Category: Chronic Illness

Endolymphatic Sac Surgery – Recovery Day 2 – 3

On By WendyIn Chronic Illness, Meniere's Disease11 Comments

Yesterday I woke with much more swelling and pain.  Still no vertigo. But started getting pretty dizzy, after taking pain meds.  There is such a fine line between taking enough so I can tolerate the pain, and taking too much to cause vertigo.  Often the  vertigo will come before the pain is under control.  I really hate having to take pain medication.  They make me feel drunk, and getting drunk when you have vertigo issues is not a good idea.

Had a great visit with a couple of friends last night.  It was so good to see them, I haven’t seen them in a long time, but we keep up regularly through instant messaging and email.  When they first got here, I was feeling pretty rough, I wasn’t sure I was going to be able to really enjoy the visit.  But I knew these friends would understand.

When they first arrived I had a little bite to eat and took a pain pill, my first in about 9 hours.  (I was really very hesitant after the way I was feeling that morning.  I do not like the drunk feeling.)  Luckily, the pain got better, and the visit was very nice!  Plus, my friend brought me a bunch of clothes to try.  (as I think I’ve mentioned before, I’ve gained a ton of weight this year, and I just don’t have anything to wear.)  I haven’t been able to go through them yet, but I’m just thrilled I will have something to wear that doesn’t feel way too tight.

I had a rough time going to sleep,  but seemed to sleep better once I finally drifted off.

Then I woke up this morning…what a difference.  I started to lift my head to get up to go to the bathroom, and the world started moving.  I put my head back down, things calmed, and I tried again…same results.  I decided to wake up Stuart to have him help me to the bathroom.  Again, I tried to get up, with his help this time, but the world went crazy!!!  I laid back down, and things still were spinning out of control!  Thankfully, it didn’t last long, but every time I tried to lift my head the same thing would happen.  I don’t know how we managed it but we finally got me to the bathroom…ahh…relief.  Getting back to the bed was rough, but once I was lying down again, things were much more stable.

The swelling around my ear was worse, but no fever,  no redness, and it’s not hot to the touch.  Thank goodness.

I decided to lay with my left ear down, to see if having the fluid drain some would help.  I could hear it gurgle, and feel it, but very little came out.  I slept for a while.  Then I had to go to the bathroom again.  Ugh.  I tried and tried, and finally I decided it could wait.  I feel asleep again.  Stuart decided to call the ENT on call at Duke, just to make sure this swelling issue wasn’t something to be concerned about.  She said, she thinks it’s just post-op swelling, she suggested ice at first, but we found out fast last time, ice on an open hole to the vestibular system is not a good idea. (Instant Vertigo!)  She also suggested elevating my head.  We slowly did this, first we got a thicker pillow, then added a pillow under my back (so my neck wouldn’t be at a severe angle), then added another pillow…now I’m at a slight incline, and the swelling has gone down quite a bit.  I’m still having bouts of spinning, and sharp pains shooting through my head.  Today has not been a great day.

This is so different from the first surgery.  I didn’t have this severe swelling.  (It has been swollen all around my ear, down my neck, sticking out about an inch.)  My ear drained well the first time.  I had a tube in my right ear, and it drained a lot.  I also have a tube in the left ear, and I know it’s open because I sneezed yesterday and felt the rush of air blow through it, but very minimal drainage.  I keep feeling fluid moving around in my ear, but only a very tiny amount is coming out.  I did have some very red blood come out this morning, not a lot, but it’s not that clear gooey discharge I had the first time.  I keep thinking, if my ear would just drain out, then I’d feel better.

The pain from the first surgery was much more intense after the feeling in my ear came back.  The damage to the cartilage was intense.   Question now is, if I’m this bad off now, what’s it going to be like when the feeling in the ear comes back?

I’ve started writing this post about mid-day yesterday, now it’s late Sunday night, and I’m just wrapping it up.

To sum things up, I feel horrible.  Today has been very uncomfortable.  I feel like I’m burning up with fever, but if you take my temperature I’m not.  If I move my head, the world moves….sometimes much, much worse than other times.

(Please forgive me, but I did not reread this post for errors.  I simply don’t feel well enough.  No picture either?  I really must not be feeling like myself.)

Tomorrow I should be posting for the next PFAM blog carnival hosted by Sharon over at Bed, Body and Beyond, submissions are due tomorrow by midnight, in whatever time zone you happen to be in!  (Luckily, I wrote most of my entry before the surgery, so I just have to touch it up a bit.)

The topic?  Why do we write?  Please think about sending in your own submission.  Sharon is great, and if you can’t make it by midnight tomorrow, drop her a line, she can probably give you a little more time.  The carnival will go up on her blog on the 7th.  So check out her call for submissions here: http://sharonwachsler.blogspot.com/2011/10/call-for-subs-pfam-blog-carnival.html

Surgery Over – Day 1 recovery

On By WendyIn Chronic Illness14 Comments
Getting ready to go home, after a long day!

Surgery went well.  I had an Endolymphatic Sac Enhancement Surgery.  After much searching, I found that different doctors do different surgeries and call it the same thing.  Basically had a Mastoidectomy.  (surgical removal of the mastoid process) with extra stuff.  Dr. Kaylie removes more bone so the sac can decompress (on its own) and will have more room to expand.  Leaving the endolymphatic sac and dura with no bone covering it.  However, most of this is under your ear, so it’s pretty protected.

Hopefully, this surgery will stop 70% – 90% of the vertigo caused by this ear.  I had this surgery on my right ear in April of 2010, it appeared to work.  But since I’m bilateral, sometimes it was hard to tell if my vertigo attacks were caused by my right or left ear.  Sometimes I could really tell, but since my hearing has diminished so much, and the tinnitus has gotten so much worse all the time, it makes it harder to distinguish.

I got home about 7:30pm.  Had to be at the hospital at 11:30am, surgery was to begin at 2pm, but it was delayed  until after 3pm because they had to give me a pregnancy test.  I told them there was no way I was pregnant even explained that because of my hip issues, we haven’t had “intercourse” in a very long time.  They asked again, how I could be sure I wasn’t pregnant.  I told them, “let me put it this way, there has not been a penis in my body for months, because of my hip pain, we get creative, but we haven’t had intercourse.  And I haven’t skipped my period.”  (they considered giving me a test anyway, but I peed right before they took me back, and since I hadn’t drunk anything for about 14 hours, there wasn’t any to come out.)  The nurses accepted this, but come to find out, if you are of child-bearing years you must have this test, hospital policy.  So I squeezed out some urine for them….and we waited….and waited for the lab to do the test.  So that delayed the surgery, luckily I was his last for the day so it didn’t put anyone behind.

When they decided I just had to have this test, Stuart joked, “Well, if you are giving birth to the messiah we want to make sure we don’t cause him to have birth defects.”  Only, Stuart would come up with that one!

Before leaving the hospital they did have my pain under control, but I was hurting quite a bit shortly after we got home.  I was sick to my stomach, (lot’s of anti-nausea medication), and pretty dizzy.  I slept some, but I woke a lot because of the pain.  I don’t think I took enough pain medication until about 4am.  Finally, it started to work.  I’d wake up in a few hours, and take half of a pain pill, this seems to have kept things under control.  One thing that was odd, I had this horrible taste in my mouth I just couldn’t get rid of.  Tasted like plastic and medicine.  I swear I tasted that same taste as they were putting me under.  I don’t remember this ever happening before.  It was gross.  I’m also having some crazy post nasal drip, and a cough.  Of course, my throat is sore from the breathing tube, but it’s better today too.

That big cup they put on my ear, filled with gauze and stuff, I swear it causes more pain than the actual surgery.  There was too much gauze and it pressed on my ear.  When you have a hole drilled in your head about the size of a 50 cent piece, you don’t really want to feel something pressing on it.  Thankfully, we got to take it off today, I removed all the stuff from inside, ewww, and just put a little packing back in, now it feels better, and I can sleep with out the worry of rolling over on that ear.  They said I could just take it off, but the ear will drain for some time.

I have a tube in that ear, so the drainage comes out the ear a lot.  This is actually an advantage.  My Eustachian tube is very sore, so I know it’s handling a lot of drainage too.  If I didn’t have the tube I think I’d have a much harder time with vertigo and pain.

My main nurse during pre-op, Janice, was amazing.  She was so caring, compassionate, and professional all at the same time.  She looked pained to hear what I had been going through.  I told her one of my mottos, “Life isn’t what I expected, so I’m just changing my expectations”.  I didn’t say this to be profound our anything, I said it to let her know, I’m OK with things.  Yeah, it’s hard, not what I expected, but I’ll make the most of what I have.  She was really stuck by this.  She said everyone could learn from that, so many people get caught up in the what if’s and can’t get past it to see what they still can be.  Right before I went back, she patted me on the arm, wished me the best, and said that she was going to remember to change her expectations as things change.

I was so humbled, and touched.

They had a hard time getting in an IV, one nurse tried, and even though she gave me lidocaine, it really hurt and it wouldn’t go all the way in.  Janice came in and took over, she had a hard time finding a vein, I remember telling her, I wished I could help.  She told me I was such a good patient.  She soon found a vein, and I didn’t even feel her stick me!  Amazing.   (about IV’s, I had another one in my other arm when I work from the surgery…wonder why?  I’m very glad I was out for that one, it was inside my wrist, a very painful place to get an IV.)

Everyone was very nice to me, and very professional, but Janice was exceptional.

Now, I’m getting tired, and a bit nauseous.  I’m thinking all this drainage, and post nasal drip, is making me sick to my stomach.

think I will take a nap.

For now, all is well…I may be posting a lot during my recovery.  I want to keep up with all my symptoms, so I may get a bit boring.  I thought of keeping a written journal of it, or on my calendar, but I know I’m much more likely to come here, and talk.

Thank you all for so much support!  You cannot imagine how much it means to me.

Helping Symptoms with Hypnosis

On By WendyIn Chronic Illness13 Comments
Hypnotic Healing by Judith Westerfield - image stolen from her website.

I asked my friend Judy from Creativity to the Max if she thought some of her Hypnotic Healing CD’s could help me calm down during an attack.  I’ve been trying chanting and visualization techniques, which seemed to help a little, but I wanted more!!  : )

To give a little background, so you don’t think I just asked some quack about hypnosis tapes.  Judith Westerfield is a licensed Marriage, Family Therapist, and Certified Clinical Hypnosis and Guide Imagery Therapist.  You can read more about her here: http://judithwesterfield.wordpress.com/judy-judith/

She was kind enough to send me 3 CD’s to see if they would work for me.  I’m very pleased to say they help a lot.  Whenever I start to feel the anxiety building, and the fear that an attack is imminent, I take my meds, and hook my hearing aid up to the computer so I can hear Judith’s CD’s.

Since I started doing this, my attacks have been much milder, even on the day last week when I was spinning, full out rotational vertigo watching the room just spin.  It wasn’t as bad.  I didn’t even throw up, a miracle in itself.  I don’t know if the not throwing up part can be contributed to the CD, we were pumping in a lot of Phenergan, but I know the CD really helped me stay calm, focused, and relaxed.  Yes, I said relaxed.  (as relaxed as you can be with the world moving all around you.  But I have to say, I was more relaxed than I have been during a vertigo attack.)

The three CD’s she sent were Healing Your Body – Healing Waters, Heart to Heart with Love, and How to Listen so your Symptoms will Talk – How to Talk so your Symptoms will Listen.  I have found the Body, and Love CD’s to be invaluable.   I’m having trouble talking with my symptoms, I think deep inside, I don’t want to talk to or listen to them.  I just want them to go away, and I know they won’t so I don’t want to talk to them   I think of them more like an unwanted guest you just ignore so they will go away.  I need to work on that.

My favorite is Healing Your Body – Healing Waters.  I love to use water as a relaxation guide.  Another of my dearest friends would say it’s because my astrological sign is Cancer, a water sign.  I can just hear her, “Of course, you need water around you!  Let it feed your soul, you need it.”  (I love you Kym)  The sound of water makes me feel tranquil.  I’m simply more at peace when I’m close to water.  So having a visual guide that centers around water, has been very helpful for me.   The Heart to Heart with Love CD, is helping me learn more compassion for myself and others.  I need to love myself, as I do others.  I can’t continue to criticize myself for being ill, and not being able to do things.  I would never allow anyone to say those things about a friend of mine, why would I tolerate me saying it about myself?

The CD’s are meant to be listened to often, in a quiet place, a type of meditative feel.  I do this, but I also just have them on listening when I’m on the computer and or reading.  Even when I’m not concentrating on the words, the calm, soothing nature of the CD reduces my anxiety, and creates an all over sense of well-being.

I talked to my therapist about these, and she thinks they are wonderful.  She has made hypnotic recordings for some of her patients, and is thrilled I’m using this as a tool to help with my anxiety, and be more at ease with my symptoms.

I’ve been looking over the CD’s Judith offers and I want so many of them!  I especially want Healing your Mind, Pain Relief; Transforming Stress and Anxiety into Calm and Comfort, Weight Control, and I really wish I had the Preparing for Surgery CD right now, but my surgery date was scheduled so fast I couldn’t order it and get it in time.  Judith also creates personal CD’s focusing on your own special needs and using your own focal imagery.  I’m seriously thinking about getting her to create one for me.

I’ve listened to some recording that were supposed to heal through self-hypnosis, but they didn’t really work.  I don’t know if it was my mindset at the time, the voice of the person recording it, or if they were just junk.  So, I had my doubts about how well these would work.  I’m very pleasantly surprised.

For more information on Hypnosis and Interactive Guided Imagery(sm) see Judith’s web-site:

www.HypnosistotheMax.com

Yes, I still  have vertigo, I still have symptoms, but finding aids like this have made it easier to deal with them.

As everyone with Meniere’s knows, we may not have attacks every day, but we live with it every day.  Some days the symptoms may be minimal, but the fear is always there, the unknowing….when will it happen next.  Will I be home and safe?  Will I be driving?  Will I fall and get hurt?  Will I be in a crowded area?  How bad with the next attack be?

We live with PTSD (Post Tramatic Stress Disorder).  I have one doctor that describes what we go through as being on the front lines during war.  Soliders knows they will be under fire, at some point, but they never know when.   This is a disease of Random Punishment.  We have to use all the tools we have to keep ourselves sane, and safe.

I found these CD’s and Toni Bernhard’s book How to Be Sick a great help.  They both address my issues, and help me accept and control the situation.  I don’t feel as out of control.  I may not be able to control an attack, but I can control my life around them.  I don’t have to live shell-shocked all the time.

Have you found anything that works for you?  Anything that makes coping with your illness easier?

Please share, we all need to find our “happy place” or at least a happier place some times.  We can all use some help getting there sometimes too.

Suicide because of Tinnitus

On By WendyIn Chronic Illness8 Comments

A friend sent me this story, he has Meniere’s too, it’s very sad, but shows just how severe Tinnitus can be.

Rock Fan Kills Himself After Concert Left Him With Tinnitus

Published November 18, 2011

A British rock music fan stabbed himself to death after a night out watching U.S. band Them Crooked Vultures left him with severe tinnitus, a coroner’s investigation reported.

Robert McIndoe, 52, was unable to sleep for three months after seeing the band – made up of former band members from Led Zeppelin, Foo Fighters and Queens of the Stone Age – at the Brixton Academy, south London.

His psychiatrist, Dr. Helen Stinson, said, “He accepted death as a side-effect of stopping the noise,” the Daily Mirror reported Friday.

The inquest heard he tried to commit suicide by taking an overdose at his home in south London in the same month that he fatally stabbed himself.

McIndoe’s wife Shirley said, “He just wanted not to be suffering.”

Tinnitus is characterized by a constant ringing in the ears, with the noise coming from inside the body rather than an outside source.

Read more: http://www.foxnews.com/health/2011/11/18/rock-fan-kills-himself-after-concert-left-him-with-tinnitus/?intcmp=sem_outloud#ixzz1esCeS0K

image from http://www.dreamstime.com (free stock photos)

I know I’ve had tinnitus so severe that it would have driven me crazy if it had lasted for long periods of time.  Luckily, it usually only last for a day, perhaps two.

I feel so bad for this man.  It must have been so traumatic to have this hit him to this degree all of a sudden.  My tinnitus is usually a low roar, and has only recently raised to the point that I just can’t stand it for short periods of time.

I know so many people who went (or go) to very loud concerts, or shot guns, ect…. with no ear protection.  After the first concert I went to I would always wear ear plugs.  I could still hear the music fine, but I didn’t have the ringing in my ears for days, ect.  Yes, I have tinnitus, because of Meniere’s, not because I didn’t take precautions when I was around loud noises.  People, especially young people, need to understand how they can permanently damage their hearing by loud music…ect.

Be sure that your friends and children know how easy it is to damage their hearing.

May none of us ever have tinnitus so bad we would consider something like this.

Surgery Scheduled

On By WendyIn Chronic Illness21 Comments

Just a very quick post.

I’m having the endolymphatic enhancement surgery on my left ear on December 1st.

Hopefully, this will either stop the vertigo, or slow it way down.

I know I’m up for a rough recovery.  It’s not a fun surgery, but it seemed to help the right ear a lot.

will post more soon…

Migraines have been bad today. Better after much medication but now I’m tired.

Just wanted to let you know.

 

 

How to deal with one more thing? PFAM blog carnival

On By WendyIn Chronic Illness7 Comments
Adding One More thing...

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

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

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

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

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

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

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

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

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

My advice?

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

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

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

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

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

Over did it, and Just Saying “No” – my answer to the holidays.

On By WendyIn Chronic Illness, Meniere's Disease7 Comments
REST by W.Holcombe.

**this post was started on Wednesday evening, finished Thursday morning**

Yes, I had a great day earlier this week…Monday I think it was, things are all a blur now, I had a beautiful day.

After my beautiful day, I hurt so terribly that night.  Every muscle, and joint ached.  I took a very hot bath with Epsom Salts, like my massage therapist tells me too.  It helped, but then I got all woosey and dizzy when I got out of the tub.  Change in temperatures was too much for my head.  (I tried to do it gradually, but it didn’t work out.)  Luckily the dizziness subsided, but I had a very hard time sleeping because of the pain.

The next day was an in the bed day.  Just one big ache, and the tinnitus was yelling!  So I just relaxed, was on the computer for a while, read for a while, and drew for a while…made a lovely butterfly, I’ll share it soon.

Today, I awoke feeling better.  I got up, went downstairs and started to make my own breakfast.  Then I started to feel a bit unsteady and turned it over to Stuart, didn’t think I should be using the stove.

Twice today I had an attack!  However, they didn’t escalate to the OMG I’m going to die while retching my guts out, type of attack.  They both came on fast, and we worked fast getting the meds in me.  Stuart got everything prepared, but it calmed down.  On both occasions, my head started to spin, I got very hot, and my stomach started to do flip-flops.  I do remember saying earlier in the day that I felt like I had a nervous stomach, Stuart asked what that meant.  I explained, “I feel like I used to when I was about to take a big test, or a date was late picking me up…that kind of thing.”  He smiled at the date thing, but hey, I’ve being stood up is a horrible feeling.  However, that passed, I felt alright.  Then a bit later, I was oh so sick.  I wonder if the “nervous” stomach was a clue?  I’ll try to pay more attention to the next time that happens.

**added to post Thursday morning**  I didn’t have to wait long.  I tried to get to sleep a little early last night, finally around midnight I drifted off, and about 6:30am I was dreaming I was spinning, and woke up to the world in a full spin.  This attack was already in full-blown nastiness before I could move my head to get meds in me.  It didn’t last long, thank goodness.  And I will spare you all the details this time.  One thing that continues to linger with me about it, is my headache.  I slept a few hours, but my head hurts so much.  I finally felt I could keep something down long to eat a little, just so I could take a pain pill.  Right now, my head still hurts, and my stomach hurts….what a great way to start the day.

I don’t understand it.  3 attacks in less than 24 hours?  It’s such a turn around from just a few months ago.  Do I continue to try to get back to that with Dr. Gray?  Or do I push for a different treatment?  But if I get a different treatment, how does that affect my low cerebrospinal fluid pressure?  So many questions, and some how, I don’t think I’m going to get many straight answers.  I see Dr. Kaylie next week, and Dr. Gray on Dec. 5th, we’ll see what happens.  I think I’m going to get a lot of , “it’s up to you”, but I really need some advice.  I hope they won’t let me down, and I really hope they will work together on this.  What will I do if one suggest one treatment and the other suggest something else?  *OK, my mind is officially off-line right now*

I planned to do a post on how to better prepare ourselves for the holidays.  You know, trying to reduce the stress of the season.  I came up with a fool-proof plan for me.  I’m just not going to do it this year.  Yes, Stuart and I may do a little bit here at home just for us, but for the most part, I’m just saying “No”.

I can’t go to parties right now.  The noise makes enjoying myself impossible, and I feel very isolated.  Since Stuart just lost his job, we can’t give presents like we normally do.   We really need to be on a tight budget, who knows how long this will last.  Hopefully, not long, but we need to be prepared.  Plus, I simply don’t have the energy to do it this year.  I’m also terrified of having an attack at someone’s party.  Can you imagine?

I do think I will send out cards.  I want to send some people personalized letters that explain why I’m AWOL this holiday season.  Explain more about my illness, and stuff like that.  I think a personal letter will help people understand just how personal this is, and how it personally affects our relationship.  (another tip from Toni Bernhard, from her blog in Psychology Today, “Turning Straw Into Gold”.)

I still really need to work on learning how to know when I’m doing too much.  I don’t like having the fall out after a good day.  My friend Rita, over at Soul’s Comfort Corner , gave her secret, “The only thing that helps me is using a timer. Otherwise when I am having a good day I inevitably overdo it. If I limit my sessions to 45-60 minutes and spread them out over the day I can “usually” do something almost every day even if I am only good for one session on a bad day…..”  What a great idea!  I’ll be trying this one, as soon as I feel I can move.

I hope everyone has a wonderful holiday season.  I’ve read a few articles that talk about how to make it easier on people with chronic illnesses.  The biggest one is to know how to limit yourself.  You don’t have to be super person, do what you can, and don’t beat yourself up when you can’t do something.  There are lot’s of hints, but I felt that was the biggest thing.  Take your time, and enjoy yourself, don’t push yourself too hard.  Wouldn’t you rather do less and really enjoy it, or do too much and be in agony?

We all know I have a very hard time with knowing how to pace myself, so I’m just bowing out this year.  We don’t do a lot anyway, we don’t have family close, or a close family, so this won’t be that hard.  I hope.  I really hope I don’t get depressed because I feel left out.  I want to feel joy that my friends can have a good time and enjoy themselves, even if I can’t be there too.  (of course, without me there, will they really be able to have a good time??)  hahahaha

Seriously, I’ve been reading Toni Bernhard’s book, How to Be Sick, and she talks about feeling joy in the joy of others.  This is something I really want to work on.  She mentions how easy it is for our emotions to turn to envy, and I know I feel that way towards some people, and some things.  I want to stop that, and feel joy that others have the opportunity to do things I can’t.  (Thinking, this will merit its own post.)

Here’s the link to a couple of Toni’s blog post I think you might find very interesting.  The first is a post about Heading off Holiday Stress, the second is How to turn Disappointment into Contentment.  I think both are very useful for making the holidays easier.

Oh, What a Day!

On By WendyIn Chronic Illness7 Comments
by Wendy Holcombe (created on Photoshop)

Today was absolutely beautiful, and I woke up without a headache…(meaning a little bit of a headache, like normal, but no where near like I’ve been having lately…yes, I always have a headache, sometimes it’s just much, much worse than other days.)

The weather was gorgeous, in the low 70’s (F), with a slight breeze.  The leaves are starting to fall off the trees.  I took my lunch out on the back porch and enjoyed the sun and warmth.  There was a gust of wind and a flurry of leaves blew over head, it reminded me of a scene from Winnie the Pooh’s Blustery Day, however, my day was not that blustery.  I had a giggle.

We decided since I was having such a good day, we would go somewhere.  We went to the little mall near our place, and bought Stuart 2 new ties for him to wear to interviews.  They are a bit bold, and show more of his personality.  I think they show confidence!  I hope the people he interviews with also thinks so.  (today was Stuart’s last day of work, just a couple of hours really, turned in his computer and told them where he left off.  The owner said he felt so bad, but he had realized if they had one bad month they would be in trouble.  They have decided to put the project Stuart was working on, on hold…so no reason for Stuart to be there.  Stuart is so great about it.  I think it’s the Buddhist in him, I’m not as philosophical…but I’m trying.)

Today, we didn’t think too much about that!  We walked the mall, window shopping.  Then we needed to go by Wal-Mart to pick up a couple of things, yes, I don’t really like shopping at Wal-Mart either but it’s 1 mile from our house, so convenience sometimes wins.  Unfortunately, I really used up most my energy in the mall, and shouldn’t have gone to Wal-Mart.  We stayed there much longer than I should have.  By the time I got home, things were spinning a bit, especially if I moved my head too fast.  I bent down to feel the dog, and the world when Whoosh!  I’ve been lying down since then.

I had a great day!  Lived it to the fullest.  (yes, going to the store is living it up for me.)  However, I really need to learn where my cut off point is.  I push myself beyond my limit way too often.  If I feel good, I take advantage of it.  Hopefully, I won’t be paying for it tomorrow.

Right now, my hip hurts, my back hurts, my tail bone hurts, my head is starting to hurt (worse), and I’m very off-balance.  Think I over did it?  Yeah, me too.

So how do you learn what’s enough?  Often I don’t feel that tired, or hurt that much, until I stop.  Do you know what your limits are?

With the holidays coming up, I really need to figure this out.  Right now, I’m thinking, we won’t be going to any parties.  We may try to have a few people over to our house  We think it would be better in my controlled environment, I can go lie down if I need to.  Or I can get away from noise if I need to.

Thanks for any advice.

Think I’ll be posting more about how to handle the holidays soon.

Gratitude

On By WendyIn Chronic Illness, Meniere's Disease10 Comments
image courtesy of sodahead.com

This post is for the Chronic Babe Blog Carnival all about Gratitude.

I’ve been thinking a lot about this lately.  Everyone here knows the people I’m grateful for…my dear blogging friends, the friends who have stuck by me…and most of all my precious husband.

I could write an entire blog post on how grateful I am to my husband for all he does, but I think I gush about him enough.

One of the biggest things I’m grateful for is this blog!  Picnic with Ants…gives me a place to get out my emotions, to know I’m not alone, to work out problems, to make other’s aware of what my Ant’s are…especially Meniere’s Disease.  When I started this blog I was fighting my illnesses tooth and nail.  Thanks to my friends on here, I’ve learned to accept them as a part of me.  No they don’t define me, but they are a part of me, and I will learn to walk with them.  That in no way means I’ve given up, it simply means I accept this time in my life.

This is a safe place for me.  A place where I can be myself, and if people don’t like it they don’t have to read it, however, I’ve very grateful for those of you who do.

At times I realize I’m grateful to be in this place I am right now.  In a way, yes, I’m grateful for this disease, we call Meniere’s…and my list of other conditions.

I have learned so much during my struggles with chronic illnesses.  I’ve always been a compassionate person, but I think I’m more compassionate.

I notice things I didn’t really see before.  I’m grateful to my doctors who are trying everything to give me some relief.  To the staff at Duke for all the things they do that I don’t even see.  I’m grateful for the orderly who was so kind to me while wheeling me to the recovery room, and stopped by later just to make sure I was alright.  I’m grateful to the guy at my grocery store who knows I’m hearing impaired and will make sure he looks straight at me when he talks and enunciates his words so I can read his lips if I can’t hear what he’s saying.  I’m grateful for the technology that is available today,my computer, my hearing aid…and possibly in the future a cochlear implant.  All different technologies, but all help me communicate so much better than I could without them.

I’m also grateful

  • I can still appreciate the seasons
  • I can still read and escape in a book.
  • I can research doctors, illnesses, treatments…just think a few years ago we couldn’t do that as easily as we can now.
  • I have doctors who don’t mind questions I have, are thrilled that I’ve researched my condition, and who genuinely care.
  • I have health insurance…and that bothers me, it just shouldn’t matter…but it does.
  • that things continue to change.  One day I may be very depressed and blue, but the next day I may see the sun and find the clouds that were so thick over my head are clearing.
  • For my dog and cat…especially my dog.  She has been with me for 18 years, she’s now 19.  A year and 4 months ago we were told she had a very aggressive form of bladder cancer, they couldn’t operate, and she would last at most another year, probably much less.  She doesn’t show any signs of slowing down.  I guess no one told her she was sick.  : )
There is so much in my life I could whine and bitch about…and I do from time to time (more times than I want to admit), but there is so much I’m grateful for…much more than I could list here.
Thanks to Chronic Babe for making me think about all the things I’m grateful for.

Inspiration

On By WendyIn Chronic Illness, Disability5 Comments

I’m feeling better, at least emotionally, than I did during the last few posts.  Thanks to all for putting up with me, and showing me such great compassion.

(I have been in touch with my GYN to see about going back on the pill to see if it will help…we’ll see.)

Now, on to Inspiration.

I saw this beautiful poster on someone’s blog…sorry I can’t remember where.  So I wrote to the University of New Hampshire to see if they would mind of I printed it here.  They were so nice, and gave me their consent.

Disability is an Art

The University of New Hampshire has an Institute on Disability, this poster comes from there.  They have a lot of great resources, especially if you life in New Hampshire, but even if you don’t, it’s a good place to check out.

The quote by Neil Marcus touched me,

‘Disability is not a “Brave Struggle” or “Courage in the Face of Adversity”.  Disability is an Art.  It’s an ingenious way to live.’

How many of us feel this way?

How many times have you been told how brave you are?  How much courage you have?  Do we have a choice?

But the part that really touched me was “Disability is an Art”  –  Who would ever think that?  “It’s an ingenious way to live.”  Wow! what a statement!

Take the time to really think about that.  We are disabled, we are art.  We have an ingenious way to live.

How many people, including ourselves some times, pity us?  Think that we can’t live a fulfilled life?  This simply is not true.  Remember, we are a work of Art!  We have a life no one else does, but it’s ours.  It’s up to us to make the most of it.  Our life may not be what we expected, but it’s ours, and we have a choice on how to live it.

Another quote I saw recently:

“Have respect for yourself, and patience and compassion. With these, you can handle anything.” ~Jack Kornfield

I want to talk about more than just respect, patience, and compassion for ourselves, I want to talk about showing these to everyone.

My husband and I have talked a lot about how people just don’t seem to respect one another.  Just imagine, if we showed respect to everyone we met, and they showed respect to you.  This simple show of respect could over come nearly every obstacle.  No more road rage, no more bullying, no more yelling at customer service, no more wars (yes, I know that’s a big one, but if everyone respected one another, would there really be wars?)

Even when we respect other’s we often forget to respect ourselves.  To show patience and compassion to ourselves.  My doctors and friends have told me, many times, to “Give yourself a break.”  Finally I listened, and life isn’t as hard any more.  I don’t have to do everything.  I can ask for help.  I don’t have to feel guilty because I can’t do something.  I can handle anything.  The key word there is “handle”, no I may not be able to do everything by myself, but I can find a way to handle the situation.

Look at some of the things I can do:  I can make my husband smile, I can create a work of art, I can appreciate the world around me…I notice more now because I’m not in such a hurry.  I don’t get impatient if I have to wait at the store.  I realize that the person who is trying to help, usually isn’t the one at fault.  I notice all the people who keep our infrastructure running, people we just don’t pay that much attention to.  Like the sanitation crew…they work hard, in the heat, cold, rain, snow…. but do they get appreciated?  Usually, people just get annoyed with them because they have to drive around them, or they get mad because they were late picking up their garbage.  Our mail carrier, our pest control person, the road maintenance crew…they are working hard to keep our lives running smoothly…and often they are not respected, or appreciated.

The season of showing thanks and appreciation is fast approaching, but shouldn’t we be doing this all year-long?  A note on my garbage can saying, I appreciate you!  Can you imagine how much that would surprise someone?  I always wave at the road maintenance crew, and they always look surprised.  Once after a big storm that knocked out a lot of the power lines, I took out drinks and snacks for the crew in front of our house, just a little something to tell them, I appreciate you.  A soldier in an elevator, I simply said thank you, and I saw his face light up.

I’ve recently received cards, and gifts from people I’ve never met.  A thank you card for sending someone a cook book, that I was giving away.  A set of Walkie Talkies and a card from someone, just because I needed help, and they had something I could use.  A card from a friend who went to Disney World, simply because she knows I love Mickey.  And most recently a box of goodies from a fellow blogger, just to help me…and to show she was thinking of me.  these people will never know just how much these things have meant to me.  How they touched me at a time, I really needed it.  All of these things came from people I’ve only come to know through blogging.  What a wondrous time we live in, that I can make friends all over the world through this little box sitting on my lap.

When things seem their worst, and I want to just give up,  I realize just how many people are pulling for me.  How many people, look beyond my disability and appreciate me.

At times I forget these things.  The fear envelopes me, the guilt strangles me…but the love, respect, patience, and compassion that I have received from others makes me realize, I must give these to myself as well.  They nurture me, teach me to take better care of myself, give myself a break, and stand up for myself.  It proves to me that I am a work of ART!  My life is ingenious!

My point, that may have been lost somewhere in there:

Take the time to think if you showing yourself the respect, patience and compassion you are entitled to.  If not, make a conscious effort to be better about it.

I know I am.