Stress should be a 4 letter word

stress1-e1379774715814

Stress is widely known to cause the chronically ill to get sicker, to have flares, to generally feel worse…  Stress is an ugly word that I hate to hear my doctors say. “This is being made worse because of stress.”, “You need to get your stress under control.”  I can’t tell you how many times I’ve heard this.

The amount of stress I’ve been under the last few months would make the healthiest person feel bad, for someone who is chronically ill, with both physical and mental illnesses this has been a very trying time.  I’m sure you are wondering, “What has been going on in Wendy’s life?”  Well let me tell ya!

This may not be in order, I’m just going to get it all out.  We moved, we had a friend move in with us, I was having vertigo a lot for a while, I’m constantly afraid I will have a vertigo attack, I’ve been having migraines daily for months, my father passed away, I went through all the stress building up to my father’s death, the stress of the funeral….I feel like it has been non-stop.

I’m wondering if my migraines are worse because of the stress?  My chronic daily headache now has a base line of a 4-5 where it used to be 2-3, on a 0 – 10 scale. The pain in my neck and upper back due to degenerative discs has greatly increased, I’m in physical therapy for that now.  (going to PT is another stress, as Stuart has to take time away from work to take me to my appointments, this time has to be made up, that’s hard on both of us; and some PT sessions seem to make things worse, that’s a stressor too.)  I can’t take pain relievers which causes a certain amount of stress too because I never have any relief. My tinnitus has been very loud.  Some days my balance is worse than usual.  My emotional state is not well.  I’ve been depressed. (yes I know I have reasons to be sad, but this is more than that).  My anxiety is very high.  I am extremely irritable (I’m shocked at how much Stuart and I have been arguing, and bickering, normally we rarely argue)  I’m restless, yet tired, excessively worried, feeling like I’m trembling inside, very sad, my appetite is out of control, I am extremely self-conscious, I have very little self-esteem and I keep beating myself up for things I have no control over.  I can’t relax; I can’t give myself a break; I’m not being kind to myself.  I’m just a mess.

I’ve been having a very rough time.  This is upsetting because I’m at the best place I’ve been with my vertigo than I’ve been in a couple of years.  I haven’t had a bad attack in almost 2 months.  This is surprising because it normally gets worse when I’m under a lot of stress.  However, It is often much better during the summer.  I know I would be feeling even worse if I was having vertigo as often as I normally do.  But I can’t stop having profound fear that it will get worse any moment.  I’m having a hard time enjoying this break because I’m so terrified I’ll have an attack at any moment.

I was trying to take better care of myself, but I have to admit in the last few weeks most of that has gone out of the window.

When we are under stress it is imperative that we practice self-care.

Things I plan to do to increase my self-care:

  • Be sure to see my therapist and be open and honest during appointments.
  • Give myself a break.  This is more easily said than done, but I need to really make a conscious effort to do so.  When I have negative thoughts or feelings I want to start being more gentle with myself.
  • Meditate more.
  • Take more baths.
  • Watch funnier TV shows and/or movies.
  • Read funny or inspirational books.
  • Cuddle with my hubby.
  • Cuddle with Max (the cat) and Kiki (the little dog).
  • Eat healthier.
  • Do as much as my health will allow that makes me happy.
  • Be creative.
  • Stay in touch with those who love and nurture me.
  • Try to get outside more.
  • Keep up a gratitude list every day.
  • Laugh
  • Sing Silly Songs
  • Dance
  • Give my body 10 minutes of mindful attention.
  • Take a nap.
  • Take Deep Breaths
  • Get Positive Feedback (ask 3 friends what they love about me)
  • Write out my thoughts (for 15 minutes free write what ever I’m feeling, I can tear it up after, just get it out.)
  • Drink water (I’ve been drinking soda recently, something I haven’t done in years)

 

How do you take care of yourself?  Any self-care suggestions?  I’d love to hear them!

 

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Stress and 12 Ways To Cope With It.

Recently I’ve been feeling pretty sick.  Having vertigo regularly and having migraines daily again is taking a toll on me.

The stress in my life has increased significantly and “chronic stress has a significant effect on the immune system that ultimately manifest an illness.” (Mohd. Razali Salleh 2008)  I don’t know how many doctors have told me that I need to control my stress.  Unfortunately, that is much easier said than done.

Stress comes in all shapes and sizes.  We have major things that cause stress, like someone close to us dying, or being diagnosed with a chronic illness. We have little things that cause stress, like a traffic jam or being late for an appointment.  We even have stress from good things in our life, like moving into a nicer home, or having a baby.  Every moment of stress can cause havoc on our health.  Chronic stress is caused more by the big things, the things that don’t just go away, but the little things can build up and be “the straw the broke the camels back”.

In mid April we moved from this a tiny little duplex that I felt very uncomfortable in to a larger house with a beautiful backyard.  This relieved one huge bad stressor on me and created a new happy stressor, but a stressor none the less.  It has been 2 months since we’ve been in this house and we still aren’t settled in, this causes me a lot of stress because I know if I was not sick, this would not be the case.

At the beginning of May we had a friend move in.  Someone who is going to be helping us out and we are hopefully going to be helping him out.  No matter how smoothly this move-in was, no matter how much we all love each other, no matter how good the situation will be, it has caused stress.  Suddenly I have someone else in my home and I’m not used to that.  I’m not used to people seeing me sick.  I haven’t been around many people at all for the past few years and suddenly there is someone living with me.  I’m not used to sharing my space with anyone other than Stuart.  This has caused a huge amount of stress.  It’s unintentional, I didn’t expect it, and I’m sure it will ease, but right now it’s there.

My father’s health is declining.  He lives over 3 hours from me.  I can’t just jump in the car and go see him. I can’t spend this precious time with him.  I can’t help care for him.  I can’t help my sister.  About the only thing I can do is give my sister encouragement.  I can text her and listen.  That isn’t real help and It breaks my heart.  The guilt is overwhelming, so is the stress.  This is the first time since I stopped driving that is has caused me such anguish.  I know even if I could drive I’m not well enough to care for someone who is ill, and I’m feeling guilty about that too.  Guilt is a huge stressor.

Of course, the fact that I’ve been sicker is a major stressor too.  A huge Catch-22 huh?

A little fairy, something I created. Creating is a great way to relieve stress.

A little fairy, something I created. Creating is a great way to relieve stress.

What can we do to reduce the effects of stress?  Well there are a few things, many of which are hard to remember when you are in the throws of being sick.  However, there are things I try to do, they include:

  • Meditate:  I usually use guided meditations, there are a lot of apps out there to help you with this, and you can find many of YouTube.  There are different guided meditations that help with different things.  I often do the body scan meditation, I’m so used to this one I can do it without the aid of a guide.  You simply focus on a part of your body, I start with my feet, and move on throughout the body paying attention to what each part is saying.  Don’t judge, and don’t worry about doing anything, relax into it if you can, but mainly just note it and move on.  For each part really pay attention.  For example, right now as I focus on my feet I notice my toes are a bit chilly, my heals are pressing into the floor, an old ankle injury is causing a little bit of pain, but nothing that should concern me; I’ll stay here for just a bit to see if there is anything more I need to pay attention to, then I’ll move on to my calves.  For some people this can be uncomfortable, getting in touch with their body can bring back repressed memories, be aware of this and take care of yourself accordingly.   This is just one example of a meditation I often do, there are many, feel free to practice this any way you feel comfortable.
  • Deep Breathing:  This is pretty simple but can be a great stress reliever.  Simply stop and focus on your breathing.  Put your hand on your belly and feel the breath fill up your abdomen and then go out.  Do this for about 5 minutes, or just take a few deep breaths when you need and carry on.  I find this very cleansing.
  • Some me time:  Find time just for yourself.  I take a hot bath with Epsom salts and sometimes candles.  It’s a me time.  Some people are not comfortable with this, if it isn’t for you, don’t do it.  See if you can find something that is just for you that you consider self care.  Paint your nails, put lotion on your feet, have a nice cup of tea …. these are all things that I like to do, find your special thing.
  • Stay in the moment:  When we are under a lot of stress it’s easy to build things up in your mind about how bad things are going to continue to be.  Stop and try to focus on this moment.  The future hasn’t been written yet, things will never stay the same.  When I’m having a vertigo attack I try hard to stay in that moment.  It’s a rough moment sometimes, but I know it will end.  I can deal with anything for a moment.  I wrote a whole post about that, Living In This Moment.
  • Bitch:  I don’t mean to wallow in your misfortune, but reach out to someone you trust and just let it all out.  Maybe get some advice.  I hold things in way too much so, I feel better when I talk to a friend and just let it go.  I have a good friend who never judges and gives great advice, sometimes I even take it.  🙂
  • Exercise:  This one is really tough for some of us.  It’s very tough for me.  However, the release of endorphins when you exercise will make you feel better.  I try to do stretches, and walk as much as I can.  Don’t let it stress you out if you can’t do this, I often can’t, just do what you can, doing something good for ourselves makes us feel better.
  • Eat Well:  Again, doing something good for ourselves makes us feel better.  When I’m under a lot of stress I often binge eat.  I crave sweets and I’m literally hungry way more often…like all the time.  I’m trying hard to munch on things that are good for me.  When I do this I feel better about myself.  When I give in and eat a lot of junk, I get even more stressed out.
  • Laugh:  How can you feel stress when you are laughing?  Watch a funny movie.  Read a funny book.  Play.  I play with my dog, she always makes me laugh.  My husband often makes me laugh too.  Laughter has really saved me a number of times.  I have been spiraling into a deep depression, but finding things to laugh about helps.
  • Listen to Music:  I can’t do this one because a lot of music sounds weird to me since I got my cochlear implants, however music can soothe your soul.  Just lay back and turn on some tunes.  Listen to relaxing tunes to calm down, peppy tunes to help you get moving, happy tunes to make you smile.  Music can melt stress away.  (My husband and I often sing out loud and make up silly songs, this makes me laugh.  I’ll also hum to calm myself.  So even though I can’t hear music it is a big part of my life.)
  • Create:  Write, paint, draw, color….do anything that gets your creative juices flowing.  When you get really involved in creating it can produce the same positive effects that meditation can.
  • Have sex:  Perhaps a little Too Munch Information here, but I feel it’s worth a mention. Having sex, talk about an endorphin release!  Not only does sex release endorphins it makes us feel close and secure in our relationship.  The feelings that are released during sex can be a great stress reliever.  (masturbating can be very releasing too)
  • Be Grateful:  When we stop and take note of the things we are grateful for instead of focusing on the things that are going wrong it can be very cathartic.  Sometimes you may feel you have nothing to be grateful for, but we all do.  Chances are if you are reading this you don’t live in a war-torn country, you have a safe place to live, you have enough food to eat, clean running water….  We take so many things for granted, but we have so many things to be grateful for, take a moment, step back, and think about things you are grateful for.  I try to list 3 good things every day.  3 things I’m grateful for.  You may find this practice very helpful too.

How do you handle stress?  Any suggestions for me and others?

I admit when I’m under a lot of stress I have a hard time implementing my stress relieving techniques, but just sitting here listing them makes me realize that I have ways to help myself and it has given me the incentive to get busy and try more of them.

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On my mind…

me pop and terry2

Left – Terry, my sister, Middle – My Pop, Right – Wendy, me

I don’t talk about my family often, other than hubby and the furry babies.  But there is something on my mind, something that may explain part of sadness.

My father had liver cancer in 2013, he went through treatment (chemoembolization) and they got it.  It was a much easier way to treat cancer than anything I’ve ever seen.  He has been doing well since then….

Until his check up in December, well even then they didn’t think anything was seriously wrong.  When he had his initial cancer he had a large tumor that they got rid of, and he had a tiny little tumor that they left alone, but they have watched.  It hadn’t grown at all then at his December check up, it was an itsy bitsy bit bigger, so they decided to go in and do Radiofrequency ablation (RFA) and get rid of it.  They did this the near the end of January.  During that procedure the doctor found more 2 tumors.

This was supposed to be an in and out no big deal procedure, but it took my father a while to recover from it.  Last Monday he had the chemoembolization again on the remaining tumors, this procedure is less hard on him.  Now this coming Monday he will have RFA again on both of the tumors.

My father is 82 years old.  This is really hard on him.  It’s also really hard on my sister.  She is taking care of him.  She was taking care of him after his first surgery when I was put in the hospital for having seizures.  She was so worried about me she got my uncle to come stay with my father and came to help me, then she turned around and went right back to care for my father again.  For over a month now she has had no life of her own, she has only been taking care of others, and I don’t know how much longer she will have to do this.  She is normally very involved in her grandchildren’s lives, I know this has to be hard on all of them.

I haven’t been able to go see my father.

I can’t help either of them.

I can’t help but think….what if…

and I can’t help but feel worried, sad, and guilty.

 

When you have times when you can’t help others who you love, how do you handle it?

I shouldn’t feel guilty for being sick, but at times like this, I do.  Well, I feel guilty that my sister has to shoulder all of this on by herself.  I feel guilty that I can’t even be there to hold my father’s hand.  And I feel guilty that I felt better today than I have since I can remember.

After days of having vertigo constantly, yes I had 2 days of rotational vertigo that went on every single second, I woke up feeling amazing today.

I had a really good day…..it’s hard when I think about what my family is going through.

 

It’s just so hard sometimes…

This is a stream of thought post.  I just needed to talk and get some things out.  So no fixing of grammar or anything.  One thing I do want to say before you read this…..I’m not suicidal.

photo by w holcome

photo by w holcome

Is everything just so hard right now or is it the life through steroids?

I feel like I’m slipping away.  I don’t know who I am half the time.  I’m really not handling things all that well….yet in the next moment I am….then I’m not…then I am…then I’m completely melting down and that has been the last two days, and

I just feel like a weight is on me that I cannot lift and it is crushing me,grinding me down further into the ground past the point of breath….I’m buried alive….why, why cannot I still just not die.

Oh I am so ashamed to feel this way.  I am just so tired.  So tired of feeling the ups, the downs, the hope, the devastation when life kicks me in the gut over and over.  And I can’t believe I’m actually writing these feelings out here where everyone can read them.

I do not feel like this.  I don’t.  This is not how I handle things any more.  It has to be the steroids messing with me…it has to be….

But then…there has been so much loss lately…so much stress…and I found out yesterday that it is worse than I thought.

When you can’t hear very well…..let’s face it, I can’t hear at all without my cochlear implants on and working, and for a while now things haven’t been sounding right.  So conversations with my husband have not been as communicative as they normally are.  I have always been so proud of how our relationship has been so good, because we communicate so well.  When you can’t talk a lot, communication seems to fail.  He thinks I hear things I don’t.  I think I hear things he said differently.  And things simply do not get talked about.  I’ve been feeling like we just talking much about stuff….and when we do, things just don’t get anywhere, we just get a bit frustrated because I don’t understand things….well…I really didn’t understand something, and I got really upset about it yesterday.  I lost it, completely broke down, and I’m still spinning about it.

I thought our finances were doing ok.  Not great of course.  Tight.  We do have a mortgage and rent and everything.  But I thought we were ok, not in the negative ever month, being able to pay our bills…paying off credit cards….ect.  We aren’t.  We are still in trouble.  I’ve been spending money recently.  I’ve told Stuart when I was going to, or asked him….he didn’t say…”we really shouldn’t be spending”.  No I haven’t gone crazy, but I’ve spent when I didn’t need to.  We bought Christmas for our niece and nephew that could have cost half what it did.  He said, “It’s what we would normally spend.”  This makes no sense to me.  I’m so distraught.  He said….that in about a year we should turn the house over to the bank.  What?  and we can spend money on gifts???  I can buy things for me?  NO.   I knew we were in real trouble when Kiki started having diarrhea Friday night and Stuart said, “Oh Kiki please don’t get sick, we can’t afford it.”   What?  We discussed this before we got a dog.  If we couldn’t afford a pet, we should not have gotten one.  In my opinion, that is one of the worst things a person can do, and I know Stuart feels the same.  (I know we would have found a way if Kiki would have needed to go to the veterinarian, but that comment really scared me.)  We are in this situation because of me.  We have not been able to sell the rest of the stuff out of the house, or get the house on the market because of me.  No, the house may not have sold yet, but we are nowhere near even getting it ready.  All because of me.  I have gotten too sick for him to leave me alone to go to Durham and take care of things.

Now, how can I not feel guilt about being sick??  How can I not feel guilty for every doctor appointment I have?  How can I not feel bad about every extra thing we have to spend because of my illnesses?  How can I not feel bad about the trip we have to take to Duke….tomorrow?

We were talking about taking me to special clinics to look for more answers…..HOW could I even think of this???  I cannot allow my husband to lose everything for me.  I cannot allow him to work so hard at his life and never be able to own another home, never be able to retire, never be able to do anything but take care of me!  NO!  I will die first.   Please, please, let me die first.  I simply cannot live with this guilt or with this lack of quality of life.  How do you choose?  How do you choose?  Am I selfish and allow him to sacrifice everything for me, to help me…where it may end up there is no help, that I will end up just like this forever.  Or do I stop it.  and say enough.  I accept that life will be like this.

I have ups.  We’ve seen this, over and over.  I have some good times.  I had them not long ago.  I went for over 4 months feeling so much better.  Then I have times like this.  Will I be like this forever, or will I have the good times again.  Who knows.  I cannot predict the future, and I have to stop making up the worst case scenario in my mind.

We have to get more stable financially before I can allow him to sacrifice any more.  He does so much.  He is so exhausted so much of the time.  He doesn’t even see that it is because of me.  At least he loves his job now.  It is not draining him.  He really enjoys it.  I don’t worry about him so much there, but am I jeopardizing it?   I hope not.  Right now that is all I can do.  I have to trust that his boss really is as understanding as he says he is.  I have to believe.  I know his hours are flexible….I hope they are as flexible as they are making them.  He does a lot for me.  They work around my appointments.  Sometimes he leaves in a moments notice when I have an attack.  He always gets in the hours, he gets his work done….he says that is all his boss is concerned about.  But I am concerned.  I do not want him to risk this job over me.  (they did just put him in charge of a project, so they must believe in him, right?)

I have to be more involved in the finances and everything as often as I can.  I have been hiding.  I have not been able to handle the stress of it.  I do not deal with instability.

I’m not dealing well with not being able to do anything.  With not being able to help at all.

I’m simply not dealing well.

I do so wish we had some help.  I wish someone would give us a maid for a day as a Christmas present.  Or better yet, a maid service.  We used to have one, got a great deal on Groupon, had a maid come in just once a month, and it was perfect.  For this tiny place, I’m sure it wouldn’t cost much….well for some.   But it would get the deep stuff done.  Things that just don’t get done…..oh who am I kidding, a lot doesn’t get done lately.   (I think that’s why Kiki got sick, she found something on the floor, I swear she’ll eat anything she finds!)

I’m tired.  So tired.  Between the spinning head and the aching back, sleep is hard.  And now my brain will not shut off….I worry.

Please Please tell me I will be able to deal with this better again after I get off of these dang drugs!   But then will the awful vertigo get worse again?  I live like that either.

Why does it have to be so hard????

I did it Alone. Spinning another day…

At a little after 6am Stuart was leaving for work and I woke up and decided to eat a little something and take my first steroid of the day.

I woke at 8am with my stomach hurting…ugh, steroids.  Then I thought,  “Oh good, it is better today, knock on wood”…and I really did!  I took an antacid for my stomach and went back to sleep.

I woke up at 10am with horrible heartburn and spinning.  sometimes you just want to cuss!

I thought, ok….slow.  I can handle slow.  I hope.  I took meds and slowly, very slowly started to get up.  Ah…let’s just lie here for a minute.

Try again….slow.  VERY SLOW….  I feel like I’m walking on a merry-go-round, and it’s on a rocking boat….ugh…my stomach takes a lurch…it’s ok, just stop here for a second.  Grab my walker….oh nice walker, I love you so much.   slowly I get up…I am sure no one has ever seen anyone move so slowly.  Once I am up, well kind of up, I am hunched over the walker with my head leaning to one side, I am doing pretty good.  I start to head to the bathroom.  WAIT…phone!  I grab my phone, just in case.  If I fall, I need to make sure I can get help.  and off to the bathroom.   I DID IT!  I got to the bathroom ALONE!  During vertigo!  it was a very slow spin but I did it!!

I did it 4 times today!!!   I have been slowly spinning all day!!!   If I keep my head exactly still things are pretty still, but if I move, WHOOSH!

This morning I was very proud of myself.  Not only did I get to the bathroom alone, I got in the kitchen, grabbed a banana, a couple of pancakes that were in the fridge and got back to the bedroom…got my CI’s….and things I’d need for the day  (meds and such) and go myself to the couch.  Once I went from the standing position I was in to sitting the vertigo went WILD!  What on earth?  who knows this is the most bizarre thing in the world, no rhyme or reason to me!

So I collapsed and tried to calm down…and hung on!  Whew!

It slowed, and I was ok, but not great by any stretch of the imagination.

It’s about 11am by now.  Stuart had an appointment this morning and texted to check on me.  I told him I was spinning but I handled it, however, if he could stop by on his way back to work and help me get settled it would be great.  So he did….and I sent him on his way!  Even though I was not doing well when he left.  It is now almost 4pm and I have done a good job of handling things today.

I’m proud of me.

I still want to share with you guys just how I got through some of the roughest parts this past month, and everything that went on in my head, and heart.  Things I didn’t want to admit to.  I was ashamed to admit I wasn’t handling things as well as I thought I would.  But I got through it, and learned a lot along the way.   Of course, I’m still going through it….so…we’ll get there.

One thing that really helped me get through all of this…..

So I feel bad about it…feel bad.  That’s OK.  Acknowledge it.  Don’t feel so guilty about it.  I don’t have to feel positive all the time.  My positive go to attitude is still there, but it is perfectly fine to feel bad about this, to feel sad, angry, and well….just bad.   I’m not going to wallow in it, I’m not going to get stuck in it, so I don’t need to beat myself up over it either.  Accept it, and have some self compassion.

Things I should note today….  woke feeling better around 8am.  Woke with vertigo at 10am.  Had rotational vertigo all day, various degrees of spinning speed.  Right side of face/head felt funny. (by this I mean, it feels thick).  Had a migraine.  Took a Maxalt, pain got better, but side of head sensation did not go away.   *could some of the vertigo be migraine related?   Ears feel full, but not as full as they have over the past few weeks.  When I drink I can really feel the coolness in my right ear, it actually feels like water gets in my ear.  there is not water in there if I feel in there, but it feels very strange.  am I just noticing this because I’m hyper aware now?

 

Thanksgiving often forgets those without……

THANKFULI love the sentiment behind Thanksgiving.  Take the time to be thankful for what you have.

Then I look around.  Is that really what I see?  There is so much talk of spending time with family and friends and eating and …and…and  Well what is a person to do who has no one, or who has very little?  I have very strained family relations.  I am never invited to any family function.  This can be very hard.  Some years it hurts more than others.  This year I became very melancholy about family, I’m sure it is because I have been so sick and the steroids have been turning up my emotions a bit, but seeing all the stress on how we should be with family and how things “should be” started to make me feel even sadder about it all.  (Don’t worry, all is good with me.)  If that could happen to me imagine what it could do to someone who is really depressed?  Someone who has no one?

I remember those times.  I have spent Thanksgiving and Christmas, alone.  On occasion I was invited to friend’s for dinner, sometimes they were fun, other times they were miserable.  If you reach out to someone and invite them over for a holiday meal, please try to include them in your festivities, not just feed them.  I have never been more miserable than when I went to a holiday meal and felt I was a charity case.  Sitting in a corner alone watching people have fun is worse than sitting alone by yourself knowing people somewhere out there are having fun.   I’m not saying, don’t reach out and invite someone over….please do!  But include them in your festivities.  Do not have family gift exchange in front of someone who is alone for the holidays.  Do not do your yearly family traditional …. whatever….and not include this person.  Do something that includes this person.  Make them feel welcome and special.  Make them feel you are Thankful they are there.  If you have a special family tradition that you cannot include this person in, then invite them to come later, or have the tradition after they leave, or find a way to somehow include them.  Some people may not have a hard time with this kind of thing, but I did. It was torture to see a happy family doing things that a family does knowing my family didn’t want me with them.  That is not to say I was not grateful to everyone who had me over for a holiday meal, I was.  I have been to some homes where I didn’t want to leave I felt so welcome and included.  (little hint, if you have someone over….get them involved.  Treat them the same as you would anyone else.  I loved it when I was put to work, or was told to help with the kids, was taken aside by grandma and told story after story….when I was treated like family, that was the best.)

It’s also that time of year when I see so much food everywhere!  I hear people talking of family and friends and togetherness and FOOD!

I’m amazed at how much food is wasted in this country, yet so many people go hungry.  There is no reason for anyone in this country to go to bed hungry.  There are so many things wrong with this I just don’t know where I would begin to talk about it here.  Not today.

Today I want to just say, when you are planning your Thanksgiving meal, think about the people who don’t have one.  When you go to the grocery store and you see that box that at the entrance where you can donate to the local food bank, please put something in there.  People are using the food bank more and more these days.  The place to go when you are in dire need is overwhelmed with people in need.  Every time you go to the store, please put something in that box.  If you can donate to the food bank, even better, then they can buy fresh food to give out.  This is very important, even when the needy are getting something to eat it is often so far below nutritional standards they are so malnourished they are getting sick and often still starving.  Most of the hungry are children and elderly.  1 in 5 people in the United States are hungry.   When you are wearing your elastic pants this Thanksgiving so you can eat too much, remember there are people who don’t have enough….some who don’t have any.   Remember, they won’t have enough the next day either, so continue to give. Project Sunlight is a great place to get ideas on more ways you can help.  At Feeding America you can find more about hunger in America and you can find your local food bank and see what they are doing in your area.

Remember, after Thanksgiving people will still need food.  We often give more to make sure people have this wonderful meal on this day, but then they go hungry again a few days later.  This year won’t you say thank you for your bounty by sharing a little throughout the year.
no one poor

Now…for a few things I’m very thankful for this year….

  • I cannot say how thankful I am for my husband, without whom I do not know how I would manage to navigate this world.
  • After 15 months without a job, my husband found work.  Not just a job, but one he enjoys!
  • this moment is good.  (it has been quite a ride of ups and downs this past month, the past 2 days have been better…one moment at a time…accept and make the most of it.)
  • I had nearly 5 months of feeling so much better than I thought was possible.
  • for learning more and more about living more mindful
  • for learning to be less judgmental of myself and others.
  • for having a roof over my head, heat when it is cold, food when I am hungry, water when I am thirsty…
  • for feeling safe.
  • for having at least one friend I say anything to and know it will be OK.
  • for a very special email I received the other night that helped more than the sender could ever possibly know.
  • for learning how to forgive, and knowing that forgetting isn’t as easy.
  • for remembering again and again….I can do this….one moment at a time.

There is so much more I can’t even think right now….actually…I can’t really think right now.  Unfortunately, I’m getting a bad headache…ah the joys of weather change.

What is wrong with me??

image by w. holcombe

image by w. holcombe

What is wrong with me?   This is the question I kept asking over the past couple of weeks.  Heck I’ve been asking this question a lot over the past couple of months, I just keep seem to be falling apart.  But I don’t think that way….or I try not to.  I accept things as they come.  I just roll with the punches.  Yeah.  Well that isn’t how it has been going.  I’ve been trying.  But I’m not succeeding right now.

It has just been too much.  This post is about the latest….

I mentioned a little in the beginning of my last post: VERTIGO…MAJOR!

It started the beginning of this month.  I would just suddenly have this whoosh feeling and I’d start to spin.  It just felt different.  I can’t explain it.  Maybe it was different because I had been feeling so off for so long.  I had been having the severe disequilibrium for so long (feeling like I’m on a boat all the time) and not being able to focus on one spot without it moving.  Maybe?  Really, who knows.  But these attacks…they are different.  The start, it just feels like I moved my head too fast, but I didn’t move…and suddenly I’m in full spin.

One night I had a drop attack, but it felt different from any I’ve had before, and I haven’t had one in a long time.  We were watching Jeopardy, and suddenly I felt like an entity had just come up and partially entered my body and pushed me over on the couch and I gasped…one of those screams where you suck in all your breath…I just fell over on the couch and was in full-blown vertigo.  If I had been standing, I would have hit the floor hard!  It scared me so much.  Not just the falling, but that feeling before hand, I literally felt like there was something trying to enter my body and pushed me over.  It scares me just thinking about it.

When it started I had just had a day completely vertigo free.  I could focus on a spot without it moving, the boat stopped.  Relief.

What happened for that day?  What happened after that day?  These are questions my mind likes to ask but no one can answer, I try hard to stop the loop of questions, but it’s hard.  I’m an inquisitive person.  I’ve always been that way, I want to know how things work, I loved science and proving theories.  Telling me that no one knows something about a scientific problem is hard for me.  I keep thinking I’ve accepted that.  And I have.  I have.  But I don’t want to.  I want it to change.  I want to know what is happening to me.  What changed?  And more than that, I want for people to stop asking me that question.  It is hard enough for me to not have the answer for myself, but when someone else ask it, it cuts me to the bone.  I want to just scream….I DON’T KNOW!  Please NEVER say to a chronically ill person, “Why can’t they do anything?”  of  “I think you need to find a new doctor.”   You have no idea how many doctors I have been to and still continue to consider.  However, this is my life.  It is my decision how I get treated.  You do not know what it is like to live with this, and you have no idea what the treatments are….do not tell me what I should do.   (unless of course you have this disease then you can talk to me and if you over step your bounds I will feel I can tell you to so.  That’s different, we are going through the same crap…excuse my colorful language.)  However, normal people do not understand.  Heck, some people who have this don’t understand, it’s different for different people.

So….off that soap box and pity party….

I went to the doctor on Wednesday.  Yes the doctor here in Charlotte.  He really doesn’t listen.  I will not go back to see him.  I am glad I will be able to see the audiologist here when I can’t get to Duke, but I will have to find a different doctor.   (and I don’t feel right going to the audiologist since they don’t get paid, I’ll only go there if I absolutely have to.)    They do have a lot of doctor’s in that practice, however he is supposed to be the “head guy” who knows about Meniere’s.  I will be doing some research, but if he is the head guy…I am up a creek.  Let me tell you about my latest visit.

I did get an appointment rather quickly, that was nice.  We got to the office and I had to be taken in by wheelchair.  They thought I was in a wheelchair because I had back surgery??  I never said I was having back surgery.  I did tell them I had a herniated disc and was having physical therapy, therefore I wouldn’t be able to do vestibular therapy until I got that straight. (Where did this information come from?)    He asked me about these attacks, how long they have been happening and what they were like.  I told him …bad attacks lasting 30 mins to over 3 hours, 3 to 6+ times a day, coming on with no warning.  He asked me to describe the attacks.  I looked at him and said.  “You know what a Meniere’s attack is like.”  Yes, I was a bit snarky.  I had been through telling him what my attacks were like the last time I was there. I have never had to tell my last doctor what my attacks are like every time I go in there.  He said “Yes, but I want to know what your attacks are like.”  I started to tell him, I told you last time, but I didn’t.  I said, “severe rotational vertigo, severe tinnitus, want to die!”   “Yes, that’s normal”  DUH!   Stuart them tells him how much my eyes have been vibrating with these attacks.  I got him to really look this time, and he really noticed, he as surprised he hadn’t seen it so much before.  My eyes really dilate, and I have nystagmus really bad during an attack.  I need light or I get really sick, but lights also hurt because my eyes are so dilated.  My eyes hurt so much after just a few minutes, after hours…well dang!  So the lights are normally dim and my face is in a bucket throwing up, of course my darling husband doesn’t normally see my eyes vibrating.  Poor thing felt guilty he hadn’t really noticed as much before.  I was having him look because something with Meniere’s one eye will vibrate more than the other telling you which ear is causing the attack…not all the time, and not this time…darn.

Back to the visit.  The doctor then looked in my ears and does this thing where he makes me follow his finger with my eyes….he moves his finger really fast.  I tell him…that makes me sick.  He keeps telling me to look at it.  I look but I will not look fast.  I am not going to throw myself into a spin in his office just to perform his little test.  (I know it is neurological test, I’ve had it many times before, you do not have to do it so fast)  I had already taken 3 or 4 Valium that day because of the attacks I’d already had.  I can tell he gets frustrated with me when I don’t do the test as he wants.  oh well.  He asked what I take for my attacks, I told him, Valium and Phenergan.  He said, well that’s the best.   He asked if I had this happen before.  Yes, in the spring of this year, and explained it had been after I had been on a high dose of steroids for my migraines that tapered off too fast.  My ear doc had to put me on steroids that tapered off slower.  He said, I told me I only have attacks 2-3 times a year.  I said, I only have very severe attacks 2-3 times a year, I have small, and mini attacks almost every day.  He said nothing.  He paid NO attention to that.  He acts like since I don’t have severe attacks like I have had the past couple of weeks all the time then this is not debilitating.  He really heard nothing I said about how this is affecting my life.  He heard nothing about how I can’t focus on things without them moving.  He DOES NOT LISTEN TO ME!  Why?   Later when I got home I was so upset, I talked to Stuart and was in tears, “Did I down play my Meniere’s to him the first time I saw him?  He doesn’t understand what this is doing to me.”  Stuart then told me…that no, he just doesn’t listen, he only hears what he wants to….I digress again…back to the visit….

So he wrote me a prescription for steroids.  Good, that is what I expected.  He told me the dose and I thought…That’s High.  He then said some people get very agitated and have mood swings on these….I told him I do, and it can be pretty severe on a high dose.  He ignored me…”If you have a problem call me”  I just told you I have a problem! Listen to me!  I explained again about how the high dose prescription from my migraine doctor that tapered off too fast made me spin.  He said, “This won’t make you spin, but if you have a problem, call me.”  Hmmm, are you listening to me?

I got the prescription and started it.  The next day I couldn’t stop crying.  I looked that the dosage….and the tapering.  60mg a day for 14 days!  then 40mg for 2 day, 30mg for 2 day, 20 for 2 days, ….you get the idea.  14 days then 2 days each…that’s a pretty fast ramp down!  and 60mg of prednisone for 2 weeks!!  I will be going out of my mind!  It is very hard for me to deal with these emotional swings with my bipolar swings anyway.  It makes me feel like I am having bipolar episode, and it drives me crazy.  I can’t trust my own emotions.  I don’t know if all of my mood swings are from the steroids or if I need to be evaluated for bipolar stuff.   So, I thought….I can’t do this.  I decided to look up my chart on the Duke Patient Portal and see what my prescription was from my doctor there.  It was for prednisone, 10mg tablets, so that was all good, but the dosage was much different.  I’m following his dosage.  He starts out at 40mg for 5 days, then goes to 30 for 5 days….ect.  a much slower taper down, and I know I did fine with it.  I will also be taking half as many pills.

Is this the right thing to do?  Should I be treating myself?  In this case….I don’t really think I’m treating myself.  I don’t like to go against a doctor’s prescription, especially about steroids they can mess you up!  But I know my tolerance to them and I know they do mess me up.  I once swore I would never take them again….but sometimes you have to do something that you don’t want to do to survive.   I feel like since I couldn’t go to Duke to see my doctor, I’m doing the next best thing.  We did call him and he said he felt steroids would help again, but didn’t feel he could prescribe them without seeing me.  (My point…as I say in my disclaimer, I am not giving medical advise.  I do not advise anyone to ignore what their doctor tells them.  This is just my story.)

Good news.  The steroids are helping.  I’m on day 3 now.  The first day I had a mini attack and a few hours feeling like I was VERY drunk, I was more sick to my stomach than I was during most of my attacks, and that is saying a lot!  Unfortunately, I had run out of what I had been using to really control my nausea, so I was really sick that night.  Yesterday, I didn’t have an attack.  I did have that drunk feeling again last night right when I was getting tired, same as the night before, thankfully it didn’t get as bad or last as long.  So it looks like things are getting better day by day.  Tonight, I am going to force myself to go to bed and to sleep as soon as I feel tired…maybe that will stop that drunk feeling.

that is the story of my last couple of weeks.

It has been hard.

The last few months have been hard.  Physically and Mentally.  It has also been hard because the doctors I trust are 300 miles away.  I’d also like to see my therapist, this has been a lot to process, and I’d like to have her to help me through this with the mood swings.  I moved here feeling so much better, with so much hope, so much promise.  I thought I was ready to handle anything life through at me.  I was wrong.  I’m still trying hard to live in the now.  I’m trying to accept things as they are, and accept my feelings … nonjudgmentally.  that is a BIG thing.  I may be having a really rough time, and I may not be able to accept life as it is without wishing it to be different, but that’s alright.  I’m just not there yet.  Right now I’m hurting, and I need to be here for a little while, and stop judging that.  I’m still hopeful and good and happy and loving….it is just that the hurt is in front of it right now.  And I’m not going to judge that.  I’m just going to wait until it goes away, and since I accept that is here, and a part of me, the faster it is lifting and the other parts of me are shining through.

Deep Breath.