Tag: chronic illness

Time for “Us”

On By WendyIn Chronic Illness, Invisable Illness, Meniere's Disease4 Comments

wendy-and-stuart-anniversary-12

This past Saturday was our 12th anniversary.  With my husband being my caregiver it is hard to find days where we can find time for just us without my illnesses playing a major part.  Saturday was one of those rare days.

Recently I’ve been feeling pretty darn good.  I have my days of not feeling well, my balance will be way off, and I’ll topple a lot, but for the most part I haven’t had any major vertigo attacks.  That’s huge for me.  I had a few days last week where I just didn’t feel good.  I was afraid I wouldn’t be able to spend our anniversary out of my recliner.  But I was surprised.  I woke up feeling good, so we headed out for a day of adventure.

We had a few plans for the day.  Stuart asked me what I wanted to eat on our special day and I wanted crab legs.  So we found this little restaurant that is on a small lake.  I love being close to water.  I was such a happy girl when we were sitting there on the water I teared up.  After our wonderful lunch we walked around the lake and watched the ducks.  We took pictures and just enjoyed ourselves.  We then went out of frozen yogurt.  The whole day we flirted like teenagers.  It was such a good day, but it wasn’t over.

We stayed in a hotel for the night.  It had a big whirlpool tub, and was in the ritzy part of town.  We decided not to go out for dinner we instead went to Whole Foods and loaded up on the Salad bar and went back to our room.  That may not sound romantic but it was so nice to just curl up in bed with my hubby eating salad.  🙂

It was a very romantic day.  We had planned to do more on Sunday but we were both exhausted from our anniversary celebration.  We came home and just vegged.  I slept sooo much.  On Monday I was still paying for our little adventure and felt like I was catching a cold, but by Tuesday I was feeling well again.  Which was great timing as Stuart had Tuesday off and we decided to go back to the boardwalk and just walk around and watch the ducks.  We had ice cream outside enjoying the beautiful weather.  It was a very relaxing afternoon.  Sometimes even though I know I’ll pay the price later the price is worth it.

It is so very important to take the time to spend as much “us” time with your significant other as you can.  My husband is my caregiver.  Even when I’m too sick for days like Saturday (and Tuesday), we try to take some time for us.  We may curl up and watch a movie together, or have a special dinner, just sit and talk…anything that makes things special.  One big thing we do a lot is flirt with each other a lot.  I am not able to follow through on a lot of my overtures but it doesn’t matter, he knows I want to.  That is what is important.  It’s important that even though we can’t be as intimate as we’d like as often as we’d like that we let each other know we’d like to, but it’s okay that we don’t.  It’s okay that we just cuddle, that we are with each other, that we are so in love that not being able to have sex as much as we’d like isn’t going to come between us.  And it makes those special nights in a hotel all the more special. 😉

 

Mindfulness Monday – 14 Love

On By WendyIn Chronic Illness, Mindfulness13 Comments

hearts black and white

When we are mindful
deeply in touch with the present moment,
our understanding of what is going on deepens,
and we begin to be filled with
acceptance,
joy,
peace,
and
LOVE.
~Thich Nhat Hanh

Love is the absence of judgement.
~Dalai Lama

Psychogenic Non-Epileptic Seizures – What are they?

On By WendyIn Chronic Illness, Mental Health19 Comments

eye with monster

I want to tell you a little about something that is going on with me.  This is very difficult to talk about.  Admitting this is happening to me is difficult.  Talking about it is difficult.  It shouldn’t be this difficult, but it is.

You may remember back in February I was hospitalized for having seizures and it was then determined that I do not have epilepsy.  It was thought that a medication I was on may have caused the seizures but that isn’t the case, I’ve had more seizures since being off the medication.  (some people prefer to call these seizures events or episodes instead of seizures since the brain is not firing like it does during a true seizure.)   I do not have them regularly, and I haven’t had many, but I do still have them.

“A seizure is a temporary loss of control, often with abnormal movements, unconsciousness, or both. Epileptic seizures are caused by sudden abnormal electrical discharges in the brain. Psychogenic (non-epileptic) seizures are attacks that look like epileptic seizures, but are not caused by abnormal electrical discharges. They are stress-related or “emotional.” They are sometimes called pseudoseizures, but “psychogenic non-epileptic seizures” (PNES) is now the preferred term.” -1

The type of seizures I get are psychogenic non-epileptic seizures (PNES).  By definition, PNES are a physical manifestation of a psychological disturbance and are a type of Somatoform Disorder called a conversion disorder.-1  “For some patients with psychogenic nonepileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder. In order to treat patients with PTSD, the clinician has to take the seizure apart to see what the seizure represents in terms of emotions and memory as well as where this trauma is stored in the body.”(Kelley)-1

Since many people with epilepsy have normal reading with an EEG, PNES is diagnosed by an EEG with video monitoring which has to be read by a specialist in epilepsy.  Diagnosis this way is nearly 100% accurate.  There are about 10% of patients with epilepsy who also have PNES.

“PNES, unlike epileptic seizures, are not the result of a physical brain disease. Rather, they are emotional, stress-induced, and result from traumatic psychological experiences, sometimes from the forgotten past. It is well known that emotional or psychological stresses can produce physical reactions in people with no physical illness. For example, everyone has blushed in embarrassment or been nervous and anxious as part of a “stage fright” reaction. Today, we also know that more extreme emotional stresses can actually cause physical illnesses.”-1

As my psychiatrist said, my brain just gets to the point where it decides it can’t handle any more and says screw it.  I’m seeing a psychiatrist for medication to help with anxiety and my normal bipolar stuff, and whatever else comes up.  I’m seeing a psychologist for therapy to try to figure out what is causing this.  I’m not going to discuss what is causing my seizures because frankly we aren’t exactly sure yet.

Today I wanted to make people aware that psychogenic non-epileptic seizures are real.  People cannot control them.  People often refuse to accept the diagnosis because of the stigma related to it.  Family and often physicians do not understand that the patient cannot control what is happening to them.  I wanted you to know that you know someone who is going through this, and I have no control over it.  I also wanted people to know they are not as rare as you may think,  “in the general population the prevalence rate is 2-33 per 100, 000, making PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia”.-2

for more information please read

  1. Psychogenic (Non-Epileptic) Seizures by University of South Florida College of Medicine
  2. The Truth about Psychogenic Non-Epileptic Seizures 

Mindfulness Monday 13

On By WendyIn Chronic Illness, Mindfulness4 Comments

from d100 008

If your relationship to the present moment is not right
nothing can ever be right in the future
because when the future comes
it’s the present moment.

~Eckhart Tolle

 

The primary cause of unhappiness
is never the situation
but your thoughts about it.

~Eckhart Tolle

 

 

Mindfulness Monday 12

On By WendyIn Chronic Illness, Mindfulness2 Comments

leaves wet

Mindfulness means paying attention in a particular way,
on purpose,
in the present moment
non-judgmentally.
~ Jon Kabat-Zinn

You can’t stop the waves,
but you can learn to surf.
~ Jon Kabat-Zinn

Meniere’s and Psychological Distress

On By WendyIn Chronic Illness, Meniere's Disease12 Comments

wendy hair

When I was first diagnosed with bilateral Ménière’s disease by my doctor at Duke he told me two things that will always stick with me, “Ménière’s is one of the worst disease you can have that won’t kill you.” and its “a disease of random punishment.”  He compared Ménière’s attacks to living in a war zone, you know that you will be under fire at some point you just don’t know when.

Having a disease that makes you feel as if you could be attacked at any moment causes a lot of psychological distress.  A study conducted by Dr Kirby and Professor Yardley at the University of South Hampton found that those with Ménière’s Disease have a much higher incidence of post traumatic stress syndrome (PTSD), health anxiety and intolerance of uncertainty to distress than non-sufferers.

Nearly one in eight people with Ménière’s were found to meet the criteria for full PTSD, compared to the general population where just one in sixty has PTSD. The high levels found in Ménière’s sufferers are comparable with those found among people who have suffered a stroke, heart attack or heart surgery.

I’ve been diagnosed with PTSD.  I’ve known this for a while but it has never been as apparent as it has been the past month.  For the past month I’ve had very little vertigo.  The vertigo I have had has been minor and only lasted for a very short period of time.  Most days I’ve been vertigo free, but I haven’t been able to enjoy these days.  I am constantly expecting an attack at any moment.  I’m on edge, jumpy, irritable, anxious, argumentative….  I try so hard to enjoy the good days I have and put the bad days in the past, but that doesn’t seem to be working recently.  I have been taking advantage of this good spell a little but I’m on guard all the time, waiting for the ax to fall.  Waiting for that next vertigo attack.  Sometimes I deal with this much better than other times.  Right now, I’m a nervous wreck.

I found a test on line that ask many of the same questions my doctor asked me to get my diagnosis.  If you feel you might have PTSD you might want to take this test and then take your findings to your doctor to discuss it.  PTSD Test

additional reading and helpful sites:

Mindfulness Monday 10

On By WendyIn Chronic Illness, Mindfulness3 Comments
Buddha avatar
detail of Buddha painting by              w. holcombe

“When watching after yourself, you watch after others.
When watching after others, you watch after yourself.”
~ The Buddha

 

“Hatred is never appeased by hatred in this world.
By non-hatred alone is hatred appeased. This is a law eternal.”
~ The Buddha

 

Confessions of a Chronically Ill Deaf Woman

On By WendyIn Chronic Illness, Deaf4 Comments

confessions

I have some confessions that I thought some might relate to, they can be a little embarrassing to me, but I’ve decided to tell all.

I envy people who look sick.  It’s just hard to be as sick as I am and look completely normal most of the time.  Others have no idea what I go through.  I know on the outside I appear normal.  I know it’s hard for people to understand why I can’t do things.  Sometimes it’s hard for me to understand.  Sometimes I feel if I looked sick it would be easier.

I’ve played the sick card.  This is very hard for me to admit.  There have been rare occasions when I simply haven’t wanted to do something and I’ve said I was too sick.  Normally that is something that would make me sicker.  Something I might want to do, but I know if I do it I’m going to pay the price afterward.  So instead of trying to explain this it’s easier to just say I don’t feel well enough to go in the first place.  Now I do admit there have been very rare occasions that I simply have not wanted to do something and said I wasn’t feeling well enough.  I can think of one.  There was an outing with Stuart’s work and I knew I’d feel uncomfortable around all of those people so I played the sick card.  Stuart went and that was really all that counted, but I felt very guilty about saying I was too sick when I really wasn’t that day.

When I get mad at my husband sometimes I’ll “take my ears off”, ( I’ll, take off the processors to my cochlear implants) so I can’t hear him.  Yes when I get mad I act like a child.  “I can’t hear you, lalalala”.  I’m sure it infuriates him.  I’m acting like a child.  And at the time, I don’t care.

I’m addicted to the internet and I don’t feel that is a problem.  I am basically housebound.  I can’t leave without someone else.  I rarely go anywhere other than to the doctor or the occasional outing, that is normally just errands.  I don’t have friends close by since we moved.  Even before we moved I had very few that I saw on a regular basis.  I keep in touch with my friends through the internet.  I read, I write, I research, I email, even my TV is through the internet.  Some people may think I spend way too much time on the internet, I don’t think so.

I really don’t miss working.  If I’d had the dream job I’m sure I’d miss working, but truthfully I didn’t like my job.  I dreaded going to work.  I don’t miss it at all.  I don’t like the fact that I can’t work.  But missing my job?  No not at all.

I care what people think.  I keep being told, “who cares what people think?”  Well I do.  Why?  I have no idea.  I don’t like this part about me, but I really care about what people think.  I don’t want people to think I’m lazy, that I’m pretending to be sick, that I’m a hypochondriac….  Yet I don’t like to go out looking bad.  I don’t want people to think I can’t take care of myself.  I don’t want people to think my husband isn’t taking care of me.  I care what people think when they come in my house.  (as if so many people come in my house)  I care what people think when they ask me what I do and I can’t give them an answer.  I don’t “do” anything.  I even dress up a bit just to go to the doctor.  Especially my therapist.  She is a lovely woman, so put together, and I want to look all put together too.  So I actually dress up a bit to go to my therapy sessions.  How weird is that?

I often don’t know how to talk about anything other than health issues.  My life revolves around my health, and most of my friends have chronic illnesses and their life revolves around their health issues so we don’t have a problem talking.  But when I meet other people, when I need to make conversation with people outside of my chronic illness circle, I’m a bit lost.

Often I have no idea what someone just said to me, so I fake it.  When there is small talk being said and I miss part of it because I just can’t hear, I nod and smile a lot and hope I’m not smiling when someone just told me something sad.  It is way too hard for me to constantly ask people to repeat themselves, especially in a setting where I know I probably won’t be able to hear them anyway.  Often when I’m with Stuart I just stand there and smile and let him deal with the conversation.  It’s hard on me, not being able to participate, but it’s harder to struggle through it.

I love my recliner.  I never thought I’d be a middle aged woman who spends most of her time in her recliner, but I do.  I love this chair.  I got it when I got my hip replaced, I don’t know what I did without it!  I get through my vertigo attacks much easier in the recliner, I don’t have to lie all the way down, I don’t have to sit all the way up, it’s just so much easier.  It’s my comfort spot, it’s where I write, read, watch TV….and that’s okay with me.

I don’t shower of bathe regularly.  Taking a shower or bath is an ordeal.  I have a safety issue with both.  Taking a shower is harder for me because I often get vertigo when the water hits my head, even using a shower seat with a hand held shower head doesn’t solve the problem.  Taking a bath is easier, but it’s much harder to get in and out of the tub.  I’ve also had vertigo start with me in the tub a few times.  I have to have someone with me when I shower or bathe.  It takes a lot of energy out of me.  I often have to lie down and rest afterward.  I never thought I’d say that I’m lucky I have dry skin and hair but since I do it’s not that big of a deal if I don’t wash my hair for a couple of weeks.  No, I’m not gross, I do wash up.  But taking a full on bath, takes a lot.

Sometimes I’ll wear the same “clothes” for days.  When I don’t feel good I wear the same clothes for days.  By clothes I mean a tee and shorts or sleep pants.  I will move from the bed to my recliner and back.  Who needs to change clothes?  Truthfully, I don’t think I could if I wanted to.  But sometimes I don’t change clothes simply because it’s easier.

I’m hard to live with.  I get grumpy, grouchy, moody, bitchy….but I’m also loving, happy, joyful…. Let’s just say, I’m confusing.

 

Are there confessions you have?  Want to share?  Do you share some of mine?  I’d love to hear!

(photo by and of W. Holcombe.  All rights reserved)

Thoughts on Migraine Hypersensitivity

On By WendyIn Chronic Illness, Invisable Illness, MigrainesLeave a comment

Thoughts on migraine hypersensitivity

I found a post on Hearing Health and Technology Matters that I felt would be of interest to many of you.

Thoughts on Migraine Hypersensitivity By On July 18, 2016

“As the director of a balance and vestibular clinic, I see many patients with complaints of dizziness, disorientation, and motion sensitivity related to migraine. We work closely with our neurology colleagues in managing these patients. The International Headache Society has an official classification of “vestibular migraine.”

to continue reading this article please follow this link: http://hearinghealthmatters.org/dizzinessdepot/2016/thoughts-migraine-hypersensitivity/

Mindfulness Monday 8

On By WendyIn Chronic Illness, Mindfulness4 Comments
mushrooms
mushrooms by w.holcombe

“You have a treasure within you that is infinitely greater than anything the world can offer.” – Eckhart Tolle

“Happiness is your nature. It is not wrong to desire it. What is wrong is seeking it outside when it is inside.” – Ramana Maharshi

 

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