Category: Invisable Illness

Some things are hard to talk about. Pocrescophobia

On By WendyIn anxiety, Chronic Illness, Eating disorders, Invisable Illness19 Comments

I’ve been struggling with something for a while and I’m not actually sure I feel comfortable talking about it, but there may be someone else out there struggling with the same thing who needs to know they aren’t alone.   I have an intense fear of gaining weight.

*****this post talks about eating disorders, this may be a trigger for some of you, please take care of yourself and read (or not) accordingly*********

As many of you may know, I lost 45 pounds in 2017.  This is something I have been trying to do for a long time.  I gained a lot of weight when I first got sick, on top of losing my independence, suddenly my body no longer felt like mine.  I weighed 225 pounds at my heaviest, and I didn’t recognize myself.  (I’m barely 5’5″ tall)  A few years ago I found out that I have Fructose Malabsorption and went on the appropriate diet to help with that, and at that time I lost 45 pounds, and kept it off.  However, I was not happy with my weight.  I was still overweight and it ate at my self esteem.  I tried and tried to lose weight over the last few years, but it just didn’t come off.  I had my yearly physical last year on December 30th, and at that time I weighed 182 pounds.  I was determined to lose weight, but I really wasn’t sure I could do it, and I was ashamed that I hadn’t been able to do it before.  Then I was put on a medication for my migraines that reduced my appetite.  Suddenly I was able eat much less and not feel hungry.  (Normally I feel hungry often.)  I lost weight, it came off slowly, but it steadily came off.  By the time I had my yearly physical last month I weighed 140 pounds.  (140 lbs at the doctor’s office, at home I weighed 135lbs)  The medication stopped curbing my appetite, now I’m fighting hard not to gain all that weight back.  I was able to bake for the holidays this year for the first time in many years, but I didn’t just bake, I ate, and I have been terrified that I’m going to gain….and gain…and gain, yet I can’t seem to stop eating.  I’ve gained about 5 pounds.  I know how quickly those 5 pounds could turn into 80+ pounds, and I’m desperate to not let that happen.  So many people will say that 5 pounds is nothing when you gain weight, they tell you not to worry about it, it’s really not that much, but those same people will tell you how great it is when you lose 5 pounds, how that’s a lot of weight to loose….  How can both of these be true?

When I lost the weight this year I found myself in love with my body for the first time since I can remember, if I ever felt that way at all.  I accepted that this body was not as I wished it would be.  Let’s face it, a 54 year old’s skin doesn’t really shrink back when you lose weight, but I was happy with what I saw, I loved all of me, saggy skin, cellulite, and all.  However, even though I felt that way, I was still terrified of gaining the weight back.  At one point, I went to the grocery store and started to buy some gluten free flat bread to make a pizza with, when I saw the amount of calories it had per serving I broke down in tears.  I was paralyzed with fear.  I simply stood there and cried.

Now, I see myself as fat.  I can see that I’ve lost weight, but I also see where I’ve gained some, and how much more I need to lose.  (10 pounds seems to be as hard to lose as 50)  I see photos of me and I think I look pretty good, then I look in the mirror and know that isn’t true; it takes a lot of effort to look good for the photos, on a day to day basis, I don’t look like that.  I look down at my body when I’m sitting in the living room and I’m appalled by the rolls of fat on my stomach, the bulges I feel under my arms, (back fat is not attractive), and the drooping of my breast.

I feel better since I’ve lost the weight.  I can get up from the floor easily.  I can walk further than before.  I go out with more confidence (most days).  I love wearing smaller sizes.  I think I look good…..sometimes.  Other times…well I covered that haven’t I?

I’m scared.  I’m terrified of gaining weight.  This is an intense fear, yet I can’t seem to stop eating.  I’m hungry all the time.  I’ve had a love/hate relationship with food for a very long time, my whole life really, I don’t want to go into detail about my past, but I need to let you know this isn’t the first time I’ve struggled.  Now it is even more confusing.  My weight seems to always be in a state of flux.  Since I was able to keep most of the 45 pounds I lost, I was encouraged that I would be able to this time, I’m afraid that isn’t the case.  I’m afraid I will need to track every thing I eat to make sure I don’t over eat or under eat.  I’m afraid I’ll need to exercise as much as possible in order to keep the weight off, but that is physically impossible because of my health, and I hate myself because of it.  I’m afraid I’ll fail and the weight will come back.

I’ve been trying hard to not eat as much, and to eat nutritionally dense foods; this hasn’t happened, instead I’ve been going overboard on sweets and cereal, and I beat myself up over it.  The guilt and fear is so great that I have tried many times to make myself throw up. (I can put my finger all the way down my throat and not throw up.)  If I could just get it out when I eat too much, I know I would feel better, I would be back in control.  No, it wouldn’t take away the guilt (I’m sure it would cause more guilt), but the fear is stronger than the guilt.  I’ve exercised to the point of absolute exhaustion (not regularly).  I have taken laxatives when I feel I’ve over eaten (not often, but I have).  I suffer from chronic constipation and get obsessed with how much that makes me weigh (how much extra weight is in me), laxatives help.  I try hard not to have them in the house, so I won’t abuse them.  I’ve actually been happy when I’ve had intestinal distress, because it’s a sure way to lose weight.  I’ve wanted surgery to make me look better.  These actions and thoughts scare me.

I will work on these things.  I may go back into therapy, but first I am going to try to deal with it on my own.  As many of you know I can’t drive because of the sudden attacks of vertigo I have, this makes it very difficult to get to therapy sessions.  Stuart has to juggle his work schedule to drive me places so we try to keep my appointments to one a week, two at the most; if I have therapy every week how can I go to any other appointments?  I just want to handle this by myself if possible.

I don’t think I have a full fledged eating disorder, yet.  I do not avoid meals.  I eat when I’m hungry, even if I feel I shouldn’t be hungry.  I have not been tracking every calorie I put in my mouth. However, I do plan to, to make sure I’m not over or under eating, and I will admit, to loose a few pounds.  I’m not avoiding foods, I do plan to cut sugar out of my diet for a while, but that’s not a bad thing, right?).  I normally do not eat so much that others would find it unusual. (however, I feel it is)  I do not purge, but I do admit, sometimes I would if I could.  I have a lot of fears and I can see that my actions have been changing because of these fears.

I have Pocrescophobia (the fear of gaining weight); I know this fear could lead to serious health issues, I know it is causing extreme anxiety for me, and I know it is hurting the people who care about me.  I will get a handle on it, if I can’t do it alone, I will start seeing a therapist and talk to my doctor.  (I promise)  Right now, I’m simply trying to be open and honest about this.  I’m asking you to not judge, or worry about me, I simply ask you to be witness to my fear and support me while I deal with this.

I do wonder how many people who have a chronic illness struggle with these feelings.

For further information, or help, I’ve listed a few organizations that deal with eating disorders:

 

Advertisement

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/

I Give Myself Permission to …

On By WendyIn Chronic Illness, Chronic Pain, Invisable Illness11 Comments

I’ve been participating in a Chronic Pain and Illness photo project.  I participated in the same group last year, you can see those photos on these posts: Chronic Pain/Illness Photo Project, Chronic Pain/Illness Photo Project 2015 Week 2 , and Chronic Pain/Illness Photo Project 2015 Week 3.  This year I’m sharing a few photos here and there, not the whole project.

I’d love to hear your take on this topic.  What do you give yourself permission to???

Today – I give myself permission to Cry.

My x-rays showed more degeneration in my neck. C5-C6
The pain is intense. It just hit me that this is only going to get worse. The pain will always be there.

My father is in the hospital. I can’t go. I can’t ever go.

Today I give myself permission to cry.

(photo taken today, I manipulated it with photoshop, but the tear is real.)

crying

Grief and Acceptance

On By WendyIn Chronic Illness, Chronic Pain, Invisable Illness19 Comments

When people think of grief they often think of death, they don’t think about grieving over other significant losses.  Those of us who have had major losses due to chronic illness know all too well that we grieve those losses.

The five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying” are: Denial, Bargaining, Depression, Anger, and Acceptance.  Kübler-Ross describes these stages as being progressive, you needed to resolve one stage before moving on to the next.  This is no longer thought to be true.  It is accepted that most people who have loss go through states of grief but it is not linear nor is it finite.

The The British Journal of Psychiatry Nov 2008, published a study on grief and acceptance.  The authors note that “disbelief, yearning, anger and sadness may represent aspects of a single underlying psychological construct – grief.” “Grief and its associated features may largely reflect an emotional inability to accept the loss of something cherished.” “Acceptance, by contrast, may represent emotional equanimity – a sense of inner peace and tranquility that comes with the letting go of a struggle to regain what is lost or being taken away.”

Eckhart Tolle Quote

Often people think of acceptance as being okay with what happened.  That is not the case. Most people never feel completely okay about a great loss.  Acceptance is about accepting a new reality. This is the way life is now, it is the new norm, our lives have been forever changed and we must adjust accordingly.  At first finding acceptance could be just having more good days than bad.  We can never replace what has been lost.  However, we must listen to our needs; we change, we evolve, we accept.

Once you have reached a good level of acceptance this doesn’t mean you can’t feel sad again.  We are constantly reminded of our losses, when these reminders arise we can find ourselves feeling grief again.  It’s at these times that our acceptance is most helpful.  We may feel our losses, but we know there is life after.

I accepted my losses long ago, however, feelings of grief do come flooding back from time to time, especially if I lose something else.  When one is chronically ill, we often find we lose more things as time goes on, even when those losses have nothing to do with our illness it can bring back all the emotions from our previous losses.

For example, in the last 2 years I’ve had a number of new losses.  We had to move because my husband found a job in a new city.  This move caused me to lose my home, my neighbors, more friends, and my doctors.  Then a new diagnosis that causes more pain and loss of range of motion was another huge loss.  The losses just seemed to keep adding up.  I have more grief that I have to work through.  Simply because we dealt with our previous losses does not mean our new losses hurt less, or that we don’t need to grieve.  However, it does mean that we now know that acceptance will help us deal with our losses, and give us the ability to move on.

I should point out here that prolonged intense grief can produce a physical or Prolonged Grief Disorder.  “Prolonged grief disorder require bereaved individuals to have severe levels of yearning, and five of the following nine symptoms for ≥6 months post-loss: disbelief and bitterness over the loss, confusion about one’s identity, an inability to trust others, numbness … and feeling that life is empty and meaningless since the loss, difficulty accepting the loss and moving on with life, and feeling stunned by the loss.” (Holly G. Prigerson, Paul K. Maciejewski – The British Journal of Psychiatry Nov 2008)
  Based on numerous findings of maladaptive effects of prolonged grief, diagnostic criteria for Prolonged Grief Disorder have been proposed for inclusion in the DSM-5 and ICD-11. 
There is a great article at Psych Central on the 5 Stages of Loss and Grief, here you can also find a quiz to help you decide if you are suffering from complicated grief.
If you feel you are suffering from complicated grief I urge you to seek professional help.  It can get better.

6 Signs Your Symptoms Could be a Vestibular Migraine

On By WendyIn Chronic Illness, Headaches, Invisable Illness, Migraines, Vestibular Illness9 Comments

migraine eyeAs I’ve written about before, I have vestibular migraines, with Migraine Associated Vertigo (MAV).   It is hard to diagnose this type of migraine,it’s also very difficult to figure out if your vertigo is coming from MAV.  I came across this article the other day and thought it was worthy of sharing.

6 Signs Your Symptoms Could be a Vestibular Migraine

Following are the Symptoms they talk about, please go to the actual article to read about each of these in detail.

1. You have a personal or family history of migraine.
2. You experience vestibular symptoms in the presence or absence of a migraine headache.
3. Your vestibular symptoms vary in their severity over time.
4. In an episode, you experience other classic migraine symptoms.
5. Your symptoms increase with exposure to known migraine triggers.
6. Your vestibular symptoms significantly reduce your quality of life.

From this article there is a link to a blog post on My Migraine Brain that I found interesting. Valerie’s Vestibular Migraine

I hope you will find this as informative as I did.

If you have any questions about my experience with vestibular migraines and MAV, please ask.  I’m happy to keep the conversation going.

Hey Doc…What the……?

On By WendyIn Chronic Illness, Health Care, Invisable Illness, Meniere's Disease24 Comments

I went to the new ear doc to get the results of the vestibular testing, and I felt like I walked into the Twilight Zone.

twilight_zone
link to source

He walked in the room with his too big smile, shook my hand and told me something about the test…that didn’t make a lot of sense.  He said that it showed that I had reduced cochlea function in both ears.  That at my age he would expect it to be a 21, but my right ear is a 4 and my left is a 13.  I asked…”What does this mean?”  He said that it meant that my cochlea wasn’t working as it should in my ears…well duh.  I repeated, “Yes, but what does that cause?”  “It means you have vertigo.  And you might have this thing called Meniere’s”

WHAT??  I MIGHT HAVE WHAT?  DO YOU KNOW WHO I AM?  YOU DON’T REMEMBER ME?  YOU DIDN’T LOOK AT MY CHART BEFORE YOU CAME IN THE ROOM?

Okay, another reason that whole thing was weird….cochlea function refers to hearing.  My cochlea is not going to show up working on any test, I have cochlear implants, I have a device in my head that is coiled around my cochlea that vibrates so I can hear.  It doesn’t work on it’s own.  And the tests I were given doesn’t even test that.  But the numbers he gave me do correspond to the main test that I was given.  That was just so weird.

He also talked about a hearing test I had last February, I told him I didn’t have a hearing test last year.  He argued with me and pointed to the computer and said, that it said the tests showed my right ear had severe to profound hearing loss.  I looked at him and took off my Cochlear Implants and showed him and said, “I have Cochlear Implants, why would I get a hearing test?  However, I do have some residual hearing in my right ear, but…”  and he interrupted me and said….”That’s impossible, if you have Cochlear Implants, you can’t have any hearing…blah, blah.”  Stuart tried to explain to him that with the newest CI’s you often keep any hearing you had…he still argued.  Dang-it, I think I know if I can hear or not!  When I told him that I wouldn’t need a hearing test I saw the nurse point out to him that the date on the hearing test was not from 2015.  It was 2014, shortly after my CI surgery….of course he didn’t put that together, that I can hear out of my right ear, a little bit.  And he did not admit to us that he got the date wrong.  It’s also very sad that the audiologist that gave me the test knew that the new CI’s are often allowing people to keep some of their residual hearing, she was not surprised that I can hear a little out of my right ear.  (I want to explain, I can only hear a certain frequency, I can’t hear much.  For example, I was sleeping through the fire alarm at the hotel in December, yet Stuart said it was hurting his ears.  So it isn’t much hearing, but there is some there.)

Finally, I got tired of dealing with him.  I asked him a couple of questions, which I don’t really trust the answers to now, then I said, “So the plan is, I start Vestibular Rehab, I keep working with my migraine doc to get the migraines under control, keep up the low sodium diet, and taking the Valium twice a day.  After I go through the Vestibular rehab we will talk about the gentimiacin injections.  That’s the plan.”  Then I stuck out my hand to shake his.  In my mind he was dismissed.   He just had that plastered on smile like he had the whole time, and shook my hand and said, “That’s the plan.”

I saw no reason to spend any more time with that man. It was obvious he did not review my chart before he came in the room.  I do not understand how he could not remember me.  He told me when I saw him last time that I am the most advanced case he has seen, and how many other patients do you think he has that have been to Duke and John Hopkins?  Plus, Stuart and me together are pretty darn memorable.  I have NEVER had a doctor make me feel like they didn’t remember me.  I “might have this thing called Meniere’s”…geez…are you kidding me?  He said a number of other things that just didn’t make sense…like, “I thought you had gentimiacin and it didn’t work.” He just said that I might have Meniere’s and then he said he thought I had gentimiacin injections?  dodododo

About the tests….well he only gave me the numbers for the biggest test they did.  The Caloric Stimulation Test.  (click on the link if you want to learn about the test)  This is used to for damage to the acoustic nerve (hearing and balance) and it test the brain stem.  It is the only test that test the ears separately.  The numbers he gave me fit right in on this test.  21 is normal.  He kind of dismissed the 13, I really didn’t understand that.  Of course, the one that is really out of wack is the right ear coming in at only a 4.  So, I’m thinking when we get to the point of killing off the balance center we will do the right ear first and see if it straightens things out, or makes it so much better I don’t feel I have to do the left.

Now for the big decision, what do I do about this doctor?  I really don’t trust him enough now to let him give me a shot in my ear that will kill my balance center.  Heck I don’t trust him enough to give me a B-12 shot.

What do I do?  I can’t find another ear doctor in this whole city that knows anything about Meniere’s except for the other guy I went to who thinks he is a god.  He doesn’t listen to his patients…at least not to me, and according to his ratings on-line and on Angie’s list, he doesn’t listen to most people…he didn’t believe I have vertigo as often as I do.  Really?  Does he think I use a walker just for fun?   Ugh…..I hear stories like this from so many people with chronic illnesses, we have such a hard time finding doctors who are compassionate.  I’m lucky, most of my doctors are wonderful, but I’m having a heck of a time finding a good ear doctor since we moved.

I found an ear clinic I would like to go and check out that is close to 2 hours away from here.  I have a list of questions for Stuart to ask them on the phone before I even think about making an appointment.  If they treat people like it appears they do on their website, I think this would be a very good place to go.  They are very well versed in advanced Meniere’s, and they aren’t afraid to treat it.

As you can see, I do believe in being an advocate for myself, but I know when I can’t burn my bridges just yet.  I’m also not afraid to fire an incompetent doctor and as soon as I find a new one, I promise this doctor will know why he is being fired and I will write a review on him letting others know what I think.  The group does have a good support staff, too bad he is the only one in that group that (supposedly) knows anything about Meniere’s.

 

The Future is Scary, with a side of Hope.

On By WendyIn Chronic Illness, Invisable Illness, Meniere's Disease, Migraines12 Comments

It seems appropriate that I’m writing this on the eve of a new year, what better time to look toward the future?

For me, contemplating the future is more than a little scary…. let’s just say my anxiety about it has been more than I ever thought was possible.

After my illnesses changed my life, I learned about Mindfulness Based Stress Reduction (MBSR), it struck me how it has helped many people in many aspects of life, but mostly I was struck by how much it often helped people who are ill.  I had already learned of mindfulness during my studies in Buddhism, and while practicing yoga, but I admit I didn’t practice it regularly.

Over the last few years I’ve learned more and more about mindfulness, as I continued to studied Buddhism and MBSR, I’ve worked hard to live my life in the moment.  I don’t dwell in the past, (all of that is gone)…. I don’t worry about the future, (that hasn’t been written yet)…I try hard to live in this very moment, because that is all we truly have.

Yes, at times I still have moments when I get upset that I can’t do what I used to, and get upset about what might happen…but I don’t dwell on it.

Then we started making plans… how we are going to try to make things better for me….decisions about this unknown future, decisions that I have to make. Suddenly, I HAVE to look at the future. I HAVE to think about it.  And it really scares me.  Suddenly, I’m scared about being like thbe mindful of the futureis forever.  I thought I had accepted that and was okay with it.  Not that I was giving up, just that I accepted things if they didn’t change.  At least that’s what I thought, but actually, I thought I was going to be like this forever, I had come to terms with it, and now, that may change.  Now, I suddenly have options….plans.  I am having a very hard time not being anxious about the future.  I’m even thinking about things from the past. I keep thinking about all that I can’t do now, and how much my life has changed, and I keep wondering, could I get some of that back?  The main thing I know is that, I don’t want to lose myself in this quest to get better.  I don’t want to be afraid.  If I don’t get better, I need to know that’s not the end of the world.  I don’t want to start having to accept all of this all over again.

Each day I have begun to get more and more upset about things I simply can’t do.  As usual, most days all I can do is go from the bed to the chair in the living room.  But I tried hard not to let this get to me before.  I tried hard to make the most out of every moment…no matter what.  I’m trying now….but I am not doing as well as I have been.  Then I hear the voice in my head….Be Gentle With Yourself.  and I Breathe.  I am doing the best I can.  Yes, I’m a bit overwhelmed right now.  Everything is changing, all of a sudden, it’s going to take me a minute to keep up with it….deep breath….and I must remember, it still has to happen one moment at a time.

Okay, let’s move on from this and let’s talk about what the plan for my future is right now.

I was going to write a post right after my visit with the new ear doctor here in town, but I decided to wait until after the tests and the results.  I was supposed to get those yesterday, but I had to reschedule my appointment,  guess who was too sick to go?  Surprised?  I’m not….I have cancelled so many appointments because of vertigo, you just can’t imagine.

So, I’ll give you a break down of what is going on as of now…..

I saw the new ear doctor here.  So far he seems pretty good, I was impressed with his knowledge about Meniere’s, and he is very willing to work with the doctor from John Hopkins.  He suggested I start taking a low dose of Valium twice a day to try to keep my vestibular system calm.  He wants me to keep track of how much Sodium I’m eating.  (Okay, I laughed at that.  I know I don’t intake much sodium but since I haven’t been keeping a record he was not convinced.  I have been eating a low sodium diet for years, I know how much sodium is in almost everything, I don’t eat processed foods, and if I eat out I order everything without seasoning….yes I know that is boring, but it is safe with all of my food issues.  So I tracked my food since I saw him, I admit I was curious too, the results?  I normally consume just under 1000mg a day, I haven’t been over 15o0mg in any given day.  They say a low sodium diet is 2000mg a day.  I don’t think I have a problem there.)   I’m starting vestibular therapy on January 12th, we’re going to start training my eyes and body to balance without my ears.  I am to continue working with my headache specialist to get my migraines under control.  We will talk more about killing off the balance center after doing all of this and seeing if it helps.   Also after seeing the results of the vestibular testing I went through, we want to see if one of my ears is close to being dead already, if so we may go ahead and kill that one off, it may be causing much more trouble than the other.

(just let me say, I’ve been through these tests before and it wasn’t so very bad the first time, this time, it was absolute torture.  I cried.  I am not that kind of person.  If my husband hadn’t been back there with me, I don’t know how I would have gotten through it.  The person giving the tests told my husband she thought I was suppressing, because some things that should bother everyone I was not showing too much of a response on.  I thought that was strange.  I didn’t feel like I was suppressing, but after I’ve been going through this for so long, I’m sure I automatically try to not have vertigo when it is coming on.  I didn’t throw up, I almost did, I had cramps like dry heaves were coming, but no vomit.  Yay!  it really takes a lot to make me throw up now.  I rarely throw up during an attack now.  I get really nauseous, but I rarely throw up.  I always thought it was the meds.  Heck it’s already ruined my teeth and caused burns in my esophagus, I’m very happy it stopped.  Anyway….I’m very interested to find out the results of the tests, and upset I didn’t get to go yesterday.)

He does think my Meniere’s is definitely autoimmune.  Not that I want an autoimmune disease, but it does explain a lot.  Most of my doctors have felt I have symptoms that lead to one, but haven’t been able to put their finger on it.  I just have so much going on, and everything gets worse with stress, and gets better with steroids.  I often run a fever and no one can find a reason.  I have a marker for an auto-immune disease, but the one I have a marker for I do not test positive for….however, that is a red flag that I could have another.  They believe they simply do not have a test for the autoimmune disease I have, or I don’t test positive for it.  Like a friend of mine, has rheumatoid arthritis, but he always tests negative for it.  It is visible on all scans and he responds to treatment, but the test for it comes back negative.  So, in other words, we can’t prove it, but it is thought that it is an autoimmune disease, at least in my case.

So, there is the plan for now.  I don’t know what will happen.  How it will change.  Or anything right now.

I feel that there will be a lot of change around the corner.

The future is scary, but it holds promise, and hope…..something I haven’t had in a long time.