Tag: Mindfulness

Mindfulness Journal

On By WendyIn Chronic Illness, Mindfulness5 Comments

journal

I thought I’d share with you new tool I’ve been using.

I recently read an article over on Buddhaimonia about keeping a mindfulness journal.

He talks a lot about keeping a journal and how to maximize your journal as a mindfulness tool.

There was one suggestion that he made that I thought would help me to not only recognize when I’m being mindful, but also help me to actually be more mindful.

My mindfulness journal includes – 3 Mindful Things Each Day.  Each day I try to write down 3 times during the day that I noticed I was being mindful.  This hasn’t just made me note times I’ve been mindful, but it encourages me to be more mindful.  I’ll be doing something and think, “whoa, take your time and really notice what you are doing, you can note this in your journal later.”  It brings to the surface that I need to be more mindful.  It also helps when I feel I haven’t been very mindful when I can think back over my day and realize, wow, I have been mindful today.   I can increase the number of mindful things journal about if I want, but I’m trying to always note at least 3.

I’ll give you a quick example of one.  I was sitting in the car waiting for Stuart to come out of the store and I started to reach for my phone to keep me company, instead I thought; “this is a great mindful opportunity”.  So I started to really notice all the things around me.  I felt the breeze has it caressed my skin.  I saw it was slightly blowing a sign in the window and making it wave a little, I noticed the reflections in the glass and how the colors change in the reflection from what they look in real life.  I noticed a little bug crawling across the windshield, and watched him on his journey.  I felt the suns warmth, and closed my eyes to really feel the atmosphere around me.  I took note of how my body felt pressed against the seat….   I tried hard not to think about what we would be doing next, I wanted to just be there in that moment as it was.

You can see what I mean, I tried my best to be right there in that moment, instead of distracting myself with my phone.  Because I’m writing these moments down, it makes me remember to do such things more often.  Hopefully, being mindful will become more second nature.

I’ve kept a gratitude journal for a long time.  I write down 3 things I’m grateful for each day.  this is a practice I suggest everyone take the time to do.  It really helps us put in perspective that we have something to be grateful for every day, even on days we don’t feel like it.  (some days when I’m having a really hard day I will realize how grateful I am for running water, having food every day, having a safe place to live….  We can always find things to be grateful for, we just need to remember it.

Do you keep a journal?  Is it specific like mine, or do you wir

 

 

What’s this thing called “Vertigo” anyway?

On By WendyIn Chronic Illness, Meniere's Disease, vertigo8 Comments
vertigo caught in motion
me during a vertigo attack – photo by w. holcombe

There are different definitions for the word “vertigo” (noun – ver·ti·go \ˈvər-ti-ˌgō\)

Webster’s Dictionary defines vertigo as:
a feeling of dizziness caused especially by being in a very high place

1a : a sensation of motion in which the individual or the individual’s surroundings seem to whirl dizzily
1b : a dizzy confused state of mind

On American Family Physician’s site I found a great article, Dizziness: A Diagnostic Approach.  It describes all kinds of Dizziness, the different causes and treatments.

In it they describe vertigo as : (A) False sense of motion, possibly spinning sensation.

I could go on and give you different definitions, many would be a bit different from others, but the main thing they have in common, one feels as if they are in motion.

Vertigo is not just dizziness, it is a type of dizziness, just as lightheadedness, and disequilibrium are but it is more than what most people consider dizziness.

Vertigo is the sense of motion.  Most often it includes seeing a spinning sensation, it also include other feelings of motion including, a sense of falling, rising or being jerked in one direction.  These are not encountered as often as rotational vertigo. (Understanding Vertigo and What to do if you have it. – The Washington Post – 2014)

I thought I’d take this opportunity to tell you, as best I can, how vertigo feels to me.

I have rotational vertigo (seeing my surrounding spin around), and motion vertigo (I often feel like I’m moving when I’m not.  I will feel like I’m suddenly free-falling, or being jerked around.)

The best way I know to describe rotational vertigo is to give you an example most people understand.  Remember when you were a kid and you used to spin around and around until you fell down seeing the world spin around you, (if you don’t remember this, or have a loved one with vertigo, I encourage you to do it now to have a sample of what we see).  Now that you have that image, imagine seeing that but it doesn’t stop.  When you just spin around the spinning sensation stops in a few seconds, for me it can last a few minutes to a few days.  The average is about 4 hours.  When I have this type of vertigo attack I often get very sick.  Imagine motion sickness times 1000.  I will throw up for hours, it can get so violent that I will lose control of every bodily function.  It is horrific.

I used to have other motion vertigo every once in a while, now it comes much more often.  I often feel like I’m in motion when I’m not.  I’ll feel like I’m on a boat, I’ll even feel like I’m walking around while I’m sitting still.  In the past year I’ve started having vertigo that makes me feel like I’m being thrown around the room (the first time this happened I thought I was dying, after an Ambulance ride and spending over 9 hours in the Emergency Room I was told this is a different form of vertigo.  (freaky)  I’ve also started having feelings as if I’m free-falling, I can only imagine it’s how one would feel if they stepped into an open elevator shaft.  This is one of the most frightening things in I’ve encountered.

Rotational Vertigo is not always at the same speed.  Sometimes I see my surroundings spinning by in just a blur, during these attacks I always get sick.  This will include hours of vomiting and sometimes I will lose all control of my bodily functions.  It’s horrific.  Other times my surrounds will spin by at a much slower rate.  After having rotational vertigo for so long many of my attacks are not as horrific.  I don’t panic now.  I will stay as calm as possible and just watch the world spin by, mostly I’m really bored.  This is the time when my mindfulness practice really comes in handy.

I’ve learned if I focus on something about 12 – 18 inches from me I often don’t see things go by quite as fast.  If the spinning isn’t too fast I will watch TV reading the captions.  For some reason if I concentrate on the captions the vertigo slows down.  This does not happen if I try to read anything else, that just makes me sicker.

I used to throw up no matter what.  I may have mentioned this before, maybe not, but I’ve had 2 doctors tell me that if medicinal marijuana were legal they’s prescribe it for me.  So I’ve tried it to see how it helps.  I can honestly say that I believe it has stopped me from going to the ER many times for dehydration.  It stops me from throwing up.  That is amazing to me.  I very rarely throw up now.   It can also calm down an attack if I use it fast enough.  (if you’d like to know more about how I use this to help, feel free to ask, I will say that I never feel high, I use very little, just enough to help me.)

Now, do you understand more about what Vertigo is and what my vertigo feels like?

If you suffer from vertigo, do you have similar experiences or is your experience different?

STOP

On By WendyIn Chronic Illness, Invisable Illness5 Comments

This photo symbolizes what I need to do…
STOP.
Stop and listen to what my body says.
Stop and look, really look at everything.
Stop and smell, and see, and taste…
Stop and breathe.
Remember to STOP and be mindful.

stop sign

this was part of the Chronic Pain and Illness Photo Project 2016

The theme for today was Mindfulness.

Equanimity Quotes

On By WendyIn Chronic Illness6 Comments

I am in constant search for equanimity.

The quotes on this page remind me what equanimity means and how to cultivate it.

equanimity

toni bernhard equanimity quote

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Finding equanimity when chronically ill can be a challenge.

How do you find an inner calm while being chronically ill?

Mindfulness Quotes

On By WendyIn Chronic Illness10 Comments

Mindfulness practice has helped me get through some of the roughest patches of my life.  I haven’t been practicing as much as I want and would like to resume, I thought a good way to start would be to post a few of my favorite quotes on mindfulness.  I hope you enjoy them too.  (all photos were taken either by me or Stuart)

“Mindfulness is simply being aware of what is happening right now without wishing it were different;

enjoying the pleasant without holding on when it changes (which it will);

being with the unpleasant without fearing it will always be this way (which it won’t).” ~James Baraz

palm tree palm springs

“In the end, just three things matter:

How well we have lived.

How well we have loved.

How well we have learned to let go” ~Jack Kornfield

butterfly on flower

“Be kind whenever possible. It is always possible.” ~Dalai Lama

“Realize that this very body, with its aches and its pleasures,

is exactly what we need to be fully human, fully awake, fully alive.” – Pema Chodron

road runner porch palm springs

“If you want others to be happy, practice compassion.

If you want to be happy, practice compassion.” ~Dalai Lama

“Be happy in the moment, that’s enough.

Each moment is all we need, not more.” ~ Mother Teresa

** One reason I haven’t been keeping up my mindfulness practice like I used to is that the depression side of my Bipolar Disorder has been taking over my desire to do many things.  I started seeing a new psychiatrist on Monday.  It was a very in-depth appointment.  I took a lot of psychiatric tests before I saw him.  They mainly showed that I have a bit of a hard time concentrating.  Two of them weren’t really fair because they are exactly like a “game” on Luminostity that I play a lot, if I hadn’t been playing that for a while I would never have been able to do as well on those tests.  We discussed my past treatments, what’s going on, all kinds of stuff.  He is adjusting some of my medications, and referring me to a therapist he thinks would be good for me to see.  I will go back in a month.  I’m feeling better just knowing that I am much more comfortable with my care provider and think this is a very positive move.

 

Creativity As A Way To Cope

On By WendyIn Bipolar, Chronic Illness, Creativity7 Comments

As you look around the chronic illness community you will often find that we use creativity as a coping mechanism.  There is science to back up our intuition that creativity is a good thing for us.

“When we are involved in (creativity), we feel that we are living more fully than during the rest of life,” Csikszentmihalyi said during a TED talk in 2004. “You know that what you need to do is possible to do, even though difficult, and sense of time disappears. You forget yourself. You feel part of something larger.”

This quote comes from a much larger article on this subject I found on CNN’s site.  I thought it extremely interesting, perhaps you will too.  This is Your Brain On Crafting.

Today I thought I’d share with you some things I’ve been doing recently to spark my creativity.  I received a tablet for Christmas, it comes with a stylus so I can draw right on the screen.  I love it.  It’s hard when I have very little space, and I often have to stop working very quickly to bring out a lot of art supplies, so learning how to create art on the computer has been wonderful.  I’ve been using an app called Sketchbook. They post challenges that you can take on if you like.  This has been perfect for me.  I have had a very hard time creating art in the past year, deciding on what to do has been too hard.  The challenges give me a focus.  It’s like having an assignment back in school.  I get so involved in these projects that times goes by without me noticing.

 

 

If you would like to see the photos larger just click on one and you can see a slide show that will show them in a larger size.

The assignments were:

  • Upper left – Biggest Fear – Title “The Monster Within”
  • Top Right – Female Human Animal Hybrid – “Butterfly Woman”
  • Middle Right – Modern Mythical Creature – Loch Ness Monster “Nessie”
  • Bottom Left – Person I’d most like to meet – “Siddhārtha Gautama” (Buddha)
  • Middle Bottom – Abstract Tree
  • Bottom Right – Dream Home

Do you have a creative outlet?  You don’t stress thinking you are good at it or not, just do something.  No one else ever has to see it.  Coloring books are really popular right now, this is a great way to get your creative juices flowing.  Is there something you have always wanted to try?  Photography?  Learning how to crochet?  Knit?  Cook?  Stamping? Paper Crafts? Jewelry?  Poetry? Writing?  So much to try, so little time!!

After decades of research by Professor Mihaly Csikszentmihalyi he found getting involved in something creative produces the same effects as meditation.  Something he calls flow.

“When we are involved in (creativity), we feel that we are living more fully than during the rest of life,” Csikszentmihalyi said during a TED talk in 2004. “You know that what you need to do is possible to do, even though difficult, and sense of time disappears. You forget yourself. You feel part of something larger.”

If you’ve been reading my blog for long, you know I’m very into mindfulness and the benefits of it and meditation.  So learning this made me very happy, especially since I just haven’t been able to meditate recently.

(shh, I’ll share a little secret with you, I’ve been really depressed for a long time now.  The antidepressants I’m on simply aren’t working.  Things need to change.  I’ve had a psychiatric nurse practitioner here who writes my prescriptions, but she isn’t very good at working with me since things have changed.  I’m bipolar, I’m having a severe mood change, I need help. So I’m searching for someone I can really work with, and I think it’s time for me to go back into therapy.  I’m working on it, but it is taking a bit of time.  While I’m finding the right doctor and therapist that click with me, I’ll be trying to do as much work as I can to help myself.   Including, being a lot more creative.  I plan to post  much more about my days, to see just how I’m doing, the good days, the bad days, and all the days in between.  I hope you will join me on this journey.  I might even post more of my challenges.)

Keep Calm and Create

 

 

Where ya been?

On By WendyIn Chronic Illness, Chronic Pain9 Comments
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vuible.com

When I’ve been away from blogging for a bit it’s really hard to get started again.

I keep thinking…where do I start?

I’ll have a good day and I will start to write, and get overwhelmed….well I don’t want to mess up a good day, now do I?

Then I’ll have a string of bad days…oh yeah…we know those….and I think, I should blog about those, but I don’t want to sound like a broken record.  After the last post I put out, I thought, Gosh…same crap, different day.  Not completely, no two days are ever completely alike, but you get my drift.  Sometimes people forget a Chronic Illness is called Chronic for a reason.  For me, I do understand that….I know my illnesses are not going away, maybe they will get better, maybe worse…. but going away…don’t think so.  I do not, however, completely understand it when they change.  And lately, they have changed, a lot.  Do I want to talk about all of that….well I have talked about some of it, and I’ll probably mention more of it…some I’ll probably mention later….oh you know me, I talk about everything.  It will all come out eventually.

Mostly my moods have been, well, in the crapper.  Hubby and I and the furry babies to have fun.  Laughter is the greatest isn’t it?  But the migraines and vertigo…..the fear….the fear…it just doesn’t go away.  I’ve had so much pain and vertigo over the last few months, I live in constant fear.  and, pardon the pun….but that scares me.

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healthshire.com

I know you all want to hear about my complete melt down where I felt like I should have been committed…I now understand what they mean when they refer to people having a “nervous breakdown”.   But really, do you really want to hear about that?  Tell me if you do, and I’ll tell you about it…just know I’m OK.  I didn’t hurt me or anyone else.  I just kinda flipped out…yelled, screamed, cried…all at the same time….and did it some more.  Then I was exhausted…slept…and cried a lot the next day too…..

I can tell you a few things that I’m pretty darn sure contributed to it….maybe you won’t worry so much after that.

  1. I was on a certain medication for my migraines, it is also an antidepressant.  It wasn’t working, so I went off of it.  I was not on high enough of a dose that I should have needed to taper off of it.  I think that was wrong.  I crashed right after I stopped taking this drug.
  2. I have a lot of crap going on.  Still having very intense migraines…A LOT.  Like almost every single day.  And vertigo, the same thing.  To the point, I hate leaving the house.  Did I mention fear??  I have been leaving more, and most of the time I have a vertigo attack when we are out.  I’m starting to get less and less freaked out by this.  Just get me in the car, and I’ll deal.  I’ll talk more about my vertigo attacks sometime in the near future, they have changed a bit, and my treatment for them has changed a bit.  I should share some of that.  However, I’m having these spins when I turn over in bed, it scares the crap out of me.  I’m asleep, I wake up a little…kinda…go to turn over and BAM..vertigo!  It doesn’t last long, but it is terrifying.  Sometimes it does last…so I never really know, but most of the time, it’s just a few seconds.  There’s other stuff too.  I’ll tell more later.  It’s kinda interesting if you’re into that kinda thing….you know, sadistic.
  3. Menopause.  Yeah, there are things about this that no one told me….why?  Why didn’t my doctor tell me more about it?  Do people just assume your mother is going to tell you everything?  What if you don’t have one?  Well this is a matter for a whole other post in itself.  Yep…I think it’s time we dish a little bit about the big M.  And I actually don’t have a lot of symptoms…golly, I sure feel for those ladies out there who have it bad!  But one thing I am having recently, every month I feel like I’m going through my period.  The mood swings…really bad, cramps…all the goodies, just no blood.  Yes I said it!  In October it will be 2 years since I’ve had a period, and this starts now?  Pfft!

So….there ya go…..those things led to a melt down.  “I’m sick of being disabled at 52!”  and much much more!!    I even hated my husband because he could take a walk and I couldn’t.  Oh yeah, I was completely irrational, and feeling sorry for myself.  No….I have been so ANGRY I have found it hard to live in my own brain.  Who wants to live with those kind of thoughts all the time?  Snarky, oh way beyond…ew.

I’m trying hard to pull myself out of it.  And you know, I do a pretty good job of it.  But outside factors have been eating away at my normal brain.  This is when I decided to try what a friend of mine used to say she did, “Fake it ’til you make it.”  She said she would fake the feeling good and put on a positive front until she really felt that way, and it often worked.  So I decided to do that.  It kinda worked.  I had some good times during it.  But I still had that …urgh…underneath.   *umph*  Still it did help a bit.

I combined that with a lot of deep breathing.  *Ahh*

11863487_10207136285306738_4886211835444465218_nAnd trying to do more mindfulness…but it’s darn hard when your head is hovering around a 7 every day, spiking to a 9 many days.  And the vertigo has decided it’s going to start doing this new funky thing where I suddenly feel like I’m falling down an elevator shaft…just free falling!!!  What the heck???   I found myself clutching to Stuart and screaming….”I’m falling!!!  I’M FALLING!!!  PLEASE DON’T LET ME FALL!”  Yes my brain knew I wasn’t really falling….or maybe it didn’t, it sure wasn’t telling me I wasn’t…..I sure felt like I was falling into an abyss.  That is one freaky thing, I tell you.  When they say people aren’t afraid of heights, they are afraid of falling…well duh!  I’ve always been afraid of heights…well guess what, that terror comes out when I get this weird vertigo.   It has happened a few more times and I’m better with it now (kinda), I can’t imagine what I will do if it happens and Stuart isn’t with me….because it is freaky….but less freaky than the first time (um…kinda).  My brain is beginning to wrap the truth around the situation that I really am not falling, no matter what my vestibular system is telling it.  *good brain, I knew you were one smart cookie*

Now that makes it kinda scary to go out in public.  Can you imagine if I were in a store and suddenly I start screaming, “I’M FALLING!”  Oh yeah….Call the cops, this chick is doing acid!

Soooo, any who, I’m completely losing my train of thought and going all over the place aren’t I?

See this is what happens when I haven’t posted in a long time.  I think of all these things I want to tell you, and things just start tumbling out.

Maybe I should just stop for the day.  If I don’t I might end up putting this down and then I’ll not get it posted and you will miss me.  You do miss me don’t you?   Yeah I know, I’m a little cheeky today.  *wink*

Good – Bad – Ugly…. Sometimes it’s Pretty, isn’t it?

On By WendyIn Chronic Illness10 Comments

Thank you all for the outpouring of support and encouragement about my blog and writing and well just me being me.

The comments here and on Facebook, emails….well, everywhere…I was overwhelmed by the love!

I’m sorry I haven’t posted before now….I’ve had some bad and ugly days recently….there’s been come good and pretty times in there too, maybe not whole days, but I’ll take it!!

First right before I went to the appointment I’m about to talk about, I broke my pinky toe.  Yep, I mean within the hour before, I caught my toe on my nightstand and OUCH!!  I saw stars and everything.  Pretty little stars.  *snort*  It’s been a while now…it is still slightly sore, but it has all healed, finally!!  It did mess up walking on my hip a bit though….same leg.  But I didn’t fall!!  Good thing!!!

I was very excited the beginning of June I saw a new neurologist here in Charlotte.  She runs the Carolinas Headache Clinic in Matthews, NC…so it really isn’t in Charlotte, but it is so close it may as well be.  The first appointment I had with her she spent over 2 1/2 hours with me.  I don’t know if that is her normal time for a new patient or not.  I know she sets aside a longer appointment for a new patient, but I was also her last patient for the day so she took her time.  She gave me a very thorough exam and we talked at length about my medical history.  She was very interested.  I was very impressed.  I love my neurologist at Duke, who also specializes in headache pain (my doctor at Duke recommended this doctor, they know each other well).

As much as I have loved my doctor at Duke, I think this doctor will be able to really concentrate on me more.  She won’t be so over whelmed with all the influx of patients from the system at Duke.  (I hope that makes sense)  The doctor here is very interested in my Chronic Persistent Daily Headaches.  (I have a headache all the time, it ranges from about a 3-5 on a scale of 0-10 pain scale, I have had this headache since I was 11 years old, right after my first migraine)  She believes if we can break this headache then we can break the migraines and cluster headaches.  Wouldn’t that be nice?

She started me on a new medication, it was to hopefully help with the daily pain of my head and my all over pain.  Unfortunately, it hasn’t worked.  However, I don’t think we can judge it fairly.  I am on a drug called Limbrel, this helps with inflammation and I had problems getting my prescription for over a month.  (long story short…the doctor faxed in the prescription but the pharmacy said they never got it…this happened over and over, finally they got it straight…why it took so long, well I have no idea, but I finally have it!  3 months worth, thank goodness.  I had no idea how much this was helping my joints and all over pain, I was having trouble typing my joints in one of my hands were hurting so much.)

The past month has been filled with the worst migraines.  Let me give you a little run down….Out of the last 25 days I’ve had 22 migraines, 1 cluster headache, and 15 attacks of vertigo.  On July 2nd a vertigo attack started around 3pm and lasted until after 3pm on July 3rd.  (July 2nd was my birthday…I will just have to celebrate 364 Un-birthdays!!  Want to have a Mad Hatter Tea Party with me??)

Can you guess why I haven’t been posting?  Or reading my dear friend’s blogs?

I admit the depression took hold of me and jerked me around a bit.  I think I had some reasons, even if I didn’t have Bipolar I disorder, but I admit my emotions do go a bit extreme because of my illness.  The demons didn’t knock on the door, they busted it down!  For a while there I thought I was lost.  I was drowning, big time.  I was having panic attacks, heck I’m still having a few of those.  I’ve been having trouble going out of the house again for few of having attacks.  I hadn’t been doing my mindfulness practice…except during vertigo attacks, and sometimes not then, sometimes I would completely freak out.  (however, I’m relieved to say that most of my vertigo attacks have been mild, by that I mean slow rotation, they haven’t been rapid spinning….but I won’t go into detail about what they were like.  Just know they aren’t as scary. However, I will just say….they are exhausting.)

I’ve been trying hard to pull myself out of the depression.  The odd thing about this, the medication that the neurologist put me on is actually an antidepressant.  I was really hoping it would help with this too.  However, I think the fact that I was in a lot of pain, and had so many headaches and vertigo when the medication I was taking was supposed to be helping…well this was making me more depressed.  Makes sense right?  Plus I have a few other things going on in life that are stressing me out too.

Recently I’ve been diving into my mindfulness studies again, and trying to meditate.  Meditation doesn’t fix things, but it just makes me be here.  I was so caught up in the fact that I was in pain, that is where I was, I was hurting, angry, sad, scared, did I mention angry…oh you would not believe the anger that was popping up!  wow!  I hate it for Stuart the past few weeks.  At least he couldn’t hear the even more snappy things I was saying in my head.  ewww.

something I need to remember
something I need to remember

So, I’m focusing on just being here.  I’m taking a lot of deep breaths, and I’m just trying to be me.

On a different note….I’m in physical therapy now to help my hip get a bit stronger and have more range of motion.  I have a day in the gym one day a week and a day in the pool one day a week.  The pool is wonderful.  However, I’ve had to miss a few sessions because of the pesky vertigo.  The last PT session, the therapist really showed me that I am not as strong as I thought I was, she kicked my butt!!  Whew!  However, I’m afraid that the new exercises that I have been doing have aggravated the back injury.  I have been in so much pain.  The sciatic nerve has been shouting at me.  It’s not just yelling on my left side now, it’s screaming on both sides.  I’ll talk to her at my next session tomorrow.  I may have to go see the spine doc again.

Well….I can’t think of much more to say today.

I don’t know if I’ve covered good, bad, ugly…and a little pretty, or not.   But there is some of all in my life.

Good….focusing more on mindfulness again.

Bad….vertigo, migraines, back pain…being really mad there for a while.

Ugly…umm, vertigo sometimes, and you don’t want to see my face when she’s kicking my butt in PT.  hahaha

Pretty….My new headache doctor, she’s really pretty – but not as pretty as my Physical Therapist, oh my!  The feelings I get from both my new headache doc and my PT.

Chonic Pain/Ilness Photography 2015 Project Week 3

On By WendyIn Chronic Illness, Photography6 Comments

This is the final week of the Chronic Pain and Illness Photography Project I have been participating in for the past 3 weeks.  Facilitator  Stephanie Blumensaat did a marvelous job putting this project together and keeping the group running smoothly.  What a wonderful group of creative people who were willing to share so much of their art, their lives and their souls.  Simply amazing.  Stephanie has a blog, Chronic Pain Life, that you just might want to check out.  She will be putting together future projects that some of you might want to participate in, I know I will. 

I hope you enjoy these photos and insights into me….

Day 15 – Gratitude. – posting a day late

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I have much to be grateful for every day, yesterday was no exception, but it was a very rough day, things happening all around me that I could not help with or do anything about. (my dog had an emergency trip to the vet and I couldn’t move my head without vomiting to help…it was a very hard day.) Yesterday was filled with rapid vertigo. Yesterday I had a very long, rough day with vertigo. I am very grateful for the bucket I could throw up in if needed….and all the medication I had that made me not have to throw up so much. (I’m most thankful for my darling husband for taking care of our furry baby…she’s fine…and taking care of me.)
Truthfully, I’m very grateful the day is over.
Day 16 – Dreams

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 One dream I always had was to go to Disney Land, not Disney World, I wanted to go to the original.

Right before I got very sick, I was able to go.  This is the land of dreams….a place where dreams come true…..the photo is the refection of the castle.  I think this photo is very symbolic of my dreams today, they are very vivid and beautiful, a little wavy, and sometimes a bit upside down….that doesn’t mean I’ve stopped dreaming.
I still have many dreams, some are short term, some are long term, some are very attainable, some probably aren’t.  And that’s OK.  I think healthy people have the same kind of dreams….not all come true.

 

 Day 17 – Identity
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 The image I chose for this prompt is a mask I made….the outside shows how most of the world sees me….the invisible illness, my cheery exterior…is that part of my identity….yes, I think so. The inside of the mask shows how I feel about things and how I feel about me. I think this is a good representation of my identity.

This prompt was very hard for me. If I were able to really get up and out and create a new photograph for this prompt I would have done something different.

How do I Identify myself now? I’m still Wendy.

 Day 18 – Know This
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 Know This….You are not your illness/pain.
Your illness and pain are a part of you but it is not YOU.
Do not lose yourself.
Day 19 – Spirit
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Showing my spiritual side.  I hope you enjoy this photo as much as I do.
I took the selfie yesterday and manipulated it in Photoshop to show my spiritual side.
I study Buddhism,
I follow a mindfulness way of living.
This has made a huge difference in my life, and how I deal with chronic illnesses.
Namaste
Day 20 – Goals
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Take more risk…..overcome fear….first step!….walk out the front door…..

My goals….get out more.
We moved to a new place in August of last year. During the move my hip started to hurt. I haven’t been able to hardly walk since the move.  I had hip replacement surgery on the 14th.  I’m starting to walk again, that is going very well.  However, I’ve had vertigo attacks every day for over 30 days.  Fear rules my life.  I started to get in the shower today, and was then going to go to the store with my husband.  A first outing since my surgery, other than to the doctor….
right before I got in the shower I was on the computer and the world started to tilt……suddenly it started to spin, violently…for 5 hours I was spinning with violent vertigo, so very, very sick!!!
Then I slept for 2 hours and I still feel like I have no balance and my head is mush.
Deep Breath!!!
This is a HUGE GOAL!
Get out that door!
Expand my life!
I know I can do it!
if not…my Goal is to be perfectly happy, in the life I have, just the way it is.

Day 21 – Invisible

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Invisible Illness and me

“You look so good!”
Just beneath the surface
no one can see
the cracks….
the cracks…..

Day 22 – Music  (bonus prompt)

As most of you may know, I’m deaf. My chronic illness took my hearing. I haven’t been deaf long, and music is still in my head and I still sing and love music…I just can’t listen to it. (I have Cochlear Implants and can hear some music but not like I used to.  Hopefully, I will be able to hear it better in the future, but for now, not so much.)

When I relax I often hum, when I’m up I often sing, my husband and I often make up silly songs and laugh…..the silly songs are wonderful, they make me feel normal, and keep up my spirits. Music can be very therapeutic.

Today I wanted to share something different with you.
A few years ago, right before I lost all of my hearing I sat down with a friend of mine who is a sound engineer and he did a pretty good recording of what my tinnitus sounds like. These are the sounds I hear all the time. I don’t hear the worst of it all the time, but I do hear some of these all the time.

One day recently I suddenly didn’t hear anything and it scared me. I felt completely alone and was terrified.  It didn’t last long. These sounds can drive me crazy at times, but they can also be very soothing.

This is my music….my Sounds of Silence.

Day 23 – Art  (bonus prompt)

art chronic illness

I use my art to help me with my chronic illness in many ways.
Here you will see where I have three expressions of me.
Silly loving Me.
Chronic Pain Me.
Natural, Strong Me.

I try to create something every day….drawing, writing, photography……anything creative…..
My art helps me heal, even if I’m just doodling, creating heals my soul.

(sometimes when I can’t voice my pain, I can show it in my art)

The Chronic Pain and Illness Photography Project is over now.  I’ll be returning to my regular scheduled programming.  🙂

I’m sure my regular readers are curious about my hip replacement surgery recovery.  I’ll give you a thorough update in the next post….here’s a little spoiler….my hip is doing GREAT!

See you soon.  I’m off to Duke for visits to my doctors tomorrow, and the next day, and the next day…..  Yay!!

Chonic Pain/Ilness Photography 2015 Project Week 2

On By WendyIn Chronic Illness, Chronic Pain, Photography4 Comments

The second week of the Chronic Pain/Illness Photography Project I have been participating in on Facebook has been amazing.  The people who are contributions and contributors are amazing.  This has become so much more than just sharing photographs, we are sharing our deepest fears, pains, joys, loves….our lives.  The support that has been given and felt is nothing like I expected from a Photography Project.  The project has been consuming.  When I’m not working on the theme for the day, I’m looking at contributions, reading stories, commenting, sharing….when I’m not actively working with the project I’m often thinking about the people, or a certain entry that has touched me.  This project will touch me forever.  I hope you enjoy my interpretation of this weeks prompts…..

Day 8 – Affirmations

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I try to live a mindful life. These quotes help me remember to live in the now, and remember that my body, just as it is right now, is just fine (I’m only human).

I also try to remember to be gentle with myself, I’m the only me I have. (I have a habit of beating myself up a bit, expecting more out of myself….my doctors, and my husband have often told me to give myself a break..I’m learning to.)

The photo on the left I took of my toes in the ocean, with a quote by James Baraz –
Mindfulness is simply
being aware of what is happening right now without wishing it were different.
Enjoying the pleasant without holding on when it changes. (which it will)
Being with the unpleasant without fearing it will always be this way. (which it won’t) – James Baraz

On the right, a photo my husband took, with a quote by Pema Chodron –
Realize that this very body,
with its aches and its pleasures….
is exactly what we need to be fully human,
fully awake, fully alive.

Day 9 – Support.
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The greatest Support I have is my husband. This photo is from our wedding. When we got married, 10 1/2 years ago, I was sick, but not nearly as sick as I have been in the last 5+ years.
He had no idea what he was getting into, but he has always been my greatest support. He is always by my side, always holding me, understanding when I am a complete bitch to him, helping me with the most humiliating task, watching me go through numerous painful medical tests and treatments….he is the only one bringing home any finances, and he also cooks, cleans, takes care of our pets and me.
I feel he has sacrificed so much to give me the best life possible.

He says I am his support, that I am what gets him through the day, I am his inspiration….He tells me he was a selfish person before me, that he strives to be a better person because of me, he tells me that nothing he does is a sacrifice because he’d rather be with me, than do anything without me.  How can this be?  How can he give me so much, and still think that I am an equal in this relationship?

Our relationship gets better and better. (we did go to therapy to help deal with me losing my independence and understanding how to deal with a chronic illness. The therapist I went to, and soon asked my husband to join the sessions, works a lot with people with chronic illnesses.)

Our relationship is really my biggest support. Together, we can do this.

Day 10 – Comfort
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Comfort comes in all shapes and sizes for me.
When I first thought what I reach for first when I need comforting, I thought of my Monkey. I got him right before I first started getting really sick. He has seen me through a lot. He not only cuddles with me, but he makes a great neck pillow, a lumbar support…ect. I take him just about every where. Yep, this grown woman takes her stuffed animal to the hospital with her!My painting of Buddha meditating represents my mindfulness practice, and meditation. Mindfulness practice has been a great comfort to me. I think it has helped me more than most medical treatments. I have also begun to study the Buddha’s teachings in the past few years and this has also been a great comfort to me.

The photo I took of the wild flower with the little bee on it is comforting to me because it reminds me to appreciate the little beautiful things I see, and not get so caught up in all the pain and suffering. It reminds me that life is constantly changing, just as the seasons change, my life is changing….I take comfort in that.

Day 11 – Who I Was:
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This was the hardest prompt for me to date. It brought up so many emotions. When I first read “Who I Was”, I thought, I’m still the ME I’ve always been, yes, I’m sick, but I’m ME….then I started looking at pictures…thank goodness I don’t have a lot of photos of the “before” pictures on my computer.  This brought up a lot of emotions.  Emotions I thought I’d dealt with a long time ago.  But grief isn’t linear, and right now, I’m grieving a bit for some of the old Wendy…..this just touches on some of the old me…A little of Who I Was….
top left: a selfie with (my then boy friend) now hubby – a little sexy thing. I miss feeling sexy, or being able to have sex without pain, or being able to have a normal sex life….no, to be honest, I really miss having a wild sex life! I finally met the love of my life, and not long afterward my sex life was ruined. I’m not that me any more.top right: I’m in the front on the left. This is a birthday party for one of our old friends. This was a normal occurrence before I was sick. I was social, I entertained. I went to museums and art shows and parties…… I had a lot of friends. I’m not that person any more.

bottom left: Me on the left with a friend at the NC State Fair. I was spontaneous, I could run, and jump, and play….I loved playing with kids. I was FUN. (sometimes I still am, but it’s hard..it sure isn’t spontaneous, and I pay for it afterward) I used to do these things without fear. I can’t do that any more. The now Wendy is full of fear.

bottom right: Me cooking…well baking…well, enjoying the products from baking…haha. I love to cook. I love everything about it. I have fructose malabsorption, I’m allergic to wheat, I’m hypoglycemic…..ect… These things, well yeah, I’m sick with it, but it didn’t matter much except when eating out, because I loved to cook!  It was just a challenge. I loved to play with ingredients and learn to make new flavors with the foods I can eat. I had a gluten free food blog with close to 2,000 followers. Suddenly my balance issues got too bad. I was having too many accidents in the kitchen. I can’t cook now. I really, really miss this….this is one thing I hope I can get back. I can’t drive either, but I’d rather be able to cook than to drive. And I live in an area where I can’t really get anywhere without being able to drive.

Day 12 – Motivation

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LIFE – My little flower represents life….even when it isn’t supposed to be there.

Much of what I’ve already posted are motivators to me, however, I think the thing that motivates me the most is life. I want to live my life. It may not be the life I expected, but it’s still my life. I’ve learned to change those expectations…and simply live day to day.

I read something recently that stuck with me.
Sometimes the best way to motivate yourself is to stop trying to motivate yourself. (That really hit the nail on the head with me. Sometimes I have a hard time getting motivated, especially when I’m depressed. Sometimes I just have to act.)
You do not need motivation to act.
You do have to make a conscious decision to act.
The action could be big or small.
It may not turn out the way you want.
How you feel about that is irrelevant.
(OK…that part is really hard. for me this part means, being ok with how things are, no matter what happens.)
Actions move you forward.
Waiting for motivation keeps you stuck.
What you do with this information, you do in this moment.
The decision is always up to you.
(this came from a website called mindfulness over matter)

I also have to remember to always be gentle with myself and forgive myself if things don’t turn out as I planned. If I can’t get motivated or even act on something sometimes, it’s ok, forgive myself and move on. Give myself a break.

Day 13 – Challenges

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Whew – To sit down and think of all the challenges I face each day, I couldn’t sum it all up here. It was difficult to pick what to share with our group.

In the center of my collage you will find a lot of spoons on the floor. If you are acquainted with the spoon theory you will probably understand this immediately. If not, I recommend you read it, you can find it here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ I haven’t been the biggest fan of the spoon theory myself, because there are many days I have no “spoons” and I still do things, sometimes you just have to push through it or you don’t make it to that doctor’s appointment you made 3 months ago (yes, I’ve still had to cancel those way too many times). But for me this represents all the challenges I face on a day to day basis that take every bit of my energy, or that I have to get up all my courage to do (like take a bath or shower) that normal people have no problem with.

From there we will go from top left to right around to the bottom left.

Selfie of my incision after one of my ear surgeries. This represents the challenge that I’ve had many surgeries on my ears and they are still ruling my life. Between the vertigo and the lack of hearing, causing me to shy away from social interaction and have fear almost every moment of the day that I will be attacked by my own head and lose control of my body.

The next photo represents one time I had vertigo when in public and was stuck in a parking lot of over 4 hours, I was 1 mile from my home. I finally got my husband to get me home, I ended up having a violent attack for over 9 hours. I thew up most of this time and lost control of all bodily function. It is a huge challenge to get over my fear of having vertigo in public and just go out, and it is a huge challenge swallow my humility and allow my husband to take care of me and clean me up when I have soiled myself.

The last on the top row, another selfie, represents my challenge of living with Bipolar I disorder. I have been mostly stable for about 20 years, but it is still a challenge. I have to be very dilligent about taking my medication and taking care of myself. I have to really pay attention to my body and my mind. If I notice any symptoms returning I need to get in touch with my doctor immediately. There is always a chance the medication my stop working. Having Bipolar I is classic Manic Depression, and it is very challenging.

The middle row left is a do not disturb sign from a trip my husband and I took before we were married. This represents the challenges I have having sexual relations with my husband. If anyone wants to talk about this, I will be more than happy to. I know this is something that is very hard to talk about, but it is very important to break down that barrier. You are not alone.

On the middle left top is a self portrait of me painting. This is a big challenge now. I can paint, but I get confused. There are many days I simply can’t paint due to pain, but I also have a hard time with subject manner and style. I feel more empty inside about my art. I would like to put my illness on canvas to get it out, but I just can’t. I’ve done a couple of commission pieces, but I have to have no deadline. It’s simply a really big challenge. My doodles make me happy, at least I’m doing something.

Just below, you will see my arm with many hospital bracelets on me. This is actually from my last visit to the hospital. This represents the challenge of having to go to the hospital so much. To so many doctors. To owe so may hospital and doctor bills that only my husband can pay. To me it even represents fighting for disability.

On the lower left you will find my Headache Pain Scale. This represents the challenge I have always found in telling doctors how I feel. I don’t feel that doctors really understand patients a lot of the time. I’m lucky I have many good doctors. I’m also lucky that I have the kind of insurance that if I don’t have a good doctor I can fire them. (and I have) But finding a doctor who really understands is a challenge. (also not being able to hear makes it hard for a doctor to make himself understood to me….we definitely can have communication troubles.

The last photo on the bottom left represents the unknown. They have come to the point that they have told me that they don’t know what is wrong. We know I have a vestibular illness, probably more than one, but they don’t know what. I have been told for many years I have Meniere’s disease. I have been through more tests and treatments than you can believe, now I’ve been told, they can’t do any more. I’m stuck with the unknown. There are other conditions they don’t know about, the Avascular Necrosis in my hip, they don’t know if I will get it in other joints….good chance. Some doctors have said that other diseases I have may all go together, other doctors say no? I think my body may hate me. The photo is an x-ray of my hip on the left, and a photo of my ear on the right that I have manipulated beyond recognition.

These are some of the challenges I face. Sorry I couldn’t keep it shorter

Day 14 – My Body

my body

It’s cute….but very fragile.
(note, I could never get in this position, not now, but I used to love yoga, I could have…)

*this is a straw wrapper version of me, created one day when I was playing with the wrapper from my hubby’s drink.

As you can see the Chronic Pain/Illness Photography Project has become much more than sharing photographs.  Everyone in the project is sharing a part of their soul.  I feel so honored to be a part of this project.  One week to go…..