Why do I write? PFAM carnival

Sharon at Bed, Body, and Beyond is hosting the PFAM (Patients for a Moment) blog carnival this go round, and she asked, why do we write?  The carnival will be posted on December 7th, be sure to go by there and find out why other’s write, and what they write about.

Drawing Hands by M.C. Escher

I’m an artist, not a professional writer, I never really considered writing anything that was meant for others to read.  I kept a journal, off and on, for years.  Now and then, I still find little books with partially filled pages buried deep in a box, little segments of my life, meant for no one’s eyes but mine.

The first thing I wrote that was intended for other’s to hear (or read) was a poem I wrote the day my mother died.  This became the largest part of her eulogy.  A poem I still cherish to this day, it’s not professional, it’s not prize worthy, but it comes from my heart, and it helped me get through the first few hours of saying goodbye to my mom.

Memories of Mom and Me

I look around me and all I see,
brings back memories of mom and me.
The clouds in the sky; for hours we’d look,
picking out colors and shapes and books.
Oh, look there’s a snap bug – remember him?
a play thing for me and mom again
.A sea shell reminds me of a walk on the beach;
my diploma, a goal, she believed I could reach.
Let’s go to a movie – her favorite E. T.
then go to the park and swing with me.
An ice cream cone, a frog, a snake,
a Thanksgiving dinner we attempted to make.
All the things around me I see,
bring back memories of mom and me.
The people who loved her, I see in their eyes,
the love that she gave them was no surprise.
She had a heart as big as the world
and the soul of a little girl.
People who knew her will never forget,
because she affected everyone she met.
Reminders of my mom are easy to see,
for there are parts of her inside of me.

After that day, I filled many more journals with not just accounts of the day, but prose.  Still, only for my eyes, or to be shared by a very select few.

For years I’ve had health problems..too many to mention.  I wrote about this – privately.  Then a few years ago I found out I couldn’t eat gluten.  It appeared that this little ingredient in so many foods was one of the things making me sick.  I started learning a whole new way to eat, to cook, to shop, to talk to wait staff…ect.  I started a little blog to help me keep up with recipes, places I’d eaten, products I tried, all of my experiences being gluten-free.  At first it was private, I only wrote for my information.  Then I noticed other gluten-free blogs and thought others could benefit from the things I was learning…and that started me on a road to writing publicly.

My gluten-free blog was pretty popular, but I started having other health issues, and even found out I had another food intolerance.  Not only did I feel that the gluten-free blog no longer fulfilled what I needed, I didn’t think I could put as much time and effort into it.  So that blog had to change.

I started having more issues with Meniere’s Disease.  However, it wasn’t ruling my life…yet.  So I decided I wanted to start a blog about getting healthier.  Yes, I was going to take a year to focus on my health and fix things.  My body had other ideas, so 365 Days to a Healthier Me, changed to Picnic with Ants.

With this blog, I have thrived.  I started writing this blog to tell my story, living with chronic illnesses.  To get it all out before I exploded.  Then I found others who understood what I was going through.  I found support, and friendship, things I never expected to find, simply by writing about my life with all its struggles, dreams, hopes, milestones….

I found myself opening up and telling the nitty-gritty honest description of my emotions, and my diseases.  What my Meniere’s attacks are really like, how it feels to find that your husband is now your caregiver, how losing your hearing changes your life, how having chronic pelvic and hip pain affects your sex life, what it means to be bi-polar and (mostly) stable….I write about my life, and how I strive to live it to the fullest, with chronic illnesses.

I tell everything, in detail, not just to get it out, and find support or give support, I use it to explain to those who have no idea what we go through.  I have become an advocate for myself and for others with chronic issues.  I’m even considering writing a book detailing different people’s experiences living with an invisible illness.

There are many things I can no longer do because of my illnesses, one of the things I can do is write. Therefore, to put it very simply,
I write because I can!

How to deal with one more thing? PFAM blog carnival

Adding One More thing...

This PFAM carnival is hosted by FibroDAZE, and her prompt is  –” when you have made some sort of peace and are coping with the chronic illnesses you do have and “life” throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?”

Well, this is a doozy of a topic isn’t it?

How many of us have been diagnosed with something chronic, only to have another chronic illness added on to it, then another..then another….??? (I have a whole list, just look at the Page titled My Ants that Bite.)

This has happened so many times to me now I’m usually relieved to be given a name to something I knew was there.  When I got the Meniere’s diagnosis, it was scary, but it was almost liberating.  I felt validated.  No longer was I dealing with just a bunch of symptoms, it had a name.  (I have a few friends who have an illness with no diagnosis.  This is much harder to deal with, I think, than those of us who have a diagnosis (or many diagnoses).

I had a new diagnosis added on to my list in March, I also went through a 5 month spell of having a reprieve from one of my most debilitating illnesses only to have a relapse about 5 months ago.  How have I handled this?

Truthfully, I cried, I bitched, I was devastated, I collapsed in my husbands arms, then I took a deep breath, pulled myself together and reached out.

I dove into my blog and called on my friends here who have been with me through the ups and downs, I gathered them around me like a nice warm quilt and I let it all out.  They listened, and supported me.  They offered advice when asked, comfort when needed, and a swift kick in the butt when I was wallowing too much.  : )   I’ve been very lucky here to find such a supportive group of people who really “get it”.

I am a strong believer is knowing everything I can about what is going on with my body, so I research, and I find more people who have experience with this and compare notes.  I take what I think will help me, and leave the rest.  (this is tricky, but there are so many people out there trying to take advantage of desperate people with chronic illnesses, we have to be careful.)

I also see a therapist who specializes in helping people deal with chronic or debilitating illnesses.  My husband and I see her together, this has helped us so much, I just can’t begin to say how valuable this has been to us.

My advice?

  • Digest: First take time to absorb the information, don’t let it overwhelm you.
  • Think: How is this going to change my life? Can knowing about this make it better?  (my new diagnosis in March was Fructose Malabsorption, by changing my diet, I am able to make things better.)
  • Seek:  Look for others who have similar issues and compare notes, learn from others who have been dealing with this for a longer time.  Look for as much information on the subject that you can.  The more you know the more prepared you will be to handle what comes your way.
  • Build: A strong support system to help you with this new challenge.
  • Re-evaluate: Is your life going to change?  What will this mean?  Do I need to make a different plan for dealing with things?  Will my diet change? will my ability to do things change? ….
  • Make a plan:  This may take a while, depending on what your new diagnosis is, or in my case how severe my relapse is, a plan is needed so we won’t feel out of control.  Again, reach out and ask other’s how they handle certain situations.
  • Support:  I know I mentioned this before, but I believe this is one of the most crucial aspects of dealing with a chronic illness.  We need support.  Do not hesitate to get professional support when needed.
  • If needed, get a second opinion.

After a long battle with myself, fighting every diagnosis, refusing to believe I couldn’t just be fixed, I realized that my life wasn’t going to turn out like I planned.  Things would have to change, and I needed to let go of some of those old expectations.  No, my life isn’t what I expected, so I’m changing my expectations.   This is a fairly new idea for me, but one I’m clinging to and repeat often.  Not what I expected?  Expect something else!

Now if things come up it’s much easier for me to change accordingly.  This was not an easy thing to do, and I still get stuck, and have set backs and pity parties…but it’s easier than it used to be.

Every day I try to say something I’m grateful for in my life.  Some days I say the same thing as I did the day before and the day before…perhaps I can only think of that one thing, or that one thing is very special at that moment, but I can always think of at least one thing.

Lastly, always remember, you are not defined by your illnesses!

Am I a Patient?

Sharon at After Gadget, is hosting the PFAM carnival this time.  She posed the question:

What makes someone a patient? When, and in what contexts, do you think of yourself as a patient, and when do you not?

I thought, and thought, and thought….and I came up with…First –

What makes someone a patient?  So I looked it up. (I looked it up in a few sources and came up with generally the same answer, but I liked Wikipedia’s answer the  best.   The original meaning of the word patient is “one who suffers”.  The meaning today” is any recipient of healthcare services.”

With this in mind: Yes, I am a Patient.  According to both definitions.

Second part:  When, and in what contexts, do you think of yourself as a patient, and when do you not?

For that I decided….well, it depends.  I know this is a very insightful answer, so I will elaborate.  Bear with me, I ramble when thinking about things like this…heck, if you read this blog, you know I ramble often.  : )

A lot of the time I do consider myself a patient.  My treatments aren’t over, I still have plenty of doctor appointments, I still take a ton of medication, I’m still dependent on someone else, so yes I’m a patient.  I had a lot of trouble with my husband being my caregiver for a while.  I felt like I was no longer his wife, I was his patient.  What could I do for him?  He has been everything to me.  He not only provides for us, he does the housework, the meals, bathes me, helps me with personal hygiene.  Many…many times he’s held my head and calmed me when I had vertigo for hours and just kept throwing up.  He’s put in many suppositories, and every time I feel horrible about it, and I cry.  I often feel like we’ve changed, I’m now his patient.  But I’m more than that..

Often, we will have touching moments together, we’ll curl up and snuggle, he’ll tell me how hot I am…just today he was helping me and brushed my breast, and said, “you know I only did it that way so I could touch your boob.”  He makes light of my illness, not in a bad way, he doesn’t dismiss it, but he never let’s it get in the way of being my husband first.  He’s simply thankful he can be here for me, just as I would be for him.  We enjoy the wife/husband/friend relationship as much as we can.  He NEVER lets me forget that I’m more to him than someone he has to take care of.

Yes, I am a patient.  But I’m so much more than that!

A Wife.  A Friend.  An Advocate.  A mom to my Furry Babies, Sandy and Max.

And I’m an artist!


Sometimes I want to shout loud enough for all the world to hear:


But Sharon asked more than that.  She asked how I refer to myself.  That depends on who I’m talking to.

If I’m meeting someone only Stuart knows, I refer to myself as Stuart’s wife.  If they ask what I do, Stuart usually says, “She’s an artist.”  He’s proud of me.  But if he doesn’t, I usually do say I’m an artist.  If the conversation persist for a long time, I may say that I’m not a professional artist right now due to my health.  (If you’d like to see some of my work, see my other blog: Create to Heal.)

If I’m talking to a friend, I’m just Wendy. However, recently I felt I had to explain a few things to some of my family and friends.  People just didn’t seem to get it.  I was told I “deserved better”, and I should “find new doctors”, and “that insanity is trying the same thing over and over and expecting different results”.  The treatment I’m undergoing has given me different results.  It usually works (on at least some of my symptoms), at least for a little while, once it worked for almost 5 months…I want to get back to that.

So I wrote a detailed explanation to them, letting them know that I have a CHRONIC Illness, it is not going away.   I explained exactly what Meniere’s is, and how I’m in the advanced stages of bi-lateral Meniere’s.  I know I’ve explained it before, but people seem to think it will go away.

I may not deserve this, but who does?  No one I’ve ever met.  I explained that I have some of the best doctors in the world helping me, doing much more to try to help me with this disease than most doctors would.  Well, you don’t need to hear the whole note.  The point is, I felt I had to point out that I am a patient.  I didn’t use those words, though sometimes I do.  I’m a Meniere’s patient.

Often when I meet people for the first time, I’ll try to hear them or read their lips before I announce I’m hearing impaired.  Usually, I have to say, “I’m sorry I’m hearing impaired, can you look straight at me when you talk and talk slowly so I can understand you?”  That usually works, but it’s funny to me how fast people forget, they try to do what I ask, then they will look away, and forget all about it.

It’s hard in hospitals or doctor’s offices because they aren’t supposed to talk softly to insure the patient’s privacy.  So I say very loudly, so they know I need to hear them, that I have Meniere’s and I need you to talk loudly, look at me…..  Often, hubby has to translate.

When I’m talking to or about some of my Chronic Illness friends, that how I refer to both.  I’m a chronic illness blogger, I have friends with a chronic illness….we don’t all have the same thing, but we are kindred spirits just the same.   We get it.

I’m not sure I really answered Sharon’s questions, but it made me think.

My conclusion?

In my heart, I’m a wife first, because my husband is so very dear to me.  I’m mommy to Sandy and Max…my furry babies…again because they are so dear to me. The rests are almost tied. I’m a friend, I’m a blogger, I’m an advocate for my illnesses, and for myself….and last but certainly not least I’m an artist.

I’m sure some would give me even more titles, but these will do for now.

Please make sure and stop by Sharon’s blog, more than once her post have moved me, made me cry, and made me think!

The PFAM carnival will be up on her blog After Gadget, on Wednesday October 26th.  Check it out, and think….How do you define yourself?

My Playlist for the PFAM carnival

When I read Phylor’s subject for the Patients for a Moment Blog Carnival this week, I thought…I could never do that.

Then, I thought…why not write about that….and some favorite tunes too.  (even if I have a hard time hearing them right now.)

Over the past couple of years my hearing has dropped dramatically.  What I can hear, even with my hearing aids, isn’t quite right.  The biggest thing that I run into trouble with is music.  It doesn’t sound like it’s supposed to.  It’s tinny, and it’s just off.  When I’m reading a blog, or something else on the internet and they have a video embedded,  I can’t hear it.  There is just so much, I can not hear.  And it’s kind of sad.  Yet times I hear the most beautiful sounds….a bird singing….that would be on my playlist.

Most of the music in my house is from my husband and I being silly.  We have such songs that we sing as “Stinky Dog”  (no it is not as bad as Smelly Cat from the sitcom Friends)…Oh and “Fat Dog”…really she isn’t fat, she used to be a little over weight, but there is this silly cartoon that used to be on called Cat Dog, and the song came from that.  There are various Sandy and Max tunes that are made up daily.

Now for one of my deepest darkest secrets….I am a gassy person….and I make silly songs about it when Stuart picks on me.  He never burps…oh he lets loose on the other end…but hardly ever burps…I belch!   So we have the song…Burpin’ Wendy, walkin’ down the street….Burpin’ Wendy, don’t know if we want to meet…

Well you get the idea.

It makes us laugh…sometimes I laugh uncontrollably…that is the true joy of living with my husband, he can make me laugh until I wet my pants.

Other songs that make our house a home every day are silly songs from cartoons.  I have to dance a Backyard Beach (you really should go to this link and hear this song…if nothing else, it will tell you loads about me.) by Phineas and Ferb.  And just love the song...I’m Fabulous from the same series.

I also can’t keep still to I Like Move It from the movie Madagascar.

Then there are a couple of songs from my wedding that still touch my heart.  (I’m sure they always will.  If you are a regular reader to my blog, you may have already heard some of this.)

We walked down the aisle to Story Book Story (the theme song from The Princess Bride).  Yes, we.  I wanted our wedding to focus around us, and not just the bride, especially since I was 41 when we got married.    We left the ceremony to the Linus and Lucy song, other wise know as the Peanuts theme.

And my most favorite song of all from our wedding, is the song my husband picked out for our first dance.  The version we had was sung by the Bezlebubs, and acapella group.  I couldn’t find it anywhere on the internet.  So I decided to include the lyrics.

(I did not take this photo, but could not find who to credit it to...if you are out there...thank you.)

Bridge Over Troubled Waters

When you’re weary
Feeling small
When tears are in your eyes
I will dry them all

I’m on your side
When times get rough
And friends just can’t be found
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

When you’re down and out
When you’re on the street
When evening falls so hard
I will comfort you

I’ll take your part
When darkness comes
And pain is all around
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

Sail on Silver Girl,
Sail on by
Your time has come to shine
All your dreams are on their way

See how they shine
If you need a friend
I’m sailing right behind
Like a bridge over troubled water
I will ease your mind
Like a bridge over troubled water
I will ease your mind

He told me he picked this song because I was his bridge, and he always wanted to be mine.  I can honestly say, after 7 years of marriage, I have walked that bride, over and over…and still it stands strong.

 This is a link Phylor’s Playlist Playground.  (I’ll add a link to the rest of the carnival when it comes out on the 7th.  Be sure to check back at Phylor’s blog for a list of other’s who posted a playlist.)

Remembering Past Happy Places, and my Happy Place Now.

I was visiting a few sites and saw that this month’s edition for the PFAM (Patient’s For A Moment) blog carnival hosted by FibroDAZE asks “Where’s Your Happy Place?”

This really started me thinking of how my “Happy Place” has changed over the years.

When I was a little girl I had a couple of “Happy Places”.  One was my closet.  It wasn’t a very big closet, but I loved to take everything out of the floor, and just play in there, I even remember camping out in my closet.  On the same note I had a toy that was like this big tunnel tube, I loved it.  Both of these places gave me a quiet place for me to go and think…or hide…and let my imagination run wild.

My tube was bright Green, with a design on it. But you get the idea.

My next “Happy Place” that I remember was my “tree house”…

This is a tree house palace compared to mine...but I loved it.

I “tree house” put that in quotes, because it was really just boards I nailed together as a makeshift ladder to get up in a tree, and a couple of boards wedged in the branches to sit on.  But oh how I loved it…and the happy times I spent there.  Again, a place I could go to think, hide, be by myself….and let my imagination run.

When I was a teenager, I had 2 “Happy Places”.  One was right down the road from where we lived.  There was a family who had horses.  I used to sneak on their property and visit the horses.  After a while, I started to brush them, and groom them….one day I was caught.  Luckily, the family was very nice, and offered to let me ride any time I wanted as long as I continued to come and take such loving care of their horses.  (What a deal!  I was 14, and considered this my first job.)  On the back of those horses, I felt free!  Safe, and happy!  I had a purpose…and I loved every minute of it.

Me, just a few years ago at Long Beach, CA. As you can see, still a Happy Place for me.

My other “Happy Place” when I was a teen…and I admit it is still a very Happy Place for me…is the beach.  We used to live a little over an hour from the beach. When ever I was having a hard time, my mom would say, “Let’s go to the Beach today!”  We’d take off, and spend the day at Huntington State Park  (near, Myrtle Beach, SC).  It was a bit secluded, we would take a picnic and just have the day together…and by the time we left, what ever was on my mind, what ever was troubling me…well my mom knew all about it, and always seem to make it better.  The beach was our special place, and still whenever I get a chance to go to there, I can feel my mother’s presence.  (Unfortunately, I can’t go as often as I used to.)

The Jockey - One of my paintings from college.

In college, my “Happy Place” was in the Art Studios at school.  I was at peace there.  I was in my element.  A friend once told me that she loved art, but I ate, drank, and slept with it!  It was my life…my how things have changed.  I miss that girl.  (I was excited last week when there was a Painting Category on Jeopardy, and I answered every question right!  Perhaps I still know a thing or two?)  When we bought our house, I planned for my art studio to be my Happy Place, but things just haven’t worked out that way.  Hopefully, I’ll begin to feel it again soon, but for now, it’s mainly just a room that stores all my art supplies.  It kind of makes me sad…all the potential…but still full of a lot of hope, and vision for the future.  If you are a regular reader of this blog, you will know that I’m currently trying to find my artist within again.  I’m sure she’s in there, look forward to meeting more of her soon.

This week I’ve been thinking about where I feel the happiest.  Admittedly, I’ve been going through a rough patch, and a happy place can be a bit hard to find.  So I thought…and thought…I remembered all my past happy places, but they just didn’t seem to fit now.  Then I felt it…the warmth enveloped around me…and I knew I was in My Happy Place.

Where is my Happy Place Now?

I kept coming to the same conclusion:

In my husband's arms! My Happy Place!!

and with my little Family!

Do you have a happy place?  Tell me about it!

Guilty Pleasures while having a Chronic Illness

The theme for this edition to the PFAM (Patients For A Moment) blog carnival is Guilty Pleasures.  You can see all the submissions on Sick Momma’s blog starting March 9th.

A Guilty Pleasure is defined as something one enjoys and considers pleasurable despite feeling guilt for enjoying it.

I have a lot that I feel guilty for, but not many pleasures that I feel guilty over.  But I do have a few…

Each of these I feel a little guilty about because I either feel like I should be at least trying to do something more productive, it cost money and I don’t work, or because I feel like I’m taking advantage of my husband.

image from ucd.ie

I love spending time on my computer, reading blogs and posting on my blogs.  The computer is sometimes a great escape, and it is often a way for me to communicate with other people.

image from sodahead.com

I also love that I have more time to read because of my illness.  I can get lost in a book.  They help me escape, and learn.  I will never get tired of learning new things.  I think reading helps to keep my mind active and has lessened my brain fog.  But still I often feel I should be doing something else.

image from tbcgym.com

I love for my husband to massage me.  He is such a great help to me, and I don’t get to pamper him near enough, but I love it when he pampers me.  He takes care of me all the time, but I get so much pleasure from having him rub my neck and back.  Oh and when my hip is giving me a lot of trouble, he is wonderful at trying to make it better.

I also love going to get a professional massage.  I don’t do this very often, and I always feel guilty afterward, because it cost money.  Plus, I feel like if anyone should be getting a massage, it should be my darling husband.  He works so hard, and he treats me so well, he deserves to be pampered.

image from show.com

I have a secret obsession for shoes, and purses.  I’m trying hard not to buy any new shoes or purses, but it’s so hard.  I try to find them at thrift stores, and I have found a few.  But when I’m looking for something in particular it’s hard.  Don’t get me wrong, I don’t buy a ton of shoes or purses.  I am, however, on a constant search for the perfect purse.  This is very funny coming from me because I used to never carry a purse and was proud of it.  However, now I have to carry an epi pen and an inhaler with me all the time, so I have to carry a purse.  And shoes!  I don’t buy a ton, but I have a weakness for funky tennis shoes, and shoes that look great but are still comfortable.  I don’t give in to this guilty pleasure very often, but I just can’t help myself sometimes.

image from roxyishere.wordpress.com

I also love to find great make-up and facial products that are made from natural ingredients, are gluten-free, and haven’t been tested on animals.  This is getting easier than it used to be, but it’s very hard to find a product that fits all those categories, that is still affordable, and lives up to what it promises.

image from marieclair.com

One more I really like having a manicure or pedicure, or even giving one to myself.  I love wild fingernail polish.

I keep thinking of these things that I just love to do, but feel at least a twinge of guilt when I do them.  The question is, should I continue to do them and feel guilty, should I stop, or should I stop feeling guilty about it?

I made a compromise a long time ago, and I think it’s a good thing.  I don’t over indulge in my guilty pleasures, this makes me feel much less guilty.  As much as I love shoes, purses, manicures, polish, massages, and books I don’t buy very many.  I get about 2 new pairs of shoes a year, I average 1 purse a year, 1 mani-pedi a year, and 2-3 massages.  I haven’t bought new polish in a long time, however, I have made new colors by mixing a few together.  I rarely ever buy a book, however, I love my local library!

I think the one guilty pleasure that I have that I probably need to do less, is staying on my computer.  I think I should try to limit it to less than 2 hours per day.

By incorporating these restraints I feel much less guilty about my guilty pleasures.  After all, shouldn’t we all have a few pleasures that make you feel like you are splurging?

Love Makes It So Much Easier.

I’d like to dedicate this post to everyone who loves me, or who simply shares their love with me.

I often mention how much my husband does for me.  He not only takes care of my physically when I can’t, he does housework, and he also holds down a more than full time job.  He also puts up with me when I am having a very short-tempered day because I’m not feeling well.  He does all of this because he loves me.  I can’t imagine how I would get through all of my trials without him.  (I’m really glad I don’t have to.)  Thank you husband, for being there when I’m my sickest, for listening to me when I just need to scream, for encouraging me, for being strong for me when I don’t feel very strong myself and for still flirting with me and making me feel like I’m sexy.  Your love is very important to me.  I hope you know how much I love you.

To my dear friends who still accept me as I have changed with this disease.  I know I’m not quite the same friend you originally met, but I sure am glad you stuck by me.  I love it when you share your life with me, and tell me what is going on with you and just don’t even pay attention to my illness.  Those are special days to me.  However, I am also grateful for the days you let me cry on your shoulder and tell you  how hard things are, it’s nice to be able to talk about it and know you aren’t being judged.  You have been a great friend.  Thank you for loving me.  I love you too.

To my wonderful blogging friends.  You have listened to me possibly more than anyone.  You have heard mostly my down times, and you are still here.  I love you for that.  You encourage me, and have helped me to come to terms with my illness.  You may not know me personally, but you have shared your love with me, you have reached out over many miles and given me hope, knowledge and friendship.  I thank you, and love each of you.

I would be remiss in this post if I didn’t mention the love of my pets.  Our darling dog Sandy, and loving cat Max.  They are always looking out for me.  They know when I don’t feel good and always try to make it better.  I often feel like I’m a pet pillow (at least I’m not a Pillow Pet!), but they just want to be as close to me as they can.  They are always there for me.   They warm my heart, I love them so and can’t imagine my life without them.

I’m a very lucky person to have so much love surrounding me.  It really makes living with a chronic illness easier.  At one point I thought it would be easier if I was alone, if no one cared.  Then I could just drift away and it wouldn’t matter.  I was in a deep depression and felt my life was over.  I couldn’t see how I could possibly be of any use to the world being in the condition I was in.  I’m very grateful I had some wonderful people who loved me and made me realize I had something to live for.

I love you.

This post is part of Patients For A Moment blog carnival, hosted this time by Chronic Babe.

PFAM Blog Carnival – Guilt

Drowning in Guilt

Patients for a Moment is a patient-centric blog carnival revolving around those living with chronic illness. Twice a month, bloggers are encouraged to tackle the theme with their own unique voice and situation. Those effected by chronic illness – doctors, caregivers, friends and family members are also thoroughly encouraged to participate!

This month Glass of Win is hosting and her theme is : GUILT.
You feel it, though you know you shouldn’t. In what ways, if any, does guilt come into play in regards to your illness and the way you must live your life? How do you try to overcome feelings of guilt?

One of the definitions Wikapedia gives for Guilt is: a cognitive or an emotional experience that occurs when a person realises or believes–accurately or not–that they have violated a moral standard, and bear sole responsibility for that violation. It is closely related to the concept of remorse.

The definition that Webster’s gives that I think fits most here is: feelings of culpability especially for imagined offenses or from a sense of inadequacy : self-reproach

My disability is pretty hard to deal with sometimes, but the guilt that I carry around because of it is stifling.  Most of my disability is invisible, and that makes it harder, but I don’t think it makes it less real.  What makes it most difficult for me is being such a burden.

Yes, as the definition points out, I realize this guilt is mostly for imagined offenses, but it is very real to me.

I have this weight that is just bearing down on me every day when I think of how much I can’t do that my husband must now be burdened with.  Most days he has to do all of the house work, he often has to take care of my personal needs, I can’t drive so he has to do all of the shopping, take me to my doctor’s appointments, pay all of the bills, plus he has a full-time job.  I feel like I’m a useless husk of a human being, I can’t work, I often can’t even do for myself, what am I contributing to this life?  How could I not be drowning in guilt?  It is suffocating.

I used to be the friend who was there when others needed me.  I would bring a friend dinner, help clean their house if they were ill, help out when they were pregnant (or right after the baby was born)….now, I can’t do any of that.  I feel guilty that I often can’t even go to a friend’s birthday celebration.  When my husband is sick and I can’t help him, like he has helped me so many times, the guilt is nearly over powering.  (thankfully, he doesn’t get sick very often, and when he usually likes to just sleep.)

It’s funny, but one of the biggest things I feel guilty about is when I can’t cook dinner.  I know my husband doesn’t like to cook.  And I have celiac disease so it’s hard to eat out, plus we are trying to save money and not eat out as much.  We also hate to get things to go, all that wasted garbage that they send your to go things home in, it’s just such a waste.  More guilt.

I will often have a few days where I’ll feel better and I can get a few things done, and I’ll buy some groceries and start meals.  Then I’ll get sicker, and some of the food will go bad, and I feel guilty about that too.

How do I handle the guilt?

I go to therapy!  Actually, my husband and I go to therapy together!

My therapist keeps telling me that guilt is a useless emotion unless you are doing something that is destructive to yourself or others that needs to be stopped (like abusing drugs or alcohol, breaking the law…).  Then guilt can be a good thing and help you to stop, other than that, it’s useless.  I keep trying to remind myself of that.  I should not feel guilty for things I can not control.  I need to give myself a break, and I need to learn to ask for help.

My husband tells me how grateful he feels that he can be here to help me.  That makes me feel so wonderful that I have a husband that is so selfless and loves me so much.  But then I think, how many years can he put up with this?  But you know, that is not for me to decide.  He’s here, he loves me, he wants to help me.  If he needs help with this, he needs to ask, I should not feel guilty because he doesn’t ask for help.

My friends seem to understand.  Or at least they try, and the ones who don’t, well, I’m not too sure they should be my friends.  I would be there for them, if they don’t understand and won’t stand by me, then maybe they aren’t the people I think they are.  Some people are surprising me.  There are some people who I didn’t know would step up and be my friend through this and they are there.  I’m proud to say they are my friends.

I work hard when I am feeling well to make up for when I’m not.  I often feel better in the morning, so I’ve started cooking a lot more in the slow cooker, I just throw things in it in the morning, and it’s done that evening.  On days when I feel better I clean a little.  I don’t take on a big task, but I get something done.  (My husband argued with this point, but I said I’m trying to get better about this.  I used to start way more than I could finish, now I try to do a little at a time, so I can feel like I accomplished something.)

I’m learning to vent more of my emotions on the computer, this blog and other people’s blogs have helped a lot, so I don’t have all this guilt building up with nowhere to go.

I’m finding other people like me who have similar feeling and we are learning together that we need to not be so hard on our selves.

Even my doctor said I need to give myself a break.  This is hard.  I’m working hard even when it doesn’t seem like it.  I needed to step back from the situation and look at it as if I was a friend of mine and think about how I would feel about me.

I would think “Hey, she’s a pretty brave person who is doing her damnedest to make the best out of a very hard situation.  I don’t want to get in the way, but I wonder if she needs help?”  I know a lot of people are very busy and wouldn’t even think about helping.  Others are so afraid they will be bothering you.  But some people really would like to help, they just don’t know how.  I need to learn how to ask for help when I need it, and not feel guilty about it.  (I really hope my husband does too.)

The problem is a lot of people will say, “If there is anything I can do, just let me know.”, but they don’t really mean it.  What they mean is, “If there is anything I can do that is convenient for me on that particular day and time I will be happy to do it, but other than that…..well….not so much.”  Remember, when I said that I’ve found out that there are some people who probably aren’t my friends anyway….well, I don’t feel guilty about that.

This post is linked to Glass of Win for the PFAM Blog Carnival