain to be the story of my life.  So, they forget what I wish I could forget.   

Myalgic encephalomyelitis, fibromyalgia, cancer, Lyme, lupus - pick your condition.   They all rain down on us a barrage of ever-changing symptoms and severity levels.  They leave us guessing what the next moment and the next day holds.  

So, what do we do? What do we do when it gets to be too much?  When there is no end in sight yet we can’t imagine another day like this?

First, quitting cannot be an option.  Off the table!  Our conditions may get the best of us some (or many) days, but we cannot let them win.  There is so much more to us then our conditions.  We cannot let it erase all that we’ve worked to become and the people we are today because of that. We are far too special, have too much to give to this world, and make such an invaluable difference in the lives of our loved ones. 

So, here’s how I’ve analyzed it all out for myself:

First, I can fight.   But honestly, I’m too tired to fight.  On to option two!

Second, I’ve decided to continually work on accepting what I cannot change.  It’s not always easy; it’s a work in progress on many days but quite frankly, I don’t have energy to focus on what I can’t change.  If I can’t change it, fighting it or focusing on it is simply wasting my precious energy. 

Third, I will continue to challenge what may be possible to improve.  I think this is an area that is bigger than I often realize.  For example, I once accepted my back pain.  Now I spend precious bits of energy on strengthening my lower back muscles daily, muscles that weaken from being so sedentary.  The reality is that it’s a bit of a tie in this area - what I gain daily in strength I lose as well, but I’ll take a break-even over a loss.  When allergy season sent me into a flare these past few weeks, I began supplementing my day with some allergy medicine to ward off the extra fatigue. This has become a win for me!

Fourth, I do my best to stay on top of the latest recommendations from friends with my condition to see if they are options for me.  Admittedly I fall endlessly behind on this, too tired to stay on top of the updates and sometimes unable to understand them on my heavy brain fog days.  However, I have had some nice gains in this area that make the pursuit still worth it.  

Another big area for me has been learning my triggers.  I don’t know if I’ve just been super naive, inadvertently ignoring patterns, or simply oblivious but when friends have mentioned their triggers, I’ve realized they have been mine too.  I just never connected the dots.  For example, loud areas, concentrated winter driving, and too much screen time all drain my energy.  If these things are in the mix now, I know I need to plan rest time, not more activities, after.  If I can’t avoid the trigger, at least I can plan for the aftermath.  This has greatly reduced my plan cancellation rate.  Tied to that, outings in general are also a trigger so I make less plans with friends now, which isn’t ideal, but it also means less guilt from plan cancellation.  To compensate, I’m learning to find new ways to stay connected with my friends to lessen the effect of this.

While I may be a prisoner to my condition on occasion (to put it mildly), over time I’ve learned that the key to my freedom is not forever taken.  It’s just buried a bit, waiting for me to find it, when I am ready.


Thursday, April 18, 2019

I Can’t Believe You Just Said That?!?





Life with a chronic illness comes with a wide variety of physical symptoms that can make our day-to-day life quite a challenge.  Unfortunately, our actual illness is only one piece of life with a chronic illness.  With it often comes many other things, including loss of friendships, a strain on relationships, financial hardships, and many lifestyle adjustments, to say the least.  There’s something in particular that I want to talk about today though because it happens a lot, especially to those of us with “invisible,” rare, or often misunderstood illnesses.  And that is the questioning, judgment, and comments that others either unintentionally, unknowingly, or simply unkindly say to us.  

We undoubtedly live in a society where judgment and criticism are quite prevalent.  I don’t think there’s anyone that hasn’t had at least a good handful (or more!) of unkind digs come their way.   What I am talking about today though is something a bit different, something that unfortunately happens quite often to those of us with a chronic illness.   And that is comments, suggestions, judgments, and questioning directed at us related to our illness – the validity of them, how we live our life because of them, and even what they feel the “miracle cure” for us is.

Here's a few to give you a flavor of the types of expressions I’m talking about:

You can’t be that sick, you look fine.”

“Yea.. I’m tired too.  I didn’t sleep at all last night.”

“I know how you feel, this cold has really hit me hard.”

“I’d love to stay home all day; you are so lucky!”

“Drink more water!  That will perk you up.”

“You just need to push past it.”

“If you get up, you will feel better. Laying around all day isn’t going to help”

“Have you tried taking more vitamin C?  I’m sure that would help”

You’re just being lazy.”

“Come on, it can’t be that bad”

“I can’t believe you canceled again.  You used the ‘sick’ excuse last time”

I’ve had comments such as these thrown my way several times and honestly, I still find myself stunned that someone would say these things to someone already going through so much.  So much that I often don’t respond how I wish I would have (or perhaps, at times, it’s good I didn’t!).  

So why does this often hit us so hard?   I think it’s because we are leveraging unbridled strength and courage each and every day to stay in the game.  To be there for ourselves, those in our lives, and to contribute as much as we can.  We are giving it our all, right down to our very core.  So, when someone questions our abilities or the validity of our illness, it’s often like a slap in the face. 

So, what do we do?  The way I see it, we have a host of options.  Here’s a few…

Decline to Respond

We can simply choose not to respond and, of course, that is perfectly acceptable.  Whether it’s because don’t owe this person an explanation, that our medical conditions are our own private matter, that we are simply too tired to explain or the comment is not worth our time and effort – whatever the reason, we can choose not to respond.  I’ve done this often myself.  Sometimes with regret – sometimes I feel should defend myself more.  I walk away kicking myself for not sticking up for myself.  Or, sometimes I miss my “moment” because of brain fog, because I’m just so shocked by the statement, or I just don’t have the energy to care enough.   Other times though, I’ve been glad I didn’t.  I probably would have said too much and in not a very nice way.   As part of the “declining to respond” bucket, we can also simply blow off the comment completely (though that can be easier said than done at times!).

Educate

Perhaps the expression was entirely innocent; the person simply doesn’t have an accurate understanding of what life with a chronic illness is like.  Honestly, some days I don’t either.  It changes daily on me!   In these cases, especially if it comes from a friend or loved one, perhaps sitting down and sharing more what’s going on is something that in the end may be most beneficial for the relationship.   These comments also sometimes come from mere acquaintances or even strangers.  So, what do we do then?   Do we share and hope that we’ve helped create a greater understanding with a member of society that will show more compassion and understanding with us and others going forward?  Or do we simply walk away – it’s not worth our time or energy and it’s none of their business?

Set Them Straight

This sounds harsh, but I mean it more so as being very direct.  There are some people in our life that we spend a lot of time with, they see our challenges, and they still don’t “get it.”  For example, we may have already told our loved one five times that our level of exhaustion isn’t the same as a “bad night’s sleep” for them.  And they still don’t get it.  So maybe it takes a creative analogy to resonate with them, a day in the life story, or a heart-to-heart talk about the impact of their comments.   Sometimes I remind myself how clueless I was before I got sick about what life with a chronic illness truly was like.  Yes, I listened, I supported, and I cared for others with an illness.   But that still is not the same as having a chronic illness yourself; you don’t know, until you know...   And then there’s others that you can talk or show them what your life is like until you are blue in the face and they simply will never get it or don’t even try to get it.   These are the most challenging ones, especially if they are part of a key relationship in our life.  The comments often mean more and the lack of understanding digs deeper.

I don’t have all the answers here.  I think the response we choose to give is so very personal to each one of us and to every individual situation.  These are just some of the thoughts that have run through my mind when it’s happened to me.  I think what’s most important is we need to keep focusing on ourselves and our own needs and self-care.   Yes, these comments may infuriate us, hurt us, and make us cry at times and sometimes we just have to let ourselves process those feelings and figure out what it means on the whole to us.  At times it may mean assuming positive intent.  Other times it may mean moving quickly past it or even the relationship.  Only we can decide what route to take and when. 

I do think it’s a shame that this is such a prevalent experience among us.  We have so much on our plates already; we don’t need more.  Knowing that this often seems to come part and parcel with a chronic illness though, it makes me so proud of every single one of us.  That we are that resilient and strong that we can deal with our illnesses – and all the rest that comes with it. 

There are many advocates and educators within our community and beyond that are working hard to change the stigma and the misconceptions that are out there.  I have much hope that we can change the world a little bit each day.   I have hope too that the stigmas, the comments, the judgments – all of it – will eventually, in time, evolve into a more supportive environment for us all to live in.  Many of us already are part of the change, showing and sharing what life with a chronic illness is really like.  Moments like this... they have a ripple effect.

Thursday, April 11, 2019

Emotional Superpowers?




Would it seem out-of-this-world if I told you that we all possess a wide variety of superpowers?  If so, hang on, because I’m about to share with you quite a bit about your superpowers!

It all starts with emotions.  There’s a tendency in society to label certain emotions as positive or negative.  Based on what I’ve learned through reading The Upside of Your Dark Side:  Why Being Your Whole Self – Not Just Your “Good Self- Drives Success and Fulfillment [1], this is far from how we should be viewing emotions.  Rather all emotions provide a robust amount of information to us.  For example, feeling good or bad lets us know about the quality of our progress, our interactions, and our environment.  As you may have experienced in the past, if you try to escape these emotions, you will miss out on this valuable information.

Life with a chronic illness can provide us with a roller coaster of emotions, which is why I’ve decided to do a bit deeper dive into this topic.  I want to understand more of what I’m feeling, what it all means, and what I should do with them.

So, let’s chat a bit about some of the emotions that often come with a chronic illness and see how they can be valuable to us, or more importantly, how they can become our super powers.

Let’s begin with anger – as it’s a pretty provocative emotion and one that many of us feel, whether about our illness or how people have treated us because of it.  Let’s first start with the premise that anger itself isn’t good or bad.  It’s what you do with it that matters.   When you think back on times when you have been angry, have you noticed that it may have caused you to take a few more risks?  Sometimes, taking a risk can be a really good thing.  For example, perhaps it provided the motivation you needed to share your feelings when you may have otherwise repressed them.  Doing so in a healthy manner can transition a hurtful situation into an understanding one. 

As I noted above, anger generally can motivate us to take action when perhaps we would not have done so.  By taking action, we also feel more in control.  If there’s one thing that life with a chronic illness comes with, it’s a lack of control in a lot of areas.  So, by allowing ourselves to feel our anger and put it into a productive course of action, we are gaining back some of that control.  Living in a world of ever-changing symptoms, adding control back into our lives is certainly a nice addition!

The next set of emotions that often comes hand-in-hand with a chronic illness is guilt – or it’s not-so-pretty partner, shame.  Feeling guilty is a tricky one when you live with a chronic illness.  The key question to ask in these moments is whether what you are doing is hurting or helping the situation.  Many of us feel guilty for declining invites, not getting enough done around the house, or not making it in to work because of our illness.  In these cases, the guilt is unwarranted.  By taking care of ourselves first, we are doing what we need to do to take care of our health.  We should not feel guilty for taking care of our core needs.  

There certainly are situations in which we should feel guilty for, such as being unkind to a friend or disregarding someone’s feelings.  In these cases, guilt acts as our moral compass and is a call to action to us.  It reminds us to be more sensitive in these situations.

In contrast, there is shame.   Unfortunately, many of us have encountered people trying to shame us for canceling plans, needing help, or even for being sick.  While guilt can be helpful – giving us a moment to reassess whether the situation at hand is something that we should feel guilty for (prioritizing our health is not one of them!) and if it is, the insight to respond accordingly, shame, on the other hand, is not helpful.  Shame strikes at the core of who we are as a person.  As such, it’s much harder to recover from than guilt and often can escalate the situation.  For example, has someone ever questioned the validity of your illness or the severity of your symptoms in a way that was condescending and hurts you to the core?  This emotional expression, shame, is not expression that helps any situation; rather it tends to crack relationships and shatter trust. 

The last emotion I want to touch on is anxiety.  Many of us experience anxiety, as we often don’t know what one moment or day holds to the next when it comes to our illness.  In these situations, anxiety can be a very healthy, helpful emotion.  It can be a great source of information for us.  If we can maintain the right balance of anxiety, it can help us in many ways.  It can heighten our perception of a situation, amplify our senses, and increase our ability to solve a problem.  For example, by having heightened awareness, we may be able to spot a symptom trigger before it turns into a full-blown flare-up.  Essentially, it’s our human alarm system.  We just need to make sure that we listen to it (rather than let it paralyze us) and respond in a healthy manner.  When we do so, it becomes our strength.

These are just a handful of emotions that are touched on in the book, but ones that I felt were relevant to issues we often face, sometimes daily.  I love the authors’ abandonment of the notion of labeling any of these emotions as positive or negative, discussing them instead from the perspective of each being valuable sources of information to us.  Anger, guilt, anxiety, and other “negative” emotions are really helpful in surprising ways, giving us more courage, regulating our behavior, and keeping us alert to our surroundings.   When we use them to our advantage and in healthy ways, they are sources of information that can really benefit us and lead to a more “whole” and fulfilling life. 

As the book states, “[w]hen you think about your emotions in light of the benefits associated with all feelings – positive and negative – you realize that you don’t just have one superpower, you have many.”
 
[1] Todd Kashdan, PhD, and Robert Biswas-Diener, Dr. Philos. (2014), “The Upside of Your Dark Side:  Why Being Your Whole Self – Not Just Your “Good Self-Drives Success and Fulfillment.”  New York, New York:  Hudson Street Press

Saturday, April 6, 2019

Chronic Illness Tips, Tricks, and Hacks



Life with a chronic illness, especially ones that there is little medical support for, entails trying to find options, any options, that provide some sort of relief or that minimizes the pain.  Thank goodness for Google, Facebook groups, and friends with similar illnesses. You all have helped me immensely along the way in this journey.  So, I’m coming back to you for more! 

First, though, I’ve been the lucky recipient of your knowledge; so, now I want to give back and provide you with my top 20 tips, tricks and hacks that have worked for me.  I can’t take full credit though for this list – you all have helped me compile much of it. 

I would love your help in adding to this list; I will happily repost this article with your additions.  Simply add your tip or strategy to the blog article comments section and a note if you want to be named in the repost.  

Here we go! 

1.      Lavender Heated Sleep Mask:  The feeling of just a bit of heat over your eyes or on your forehead is magical.  It lulls you to sleep and can chase away a migraine.  Lavender is known to offer a calming effect that also serves as a great sleep aid.  Tried and true!  It really works! 
2.      Oil Diffuser:    Building on the lavender success theme, adding to a spa mister a few drops of lavender oil to the water can be a sleep booster at night.  It’s always hard to tell if these things really work but for me, if I start it up before bed, all I know is that entering my bedroom to go to sleep, smelling that sweet lavender scent instantly sends me into a calming state.
3.      Meditation:  The power of meditation is often underestimated.  While it can take a bit to get the hang of it, it soon can be your first go-to for getting through difficult medical procedures, moments of feeling overwhelmed or frustrated, or even simply times where you feel you need a little extra peace or calmness.  It’s also great for days when you feel over-stimulated.   There’s many great options, including the free version of the Calm app, general meditation DVDs, or even free online sessions.
4.      Gentle Yoga  While you may not have had back pain before, spending hours in bed or on the couch can certainly bring it on.  There are several gentleyoga DVD’s that can help softly stretch your muscles, while not taking too much energy.  Even simply staying in a “child’s pose” for a bit can often relieve back pain a bit.
5.      Lumbar Cushion:  A lumbar cushion can also be quite helpful for supporting back muscles and reduce back pain when sitting.
6.      Ear Plugs:  Many people have told me about their sound sensitivities and for the longest time I just thought that this was one of those symptoms that I didn’t have to a large extent.  However, I have more recently realized that I do it; I was simply misunderstanding and very unaware of how sound was affecting me.  Recently, a friend told me that being in the rather loud restaurant we were in wasn’t good for her.  When I asked her to explain it a bit more, she shared how while it doesn’t necessarily have to “hurt” to be in loud noises (though I have been in a situation where loud noises have caused an instant flare-up), it’s the over-stimulation that being in a loud place creates that can cause our bodies to deplete our energy trying to manage it.  Once she said this – BINGO!  I realized that I have felt extra exhausted after such events but had just never made the connection.  She shared an easy solution for me – earplugs that block out peripheral noise yet still let you hear the person you are speaking with!  After asking around a bit, I learned that Vibes ear plugs was the ear plug of choice.
7.      Water Bottles:   Hydration can be a huge help to keep some semblance of an energy level.  However, the big issue I ran into with this was my lack of coordination. I was constantly knocking over my glass of water.  Cleaning up mess after mess, was exhausting.  Finally done, so done, with this issue, I bought a few water bottles with snap-tops that I use every day now – at home, in the car, or when at a friend’s house.  No mess and because I’m carrying it everywhere, I am drinking more!
8.      Heated BlanketA heated blanket can be especially valuable for those of us that have temperature sensitivities. 
9.      Clothes:   Temperature sensitivities come into play again here, along with comfort.   Layers are a must - without them, being cold can ruin a once-in-a- great-while day out.  “Restrictive” clothing is also an issue – things with tight bands can be incredibly uncomfortable.  Loose clothing, without “bands” are great finds.
10. Light Therapy Lamps:  I’m always a little skeptical if things really work, but I’ve been using a light therapy lamp for almost four months for about 30 minutes a day and my migraines have drastically decreased.  At this point, I’m pretty convinced it’s working to some level because my usage of my migraine medication has decreased and my number and intensity of migraines has dramatically dropped (they haven’t completely disappeared but there’s a very noticeable decline).  I’ve heard from many that it’s also helped them as a mood enhancer as well as for their migraines.
11. Pill Organizers:  Two words for you:  Brain Fog! If I didn’t have a pill organizer for all my supplements, I would be double-taking or missing my daily dosage almost every day.   This helps keep me organized. And if I’m being super honest, it helps me remember what day it is.
12. Handicapped Parking Pass:   I didn’t know how valuable this would be to me until I got one.  The time out of the house it saves me and the decreased distance I need to walk to go somewhere has given me a bit of independence back.  It has also help relieve some of the duties from my caretaker as on the days I do get out, I sometimes can fit an extra errand or two in and be back home and resting in the same amount of time.
13. Canes:   Admittedly, I don’t use a cane at this point. However, there are plenty of days that I feel that I should be and it has been recommended to me.  At times I’m unsteady on my feet, have fallen down the stairs, or simply need a bit extra leveling to my gait.   It’s definitely on my radar as an option.  Canes come in some pretty cool styles these days too!
14. Protein Bars:   Having one handy can really help if you find yourself in need of an energy boost.  A back-up bar can also really help get you through a longer than expected excursion out.  A protein bar or even a package of nuts, has definitely saved me more than once.
15. Phone Alarms:  Two words:  Brain Fog!   Time flies, we zone out, and all of a sudden we are running late to a doctor’s appointment.  Sound familiar?  I now live off an alarm-based system for my daily activities.   It started with just alarms, but I quickly found them going off and then not knowing what they were for.  Not wanting to be outsmarted by my own hack, I’ve now started labeling them on my phone so I know what to do when.
16. Plan Ahead:  Or as least as much as possible.  If you live in a two story, you know how exhausting the stairs can be.  Now, if I am upstairs, I try to think of everything I will need for the next few hours before heading downstairs.  This alone has saved me from a walk/crawl up the stairs multiple times a day for one-off items.
17. Roomba:   I haven’t invested in one of these yet, as my caretakers do my vacuuming, but this is coming right up on my must-have list.   Vacuuming – the push, the pull, it’s all so exhausted. The Roomba not only gets the job done but it’s a bit entertaining to watch.
18. Grocery Shopping:  Online or pick-up shopping has become a must-have for me when my caretaker isn’t able to do my shopping.   Between walking the aisles, putting things in the cart, loading the car, unloading it, and putting everything away…. Exhausting!  This task takes me down every time!
19. Amazon Account:  I have found this priceless for buying groceries and other essential items.  The delivery is quick (usually two days) and the options are plenty.  No more exhaustive trips to the store for light bulbs, toilet paper, or a new book to read.
20. Hobbies:   Finding a hobby you to do on challenging days, right from our couch or bed can be priceless.   There are many options; for me, I’ve found writing, reading, drawing/coloring, crafting, and binge-watching television (if that can be considered a hobby) to be great distractions from the challenges of the day. 

I hope this list has helped or at least got you thinking of what tip, tricks, or hacks that you can integrate into your day that will save you some time, make something easier, or minimize your pain.  Every little trick helps!  

My list is far from exhaustive.  If you have some of your own tips, please feel free to share them in the comments so we can build the list and learn from your success!

Additional great ideas from readers:

                   Breathing Exercises:  Breathing exercises can be of great help with getting through a difficult procedure, flare-up in symptoms, and a de-stresser. There are some fabulous DVDs, free apps and online resources out there that can help you get a good rhythm and your strategy down. Once you've got it down, you are ready for whenever the need arises.



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