Meaningful Monday – Suffering

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“Suffering has been stronger than all other teaching,

and has taught me to understand what your heart used to be.

I have been bent and broken, but

—I hope—

Into a better shape.”

Charles Dickens, Great Expectations

“There is the solitude of suffering,

when you go through darkness that is

lonely, intense, and terrible.

Words become powerless to express your pain;

what others hear from your words is

so distant and different from what you are actually suffering.”

John O’Donohue, Anam Cara: A Book of Celtic Wisdom

We must look deeply in order to understand

the needs, aspirations, and suffering

of the person we love.

This is the ground of real love”

~ Thich Nhat Hanh

 

*photo by W. Holcombe.  Baby Opuntia (prickly pear) Cactus.  Please do not use without permission.

I did things a little differently this week, the not all of the quotes would be considered “mindful”, but I felt they were more meaningful this week.

 

 

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I want to be a better friend to those who are in pain.

 

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*Content warning: This post discusses suicide and depression.

A friend of mine shared this on Facebook and I had to share it with you.

Why “I love you” and “Please reach out” are the crappiest things to post after someone has died by suicide – by Deanna Zandt

I have been one of those people with good intentions who have simply said the wrong things, and for that, I’m deeply sorry.  I have been there, yet I still don’t know what to say when a friend is in their darkest moments.  I need to always remember, I didn’t want to die because I didn’t feel loved, I simply wanted the pain to stop.  It helped me to have someone sit with me, hold my hand, and simply be a witness to my pain.  It helped me to know that they would help if they could, but that they didn’t try to force this false help on me.  I know these things, but it’s very hard to do these things for someone from afar.  I can’t simply sit with someone when they are in pain if I can’t be physically with them.  Often, when I reach out to someone through texts, or messages, I don’t know what to say after that initial contact. Silence is unacceptable when you are texting.  I want them to know that I care, and I simply want to be there for them.  I know I can’t fix it, but that doesn’t mean I don’t want to.

I also read another article I found interesting: Depression and Suicide: Being mindful and accepting of the pain of the dark days – by Jack C. Surguy M.A. 

Jack Surguy mentions something that I found helpful for me; by accepting that everything changes I can take solace in knowing that these feelings will not last forever.  (even if they feel like they will)  When I’m am suffering I know that it will end, that is actually my mantra when my emotions are all out of wack, “this will end”.  I guess it’s a variation on “this too shall pass”, but that sounds trite to me for some reason.  I promise no matter what you are going through right now, good, bad or indifferent, it will change.

I hope you find both of these articles interesting and possibly helpful.

Right now my wrist is killing me, so I need to stop typing, but after the deaths of Anthony Bourdain and Kate Spade, I felt I needed to talk about this, I want to do better.  I want my friends (you) to know I love them, that I care, and that I respect their pain.  I want them to know this every day, not just times like these.

 

* photo by W. Holcombe.  A red yucca plant viewed while lying down looking at the sky.  I found it stunning.

 

Am I getting worse?

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For the past year  I have been much less symptomatic than I have in years (not counting my trials with my medication side effects).  I was certain that I was prepared if this came to an end.  I’m not.  Right now, I’m scared.  I don’t want to end up like I was a couple of years ago, or what I was like from 2008 – 2016.  I’m trying hard to be okay with my life no matter what.  I got to the point that I was okay when I was sicker, but it’s so much easier when I’m not.

Before you think that all of this is because of the stress of us possibly moving to Tucson and worrying about our family, my increased symptoms started before my mother-in-law’s accident; I’m not saying stress doesn’t make my symptoms worse, but it didn’t cause it.  Although, it may be contributing now.

About 3 or 4 months ago I started having some new gastrointestinal symptoms.  I’m having excessive and extreme belching, the feeling that there is something stuck in my chest, and alternating constipation and diarrhea. Oh, and we can’t forget the excessive smelly flatulence, I really wish we could forget that, and I’m very sure Stuart wishes he wasn’t subjected to it.  I’ve been put on acid reflux medication, something I was finally able to get off of early last year.  I tried 3 different kinds of reflux medication and I’m still having symptoms, they are reduced, but they aren’t gone by a long shot.  I had an endoscopy on Tuesday, and it showed…..nothing.  A little redness, but that’s it.  She did take some biopsies but it’s not expected to show anything.  I’m kinda hoping it does.  Nothing serious, but something that can be treated and I can get off this medicine, that isn’t taking care of things anyway.  A few years ago, I was very sick with gastrointestinal issues and after over a year of testing it was found that I have fructose malabsorption.  (I already knew that I was allergic to wheat and I won’t even get into my experience with gluten)  All I could think yesterday when I heard they found nothing, was oh no, another year of testing, and possibly finding nothing.  Since I’m not throwing up, losing weight unexpectedly, or passing blood; this really isn’t a high priority to doctors.  I’m already on a low FODMAP diet and I don’t really want to make another major change to my diet, but I’m guessing that may be what’s going to happen.  Damnit!

With the crazy weather we’ve had this winter my migraines have gone out of control!  They were a bit better, but recently I’m having migraines every day.  It’s driving me crazy.  The pain goes from a 5 to a 9, sometimes all in the same day.  I’m only supposed to take medication 10 days a month, as of the 12th I’d already taken medication 8 days this month.  Crap, crap, crap!  They say to take migraine meds at the first sign of a migraine, if I did that, I’d be out of meds in 10 days, instead I wait until it either gets to a 7, or it’s been non-stop for a few days.  That really sucks.  I will be taking meds a few more days this month.  I’m going to start a DHE regimen to see if I can break this cycle.  That’s means getting a shot 3 times a day for 3 days.  My butt is going to be so sore, and these shots hurt, but hopefully I’ll feel better next week.  DHE is not a preventative, but it does a good job at stopping a migraine, and it often works on cluster headaches too.  Doing the 3 day regimen is to break the cycle, not to prevent new attacks.

I do start Botox next month.  I tried it a few years ago and it helped for a while, but it stopped working.  We are hoping I have a better response to it now.  My doctor is willing to prescribe the new GammaCore, but insurance won’t cover it and it’s really, really expensive!  Hopefully they’ll cover it in the future.  It’s shown to help with both cluster headaches and acute migraines.  It doesn’t prevent migraines, but it can stop them, and since it’s not a medication I wouldn’t be limited to the 10 – 15 uses a month.  There is also 2 new medications coming out later this year for migraine prevention.  I hope insurance companies will cover them as soon as they come out, a new migraine prevention medication is desperately needed.

I’ve also been much more dizzy.  My balance is worse recently, and the world often spins when I move my head too fast.  Last night I kept having vertigo every time I looked up.  Just moving my eyes to look up made me spin.  That was new, and I hope it never happens again.  I think this increased vertigo is migraine related, but I can’t be sure.

Today I had a confrontation with someone and I didn’t handle it as well as I’d have liked.  It left me shaky and full of anxiety.  When I tried to explain it all to Stuart I got so upset I started to seize.  I haven’t had a seizure in a very long time, luckily this was very minor, but it scared me.  I am happy to say that I calmed myself during this by deep breathing and chanting with Stuart.  Sometimes this mindfulness thing really works.  🙂

Now if I can just take each day as it comes and not worry so much.  My worrying isn’t going to make it better.  I think it’s time to get serious about my meditation practice.

 

Anyone out there go from feeling better to feeling worse again?  How did you handle it?

How do you deal with it when you know something is wrong, but the tests come back normal?

Anyone trying or planning on trying the GammaCore?

How are you guys doing?  Any news?  I haven’t been able to read many blogs lately, or be on social media at all, so many things going on.  But I want to keep up with all of you, so please, how are you?

 

 

A Weekend Getaway

Tuesday was my husband’s 50th birthday, and as I write this he is sitting on the floor putting together a Lego helicopter, he is so cool.

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Kiki thought she would help.

Early last week I realized that this was his 50th birthday!  Oh my goodness!  I hadn’t planned anything really.  Yes, I got him the Legos, and I planned to make him dinner, but that wasn’t enough for this milestone.  I was determined to do something special.  I was on a mission.

This mission was impeded by the fact that I can’t talk on the phone or drive.  Hmm, so what could I do?   What did I do?

First I decided I wanted to take him away, not far, just away from our house.  I wanted to spoil him, so I started looking for a hotel that also provided massages.  First I did a lot of looking on line and I even did a live chat with one representative, but the chat suddenly stopped, the hotel had to be called.  What to do?  At this point I was afraid I wouldn’t be able to follow through on my desire to spoil my husband.  Ah, but I have a friend who I chat with via Messenger almost every day, I asked if by chance she had the time to call the hotel for me, and she did!  She called and stayed on Messenger with me so she could ask me questions.  It worked out great!  It was obvious from the start that the staff at this hotel were incredible, not only was the girl at the front desk helpful, she actually went out of her way and went to the restaurant kitchen to see if they could accommodate my food requirements.  She was not asked to do this, my friend only asked if there was a gluten free menu available, she took it upon herself to try to make sure we would enjoy our stay.  She helped us book a Spa Indulgence weekend.  The girl at the spa was also amazing.  She helped us set up massages for both me and Stuart at the same time.  I wanted a special type of massage, Lomi Lomi, and she made sure I could get it.  (there is only one massage therapist who does this type of massage)  Again, my friend was amazed by how helpful these women were.  It was a very good experience.

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from inside our hotel

I also wanted to take us a little picnic, that way if we had the munchies during the night,  we didn’t have to go forage for food (or spend outrageous amounts on room-service).  Really, I just thought it would be romantic.  Again, an obstacle was in the way, I can’t drive.  How would I get the food for the picnic without Stuart’s help?  I didn’t feel comfortable asking my neighbor to take me to the grocery store, so I decided to look into having some groceries delivered.  I had a little difficulty because the first place I tried to order from had to call to get payment information.  I couldn’t give them my credit card information over the phone, since I can’t talk on the phone.  Bummer.  Of course, I didn’t find this out until AFTER I had done all my shopping.  pfft.  So I found another store that offered delivery and was able to place my order and have it delivered while Stuart was at work.  I did have to tell him we were going away for the weekend, but the picnic was a surprise.

I also got our pet sitter set up.  That was another issue I had to sort out.  Our normal pet sitter was going out of town, but she offered to take Kiki with her.  I know that my dog hates to ride in the car, she gets car sick…poor puppy.  So I called Kiki’s trainer (he helped her feel better about people coming in our house, it still bothers her, but she is much better about it)  He said he could take her for the weekend and I thought that would be the answer, until I found out how far it is to his place.  Kiki’s normal sitter’s trip would mean an hour or so in the car, if she stayed at her trainer’s it would have been a 45 min ride.  Hmmm.  Kiki went on a little trip with her normal sitter.  It all worked out, but it was an ordeal.  And I handled it all through texts, without help from Stuart.

Getting ready for this getaway took a lot out of me, but I’m proud that I was able to do all of these things without Stuart’s help.  He does so much for me, doing this for him meant the world to me.  He was pretty happy with it too.  I’m not even sure if he was happier about the trip, or the fact that I spread my wings and found ways to be a little more independent.

While planning this trip I was so worried that we’d get there and I’d start to feel bad and would ruin everything.  Of course, Stuart wouldn’t have thought it was ruined, but I would have.  It would have broken my heart.  As it turned out, I didn’t sleep well on Friday night and Saturday was a bit of a challenge for me.  I was very dizzy all day and simply felt, bad.  Truthfully, I wanted to stay in bed and sleep all day, instead I got up, had a good breakfast with my husband, and went to the fitness center and did all of my PT exercises.  I was hoping exercising would make me feel better, it didn’t.  We had talked about doing something on Saturday, either before or after our massages, which were scheduled for 2pm, that didn’t happen.  We just vegged and spent time together.  Then we had our Spa Experience.  oh my goodness….

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all ready for my massage

When we arrived at the spa we were taken to the dressing rooms and were given plush robes and slippers to wear.  We were given fruit scented water to drink as we waited.  It was so relaxing, I’m relaxing right now just thinking about it.  We were then taken to a darkened room and were given most delectable massages.  It was a dream.  Afterward, we were again given water in wine glasses and settled in to rest a bit before leaving.  There were also snacks and tea available if we desired.  There were these fabulous lotions there and I actually found one that I like.  Most things have way too much of a scent for me, almost everything I have is either unscented or has a lemon scent, this lotion smells like Fresh Melon.  Stuart loves it, and it doesn’t make me wheeze or give me a migraine…score!

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On both nights we had dinner at the restaurant in the hotel.  The first night we had steaks, they were delicious.  I felt that the vegetables had too much oil on them, but they were still tasty.  The second night we both had fish, it wasn’t as good as the steaks, and again I felt like the vegetables had too much oil.  They were both good meals, they just didn’t seem to be on the same caliber as the rest of the hotel.  Except for desert, I had chocolate crème brûlée, it was divine.  I saved some and had it on both nights.  Stuart had a salted caramel cheese cake, it was go good.  A bit too sweet for me, but very good.  Really the crème brûlée was a bit too sweet for me too, but it was oh so good.

There’s more to tell about this trip….but I might keep that to myself.  😉

This week I’ve paid the price for my excursion, but it was worth the pain and the dizzies.  Stuart is worth it.  It was nice to take care of my caregiver.

Sometimes, it’s just worth it.

 

Have you accomplished something that you didn’t think you could?

Do you sometimes think “it’s worth it”, when you know you are doing something that may deplete all your reserves and have you flaring for days?

 

 

It takes how long?

When you have a chronic illness chances are it’s an invisible illness, others have no idea what you have to do to get through the day.  With my illnesses some days I look sick, some days I can’t get out of the chair and you can tell, I’m sick.  Other days I can get it all together and don’t look sick at all.  It’s those days that confuse people.

I’ve learned that it takes me longer to do things than it does the average human.  There are many days that I can’t accomplish anything, but let’s not talk about those days.  I want to talk to you about the days I am able to do a few things.  The days I appear normal.

Yesterday I started to do the dishes.  The dishwasher needed to be emptied, and there were dirties that needed to go in.  For a normal person this would just take a few minutes.  I started to unload the dishwasher, I got the top unloaded and put away, then I had to rest.  I came back after a bit and started on the bottom, I put away the silverware, and needed a rest.  After about 30 minutes I went back and finished up putting away the rest of the dishes, and started loading up the dishwasher.  While loading it up I took 2 breaks.  Therefore, at the end of this it took me over 3 hours to unload and load the dishwasher.  At this point all I could do was make myself a cup of tea.  This was the end of my ability to do chores for the day.  No one would think that doing the dishes took 3 hours out of my day.  I must say that I’m okay with this.  I’m grateful I can do the dishes at all.  I only wish I could do them every day.

Last week I had an hour to take a bath before a TV show came on that I wanted to see, I thought that would be plenty of time.  Boy was I wrong.  I need to have help getting in and out of the tub because of my balance, that takes a little bit of time, but not much.  I started to take a bath as normal, a little rushed because I wanted to make sure and get out in time, but just a normal bath, then I got dizzy.  Very dizzy.  Try getting a soaking wet 135 lb woman out of the tub when she’s very dizzy, it’s just not that easy, but it’s something that happens a lot around here.  (the reason I am dirty a lot of the time 😉  Getting me in the tub, taking a bath, and getting me out of the tub, took over 2 hours.  Luckily I did have the DVR set for my show.  I know that getting dizzy in the tub is a fairly regular occurrence so I should never put a time limit on it.  But how many people do you know that can’t get a bath done in an hour?

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I don’t look sick.  Taken at a wedding, July 2017

Then there are days when I seem to be able to go non-stop.  Recently I had a weekend like that.  We went to a wedding a couple of weeks ago.  On the day of the wedding, I had my hair done, then I rested a little bit, then we had the wedding at 3pm.  The wedding didn’t actually get under way until about 4pm.  Luckily, I was just sitting talking with people.  After the wedding, we had the reception to attend.  On the walk over, I had a mini vertigo attack, because of my vertigo we didn’t intend to stay long and we had planned to have dinner with my sister and her husband.  Then I started seeing people I have known for over 40 years, and adrenaline took over, about 2 hours later, we were finally leaving  (know that all I did was sit and talk with people).  We went back to our hotel, changed and were off to dinner.  We were finally back to our hotel around 9pm.  I was going full out, all day long.  Boy was I beyond tired.  Not only was I exhausted from the simple physical exertion of it all, and the mini vertigo attack I had at the church, I was completely off kilter from trying so hard to hear all day.  (I did find out that my lip reading skills have improved dramatically.)  Of course, I couldn’t sleep due to painsomnia (insomnia due to pain).  There was only 1 station on the TV that would show captions (yeah, what was up with that?) so I was stuck for hours, watching something dumb, I can’t even remember what it was.  This trip was very enjoyable, I wouldn’t trade it for anything, but boy did it take a lot out of me.  It took a week or more to recover fully.  For a “normal” person they could have made the trip in one day.  It’s about a 3 hour ride (I can’t drive).  We could have gone down for the wedding and come back that night, if I were a “normal” person.  Instead we went down Friday night, so I would be well rested for Saturday, and we stayed until Sunday so I could recover as much as possible before the ride home.  I had a lot of support for this trip or I never would have been able to make it.  My neurologist (headache specialist) sent me home with a series of shots to be given over the weekend to help with migraines and cluster headaches, both of which have increased dramatically recently.   The specialist I’ve been seeing for my back called in extra meds for me for the weekend.  If these two doctors had not increased my treatment for the weekend, I would never have been able to go and enjoy myself.  I will be forever grateful.  While there my sister took me to have my hair done, she made sure I could understood everything, even though I couldn’t hear in the salon.  She then came back to our hotel and ironed hubby’s shirt.  Without this help, I don’t know if I could have made it.

To summarize: We don’t always look at bad as we feel, we often need to rest more often than what is considered “normal”, sometimes we have to have a lot of support to do things that “normal” people do without thought….and that’s okay.   We normally appreciate things much more than “normal” people.  We care deeply.  We can still live a full life, it’s just different than a “normal’s” life.  and that’s more than okay.

 

 

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

#HAWMC Day 19 Rough day? What do you do?

Today is Day 19 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Everyone has tough days, but how do you pull yourself out of the rut?
Maybe you blog, repeat affirmations or listen to a favorite playlist.
Write about what tools, tips or practices you use to lift your spirits after a rough patch.

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image source pixaby

When I read this prompt I was reminded of a post I wrote a few years ago, I thought I’d link back to it now for your reading pleasure.  Living In The Moment  In this post you will find one of the main ways I deal with the rough days.

A little list of things I do to deal with a rough patch:

  • I do things that get me involved with others.  I reach out.  I text, email, blog, talk….
  • I do things that relax me.  I take a bath, a nap, read, watch movies and  mindless TV…
  • I do mindfulness exercises.  I focus on staying in this moment.  I remember that the past is over and the future is not written (when I’m having tough days I can get caught up in “how good things use to be” and “how bad things will always be”, neither of these things are true, focusing simply on the present can make it not as overwhelming). I meditate and do deep breathing exercises.
  • I remember to be grateful.  I write in my gratitude journal, I am sure remember I have many things to be grateful for.
  • During particularly rough times, such as a very bad vertigo attack, I chant.  I have a special chant I learned in a yoga class years ago that my husband and I chant together when I’m extremely sick with vertigo, this helps to calm me down. Om bhur bhuvah svah tat savitur varenyam”
  • I have my go to books, and I seek out books on mindfulness.  I have books by Jon Kabat-Zinn, Thich Nhat Hanh, and others that I rely on, but the first book I reach for is How to Live Well with Chronic Pain and Illness, by Toni Bernhard.
  • One of the biggest things I need to do during a rough patch is to remember, it’s not my fault.  I’m often hardest on myself during a rough patch, so I try to practice self compassion during this time most of all.
  • During particularly rough patches I reach out to my therapist, remember, that’s what they are there for.

How do you get through a rough patch?  Any suggestions?

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.