Thinkfulness Mondays (filling in for Wendy): thankfulness; appreciation; gratitude

Wendy chose the theme: thankfulness; appreciation and gratitude to highlight what a Mindfulness Turkey Day should be. Of thankfulness for what we have tangibly, but most importantly, for those intangibles: the fairy dust; the miracles; the possibilities; grounded in our moments; spreading hands and hearts. Appreciating the touch of a hand; a donation to a food bank; thankful for the moment with friends; aware of the needs of others; and appreciation on the need for us to help.

This Saturday is giving Saturday at my local library. I am thankful I am able to provide some tangible help: toys and books for children and clothes for their mothers.

Wendy has a nasty migraine making working on the computer right now feel deadly, so I stepped in to help – what are friends for? Please send her messages of support as she deals with yet another round of migraines, cluster headaches, vertigo, and back pain. She got so far, but needed to rest her eyes. I so understand, so here I am offering up quotes about thankfulness, appreciation and gratitude. But I would pose we should think of “thinkfulfness” – the ways in which our minds wrap their synapses around the mindfulness approach to living – including celebrations of ourselves, friends, families, and perhaps through donations, or volunteer work

So, I searched beyond my usual sorts of quotes (with Wendy’s assistance), and have more than Wendy’s usual three. These resonated with me in terms of thankfulness, appreciation and gratitude. A cornucopia, and over abundance of meditations on gratitude, thankfulness, and appreciation.  I was unable to post Wendy’s lovely image; instead an unedited collage of my back yard.

I would maintain that thanks are the highest form of thought; and that gratitude is happiness doubled by wonder.“ G.K. Chesterton

“Every day, spread the magical stardust of thankfulness into your life.” Terri Guillemets

“Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.” Anon

“Piglet noticed that even though he had a Very Small Heart, it could hold a rather large amount of Gratitude.” A. A. Milne

“Don’t cry because it’s over, be happy because it happened” Dr. Seuss

“As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them.” J F Kennedy

“Let us be grateful to the people who make us happy; they are the charming gardeners who make our souls blossom”. Marcel Proust

“In the end, maybe it’s wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices.” Elizabeth Gilbert

“We take for granted the very things that most deserve our gratitude.” Cynthia Ozick

images are copyrighted to Lorraine; unable to upload Wendy’s marvelous images.

And to end on a musical note: a song discovered by a search that seems to fall within the theme of thankfulness.

Josh Grobin: Thankful

Somedays, we forget to look around us,
Somedays, we can’t see the joy that surrounds us,
So caught up inside ourselves,
We take when we should give,
So for tonight we pray for,
What we know can be,
And on this day we hope for,
What we still can’t see,
It’s up to us, to be the change,
And even though we all can still do more,
There’s so much to be thankful for,
Look beyond ourselves,
There’s so much sorrow,
It’s way to late to say, I’ll cry tomorrow
Each of us must find our truth,
It’s so long overdue,
So for tonight we pray for,
What we know can be,
And everyday, we hope for,
What we still can’t see,
It’s up to us, to be the change,
And even though we all can still do more,
There’s so much to be thankful for,
Even with our differences,
There is a place we’re all connected,
Each of us can find each others light,
So for tonight, we pray for
What we know can be,
And on this day, we hope for,
What we still can’t see,
It’s up to us, to be the change,
And even though this world needs so much more
There’s so much to be thankful for.

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I Give Myself Permission to …

I’ve been participating in a Chronic Pain and Illness photo project.  I participated in the same group last year, you can see those photos on these posts: Chronic Pain/Illness Photo Project, Chronic Pain/Illness Photo Project 2015 Week 2 , and Chronic Pain/Illness Photo Project 2015 Week 3.  This year I’m sharing a few photos here and there, not the whole project.

I’d love to hear your take on this topic.  What do you give yourself permission to???

Today – I give myself permission to Cry.

My x-rays showed more degeneration in my neck. C5-C6
The pain is intense. It just hit me that this is only going to get worse. The pain will always be there.

My father is in the hospital. I can’t go. I can’t ever go.

Today I give myself permission to cry.

(photo taken today, I manipulated it with photoshop, but the tear is real.)

crying

Grief and Acceptance

When people think of grief they often think of death, they don’t think about grieving over other significant losses.  Those of us who have had major losses due to chronic illness know all too well that we grieve those losses.

The five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying” are: Denial, Bargaining, Depression, Anger, and Acceptance.  Kübler-Ross describes these stages as being progressive, you needed to resolve one stage before moving on to the next.  This is no longer thought to be true.  It is accepted that most people who have loss go through states of grief but it is not linear nor is it finite.

The 

Eckhart Tolle Quote

Often people think of acceptance as being okay with what happened.  That is not the case. Most people never feel completely okay about a great loss.  Acceptance is about accepting a new reality. This is the way life is now, it is the new norm, our lives have been forever changed and we must adjust accordingly.  At first finding acceptance could be just having more good days than bad.  We can never replace what has been lost.  However, we must listen to our needs; we change, we evolve, we accept.

Once you have reached a good level of acceptance this doesn’t mean you can’t feel sad again.  We are constantly reminded of our losses, when these reminders arise we can find ourselves feeling grief again.  It’s at these times that our acceptance is most helpful.  We may feel our losses, but we know there is life after.

I accepted my losses long ago, however, feelings of grief do come flooding back from time to time, especially if I lose something else.  When one is chronically ill, we often find we lose more things as time goes on, even when those losses have nothing to do with our illness it can bring back all the emotions from our previous losses.

For example, in the last 2 years I’ve had a number of new losses.  We had to move because my husband found a job in a new city.  This move caused me to lose my home, my neighbors, more friends, and my doctors.  Then a new diagnosis that causes more pain and loss of range of motion was another huge loss.  The losses just seemed to keep adding up.  I have more grief that I have to work through.  Simply because we dealt with our previous losses does not mean our new losses hurt less, or that we don’t need to grieve.  However, it does mean that we now know that acceptance will help us deal with our losses, and give us the ability to move on.

I should point out here that prolonged intense grief can produce a physical or Prolonged Grief Disorder.  “Prolonged grief disorder require bereaved individuals to have severe levels of yearning, and five of the following nine symptoms for ≥6 months post-loss: disbelief and bitterness over the loss, confusion about one’s identity, an inability to trust others, numbness … and feeling that life is empty and meaningless since the loss, difficulty accepting the loss and moving on with life, and feeling stunned by the loss.” (Holly G. Prigerson, Paul K. Maciejewski – 
 Based on numerous findings of maladaptive effects of prolonged grief, diagnostic criteria for Prolonged Grief Disorder have been proposed for inclusion in the DSM-5 and ICD-11. 
There is a great article at Psych Central on the 5 Stages of Loss and Grief, here you can also find a quiz to help you decide if you are suffering from complicated grief.
If you feel you are suffering from complicated grief I urge you to seek professional help.  It can get better.

Recurring Grief with Chronic Illness

grief

Recently someone told me, not in these exact words, that they understood I have been though a lot and lost a lot, but I needed to stop pitying myself, I needed to move on.  I don’t feel like I pity myself,  but this hit me hard.

I’ve never said “Why me?”, I’ve always thought, “Why not me?”.   However, I have had a lot of losses, and sometimes it gets to me.  There are things I miss. Does that mean I sit around feeling sorry for myself because I can no longer do them….most of the time No….ummm….sometimes..maybe. Most of the time I’ve come to terms with it, and I’m happy with my life as it is….other times, the grief comes back in a wave that I just can’t control.  I’ve heard the same thing from other people who have chronic illnesses.

I have now read many studies, articles, and books that talk about this, and I found this is normal. (You can refer to the list at the end of the post for some of the material I read, if you want to check it out.)

Often we are handling our situation well, we have accepted the things we’ve lost….then suddenly the grief will hit us again.  Something may happen to spark it.  It could be you were feeling good and suddenly you are having a flare – now you feel horrible again, you just got a new diagnosis to add to your list, a medication you were on stopped working, there is an event that you can’t attend that means so very much to you, you tried to clean the tub and couldn’t….something happens….  Grief comes in waves, it doesn’t end just because you have been dealing with a situation for a long time.  Our grief is discounted.  People do not understand how we must grieve about the things we have lost, and how these losses continue to build up. Or how much we still miss this huge thing we lost. We cant hold this inside, it is not healthy.

When a person loses a loved one, they are expected to grieve. We often think there is something wrong with them if they don’t. We aren’t surprised when years later they still miss the person and sometimes need to cry. Everyone thinks this is normal. The chronically ill often lose huge portions of their life. The life they were living is suddenly taken away, changed forever. We aren’t just sick, but we often lose many things we loved to do, often our jobs, many friends, and a lot of our independence. We’ve lost all of this, but we are expected to bounce back, find a new life, forget what we had. I’m not saying we should sit around and feel sorry for ourselves all the time, but we need to grieve. We may have started a new life, we may be happy, but that doesn’t mean that we don’t have moments when we really miss what we lost.

I recently started having seizures.  This means, at least for a while, I am losing even more of my independence.  My husband is now working from home all but 2 hours a week, and for those 2 hours we are going to have someone come and stay with me.  Now I can’t just make sure someone is in the house when I take a bath in case I start to have vertigo, I need to have someone in the room!  This brought on a huge wave of grief. It brought back everything I lost. So much sadness, and it brought a lot of anger with it too. Of course, that is a stage of grief. I’m beginning to get a grasp on things, but I will need some time yet to grieve. I realized I haven’t really let myself grieve about a lot of my loses, I was so busy trying to be strong.

There is really only a couple of things I long for all the time and those are things that cause me to feel guilt.  Guilt also has a lot to do about letting go of loss.  There are some losses we hang on to because we feel so guilty we can’t do these things any more, this isn’t healthy.  We shouldn’t feel guilty, we are sick.  We can’t help that we can’t do things…but we still feel guilty.  Many of us feel guilty we can’t work. We feel guilty we can’t do things with our families.  Personally, I feel a huge amount of guilt because I can’t cook.  Hubby does so much, he is spread so thin, and he hates to cook.  I have a restricted diet, that makes things even more difficult, I feel so guilty that he has to cook, especially when I loved to do it….but I can’t.  It’s too dangerous.  It breaks my heart every time he has to cook dinner.  I know how much he dreads doing it, and how hard it is for him.  (but he really has become a pretty good cook)

Sometimes we are completely irrational for a while when we are grieving.  For example, I can get so angry with people, I feel so many people abandoned me.  I get so worked up about it and just want to scream.  If someone who normally gets in touch with me hasn’t, I will think they too have abandoned me, and will build up these huge things in my head….then they will get in touch and I’ll say, they did it just because they felt obligated.  Then, it will pass and I will realize my friend who got in touch, loves me and simply had things going on, besides I could have reached out to her. Thanks to mindfulness practice, and Toni Bernhard’s book How To Live Well, with Chronic Pain and Illness, I know that it hurt when people disappeared from my life because they didn’t react to my illness the way I expected them to, not because of what they did.  It’s my expectations that cause the pain.  I don’t know the circumstances, and frankly at this point, it doesn’t matter.  But sometimes, something will happen that will bring back that pain. And I will forget that it’s from my expectations and I just get mad as hell.  ….. And my dear husband hears all about it….then I calm down and let it go and I’m okay again.

The biggest point I’m trying to make it is, it’s okay to have a pity party, as long as it doesn’t last all the time.  It’s okay to grieve what you have lost, over and over again, it’s natural.  It’s okay to have a few things you will always long for….that doesn’t mean you are obsessed with it, it means it was very important to you and you just miss it.

Remember, if you lost a loved one, you would always miss them.  People do not think this is unusual, they do not think this is something we should completely get over.   We lost huge parts of our lives, why are we expected to not miss it?

I highly recommend Toni Bernhard ‘s latest book, How To Live Well, with Chronic Pain and Illness. In it she talks a little about this…check the chapter 35. It helped give me a way to deal with chronic illness. It gave me a lot to think about. Different ways to think about things, how to talk to people about my illness…. and well…I think you will get a lot out of it. Her first book How To Be Sick, I read over and over…. and I think this book is even better.

Greiving Chronic Illness and Injury – Infinite Losses
Experiences of loss and chronic sorrow in persons with severe chronic illness

Middle Range Theory of Chronic Sorrow

Where ya been?

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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*

Chonic Pain/Ilness Photography 2015 Project Week 2

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

affirmations

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.
stuart and wendy on steps
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
comfort collage
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:
wendy before
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

life

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

callenges collage
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…..