My first Experience with Vestibular Therapy

balancing by wendy

“Balancing”  gesture drawing by wendy holcombe

Your vestibular system is the ear part of how you balance. You balance with your ears, eyes, and your body/feet.  My vestibular system doesn’t work so good, so vestibular therapy is going to teach me how to balance more with my eyes and feet.

When going into vestibular rehabilitation physical therapy last Thursday I had no idea what to expect, and to tell the truth I don’t have any idea what to expect at my next appointment, but I know it won’t be easy.

Ryan is my therapist (I may see another therapist at some point, there are 2 vestibular therapist there, but I would prefer to keep seeing Ryan, because I can hear him pretty well, and he is understanding about how to talk to me so it is easier for me to understand him), I’m impressed with him so far…very impressed.  I’ve never had anyone be so aware of my condition and so understanding.  No one.

He did a number of tests on me, said some things we need to work on…like the fact that my ankles don’t bend far enough.  Ankle flexibility and strength seem to be very important. Of course that makes perfect sense when a huge part of your balance comes from your feet.

I told him my experience of having BPPV for 11 days this past summer but by the time I got in to see the doctor it stopped the day before, the doctor didn’t want mess with it then for fear of starting it again, so they didn’t actually do the test.  I explained that since then I’ve had trouble turning over in bed, and at other times, but I’ve been tested twice since then and it was negative.  He tested me…it was positive…it was slight, but it was there, he also listened to me about when the symptoms started, he didn’t just look at my eyes and when it didn’t start jumping around immediately say, you don’t have BPPV.  He really listened and payed attention.  He then did the Epley Maneuver on me and I feel so much better. (I want to note here that the Epley Maneuver does not treat every type of BPPV.) I will probably need to be treated again, but not being jarred awake by spins when I turn over is wonderful.  I get a tiny bit now and then, but it doesn’t wake me up.   Happy Dance!

There was a point in the test where he had me stand and close my eyes..I was VERY nervous….meaning inside I was freaking out, he asked me to take a step and I…well I just couldn’t!  He encouraged me and told he he had me and I wouldn’t fall (in my mind I thought, “yeah, this little guy is going to catch this big old woman…in his dreams!”.  Out loud I broke into tears and said, “I don’t do the dark.”  I should have explained, I’m not really that afraid of falling, yeah I might get hurt, but that isn’t nearly as scary to me as the vertigo, and the dark can trigger vertigo…I don’t do dark.

My anxiety is so high.  That is so not a good thing.  Anxiety can cause vertigo. Vertigo causes anxiety.  There’s a bit of a Catch 22 there isn’t it?  I have noticed I do not like it when someone says that I’m anxious.  (Yep, he said that)  I get defensive. I want to scream, “If you had this would you not react like I am?”  I feel like being anxious is a negative thing, therefore they are telling me that I’m not dealing with this as well as I could.  I know I’m much more anxious than I used to be, panic mode, almost constant fear…it’s hard, really hard.  (No, I have not been keeping up my mindfulness practice, and yes I started meditating again this week.)

It was a fairly long intake appointment, all the testing, background questions….he was surprised I hadn’t had this kind of therapy before.  That’s because, most of the people he sees have not been living with a vestibular disorder for this many years before getting vestibular therapy for the first time.  *scrunchy face*

He warned me that this isn’t going to be easy, that I will probably be nauseous a lot, but if I can hang in there it can really help.

My homework…when I got there he noticed that I don’t move my head much when I walk, so my homework has been to look around. Open my visual range, turning my head. Of course, always using my walker.

I had a pretty big vertigo attack that started on the way home, and I felt horrible the whole next day.  I even fell down, I’ve only fallen once since my hip replacement until now.  (Really I kind of slid down the wall, I felt myself getting really bad, so instead of trying to race to a chair or something, I leaned on the wall and just slid down.  I’ve found that to be pretty safe.)

I’m trying to do my homework and look around, but it’s hard, moving my head really makes me sick.

I go back on Thursday, yep tomorrow, we’ll see how it goes.

He wanted to see me twice a week, but we asked if I could go once a week with homework. Hubby has to take me everywhere and I’m trying to reduce the amount of appointments. His work hours can be flexible, but it’s much better if he works somewhat normal hours, and I don’t want to exhaust my poor husband, being a caregiver is hard.  Ryan said that he would give me plenty of homework!

 

 

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Migraines kept me away…let’s talk about it

It’s very hard for me to start writing again after I have been away for so long.  Especially after I wrote 2 posts that I am very proud of right before I had to go away.  Why did I go away?  Because my symptoms have been worse than usual.  Specifically my migraines.

Me with Migraine and Minor Vertigo...by w holcombe

Me with Migraine and Minor Vertigo                    by w holcombe

I won’t go into a lot of detail about what happened to me specifically.  Let’s just say, my migraines have been off the charts.  Lights hurt, Sounds hurt, Smells hurt….yes – Smells Hurt!  I’ve spent many days in the dark, without my cochlear implants on, filled with medication to make it so I wouldn’t throw up  (it didn’t always work), and some days I had to wear a mask to help keep out any smells that were coming in (and we keep our house as scent free as possible).  I’ve also had a lot of Migraine Associated Vertigo (MAV), or Vestibular Migraine, during this time. (you can read more about MAV on the Vestibular Disorders Association Site…just click here.)   I have chronic migraines.  Having chronic migraines means you have at least 15 migraines a month for at least 3 months a year.  (normally, you have migraines more days than you don’t)

A lot of people think migraines are “just a headache”, they aren’t.  So I’d like to take a little time to talk about migraines.

Headache migraines are moderate to severely painful, get worse with physical activity, are throbbing and often worse on one side, cause a sensitivity to light, sound, smell and last 4-48 hours (or more) without treatment.  If you have any of these symptoms, please talk to your doctor.  You do not have to have all of these symptoms to be classified with migraines, you can have a few.  There are also different types of migraines.  You might want to learn a bit about the different types of migraines…there is a list..here…with definitions and all that kind of stuff.

All the information I am sharing below comes from The American Migraine Foundation you can find out much more information there.

  • Migraine is an inherited neurological disorder.
  • One in 4 households has a member with a migraine disorder.
  • Migraine is 3 times more common in women than men, and will affect 30% of women over a lifetime.
  • The World Health Organization places migraine as one of the 20 most disabling medical illnesses on the planet.  Chronic migraines are even more disabling.  Yet it is almost impossible to get disability due to migraines.  If you have another condition and you can add migraines to it, they might listen to you, but when I filed, they were hesitant to even mention my migraines, even though they are extremely disabling.
  • Those with migraine are more likely to have depression, anxiety, sleep disorders, other pain conditions, and fatigue.
  • There is no cure for migraine. Treatments are aimed at reducing headache frequency and stopping individual headaches when they occur.  And constantly trying to find the right medications with the fewest side effects to help with this goal.
  • Prophylactic treatments (to reduce headache frequency) may include avoidance of migraine triggers, medications, physical therapies and behavioral therapies.  This is great if you can figure out your triggers.  Also, if your trigger is weather related, how are you going to avoid that?  I can’t stop the weather from changing.
  • Abortive treatments (taken when a patient has a headache) include over-the-counter pain relievers and prescription medications.  This is great, but you can’t take too many of these because they will cause medication overuse headaches (rebound headaches).  See more information below.  I am constantly aware of this and often afraid to take medication even though I’m in severe pain because I don’t want to go through withdrawal symptoms.
  • Prophylactic medications reduce headache frequency by 1/2 in only about 40% of patients who take these medications.  And the 60% just suffer??
  • Medication side effects often limit the use of migraine medications.  Oh yes.  I know this very well.  Severe itching, causing severe stomach pain, heart palpitations, constipation, diarrhea, tingling in my extremities, a change in what things taste like (the last two I put up with until the medication stopped working), Rocesea, low blood pressure…..It’s kind of scary sometimes isn’t it?

I only just touched on the surface of migraines.  There are many different types of migraines.  I haven’t even talked about all the symptoms I have.

I would like to talk a little bit more about the treatments.

Many of us cannot get the amount of medication we need each month because our insurance will only cover a certain amount.  Insurance companies will often only allow only 9 pills of triptans per month, this is an abortive medication.  Sometimes I have to take 2 when I have a migraine.  That would only cover 4.5 migraines.  If it covered 9 migraines that wouldn’t be as bad, but if you need to take 2 for a migraine, you are in big trouble.  This medication works best if you take it as soon as you feel a migraine coming on.  Everyone I know always waits until they absolutely have to take it because they don’t want to waste those pills.  This is so sad.  Ideally we don’t have to take more than 9 abortive medications in a month, but that is in an ideal world.  Of course, taking to many will cause medication overuse headaches….discussed below.

It’s best if you have a preventative medication, this will reduce or eliminate most of your migraines, if it worksUnfortunately, we haven’t found a preventative medication that works for me.  I have had some work for a while, then they stop.  We are constantly trying new things.  Until then, I’m afraid to take my medication, until I know my migraine is to the point I can’t deal with it on my own.  And that is often too late for the drug to work properly.  It’s a Catch 22.

We also have to worry about Medication Overuse Headaches, formerly known as Rebound headaches. Defined by the Mayo Clinic Rebound headaches (medication-overuse headaches) are caused by regular, long-term use of medication to treat headaches, such as migraine. Pain relievers offer relief for occasional headaches. But if you take them more than a couple of days a week, they may trigger rebound headaches.

It appears that any medication taken for pain relief can cause rebound headaches, but only if you already have a headache disorder. Pain relievers taken regularly for another condition, such as arthritis, have not been shown to cause rebound headaches in people who never had a headache disorder.”

For extensive information on Rebound Headaches,  The Migraine Trust has a great article titled Medication Overuse, it if very informative.  If you have headaches of any kind, and find yourself reaching for medication more than 10 days a month, I encourage you to read this article.  This can also include the use of caffeine.

Another issues migrainers face is that we are often labeled drug seekers.  I can’t even take narcotics.  I have had a migraine that has been so bad I couldn’t see and was throwing up, but would not go to the ER, because I know how so many friends have been treated so poorly there.  They have put them aside and just tell them they aren’t going to give them any drugs.  I don’t want narcotics.  There are specific migraine medications that I want.  Luckily, my doctor has taught my husband how to give me those shots so I have them at home.  I’m in the minority, I’m a very lucky patient.  I am able to see a neurologist who specializes in headaches.  There are very few of these doctors.  Most people with migraines have to go to a neurologist who see people with many types of neurological conditions, my doctor is very specialized.  All she does is headaches.  It’s great.  She is working very hard to get my headaches under control.

There is a great infographic that gives wonderful information on Migraines here, and another on Chronic Migraines here.

That’s all I have to tell this time around.   I have a lot more I’d like to share….not about migraines, at least not right away *smiles*, I hope I can come back very soon.

If I don’t get back before tomorrow…oh who am I kidding, I’m not going to get back before tomorrow….

I wish you all a Happy Thanksgiving!  And I want you all to know how very Thankful I am for you.  You are pretty darn special to me.

Things you CAN do for someone with an invisible illness:  (with special notes about me)

Caring Hands. Photo by w. holcombe

Photo by w. holcombe

OK…I’ll be honest, I don’t know what every chronically ill person wants you to do for them, but I know a lot of chronically ill people now.  Frankly if I didn’t have the chronic community I would be a terribly lonely person.  That is one of the major problems with the chronically ill, especially with people like me who are mostly house bound, we become extremely lonely.  Ah…but that could be a whole other post.

The list below includes things I’ve heard from chronically ill friends, most people I asked said the same kind of things that I thought, most of the things revolve around us being lonely.  Hmmm…  Perhaps that should be a post, huh?

This list starts with suggestions from the list on Indisposed and Undiagnosed blog, if you haven’t read her post on What not to say to someone who is Chronically Ill…don’t forget to jump over there and do it…well..go ahead, it isn’t that long…I’ll be here when you get back…………………………………………………………………………….See…it was worth it wasn’t it??  She’s pretty cool.  I thought you’d like her.

Here’s a list of just a few things….with notes about how it pertains to me.  Of course, this is my blog….who else do you expect to hear about.

Keep in touch with them.

We get lonely.  No matter how well we deal with this new life, it gets lonely.  (a call is great for most)  Just a text or email every a week or two….heck every month.

I can’t talk on the phone…these things would mean the world to me.  A real message on Facebook and not just a .. “wish I could do something”. “hope you are feeling better”…would be great.  Just chat for a moment.  But realize, I do not normally get to talk to anyone other than my husband, so I might talk too much…just tell me you have to go…I more than understand.  Please don’t start to avoid me because you can’t get rid of me.  🙂  Also, if I start to feel ill when we are chatting and I suddenly have to do not take it personally.  I really am getting sick, I am not avoiding you.

We just want contact, it really means the world to us….to me.  If you could just take a moment to drop me a line saying hi…and telling me something that is going on in your life…that would thrill me.

Asking how they are…..(this can be tricky…)

Now, this is a tricky one.  If you really want to know more about their illness and how things are going with their treatment and what is going on….then ask.  But if you just want to know how they are doing that day, then ask that.  Be careful how you word this question, or you may get more information than you want and you might get scared away.  If you are uncomfortable with the information you are hearing, talk to your friend.  Discuss this, try very hard to not let this come between you.

However, please realize that for someone who is chronically ill their illness is often a huge part of their life.  You may have to hear somethings about it.  If not about how they are feeling or treating it, but about their chronic illness friends, how they have become advocates for their illness…ect.   To be friends with someone with a chronic illness is to accept they are still your old friend, but they have a new world too.  The biggest thing is….we are still the same people.  We are not our illness.

If you can deal with it, it would be wonderful if you could just listen sometimes.  Often we have no one to just listen to what we are going through. No one to just talk to….who can just give us a hug.

I have my dear husband, but I don’t want to unload on him all the time.  I have my virtual friends, who I depend on so very much.  However, it would be mean so much if I had a friend I could sit and talk to sometimes, who would just listen. Not try to fix anything, just listen…maybe see me cry…and give me a hug.

Talk to them about your life.

We still love our friends.  We want to know what you are up to.  More than the Facebook updates.  We miss our little chats….gosh I know I do.  I used to be the person my friends came to when they were having problems.  I was the confidant.  I was the person people leaned on.  Now, people don’t want to “bother” me.  I want to be bothered!  I want to feel needed.  I want to be a part of the world….even if I can’t go out in it.  I’m still happy for everything my friends do, I’m not jealous that I can’t do them. (sometimes I miss them, but I’m not jealous) I feel happiness and love every time I hear about wonderful times my friends were able to have…..I know not every chronically ill person feels this way, you have to know your friend.

But mostly for me, I really miss good friendships.  The kind where we just talk easily.  We tell each other what’s going on in our lives and it isn’t judged or rushed or anything.  We just want to be in each others lives.  We depend on each other.

Ask if there is anything they need.

Many chronically ill can’t get out and get just the necessities some times.  I’m lucky I have Stuart.  But I have many chronically ill friends on line who really need help with these things.  Just ask.  It won’t take much to run by the store and pick up some toothpaste or a few groceries…just pick them up when you are getting your things.  It could really mean a lot.  (note, many people are embarrassed to ask for help on this.  It would be really nice to make up a “care-package”.  Next time you visit look around and see what kind of toothpaste they use, shampoo…ect..and grab them some, and make up a package, with some cans of soup or something….how cool would that be??)

For me….I’d really love it if people asked my caregiver what he might need.  And acknowledge what he does….to him, not to me.  I think caregivers are some of the most unrecognized people on earth.  (yes, I should write a post about that too.)

Another thing I need is a ride to places.  I know that is impossible for most of the people I know, since we moved.  But for others out there, many people need a ride to the doctor.  I know way too many people who drive to the doctor when they should not be on the road because they have no one else to drive them.  Or who miss very important appointments because they can’t drive or get anyone to take them.  Stuart had to rearrange his schedule all the time so he can take me to appointments.  No one has any idea how many times I go to appointments.  It is crazy.  Every week there is something….I normally have at least 2 appointments a week.

—  Visit them.

I’d love a visit sometimes.  Unfortunately, sometimes I would have to say no, because I just feel awful, but I’d love it if you kept trying.  I’m alone sooooooo much.  And the only person I really ever see other than my doctors is Stuart.  I treasure seeing people.  Be patient with me though.  If I’m having a very bad hearing day, it is very difficult for me.  I’d love it if I felt well enough that we could get out of the house…of course noise would have to be a factor as to where we could go.

I hate it sounds like I’m putting all of these restrictions on coming to see me…..when I desperately want to see people, I’m just always afraid I’m going to scare people off and they won’t come back.

We moved closer to some people I love very much.  We saw them a bit when we first moved here, now not at all.  I think I’m a bit too much to handle.  Another case of, it would be much easier if I could go to gatherings and such, just be included in things they are doing, but it’s hard to make special arrangements just to see me, especially if it’s just for a little bit.

Including a chronically ill person in your life takes a lot of extra time….I realize that.  It’s okay….just drop me a line, a text…I still love you.

Don’t stop inviting.

When I asked a lot of people what people could do for them…I got this answer.

Please understand that we will often have to decline invitations, we often just won’t be able to show up….but please don’t stop inviting us.  It shows us that you still love us, and want us to be a part of your world.  You still believe we are a part of your world.

We want to be there.   Sometimes we might be able to come…who knows.

If I can’t go, I’d love it if you shared your experience with me sometimes…..show some photos…what a great time we could have just talking about the event I missed.

Offer specific forms of help.

Again, we are often too proud to ask for help.  We also have a very hard time when someone says….”If I can help in any way, let me know.”  Well, I’ll tell you, we probably aren’t going to say anything.

If you really want to help…offer something specific.  Like…”I’m going to the grocery store, can I get you something?”, “Hey, while I’m visiting, how about I throw in a load of laundry for you?”, “Can I make up some freezer meals for you?”  (yeah I know that’s a biggie…but you get the idea)   Offer what you can do.  We won’t ask you to do just anything.  We do not want to put people out.  We have no idea what your idea of “helping in any way” really is.  You see, we already feel like a burden, we aren’t going to burden people even more by asking for things.

For me, and probably for others…you may have to just do things, don’t even ask.   Come over to your friend’s house, and just tell them…you want to clean for them that day….and just do it.   Yes, I might feel a bit uncomfortable, but you know what?  That would go away really quick, because it would mean the world to me.   Or just bring over dinner.  (make sure you find out if the friend now has dietary restrictions)  Cooking is the biggest problem for a lot of people with chronic illnesses.   I know it is around my house, and I have a lot of dietary restrictions now.

Help with the kids.

No I don’t need this one…but many people do.

So….offer to help out with the kid’s.  Give the chronically ill person a break.  Take them for the day, or when you visit, you take all the responsibility for them….anything that will help.

If you have kids, I’m sure you can figure this one out.

Learn about their illness….and believe.

Many times when someone gets chronically ill, especially if it is an invisible illness, people have a hard time believing they are as sick as they are.  It’s sad, but true.

It would be wonderful if you learned something about their illness, and always believe….even if your friend is one of the many who are sick and the doctors can’t figure out exactly what is wrong.  Never doubt they are sick.  Always be supportive….which brings me to the next thing you can do….

—  Be supportive…..care.

Once I wrote a post and in a comment someone wrote at the end…..”I care”  and I burst into tears.  I didn’t know why.  I only knew this woman from our blogs.  But I felt she really did care.  Sometimes you just really need to feel that someone really cares.

Sometimes we really do need someone to just unload on.  I think I handle this illness thing pretty good, most of the time, but then something will happen and it all comes tumbling down….that’s when I really need a friend to just listen.  Not to try to fix things, not to do anything really…but just listen and support me.   Try to understand.   I don’t want pity.  I just want to vent….to a friend.  And have them really listen.

I hope if the situations were reversed I would be there for you.  I know I have been there for people in the past.  Maybe I didn’t stick around as long as I should have.  Maybe I also felt like they had too much on them and didn’t want me to “burden” them….when all the time they felt like a burden.  Maybe I felt like I was in the way, life got just too busy, life got in the way……we are only human, it’s understandable.

I know since I’ve gotten sick I’m much more empathetic to people in need, and sometimes I still don’t always answer emails in a timely fashion.  But I hope I never totally forget to answer one.

 

That’s just a few things that you can do.  I know some are repeated….I think they are important.   I know I’ve left out much.  The main things is….Don’t forget, your friend and loved one is still the person you have always known, they are just a bit different.  No, they can’t do a lot of the things they used to be able to do, they have a whole new dimension to their lives….you loved them before, there is no reason you won’t love them now.  

What You Shouldn’t Say To Someone Who Is Chronically Ill…and why you shouldn’t say them to me.

Shhh... photo by w. holcombe

Shhh…
photo by w. holcombe

I found a wonderful blog called Indisposed and Undiagnosed. (actually she found me first…and I’m so very happy she did!) She wrote a wonderful article about What You Shouldn’t Say To Someone Who Is Chronically Ill.  She has GREAT answers to her questions, and I think everyone should jump right over there and read her post!  She’s a fantastic writer and you will love her answers and suggestions on how to really talk to someone who is chronically ill.

Here’s her suggestions on what not to say….I wanted to list my reasons for why….

10. “It’s just a bad day”

I do have worse days than others….but it’s never, “just a bad day”.  I live with this every single day.  Even on the days I can do more, I live in constant fear that it will be stripped away.  I have to be aware that a severe vertigo attack could hit at any moment, I have to be prepared for the worse.  I know a cluster headache too could take over and have me writhing in pain, praying for death over that pain.  (they aren’t called suicide headaches for nothing!)  I also live with a chronic persistent headache that never goes away.  I’m very grateful for my better days and try to take full advantage of them…but I never have “just a bad day”.

My bad days are severe.  I can’t focus on anything.  The world spins violently.  I throw up…a lot.  I’m often in pain at a level of 9 or10 on a scale of 0-10. My bad days often end up in the ER.  These are not the days I show many people.

9. “Have you tried…” // “You should try…”

Unless you have what I have….please try not to go here.   When you do have what I have, we can compare notes, but normally I’ve tried all of that too.  However, I don’t mind talking about it….unless you are trying to sell me something, or really think what you are telling me is going to “cure” me.  There is no cure.  If you think it might relieve some of my suffering, by all means talk to me…but don’t talk down to me.

I’ve tried so much, you have no idea.  I’ve also had many reactions to things I’ve tried.  And yet, I’m still searching and trying new things.  I have to be careful, I have a lot going on, I am not going to compromise my health by trying something that my doctors don’t okay first.

8. “Come out with me and you’ll feel so much better”

This may be said with the best intentions, but I won’t feel so much better.  I might end up feeling worse. But that isn’t to say that some days I might want to get out.  Some days I really want to go out.  However, you have to be understanding if I say I have to go home…NOW!  And we would only be able to do the most gentle of outings.  In a quiet place…unless you can be very understanding about my hearing.

The thing that I’d much rather hear is…..”Would it make you feel better to get out for a while with me?”

I normally can’t go out and do much.  A visit would often be better, just sitting with me and telling me about your life would be great.

7. “At least you don’t have…”

I used to think like this, but I can’t compare how I am to others.  I am very compassionate to everyone who has any kind of illness….they have their fight…and I have mine.   I was told by my doctor when he diagnosed my vestibular illness… “I think this is one of the worst diseases that I know of that will not kill you.  However, sometimes you will probably wish it would.”   I’m not saying that for pity, it is just the way it is.  No I don’t have certain diseases that can be much worse….and I am very grateful for that.  If I sat around and only thought about…at least I don’t have ______.  It would drive me crazy with guilt for feeling any suffering over my illness, and that would be impossible.  Yet, my illness has made me much more empathetic toward others who are ill.

I must be gentle with myself, I know this is a hard road to live on, and carry on the best I can.

6. “You need to stop being so negative”

I try SO HARD not to be negative.  I try to keep…not so much a positive outlook, but a realistic outlook….and I do not sit around feeling sorry for myself.  I accept how my life is, and try to make the best of it.  Sometimes that is damn hard, and yes I can be a bit negative, I get depressed, and overwhelmed.  Wouldn’t anyone?

I don’t have many people to talk to, my dear hubby is the only person who really hears it all.  When I see friends and they ask about things, they may hear more than they want.  I don’t mean to sound negative, I’m really just telling things the way they are…just the facts.  And unfortunately, when you asked, I thought you wanted to hear about it.

Imagine if you had a stomach bug and a bad headache for over a year….wouldn’t you feel a bit negative sometimes, and need to complain to someone every now and then?  Well I’ve had a lot more than a stomach bug for and for longer than a year…understand a little?

5. “You got this because…”

I’ve heard this one a few times….I think I kind of ignore it.  I mainly hear things like this from people who are trying to sell me something to “fix” me.  Other people, I think….really?  I’ve been to how many specialist who can’t figure it out…what makes you think you know?  Now, I do hear it from people who have diseases, trying hard to figure out why they have it.  I went through that.  Why me?  Then I realized…Why not me?

What really bothers me is when I have a vertigo attack, severe migraine or really bad day and people say….”What caused it?”   Really?  Do you think if I knew that I wouldn’t avoid it?

Or they try and figure out what caused it…..Okay, yes these things can have triggers, but most of the time, I have no idea.  The only thing I have figured out that really bothers me is the weather and we sure can’t control that.

4. “So, what’s wrong again?” // “You’re still sick?”

This tells me you don’t think I really have a chronic illness that is not going away.  It tells me you don’t believe me.  It also tells me that you think I would play the “sick card” to get out of doing things with you.

Well, I am sick.  Yes, I am still sick, chronic means it is not going away.  I wish it would.  I want it to be something that I could just take a pill for and it would get better.  You probably get sick and it goes away in a little while, you have no idea what it is like to be sick all the time….and I am so very grateful that you never have to feel this way.

I hate being sick all the time.  I never know what may happen in the future, everything changes, maybe this will change, but the prognosis is that it isn’t going away.  I had to get used to it, I hope you can.

3. “You’re just exaggerating/making excuses/want attention”

I’ve never heard anyone say this to me….but I’ve been told it has been said behind my back.   Sad huh?

Well…..It hasn’t worked has it?  I’m alone most of the time.  I’m lonely.  I miss people.  If you are reading this and you think I ever did this….I promise I haven’t.  I really don’t want the kind of attention I get by being sick.  I don’t want attention from doctors, or platitudes from people.  I want to be able to have relationships where everyone feels I give as much as they do.  I want to work and play and live……just like everyone else.   But my life is different now.   It’s much different.   Some days, I’m okay with that.  Other days, it tears me apart.

Just know…..everything I say about my how I feel and about my illnesses are true.  I do not want special attention because of them.  I only want a life.

2. “But, you don’t look sick”

What exactly does sick look like?  No…really…think hard.  Of all the people you have known, all the movies you have seen with sick people, all the times you have been sick….did they all look the same?  Sick people look different.  We don’t all have sicknesses that show on the outside, all the time.

I try not to let people see me at my worst.  It scares me.  When I have a vertigo attack I am terrified, I do not want anyone near me who isn’t my husband or medically trained to see that.  I hide my pain as much as I can, if I can’t I need to be away from people.  Understand, when I’m at my worst you won’t see me, so of course, I don’t look sick when you see me.  You also have to understand, I may be gripping everything bit of will I have in my body to hold it together just so I can look good in front of you, so I can be as normal as possible for a moment, I don’t want to scare you away by looking as sick as I often feel.  I’m afraid you will never come back if I look too sick…..yet if I don’t look sick then you think I’m not…..it’s very hard to know what to do.

I usually get…..”You look so good!”  or “I’m so happy, You look Great!”  or worst  “You look like you feel so good”  ….. Most of the time this doesn’t bother me.  I don’t let a lot of people know how bad I feel.  It bothers me when someone close to me, who knows I have been having a very hard time, sees a photo of me and says one of these things….I suddenly think….Really?  You too?  You think just because I look good for this posed shot that I feel good?

1. “It’s all in your head”

I’m lucky, no one has ever said this to me.  Of course, I’m not sure if anyone has ever said it about me.

I love the answer that Indisposed and Undiagnosed gave….it is so true:
“The only thing I can say to the people who have used this line before is;

Yes, it is all in my head.

I used to feel so hurt when someone would say that to me, but then one of my specialists told me that, it really IS in my head. It stems from the brain, which controls our entire body.
It might be my brain, it might be an organ, but whatever it is; IT ISN’T DOING WHAT IT IS MEANT TO BE DOING.
So, do not feel ashamed or upset, and most certainly do not second guess yourself if someone ever says this to you.
It really IS all in your head (hehe).”

Be sure to go to  Indisposed and Undiagnosed and read her suggestions thing you CAN do for people with Chronic Illnesses.

I’ve decided to make that a separate post….I have a lot to say…haha

** Please note**  I do not blame any person for dropping out of my life.  It is hard to stay in touch with a chronically ill person.  Especially in the beginning when they are so hurt and it is so consuming.  After that, it is even harder to come back in.  Life changes, I understand that.  For those who may want to communicate with me on any level, I welcome you.  Being chronically ill and mostly housebound is a lonely life sometimes.