Are you a Mary or a Debbie?

Today I’m happy to introduce a new friend, Kim, from her blog, I Tripped Over a Stone.  She is an amazing writer; I am so pleased she decided to write a little post for us.  Please jump over to her blog and check her out, you’ll be so glad you did.  

Hello my name is Kim. Wendy asked me to scoot over here from my blog and do a guest post for her. I happily accepted. You see, I consider Wendy a friend. We are similar in many ways, besides having invisible illnesses, we have the same kind of humor. I have no doubt we will one day meet in person.

I have Fibromyalgia Syndrome, Wendy has Meniere’s Disease. These are classified as invisible illnesses and both are chronic conditions. Neither is really a great one to have. Would you want want vertigo, inner issues and migraines or would you pick constant pain, difficulty sleeping and cognitive difficulties? Choose. Yes, choose right now! Fibromyalgia Syndrome or Meniere’s Disease?

Now that you have picked your illness, how would you handle this new, life altering, invisible illness? Would YOUR life be over? The answer is yes. Your life, as you know it, will be over. You will have to say goodbye to the old you and hello to this new person who feels like crap most of the time and is a shell of who you worked so hard to become. You will probably lose your job, most of your friends, and some of your family members. Since your illness is invisible, you will be deemed unreliable even though its your health that’s unreliable, not you. You will be scoffed at for being on any form of assistance and called a liar because you do not look sick. Welcome to your new life.
Now you get to choose again! Are you going to be a Debbie Downer or a  Little Miss Mary Sunshine? People usually pick one or the other. Debbie and her self-defeating behavior; why try when nothing will change, there is nothing left for me in this life, I am of no use. Now Little Miss Mary Sunshine knows everything and it is making a brand new life, finding the right doctors, support groups, and will forge ahead! These are the personas we sometimes show others. In reality, we are sick and tired of being sick and tired. We just want the pain, the vertigo, the migraine…to end. A cure would be great! Until then, we take our medication. Sometimes we will go to extremes and have surgical procedures, with no guarantee of a positive outcome. And we read everything; news of every new pill, treatment, therapy, hoping we will stumble upon our way out of this illness. So who is the persona you show to the outside world, Debbie or Mary?

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Ok, you can be yourself again. I am am not very found of Debbie or Mary but in a pinch I will become one or the other. I’m never quite certain who I will pick, it depends on the circumstance. It was not fair of me to expect you  to choose either. But life is not always fair!

In closing, Wendy and I will continue on our individual health journeys with a little help from each other and you! Being able to tell our stories and allow people to see us is quite terrifying at times. But somehow our paths have led us to this place and we are so very glad it did. We have been given a gift! A place to share our lives and the ability to meet such wonderful and endearing readers of our posts.

I thank you, Wendy. I enjoyed being your guest today.

kim-post-2~Kim

Visit me at I Tripped Over a Stone.  itrippedoverastone.com

Mindfulness Monday – Change

ice-sicle

photo by S. Holcombe, rights reserved.

“If you change the way you look at things,
the things you look at change.”

~Wayne Dyer

 

“The only way to make sense out of change
is to plunge into it,
more with it,
and join the dance.”

~Alan Watts

A visit to the Migraine Doctor

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ocular migraine, by w. holcombe

You may recall from my last visit to the migraine doc  (a neurologist who specializes in headaches) that she’s tried just about everything and suggested that I look into studies.  Well, she hasn’t given up.

I saw her last week and it was a long visit.  I am always impressed when I go there that she never seems to be in a hurry.  I never feel like she is rushed to get to the next patient.  It’s amazing really, this is a doctor who is backed up over 3 months for an appointment, you know she’s busy.  During our visit, I was having slow vertigo, which made it difficult for me to follow everything she was saying.  I’m still asking Stuart some things, unfortunately he doesn’t seem to have much of a memory.  He must have been worried about me.  I did understand most of the visit, there are just little things I remember her saying that I wish I remembered.  Like she said that Melatonin was good for something other than sleep, but we can’t remember what…….well I just looked it up and it can help with a bunch of things, including migraines.  Who knew?  I don’t know if that’s what she said, but I’ll keep taking it.  It helps fall asleep anyway.

She is concerned that some of my migraines may be caused because my CSF (Cerebrospinal Fluid) is too high again.  I have fluctuating CSF, it tends to run high.  The migraine medications that I’m on help keep it lowered.  She felt that we need to put me on a drug that will increase this effect.  So I was taken off Topamax and put on Diamox.  I’ve been on Diamox  before, my CSF pressure did not remain stable on it either, we’ll see what happens this time.

She did look in my eyes, it was difficult because I had a bit of nystagmus going on at the time so my eyes were jumping, but she saw that it was bulging a little bit back there, a sure sign that my pressure is up.

The weird things is, if I have high CSF I should have a worse headache when I lie down.  Sometimes I have a bad headache when I wake up but often I don’t.  When I have a bad headache, it doesn’t get better when I lie down.  hmmmm.  Makes me wonder.  But then there’s the eye thing, she did say it was a slight bulge.  Well I’m just not convinced and I don’t want this drug to make my pressure go too low.  It’s a very strong diuretic.  I’m peeing a lot, but my body will get used to it I’m sure.  I’m a little more light headed, but that could just be me, but it could be the drug.   I feel very confused, this one has bothered me a lot, but it says it will go away shortly.  If it doesn’t I won’t be on this drug long.  I do not like being so forgetful.   I was angry at Stuart yesterday and couldn’t remember why!!  I don’t get angry at him often, you’d think I’d remember why I was mad at him.  I think this drug is making me grumpy, or maybe that’s just me.  I also think it’s reducing my appetite, as least that would be a good thing.

To sum up, I’m on a new drug (or back on an old drug).  I’m not sure about it.  I’m keeping an open mind though.  I’m keeping a journal of my headaches as always, I’m adding in other side effects I’m feeling and paying close attention to all.  I go back to the migraine doc in 2 months.

I can only say: Chronic migraines and New Daily Persistent Headaches suck.

#MyMightyMonth – A day in my life

I just got an email from The Mighty, they are starting challenges to promote self-care.  The first 30-day challenge is to journal.  I thought, what better way to keep me posting and keep my creative juices flowing?  I may not post every day, this is not that kind of challenge, I do not feel pressured to post every day, it’s just a challenge to get you started journaling, but I plan on posting often during the month of January.  Most of these won’t be my normal post, these are going to be journal entries.  You will be able to step in my life for a month and see what Wendy is up to.  You may get very, very bored, but you may find out a few things about me that you never knew.  You may also find out how I deal with some of my trials, or how I don’t deal with them.  You might find out just how long it takes me to do things.  Some days, you might find out that I don’t do much of anything.  I think all of this will be good, for me, and hopefully for you and this blog.  I have a lot of new followers who don’t know a lot about me, this is a great opportunity for them to find out all about ME.  🙂

It’s not quite January yet, but I thought I’d write about my day today, it was much more eventful than my normal day.

We had planned to go to Ikea today to get hubby a desk, he is in dire need of one.  I’m very tired of seeing his computer on the dining room table.  Unfortunately, when he looked at his coupon he found it expired and he didn’t want to spend that much money right now.  Truthfully, I’m not sure he’s completely decided that’s the desk he wants.

I have to admit this put my entire day off game.  I was really looking forward to going out to Ikea and walking around that big store and getting some exercise.  It’s always a bit of a scare doing something like that, but after being closed up in the house so much, it is a thrill for me to be able to do anything out of the house.  Even if I might pay for it later.  Needless to say, I was upset, so we decided we needed to go somewhere.  We decided to go to the mall.  I have a gift certificate, what better time to use it?   Well today was the day that everyone decided to use their gift certificates, or take presents back, or shop after Christmas sales, or something, because there were NO parking places at the mall.   I couldn’t see fighting all the people, and me with my walker, no way.

We decided to go by the library.  I had a book on hold and thought we’d pick it up.  We were waiting because I have another book coming from another library, but it was something to do!  It made me happy, and Stuart found 2 books, that made him happy too!

After the library, I admitted I still had some energy and wanted to walk.  We discussed going to the park, then I asked if we would be driving close to Michaels, because I knew hubby needed glue for models.  We were driving right by there so we decided to check and see if maybe we could get in there.  It was great, there’s a handicapped space on the side and 3 were open!  Bam! right by the door.  We were in.  And it really wasn’t that crowded once we were inside.  We decided to just browse.   I’ve been looking for something I can do with my hands.  I used to like doing cross stitch when I was younger, but what do you do with that kind of stuff when you are finished with it?  I have a lot of paintings that I have no where to put now.  Anyone want a painting?  So, I’ve been thinking about crochet, but I’m not very good at it, I just can’t keep my tension correct.  I have this Knifty Knitter thing that is pretty cool.  It’s a tool you use to knit with.  You aren’t really knitting in the traditional sense, but it looks neat when you are finished.  I decided to work on that again and bought some yarn.  Unfortunately, when I got home I found the yarn is too thin, I’ll have to get thicker yarn for this to look right.  After that I’ll be making things left and right.  hahaha   Working with yarn is good for tactile sensations and fine motor skills.

 

sketches10-8

by w. holcombe

I also got a book called Zendoodle.  I love this kind of drawing. (please I don’t want a debate about Zentangles here)  So far, I’ve doodled just a little, but I know I’m going to be doodling more.  I used to do this a lot, it’s very calming, and it is good for my spacial relations.

I took Valium today when we left as a precaution to try to prevent me from having vertigo.  I’ve been having it a lot recently.  When we got home today, I started playing with the yarn, and shortly thereafter, the vertigo started.  I didn’t get much done today after that.  It wasn’t a violent bout of vertigo, but it was certainly not slow.   I felt sick, but luckily I didn’t throw up.

The vertigo has been starting and stopping over and over for the rest of the evening.

That was my day today.  Hubby took the week off work.  I think this is a dumb time to take off work, but I didn’t think about that when he asked me about thinking this week off.  There are just way too many other people off work doing things, there’s too much traffic, too many people.  You can’t do anything.  And we couldn’t take a trip.  Heck, who wants to take a trip around Christmas, unless you are visiting family, it’s too crowded.

I’d rather stay home and enjoy the last days of my Christmas tree.

Tomorrow I’ll pay for today a bit.  I’ll need to take it slow because I did so much, but I wouldn’t change a thing.  I had fun, and that’s important.  Oh, tomorrow I have my yearly physical, so much for totally resting.

If you’d like to take The Mighty’s 30-Day Challenge go to their Facebook page and check it out. 

Mudita – finding joy in the joy of others

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“Mudita is a word from Sanskrit and Pali that has no counterpart in English. It means sympathetic or unselfish joy, or joy in the good fortune of others.” (1)

I bring up Mudita now because those of us who are sick often find it very hard not being able to participate in celebrations this time of year.  We feel we are stuck on the outside just looking in, and as we look in we are envious.  We can’t feel joy.  Mudita is the opposite of envy.  When we feel mudita we feel joy in the joy of others.  We are genuinely happy that others are having a good time, even though we can’t join them.

This feeling doesn’t happen over night.  It’s hard to overcome those feelings of envy.  We don’t want to feel this way, but we have to admit, that’s the way we often feel when things come up and we can’t join in the fun.  We don’t feel joy in the fun the others are having, we feel sadness and anger that we can’t join them.

I first read about mudita when I read How To Be Sick by Toni Bernhard.  At the time my husband was playing games with a group of friends and I used to be envious that he had this group and I didn’t have anything like it.  He’d call me from there and I’d get this knot in my stomach and feel horrible because of this envy.  Then one day I realized how much he needed this time, how much he loved this activity and how much my envy hurt him.  (even though I thought I hid it well)  I remembered what I learned from reading Toni’s book.  I remembered mudita.  It didn’t happen overnight, but in time I started feeling joy when hubby would call from his game and sound excited about how things were going.  At first I faked it.  I knew I should feel joy for him so when I talked to him I put on a smile and told myself how happy I was for him and how much joy this made me feel.  Did I feel this at first.  No.  But after a while when he called I was truly happy.  I felt joy hearing how the night was going.  I was no longer faking it.

When trying to practice mudita start small.  Start with someone you don’t know.  When you see someone win a competition feel joy in their joy.  Then when you give a gift, feel the joy the receiver feels (that’s an easy one, I think).  Take it one step at a time and you will be surprised at how much joy you can feel when others feel joy.

It may not happen this holiday season, but perhaps when you can’t participate in the next celebration you might be able to find mudita, and feel joy in the joy of others.

I recommend all of Toni Bernhard’s books:  How to be Sick, How to Live Well with Chronic Pain and Illness, How to Wake Up.  If you are chronically ill and haven’t read it yet, be sure to read How to be Sick.  I’ve read it over and over and keep going back to it.  It helps me live the day.  It makes me feel like I can get through this and thrive.

For further reading on Mudita, of course you can check out Toni’s books, but also check out.

Christmas My Way

christmas-treeWhen I was 30 Christmases as I had known them changed forever.  That was the year my mother died.  Everything changed that year.  When the matriarch of the family dies the traditions die with her.  We tried to keep things alive, we had Christmas at my sister’s house as she had the only grandchild, things weren’t the same, but they were still nice.

Then there was a falling out between me and my niece.  Well not a falling out really, she got mad at me and refuses to be in my presence.  There isn’t much I can do, not that I haven’t tried, I have.  I could speculate all day what has happened between the two of us, but at this point it doesn’t make much difference.  This has however, ruined many relationships for me in my family.  Family Christmases became a thing of the past.

After Stuart and I became a family we started having Christmas celebrations with friends, as Stuart’s family lives a long way away and they don’t do much for the holiday anyway, again they are without the matriarch.  We normally celebrated Christmas day alone, just us, but leading up to that time, we went to parties and had people over to our home to celebrate.  It was a joyous time.  Then I got sick, and things changed.  We no longer got invited to parties.  I no longer felt that I could throw a party.  Then we moved so there is no likelihood of rekindling that time.  Truthfully, we’ve all changed so much, I don’t think there could be any rekindling even if we do move back to our old city, or if I miraculously got better.  Let’s be honest, my old friends really are just that, old friends.  They aren’t a part of my current life.

The last few years I’ve tried to be okay with the holiday.  But truth be told, I’ve been very depressed.  Depression runs rampant during this time of year and I was not immune.  I tried hard not to feel bad that I wasn’t surrounded by people.  I’ve had the one person near me who means the most to me, why should I be depressed?  Because Christmas is a time for friends and family.  A time for gatherings.  It was the two of us, yet I felt lonely.  And I felt guilty that I didn’t feel that it was enough.  I was depressed and felt guilty for being depressed.

Over the past few years I haven’t cared about decorations, we had no tree.  Why hassle with it?  No one would see it.  No one would care.  We’d have a little celebration.  We’d try, but it all seemed like we were just going through the motions.  Christmas is for groups of people, not just the two of us, and we didn’t have a family.

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a little decorations making the holiday our own

This year has changed.  No we still don’t have a family, and we aren’t celebrating with any friends.  (We still don’t have any locally)  I changed.  I realized that Christmas really isn’t about family and friends.  It’s all about how you feel inside.  It’s not about giving the biggest gift it’s about giving to those in need.  It’s not about being with a bunch of people it’s about caring for those you are with.  It’s about caring for mankind.

This year I decided to decorate.  I never go all out like some people, that just isn’t me, but we put up a tree, and did a little decorating in the house.  It has made all the difference in our home.  We are in the spirit.  I understood just how much when my loving husband was looking through Amazon and found the National CASA Association Wish List, they provide Toys for Foster Kids, and told me that if I hadn’t purchased his presents yet he wanted the money to go to buying these kids presents.  How special is that?  So we took most of the money we planned to spend on our Christmas presents and bought Toys for Foster Kids.  Realize I did say most, I decided we needed a little gift exchange between the two of us, just a little something.

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this is the actual puzzle we put together

We also have other traditions we are going to make sure we revitalize.  We always watch, It’s a Wonderful Life on Christmas Eve.  This has been a long standing tradition.  This year we are bringing back putting together the Charlie Brown Christmas puzzle, and our LEGO Christmas Train.  The train will be put together this weekend.  The puzzle goes together on Christmas day.  I don’t have a lot of traditions.  We cook a few little things as the time goes on, and health permits.  We’ve made some cookies so far, we’ll make spiced nuts to give to our neighbors, we’ll make a special breakfast on Christmas day….  The point is we are making this Holiday season ours.   And if at any time I can’t do something because I don’t feel like it we can postpone until later, or just decide not to do it.  All is good during our holiday celebration.

How can you make the season less depressing and more your own?  Remember that it really isn’t about family and friends, it’s about love and giving.  Love everyone and give to those in need.  Honor traditions you want to, we watch It’s a Wonderful Life.  Make new traditions, like putting together a themed puzzle on Christmas day.  Put up decorations if you want.  If you aren’t able to put up everything you want to, then either ask for help, or try to pick out your favorite decorations and put those out.  We have a small tree, and not all my ornaments fit, so I sit my favorites around as decorations.  The point is to make the holiday your holiday now.  Don’t try to make it what it was when you were well, or what it was when you were growing up, or any dream holiday you have been trying to live up to.  Make this holiday something special, on your own terms.

Sometimes no matter how much we try to make the holiday a pleasant thing for us, it just doesn’t work, depression takes over.  For those who get depressed during this time of year, remember that you are not alone.  If you need to reach out, please do so, there are numbers at the end of this post if you are in need.  If you need a friend to talk to please feel free to contact me.

  • U.S. National Suicide Prevention Lifeline: 1-800-273-8255  If you are having thoughts of suicide, call this number immediately.
  • Kristin Brooks Hope Center Hopeline: 1-800-784-2433  This hotline can help you cope with a range of depressive feelings.
  • Veterans Crisis Line: 1-800-273-8255 (press 1)  Responders understand the unique experiences of veterans.
  • United Way Helpline: 1-800-233-4357  They can aid you in locating a therapist, healthcare or basic necessities such as housing and food by directing you to local services.

#HAWMC Day 21- Just Keep Swimming

Today is Day 21 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Monday Motivation: What’s your life slogan?
Explain what words or mantra keep you going and why.

I’ve spoken about quotes that help me through, but there is one mantra that I will start to chant when things get particularly tough.

Just keep swimming.

When I saw Finding Nemo and heard Dory say, “Just Keep Swimming”, to get her through all of her challenges, I started saying it to remind me to keep going even through the hard times.   It started out as a joke, but it stuck around because it made me feel better.  If I can “just keep swimming” I’ll be okay.

just-keep-swimming

image source here

I admit when this prompt came up I had no idea what to write about, I’ve already told most of what I live by, my favorite mindfulness quotes that mean so much to me and the chant I use when I have vertigo, but those things just didn’t seem to fit in here.  I turned and asked my hubby what he thought and he immediately said, “Just Keep Swimming”.   I guess it’s a pretty good mantra, and I guess he knows me pretty well.

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.