Death and Living

On By WendyIn Chronic Illness14 Comments

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On June 30th my father died.  Yesterday was his birthday.  I would have thought that I would be filled with sad emotions, instead I’ve been filled with a renewed lust for life.  All we know really is life and death, I’m thinking that his death made me realize just how lucky I am to be alive.  I may have a lot of hurdles to jump over every day, but I’m alive and I will thrive.

Often when you have a chronic illness life becomes so hard we don’t care to live any longer.  I know I’ve been suicidal, more often I’ve simply felt that I didn’t want to wake up.  I simply didn’t want to exist any more, it was just too hard.  Since my father’s death, I’ve realized that I’ve been wasting what life I’ve been given.  Yes, I’m sick and I can’t do a lot of things that a normal person can do, but there are a lot of things I can do, I just need to figure out my limits and live within those without wishing for things to be different.  Wishing for everything to be different makes life miserable.

Losing a parent can make you reevaluate your life.  For me it made me realize I haven’t been appreciating my life.  I realize I want to live.  I may not enjoy every moment of my life, my life may be hard, but it’s my life and I’m going to live it!

 

During this holiday season, I wish you all a life well lived.

 

**all images on Picnic With Ants created and owned by Wendy Holcombe unless otherwise noted.

Mudita – finding joy in the joy of others

On By WendyIn Chronic Illness29 Comments

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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.

Mindfulness Monday 29

On By WendyIn Chronic Illness, Mindfulness6 Comments
poinsettia3
image by w. holcombe

“Did I offer peace today?
Did I bring a smile to someone’s face?
Did I say words of healing?
Did I let go of my anger and resentment?
Did I forgive?
Did I love?
These are the real questions.”

~Henri Nouwen

“Peace is accepting today,
releasing yesterday,
and giving up the need to control tomorrow.”

~Lori Deschene

 

 

 

Christmas My Way

On By WendyIn Chronic Illness42 Comments

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.

christams-decor
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.

Mindfulness Monday 28 – Giving

On By WendyIn Chronic Illness7 Comments

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“Before giving, the mind of the giver is happy;
while giving, the mind of the giver is made peaceful;
and having given, the mind of the giver is uplifted.”

~ Buddha

“The most precious gift we can offer anyone is our attention.
When mindfulness embraces those we love, they will bloom like flowers.”

~Thich Nhat Hanh

Meniere’s Disease Update

On By WendyIn Chronic Illness, Meniere's Disease7 Comments
menieres-drunk-cartoon
cartoon source here

Over on Hearing Health and Technology Matters’ Dizziness Depot, Alan Desmond has been discussing Meniere’s Disease.  He published a 10 part series in 2012 on this subject but decided it was time for an update.  No it’s not going to take 10 parts.  Maybe half as many.  🙂

The first part discusses the use of Betahistine as a treatment.  Meniere’s Update #1  Betahistine.  Betahistine is frequently used in the UK but is not approved by the FDA for use in the US. There has been one important study that has shown that while harmless Betahistine it probably does little to treat Meniere’s.

The second part of the series focuses on Diet and Diuretics. There is a lot of good information in this section.  In the summary Desmond states “it appears the general sentiment is that it (a low sodium diet and diuretics) might help and it will do no harm.”

Part 3 discusses the use of the Meniette Device.  I had a guest write about her experience with the Meniette device, you can read about it here.  Desmond summarizes his write up saying, “the evidence keeps building that the Meniett device is a plausible idea, with little evidence of clinical effectiveness.”

Part 4 focuses on Endolymphatic Sac Surgery.  I had Endolymphatic Sac Decompression surgery, you can read about my experience here.  I was unfamiliar with some of what Desmond discusses in this section.  I found it very interesting.  I wish I had read it before I had my surgery.  As he said in the last paragraph,  “All of the procedures discussed have similar impact on control of vertigo symptoms, and that effect is not terribly different than the natural course of Meniere’s disease in patients that do not undergo any of the mentioned procedures.”

Part 4.5 Middle Ear Muscles and Meniere’s.  This part talks about something I’ve never heard of before.  It was mentioned in part 4, and it is expanded on here.  There is a procedure where you sever certain muscles in the middle ear to control Meniere’s symptoms.  You must read this part of the update to get a clear view of this procedure.  It’s very interesting.

Part 5, discusses the Natural Course of Meniere’s Disease.  So does it help to do destructive surgeries or would it be the same as the natural course of the disease?  If you look at percentages it’s about the same.  However, if you are having vertigo on a regular basis you are pretty desperate to do anything to stop it, so when a doctor tells you that a surgery may help, well you jump on it.  I know I did.  But I also know, in my case, that it didn’t really help in the long run.  If you have Meniere’s in one ear, the chances are your symptoms will greatly reduce in 2 years and will mostly go away in 8 years.  There is a small percentage where this is not the case, these people will continue to be symptomatic.  This does not include patients who are bilateral.

Meniere’s Update Finale – In the finale Desmond discusses the proposed causes of Meniere’s, and goes into detail on the migraine variant.

I also read a new study comparing steroid injections to gentamicin injections in controlling attacks of severe dizziness, and preserving hearing loss.  It found that steroid injections are equal in controlling vertigo without causing the hearing loss that gentamicin does.   I found this study interesting.  The study doesn’t mention that you may lose your balance function with gentamicin injections, it only mentions hearing loss as the destructive measure. Regardless, if intratympanic steroid injection are equal in controlling vertigo, then one would not need to resort to gentamicin injections.  This is good news for me, as the next step we planned to take is steroid injections, if it didn’t work we were going to talk about gentamicin (again, if you’ve been reading this blog, you know we’ve discussed it before).  This study changes that thought process.  I do not see the need to even discuss gentamicin if it will not control vertigo any better than steroid injections.

I think I’m caught up on all things Meniere’s for today.  I do think now might be a good time to give an update on me.  Recently I’ve been having a lot more vertigo and over all dizziness.  As the Summer went away so did my reprieve.  I may be talking to my doctor about steroid injections soon, but right now I’m handling things okay.  As I carry on, I’ll talk more about it.

How is everyone out there doing lately?  Check in with me.  🙂

 

Mindfulness Monday 27 – Anxiety

On By WendyIn Chronic Illness, Mindfulness4 Comments

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Sometimes the best thing you can do is
not think,
not wonder,
not imagine,
not obsess.
Just breathe,
and have faith
that everything will work out for the best.

~unknown

When you try to control everything,
you enjoy nothing.
Sometimes you just need to relax, breathe, let go,
and just live in the moment.

~ unknown

 

*Please note, all artwork on Picnic with Ants created and owned by Wendy Holcombe unless otherwise noted.

#HAWMC Day 30 – Health Activism Goals

On By WendyIn #HAWCM, Chronic Illness11 Comments

Today is Day 30 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

hawmc day 30.jpg

I’ll be absolutely honest, I don’t like to set goals.  Since I’ve been sick, setting goals always seems to lead to utter disappointment.  That doesn’t mean I don’t make plans, I do, but if they don’t come to fruition, I don’t get bent out of shape about it.  If I made a set goal to accomplish with my health activism I would feel bad if I couldn’t follow it through.  With this in mind I do have a few things I’ve been working on that I’d like to follow through on.

For the past six months I’ve been writing a post called Mindfulness Monday, it contains a couple of mindfulness quotes and an illustration created by me.  I’ve worked hard to make sure all the illustrations are created by me, even if I have to reach back and use things I created a while back.  I plan to keep this going.  I think nurturing the mind and spirit is just as important as nurturing the body.

Recently I’ve become more active on Twitter, I plan to keep growing this avenue of reaching out with my activism.  I’m getting more involved in Twitter chats and hope to be able to contribute more in the future.  (I really love intake.me‘s Patient Chats.)

I’m thinking of becoming an ambassador for VEDA (vestibular.org) however, I’m not sure I can follow through on all the requirements.  I’ve decided to do the requirements for a while before signing up, to make sure I can do it.  A kind of “try it out” first.  I think this will take the pressure off of me to be able to do it right from the start, and I won’t feel guilty if I can’t keep it up.

This past week has once again taught me that making plans is not something I can do lightly.  I’ve been having vertigo on and off a LOT the past week.  I’m proud of myself that I finished this blogging challenge.  I’m very proud of all that I’ve accomplished this week in spite of being stuck in a chair watching the world move around for most of the time.  (just going to the bathroom by myself is a major accomplishment, yes!!)

To sum up, this month I realized I’d like to get more involved in being a health activist, I’m not exactly sure what that means, but I am searching for just the right something.

I’m participated in WEGO’s #HAWMC, if you’d like to read more posts from this month 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 29 My favorite #HAWMC blogger post

On By WendyIn #HAWCM, Chronic IllnessLeave a comment

Today is Day 29 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Have you checked out fellow HA’s pieces for our HAWMC?
Choose one of your favorites and repost it to your blog.
Be sure to include a few sentences on why you love this piece!

There are so many great blog posts by bloggers contributing to WEGO’s Health Activist Writers Monthly Challenge (#HAWMC2016) I had a hard time picking just one.  I also had a very hard time going back and reading over all of them to pick the best one I could find.  You see I’ve been having vertigo a lot recently so completing this challenge has been a big challenge for me, but it looks like I’m going to do it!

This blog post by Julie, on her blog It’s just a bad day, not a bad life, is titled Dear Julie, An AVN Diagnosis.   I picked this post because I too had Avascular Necrosis.  I’m lucky that mine was taken care of with a hip replacement, but I know it could show up in other joints.  This letter explains AVN and other illnesses Julie has, and how she is persevering every day.

dear-julie-a-letter-to-myself-post-diagnosis

(below is a repost of Julie’s post.  To see the original please click on the title of the post, I follow Julie on her blog, It’s just a bad day, not a bad life, and on Twitter, she is awesome.)

Dear Julie – An AVN Diagnosis Letter

Avascular Necrosis. WTF?! Like, what the hell.

I didn’t even know bone could DIE?! THAT’S A THING?! WHATTTT!?

For the past few months, you KNEW something was wrong. Something was off. There was no reason you should have been in that much pain.

Yet, your healthcare team told you otherwise.

“Oh, you’ve just overdone it at therapy. Take these Percocet’s and rest for a week.”

“There’s nothing wrong with your knee, you’re just healing.”

“Just keep pushing through. Once you have your range of motion back your pain will subside.”

“Here’s a kenalog injection and a higher dose of pain pills. Come back in a week.”

BUT YOU KNEW BETTER! You KNEW there was something seriously wrong.

December 17th will be a date that you’ll never be able to get out of your mind. Today, when you crutched your way into that doctors appointment, I know you wished that something would show up on your scans. Last week when you had your bone scan done, the technician told you you “lit up like a Christmas tree” (which you loved the holiday reference btw. It was kinda perfect), you knew you’d get answers today.

But the answer you received was NOT the answer you thought.

You anticipated him saying that your ACL finally finished tearing apart or that there was a complication from your last surgery. But that wasn’t even remotely close to the case.

You’ll always remember the look on your doctor’s face when he walked into your examination room.

“Your bone is dead. It’s called avascular necrosis. I know what it is, I’ve seen it before. But I don’t know how to treat it and I don’t really know where to send you…” will echo through your brain for YEARS to come.

You mind will race and question the fact that he told you you’d probably need a knee replacement. Then you’ll think about how he said you can only get 2 in your life. . . and that will spiral into you crying about how when you’re 60 you probably won’t be able to walk.

Your Dad will joke about how once you’re 60 you’ll probably be able to get avatar legs. But it won’t make you feel any better.

Tonight you’ll spend your evening crying.

Crying about how you may not walk again. Crying how you’ll probably need a knee replacement. Crying how your pain IS valid and that there IS something seriously wrong. Crying because you have no idea where to turn.

And while you’re crying, your parents will be crying too.

Your mom will be upset because she can’t wrap her brain around this diagnosis and your dad will be in shock with the news and wish you did something sooner.

You’re 27 years old and 2 parts of your bone are DEAD. It’s going to take some time for you and your family to wrap your heads around it. BE PATIENT.

I know you’re in pain. So much pain that you’re unable to sleep. You’re exhausted. You’re worn down. You’re a wreck.

But, you don’t need to be a hero when it comes to dealing with this pain.

Your parents will ask you numerous times if they should take you to the hospital to help your pain. You’ll pass it off as you’re fine.

But you’re not fine. Take them up on that offer and GO.

Picture from the first hospital room I was in during my week long stay. Dear Julie, A Letter to myself after receiving the diagnosis of Avascular Necrosis, Psoriatic Arthritis, Complex Regional Pain Syndrome itsjustabadday.comI know you want to celebrate Christmas and enjoy it, but you’re not going to enjoy the day. You’re going to end up passed out for the majority of it because you finally caved and took high doses of pain pills. You’re going to end up going to the ER early in the morning the day after Christmas because you’ve hit a breaking point.

Don’t wait – go earlier.

You’ll spend a week in the hospital and you’ll start to get SOME answers. You’ll receive 2 more diagnosis – Psoriatic Arthritis (officially, after having first heard it back when you were a teenager) and Complex Regional Pain Syndrome. As you leave the hospital, you’ll think that your AVN is the thing you need to treat first. . . but it’s not. You need to take care of YOU and calm the storm in your body before you even find a solution for your knee.

Oh, and also… Just to set realistic expectations. Don’t plan on counting on your orthopedic surgeon. He’ll provide you with no helpand will just frustrate you more than you need. Your Dad will take it pretty hard, but just know, in the end, you don’t end up needing this doctor. He actually does you a favor by stepping aside because it forces you to go out and find the best possible solution for YOU.

Put on your armor, because it’s going to be a battle for the next few years. You’ll face injections, pills on pills, stomach issues which make you unable to eat for months, nerve blocks, anxiety, depression, melanoma, rejection from over 29 different health providers – just to name a few of those battles.

But guess what, you’re going to be fine.

Actually, scratch that.

You’re going to be more than fine – you’re going to come out on TOP.

You’ll end up changing your whole life to manage your conditions.

You’ll end up having your path redirected to be exactly where you should be.

And, you’ll end up blossoming into the person that you’ve always wanted to become.

You’ll never define yourself by the diagnoses that you receive in December 2012, but you’ll use them to help fuel your passion, motivation and to help others.

I love you and you’re strong.

You’re going to get through this. One day at a time.

SPOILER ALERT: In a few Christmases time, you’ll get to film this video and be well on your way to recovery from your Avascular Necrosis. And, you’ll end up speaking at an FDA hearing regarding stem cells because of your AVN! GRAB THE TISSUES!

Wishing You A Pain Free Day!

Julie Cerrone | Spoonie, Autoimmune Warrior, Certified Holistic Health Coach, DoTerra Wellness Advocate, 200 RYT Trainee, Reiki 1, Nutrition Geek, ePatient Advocate, IT Consultant, Pittsburgh Based Practitioner Living the Chronic Life

 

 

 

This post was in response to the WEGO Health HAWMC prompt:

Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.”

 

 

I’m participating in WEGO’s #HAWMC, 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 28 – 5 Challenges & 5 Victories

On By WendyIn Chronic Illness11 Comments

Today is Day 28 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

5 Challenges & 5 Small Victories.
Make a list of the 5 most difficult parts of your health focus.
Make another top 5 list for the little, good things (small victories) that keep you going.

5 Challenges – 5 most difficult parts of my health focus:

fear

  1. FEAR- My number one challenge is Fear.  I’m afraid of the vertigo.  Of course I’m afraid when I’m having it, but I’m constantly afraid I will have it even when I’m not.  I’m afraid of the pain, the migraine pain, the arthritis pain, all of the pain.  I’m afraid the pain will get worse and I won’t have any way to manage it.  I’m working through some stuff in my past and I’m afraid of what I’ll find out.  I’m afraid of more than I like to admit, but I’m working hard to be less afraid.
  2. Finding Doctors – I’ve had a difficult time finding doctors that treat Meniere’s Disease.  Even if they say they do, they often have little knowledge of the disease.  It’s also difficult to find a doctor who knows a lot about migraines.  It has been difficult to find good doctors to treat me.  In each field I’ve felt I’ve found a good doctor, only to be hit with the “I can’t do anything else” line soon.  It is a definite challenge to find a good doctor.
  3. Freedom taken away – Isolation, is a big challenge.  Since I can’t drive, I have to depend on my husband to get me out of the house, this is a difficult thing sometimes.  He works hard and when he is at home sometimes he has things to do here, or he just wants to relax, he doesn’t need to be taking me out all the time.  Plus I have to get over my fear of having vertigo in public before I can go out at all.   My freedom isn’t just taken away because I can’t go out, it’s also taken away at home.  Because of my illness doing certain things are not only difficult, they can be dangerous.  I can no longer cook because it’s dangerous.  I can’t take a bath or shower by myself, because it’s too dangerous.  It’s very hard for me to do any housework, sometimes because of the danger, sometimes because of the fatigue.
  4. Friends – It is a challenge to keep friends, and to make new friends.  Many of the friends I had before I became ill are not in my life as much now.  (various reasons, but let’s face it, I’m a different person.)  Making new friends is a huge challenge.  (I wrote a post about this, Making Friends?.
  5. Food – Food has been a challenge for a long time.  I have had GI (Gastrointestinal) issues for as long as I can remember.  Then I found out that I have Fructose Malabsorption, IBS, and a wheat allergy.  I have a specific diet I must follow so I won’t get sick.  This makes it hard for me to eat out, or to travel.  It’s hard to explain to people, “oh, I’m sorry I can’t eat that lovely meal you prepared”  It used to be hard to explain why I can’t eat wheat, now it’s really hard explaining why I can’t eat onions, apples, and all kinds of things.

5 small victories – list of 5 little, good things that keep you going.

wedding-love

  1. Successful marriage – This isn’t a small thing, this is a HUGE thing, but it’s what helps keep me going.  My husband and I both agree when we think about it we don’t feel that we work hard on our marriage, it’s just something that comes natural, but that isn’t exactly true.  We do work hard, it’s just something we want to do, so it doesn’t seem like work.  When I first started losing my independence it was very hard on our relationship.  I shut him out and he didn’t know how to talk to me.  We decided to see a therapist.  It was there that we learned to communicate again, and we both have a better understanding of how to deal with my illnesses.  If I could give one bit of advice to any couple going through one partner becoming ill, it would be to get a therapist. It might just make your marriage better.  I know mine is.
  2. Days I can deal with vertigo alone – this is a big victory for me.  When I start to have vertigo I panic because I never know how bad it will be.  See number 1 under challenges, and you will know, I’m afraid!  So going through a vertigo attack without help is a huge victory for me.  I’ve done it a few times, where I’ll have vertigo when hubby is at work and I don’t callv him home.  This doesn’t happen often, so this is a small victory, but it’s a big victory really, every time it happens.
  3. Making new friends – I’ve made many new friends on line.  I have a hard time meeting new people in person, but I’ve found that I can meet some wonderful people on line.  I’ve made some wonderful friends through my blog.  I have one friend that I met through my blog about 7 years ago now, our friendship has transcended the blogosphere.  We email, text, and send packages to each other.  We have called each other, but I can’t really talk on the phone.  One day I hope to meet her.  I think this is a pretty big victory, to go from losing friends to gaining such a deep friendship with someone I’ve never met in person.
  4. Getting out of the house – There are days I can fight through the fear and get out of the house with minimal distress.  When I’m having a good day we can go out and do normal things.  Those times are small victories, they get me through until the next time.  They remind me that I can do it.
  5. Diet – Eating my restrictive diet has made it so I can eat with minimal to no GI distress.  It may be challenging to eat this diet, but I think it’s a small victory, actually a big victory, to be able to eat without GI distress.

 

I wrote a similar post to this one here.

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