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.

 

 

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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.

 

 

#HAWMC Day 18 Don’t say that!

Today is Day 18 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

What’s a health cliché that really bugs you?
What are you tired of people asking you or saying to you again and again?
Write it down. Then reclaim it!
Take it back and turn it around so you make it something you could be comfortable hearing.

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image source click here

There are a number of clichés that really get on my nerves:  “What doesn’t kill you makes you stronger”, “Instead of having a bad day, be thankful you have the day”, “Where there’s a will there’s a way”, are just a few.

  1. “What doesn’t kill you makes you stronger” – If this were true I’d be Superman by now!  NO, what doesn’t kill you, doesn’t kill you.  Period.  You might learn something from it, but it didn’t make you physically stronger.  Some people might be mentally “stronger”, others might break down completely.  When something doesn’t kill you, well thank goodness it didn’t kill you.  Instead of saying this, tell me how strong you think I am.
  2. “Instead of having a bad day, be thankful for the day” – Why can’t I have a bad day and still be thankful?  Everyone has a bad day and that’s okay.  There is no way that someone can have a good day every day, and no one should make someone feel bad when they are having a bad day.  I don’t believe my illnesses make my life miserable, but I do have bad days.  I’m still thankful for my days, if they are good or bad.  If you feel I’m having a lot of bad days and you want me to pay attention to what I’m grateful for, then just say something like, “What are you grateful for today?”  and start a conversation, perhaps you can share something you were grateful for that day.
  3. “Where there’s a will there’s a way” – In who’s world is this true?  I have the will to do many things that I will never be able to do.  Before I was sick there were many things I had the will to do that in no way could I do, for any number of reasons.  This is just a falsehood, yet I hear variations on this all the time.  I don’t know how to put a spin on this one.  Let’s just not say anything like it, Okay?

 

Did I touch on anything that people say to you?  What else do people say that bugs you?

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.

#HAWMC 17 – Song of Silence

Today is Day 17 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Throwback Thursday!
Grab a post from your archives and repost it!
Add a few sentences at the beginning to frame it.
Why you chose it. Why you liked it. And why it should be shared again.

The post I want to share with you again came from another Health Activist Writers Challenge on April 11, 2012.  The prompt was “Theme Song”, I was to imagine my health focus or blog is getting its own theme song.  At the writing of this post I was losing my hearing, but I hadn’t lost it completely yet.  I did not have a cochlear implant yet.

I wanted to repost this because often people have no idea what it means to have tinnitus.  Please note that my tinnitus will not sound like anyone else’s tinnitus, everyone is different.  Even my tinnitus is different on different days.  It sounds much different now than it did at the time of this recording.  I want people to know that just because I’m deaf it doesn’t mean I just hear silence when I take off my cochlear implants.   Here is that post, I hope you enjoy it:

I happen to be losing my hearing due to Meniere’s Disease.  So music is very hard for me.  I can’t really hear it even with my hearing aid, it sounds very tinny.  However, I have tinnitus all the time, so I hear noise all the time.  At this time I’m deaf in one ear, and have fluctuating loss in the other ear, the other day I was having a particularly low hearing day.  Deciding my hearing aid really wasn’t doing any good, I decided to just leave it out.  That was the day, I read this prompt.  I thought, I couldn’t have a song.  Then I thought, even when I’m deaf, due to the tinnitus, I will hear sounds all the time.  NO, they won’t be sounds I want to hear, but I will hear sounds.

I talked with a friend of mine, Vincent Morrison,  who is a sound engineer.  He agreed to help me record something similar to what I hear every day. Please know, my tinnitus changes A LOT.  It varies constantly.  But these sounds always seem to be around.  We did put in some of the startling sounds that just come out of no where that scare me.  We didn’t make it as loud as it can be. (I did want people to be able to listen to it.)  I wanted to represent that my tinnitus can be softer, a medium tone, and I would say deafening…but that would be silly wouldn’t it?

So on a better hearing day, my dear friend came over and he tried his best.  I must admit I’m not the best person at describing sounds.  I am so touched to have this recording.  Trying so long and so hard to explain just a little of what I hear has been so hard, now…this is my song.

“My Songs of Silence” – sound recording by Vincent Morrison

Artwork by Wendy Holcombe – “Fractured Ear”

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.

#HAWMC Day16 Activist Advice

Today is Day 16 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Wisdom Wednesday:
What advice do you have for health activists just starting out?
Share your words of wisdom for all the health activist rookies out there!

I guess my biggest piece of advice would be to just get started.  Just jump in and start.  I’ve been blogging for years, yet I feel like I’m just getting started.  I always feel like I’m just getting started, perhaps because I do little more than blog.  Recently I started my facebook page, and I’ve started being active on Twitter.  I’ve searched out others who posts about Meneire’s Disease, migraines, bipolar, chronic illness and pain in general.  I’m learning so much!

I can’t do a lot of the things I’d like to do as a health activist.  I’d love to be able to be a voice in person, to speak, to go to conferences, to be more involved.  But alas, I can’t.  I may try more in the future, but I’ll admit at this point in time I’m too afraid to try much more than I’ve been doing.  It has been very rewarding though to get to know so many people who not only understand what it’s like to go thorough the same things I do, but are able to put a voice to it.

My recommendation for starting out to be a good activist.  Start slow.  Don’t bite off more than you can chew all at once, you will get burned out way too fast.  Focus on one thing at first then move on to the next.  If you blog, make sure to blog on a regular basis. No mater what form of social media you like, be sure to stick with it.  Post often. Make contacts.  Believe in what you are doing.  Care.   I guess that’s the biggest thing, that’s what will keep you going, you must care.

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.

#HAWMC Day 14 – Last Week/This Week

Today is Day 14 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

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Case of the Mondays.
Write about something that gets you down, burns you out, or makes you sad.
Purge it in a blog post. Turn it around at the end and tell Tuesday why you’re ready for it.

I don’t want to get all caught up in the self pitting part of Blue Monday.  I had a pretty rough week last week, this week I’m determined to turn it around.  Let me tell you about it.

Last week I had severe migraines almost every day.  This week I plan to take medication as soon as the headaches start.  I will not worry so much about running out of meds, or rebound headaches.  I will work to stop this cycle of severe headaches before it gets too strong of a grip.  (hopefully)

Last week I was very off balance and was having mini attacks of vertigo.  Last week I was not prepared for this.  I’m too used to having my husband here to help me.  This week I will be prepared to help myself as much as possible.

Last week I couldn’t walk without holding on tight to my walker.  This week I will bring my good walker in the house from out of the car, I have a seat on it and a better way to carry things.

Last week I had a hard time getting myself food because of my balance, this week I will be prepared and will have food ready that I can just grab and go.  Food that I can balance on my walker.

Last week my anxiety was very high.  This week I will get back to meditating and taking breaks for deep breathing exercises.

Last week I beat myself up because I felt so needy and dependent.  This week I will practice self compassion.

Last week I cried a lot.  This week I will focus on the positive.

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.