One of the first mindfulness practices I engage in every day is asking myself “how am I feeling today?” This sort of self check-in has become a daily habit of mine and has really helped me identify in my first waking hours what are going to be my biggest symptomatic hurtles and challenges that day. Being able to identify these early in the morning has helped me plan my day ahead of time so that I prioritize the tasks and responsibilities I know I can accomplish and maybe reorganize other tasks for the future. As many of you know symptoms change moment to moment and I just find that a self check in habit has been a strategy that helps me identify the symptoms that are most bothersome so that I may implement strategies that help reduce their severity

The second mindfulness practice I engage in on a regular basis is not multitasking. I know this sounds really silly, and possibly overly simple, but there are so many sources of stimulation in our lives today that we often times find ourselves multitasking when we didn't intend to. The biggest problem I have with multitasking is it reduces my ability to be aware of what is going on in my body at all times. I also find that multitasking often increases my stress and anxiety so reducing instances where I am multitasking or trying to multi task has helped me remain self-aware and reduce moments of anxiety and stress.

The third mindfulness practice, or practices, I engage in are breathing exercises. I have two go to exercises that I utilize to help center myself in moments of both physical and mental overwhelm.  I’ve found both of these practices very centering. They help me relax which often reduces the intensity of symptoms I am facing in that moment.
    1. The first is Single Nostril Breathing also known as Alternate Nostril Breathing.  I find that this practice calms me quite quickly and that if I can take 30-60 seconds to do it, it just helps.  You can read more about the practice here at MindBodyGreen and of course watch the video linked above where I explain the practice.
    2. The second is simple went single nostril breathing is either too awkward for that moment in time or I really can’t use my hands for what ever reason.  This is a inhale/exhale counting exercise where I inhale for a count of 4, hold my breath for a count of 5 and then exhale for a count of 7.  You can choose whatever count pattern you find works for you.  This breathing exercise has similar benefits to the first but doesn’t require the use of my hands or arms to do so.  Take a look at the video for more instruction.

The fourth mindfulness practice I engaging on a regular basis is a pretty simple one. I close my eyes. Closing my eyes helps reduce external stimulation that my mind is managing in the background. This is a simple way for me to basically shut off one source of stimulation so that I may concentrate on what I need to in the moment. I especially find this practice helpful when I am struggling to talk and get my ideas out but also in moments of stress where I simply need to reduce external sources of simulation. It may sound a little weird but closing your eyes is one of the ways we as humans relax. I mean, you sleep with your eyes closed…right.  So this practice simply helps me re-center myself when I don't necessarily want to engage in a longer breathing exercise or I'm trying to communicate with others and struggling for the words.  It just helps me be overall more mindful of what is going on with me internally in any moment and helps me stay aware of my body and what its telling me.

The final mindfulness practice I engage and regularly is meditation and while many of the practices described above could be considered meditation I tend to also do a formal practice in addition to the strategies described above. Meditation can take on any form and I want to be really clear about that. For me meditation is about finding a comfortable position and helping me quite my “chattery” mind so that I may calm my body and as a result reduce the intensity of my symptoms.  But meditation might mean taking a walk, listening to music, dancing, using a guided meditation app or "journalling" (sp?) among many other forms. Basically this practice, similar to my self check in practice, is about taking the time to check in with my body and focus on giving it time to relax and recenter.


So those are some of my mindfulness practices that help me manage the impact of my symptoms on my day to day life.  If you have any others you find are your go to’s I’d love to hear about them.  Thank you so much for reading.

Take care and remember its about the journey…

~Liz

Incorporating practices of mindfulness into my life has been game changing.  Such practices have helped me identify places in my life that added stress and anxiety--which are exhausting in and of themselves--allowing me to make changes that have improved my daily live.  While I have multiple mindfulness practices that I have incorporated into my life since first starting this journey 6 years ago the main one I started with was asking myself "how am I feeling today" as soon as I woke up.  This allowed me to assess what changes I needed to make to my day so that I got through it more smoothly.  Sometimes this meant taking sick time.  Sometimes this meant working from home.  Other times it meant eating really bland--I mean PLAIN food with no flavor,  or taking a medication to manage my symptoms or even carefully choosing the fabrics I was wearing to reduce the impact of allodynia. 

This practice is probably my most simple and impactful one I've incorporated.  Being aware of what your facing, although it can change over the course of the day, can help reduce the impact of symptoms on your life or simply reduce your stress so that you can get to a better place sooner--at least that is the hopeful goal.

Out of my journey with mindfulness I discovered how deeply stressful clutter and excess was in my life. While minimalism may not be for everyone I discovered that by implementing principles of minimalism, i.e. Having only what you need and loving and using what you have, that I was able to reduce the number of items I had to take care of.  This reduced stress by decreasing the amount of time I spend caring for, organizing and managing all of my belongings.  This was by no means easy and I began this journey by diving into my wardrobe.  I felt that this was a good place to start because minimizing my wardrobe didn't effect any of my family members and allowed me to work out the kinks of my own preferences about minimalism.

After tackling my wardrobe and creating 2 curated capsules totaling about 65 items I went on to minimize other areas of my home, from the kitchen, to the bathroom, bedroom, living room...etc.  While this took getting my family members on board to some extent, most of what I minimized were items we simply didn't use or want.  This process really taught me how stressful I find clutter and how reducing our belongings is a great strategy that reduces the amount of time and energy it takes to keep a clutter free home.

I'll be honest though--there is still clutter--just less of it.  :)

You've probably heard of a sleep routine before.  This has been immensely helpful and although I still have issues getting deeply restful and restorative sleep I have found that having a sleep routine increases my success rate in getting restorative sleep.

For my sleep routine this means no screens a half our before bed and preferably an hour if possible.  Reading or meditating in the evening just before bed and taking supplements that support sleep--sometimes these are herbal like CBD or Chamomile tea, other times these are mineral like manganese.

This is one of the more recent strategies I've added to my repertoire. If you're like me and one of the manifestations of your condition is IBS you may find it intuitive eating helpful. My understanding of intuitive eating is that it is about listening to your body, reducing shame surrounding eating certain foods and most importantly recognizing the signals our body uses to indicate it is in need of nourishment.

I have found that eating intuitively and listening to my body has reduced the severity of my IBS symptoms. While it has not eliminated it completely the number of days where I am severely impacted has been reduced. I've also discovered that I'm better able to identify whether I'm thirsty versus hungry and when I am satiated or not. I'm also beginning to find this practice beneficial for reducing the voice in my head that says "you should eat this not that". It is help me manage my shame and self-consciousness around food and its relation to body image and self-esteem.   All in all this is a type of mindfulness practice and I am thankful for what it has taught me thus far.


I hope these strategies help you too, or at least give you more information as you find what works for you on your journey.  As always thanks for reading, take care and remember...its about the journey...

Sincerely,
Liz

One of the weirdest symptoms I’ve dealt with since I was diagnosed is called Allodynia. Its a sensitivity to touch but this isn’t your typical type of sensitivity.  Imagine feeling like every piece of clothing you put on your body feels like scratchy wool no matter how buttery soft the material.  That is what allodynia feels like. At least for me.  It makes it hard to do anything because I literally am so distracted by the sensations all over my skin that all I want to do is…well…wear absolutely nothing.   I know, super weird.  But its an issue I’ve dealt with on and off since before my diagnoses.  Post diagnosis I finally got a name for it.  While I don’t deal with this symptom constantly…thank the universe…when it hits its quite frustrating.

Is it foggy or is it me? I’m guessing that’s not a question most people ask themselves.  But it's one I ask myself from time to time.  Imagine you are looking through a weak fog or camp fire smoke and you get the experience of what this symptom is like.  Now I feel incredibly blessed that each time this has happened it’s gone away.  That is not the case for everyone.   Some people start getting foggy (aka blurred) vision and their normal sight never comes back.  For me this symptom comes on rapidly, lasts a few hours to a day and then subsides.  I usually need good resting sleep to get it to go away and that is not always possible

Yes you read that right.  One of the weirder symptoms I deal with is speech changes.  For me this has manifested in certain words suddenly being spoken with a different accent.  Not all of my speech, mind you, just a word here or there.  I’ll be talking and all of a sudden I’ll say “about” with a more Canadian accent, or hello in a British one, the most amusing yet was when I said good morning to a friend of my with a clear southern US accent.  We both looked at each other for a solid minute and were like “what just happened to your voice”.  I’ll also have pitch breaks or slurred speech now and again.  While most of the time this is funny it can be VERY ANNOYING!!!!

Imagine you are typing on a computer and you suddenly lose all control of your fingers.  You’re typing away and suddenly the words on the screen start looking a bit like this: I haev no cnrol fo my fingers rihgt nw.  Some of the words are fine and you can generally tell what I was trying to write but the even the computer is like “What????”.  It can’t figure out what I meant to write.  Luckily when this happens I’ve gotten skilled at the talk to text feature and simply switch tactics and start dictating my emails and other work/life related communications.  I often laugh quite hardily as sometimes as the creativity of auto correct.  This feature has come up with some pretty unique translations of my gobbledygook.  One of the funniest ones was when I attempted to write “grant opportunities” and it some how corrected to “great titties”.  I still laugh about that one every time I have to write opportunities.  At least this weird symptom has had the side effect of hilarity.  hahahahaha

I know it sucks.  I wish I had some better news for you.  But this is one of the lessons I wish I learned sooner rather than later.  Getting diagnosed felt like a relief.  Like I finally had validation that something was actually wrong and I wasn’t losing my mind.  But along with that diagnosis came some hope that maybe I’d get better.  Now I’m not against hope.  I’m all for hope, but I also want to be realistic with the possibility of recovery. The truth is that the medical community, in my experience, knows so little about ME/CFS/Fibromyalgia that a “cure” is a long way off.  What I wish I knew when I was first diagnosed was that the reality of this lack of knowledge we have surrounding these conditions creates inability to really cure the underlying causes of the condition.  If we don’t understand the underlying causes then we are left only treating the symptoms.  Which brings me to my next bit of wisdom

Oh boy can they make you worse…so much worse.  I’ve been through a myriad of different trials to treat symptoms.  Some of which had the opposite of the desired effect.  Whoopsie! We meant to help you sleep not cause insomnia.  Whoopsie! we meant to reduce your migraines not cause them.

Thanks a bunch peeps…I really appreciate it!

I just lost another week or two of my life—like I hadn’t lost enough of already.

Finally I stopped trying most drugs because they just seemed to make everything worse.  I wish I had known this sooner and been more cautious and inquisitive with my doctors.  I really wish I had asked more questions and understood how bad these drugs could make me feel. 

I will say that not all of the treatments I’ve tried had horrible consequences but many of them did and I simply wish I had known the likelihood that treatments could make me worse before I even tried them. Which brings me to my next point.

This part kind of sucked but if I’ve learned anything from being in and out of various medical systems,  seeing a wide assortment of specialists and trying a myriad of treatments, some of which I shouldn’t have even tried, it’s that you have to self advocate.  One of the best things I’ve ever done is brought a second person with me to important appointments.  Not only is it a second set of eyes and ears but it’s someone who can provide support if you feel overwhelmed or forget the questions you wanted to ask.  They can be the note takers and nudgers to remind you to ask the uncomfortable questions that seem to slip my mind as soon as I see the white coat. More importantly they can support you in your advocacy because they are someone who understands, is on your team and rooting for you.  I can’t tell you how many times it’s been beneficial to have a second person with me at important appointments. They often get more information out of the doctors than I do alone. It’s almost like having a second person there who believes what is happening is really happening makes the doctor less like late to brush you off.  Everybody slows down. Which is good because these conditions are complex and need more time to discuss. I wish I didn’t have to say or write that but that has been the case with my experience.  On to the next…

This is a hard one. It's very difficult to navigate a chronic illness when it's constantly changing. But who doesn’t love an extra challenge. Am I Right? (HAHA) I’ve found that my symptoms are always changing. More importantly which ones are most prominent or dominant shift. This makes it really hard to manage and more importantly hard to treat because it's an ever moving target.

I wish I had known this going into it, and understood when I was diagnosed that my symptoms were going to constantly, and I mean constantly, change. No one day is ever be the same and a treatment or medical device I might need one day I won’t need the next.  It's like an unpredictable target that disappears and reappears at random.  Try getting a bullseye on that one.  HA.

So this isn’t a new phenomenon people get this in all walks of life but my advice…

Haha…here I am giving you unsolicited advice  on unsolicited haha.  Well maybe because chose to read this it isn’t totally unsolicited…so here it goes

Everyone deals with unsolicited advice from time to time but the most annoying thing about having a diagnosis is when you share a diagnosis with people it seems to open up the room for conversation about what they think you should try or do to feel better. While this often comes from a place of kindness and caring it can be grueling to constantly have these conversations. So if you like giving advice stop, please, just stop, unless I bring up the topic myself.  Thank you in advance.
Most of the time when people give me unsolicited advice I thank them say yes maybe I'll give that a try and then usually courteously somehow get out of the conversation by changing the subject or simply walking away. Walking away is usually a non-option if it's a family member, friend or you are in that awkward I’m cornered situation. (SOOOO AWKWARD).

Now not all advice is bad advice, unsolicited or not, but it can get grueling when it's a constant topic of conversation.  I guess all I want people to know is that this is a journey and while I welcome most thoughts and conversations, please don’t perseverate on the topic.  It already takes up enough of my time and energy and I’d rather not spend extra time dwelling on it if I don’t have to.  Instead let's talk about ice cream, or the weather…anything other than the latest treatment or cure all.

Thanks...now on to the next lesson...

This is honestly one of the hardest lessons that I had to learn. We live in such a go go go society that learning to listen to your body and what it's telling you is an incredibly difficult. I don't know about anyone else but I have been incredibly well-trained at ignoring what my body is telling me. It has taken time and constant awareness to make sure that I actually listen to what my body is telling me. This is had two major benefits. The first is that when I listen to my body I'm able to more accurately workaround or treat whatever symptom is more dominant at that moment in time. Being able to focus on reducing that particular symptoms impact on my life allows me to be more productive and happy in the long run. The second is that I'm much more able to predict and prevent certain symptoms because I know their major triggers, or at least a constellation of scenarios that seem to make certain symptoms worse. I'm not always successful and sometimes I have to accept that its just out of my control but by listening to my body I can sometimes reduce the severity of a flare.

We live in a fast paced world.  I get it. It’s about how much you can get done in the shortest amount of time.  But in my experience I pay a heavy price if I push myself.  This goes hand in hand with the previous lesson.  Learning to slow down has been a humbling process full of very active days followed by weeks of recovery.  I’ve learned that if I just slow down in the first place I’m able to maintain a consistently higher level of activity. But there is a sweet spot and as soon as I pass that narrow place between just right and too much I pay for it.  By listening to my body and treating feedback its giving me I have found more balance and stability.

This goes hand in hand with my next piece of advice

 This one is really hard.  Probably the hardest.  I haven’t mastered it but learning to say now is vitally important to finding balance.  What I have learned about saying no is that honing this skill has allowed me to say no to things that are less important so that I have energy and time for the things that are most important. I think that's a piece of advice and wisdom we could all use a little more often our lives. Well it is not easy practice makes you better at it. And I am still practicing.


So those of eight things I wanted to share and well I know there are probably many more I felt like this was a good start. As always thanks for reading, take care, and remember… it's about the journey…

~Liz

I’m an imposter—at least I feel that way.  I’m afraid. Afraid people will label me as a fraud and recent experiences have only reinforced this fear.  But I can’t live in fear and I realize that fear is part of my problem because it creates the very feedback loop currently trapping me.

You see, my body is a mask and like wearing a mask, my body tells one story through its appearance when underneath, another, very different story is playing out.  As a result I am constantly torn by the outer worlds feedback that I’m normal, while my inner world is crumbling, unable to cope with a myriad of symptoms that ravage my systems, invisible from the outside.  And yet, again and again I’ve caved into the outer worlds story line, giving into the fear that if I stand by the truth I experience people will just call me a wolf in sheep skin.  We call them like we see them here in America.  What ever happened to “don’t judge a book by its cover.  

But I’m done.  I can’t pretend that I’m okay when I am not. Because pretending reinforces that I’m an imposter.  But this is not a fake it till you make it scenario.  I can’t fake the symptoms away.  I may look fine but my reality is that

I haven’t digested food for weeks, resulting in malnourishment.

That I have a migraine piercing my brain like being stabbed with an ice pick on top the skull.

That I feel that prickling sensation, like when your foot falls asleep, all over my body for days.

That I spend nights staring at the ceiling hoping I’ll sleep but never do.

and so many more…

I’m an iceberg, you see one tenth of my reality.  My pretty face, blond hair, blue eyes and trimmed physique.  You do not see when I have to call family to pick me up.  No, I don’t me give me a ride in a car, I mean literally carry my collapsed body. Or the days where the only seat I see is the toilet.  Ain’t that a pretty picture.  

I recently realized that if I go along with the outside worlds story I betray myself and I give permission to the world to disbelieve me.  But my reckoning has come.  I’ve felt the consequences of pretending “I’m okay”.  I lose.  So I’m going to tell my story because honestly I’ve already lost and what happens when you find yourself at the bottom.  You realize the cavern you thought existed, the one you feared and actively worked to stay away from blinded you from the actual one in front of you.  The one I’m at the bottom of right now.

So that’s it. I’m baring it all.  Letting that facade crack so you might have a glimpse of my disability.  I’m vulnerably speaking my truth and hoping that despite my pretty face you’ll have the courage to believe my words because I know that you too are more than what you appear to be.

Sincerely,

Liz