It takes how long?

When you have a chronic illness chances are it’s an invisible illness, others have no idea what you have to do to get through the day.  With my illnesses some days I look sick, some days I can’t get out of the chair and you can tell, I’m sick.  Other days I can get it all together and don’t look sick at all.  It’s those days that confuse people.

I’ve learned that it takes me longer to do things than it does the average human.  There are many days that I can’t accomplish anything, but let’s not talk about those days.  I want to talk to you about the days I am able to do a few things.  The days I appear normal.

Yesterday I started to do the dishes.  The dishwasher needed to be emptied, and there were dirties that needed to go in.  For a normal person this would just take a few minutes.  I started to unload the dishwasher, I got the top unloaded and put away, then I had to rest.  I came back after a bit and started on the bottom, I put away the silverware, and needed a rest.  After about 30 minutes I went back and finished up putting away the rest of the dishes, and started loading up the dishwasher.  While loading it up I took 2 breaks.  Therefore, at the end of this it took me over 3 hours to unload and load the dishwasher.  At this point all I could do was make myself a cup of tea.  This was the end of my ability to do chores for the day.  No one would think that doing the dishes took 3 hours out of my day.  I must say that I’m okay with this.  I’m grateful I can do the dishes at all.  I only wish I could do them every day.

Last week I had an hour to take a bath before a TV show came on that I wanted to see, I thought that would be plenty of time.  Boy was I wrong.  I need to have help getting in and out of the tub because of my balance, that takes a little bit of time, but not much.  I started to take a bath as normal, a little rushed because I wanted to make sure and get out in time, but just a normal bath, then I got dizzy.  Very dizzy.  Try getting a soaking wet 135 lb woman out of the tub when she’s very dizzy, it’s just not that easy, but it’s something that happens a lot around here.  (the reason I am dirty a lot of the time 😉  Getting me in the tub, taking a bath, and getting me out of the tub, took over 2 hours.  Luckily I did have the DVR set for my show.  I know that getting dizzy in the tub is a fairly regular occurrence so I should never put a time limit on it.  But how many people do you know that can’t get a bath done in an hour?

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I don’t look sick.  Taken at a wedding, July 2017

Then there are days when I seem to be able to go non-stop.  Recently I had a weekend like that.  We went to a wedding a couple of weeks ago.  On the day of the wedding, I had my hair done, then I rested a little bit, then we had the wedding at 3pm.  The wedding didn’t actually get under way until about 4pm.  Luckily, I was just sitting talking with people.  After the wedding, we had the reception to attend.  On the walk over, I had a mini vertigo attack, because of my vertigo we didn’t intend to stay long and we had planned to have dinner with my sister and her husband.  Then I started seeing people I have known for over 40 years, and adrenaline took over, about 2 hours later, we were finally leaving  (know that all I did was sit and talk with people).  We went back to our hotel, changed and were off to dinner.  We were finally back to our hotel around 9pm.  I was going full out, all day long.  Boy was I beyond tired.  Not only was I exhausted from the simple physical exertion of it all, and the mini vertigo attack I had at the church, I was completely off kilter from trying so hard to hear all day.  (I did find out that my lip reading skills have improved dramatically.)  Of course, I couldn’t sleep due to painsomnia (insomnia due to pain).  There was only 1 station on the TV that would show captions (yeah, what was up with that?) so I was stuck for hours, watching something dumb, I can’t even remember what it was.  This trip was very enjoyable, I wouldn’t trade it for anything, but boy did it take a lot out of me.  It took a week or more to recover fully.  For a “normal” person they could have made the trip in one day.  It’s about a 3 hour ride (I can’t drive).  We could have gone down for the wedding and come back that night, if I were a “normal” person.  Instead we went down Friday night, so I would be well rested for Saturday, and we stayed until Sunday so I could recover as much as possible before the ride home.  I had a lot of support for this trip or I never would have been able to make it.  My neurologist (headache specialist) sent me home with a series of shots to be given over the weekend to help with migraines and cluster headaches, both of which have increased dramatically recently.   The specialist I’ve been seeing for my back called in extra meds for me for the weekend.  If these two doctors had not increased my treatment for the weekend, I would never have been able to go and enjoy myself.  I will be forever grateful.  While there my sister took me to have my hair done, she made sure I could understood everything, even though I couldn’t hear in the salon.  She then came back to our hotel and ironed hubby’s shirt.  Without this help, I don’t know if I could have made it.

To summarize: We don’t always look at bad as we feel, we often need to rest more often than what is considered “normal”, sometimes we have to have a lot of support to do things that “normal” people do without thought….and that’s okay.   We normally appreciate things much more than “normal” people.  We care deeply.  We can still live a full life, it’s just different than a “normal’s” life.  and that’s more than okay.

 

 

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Thoughts on Migraine Hypersensitivity

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 didn’t expect…

Sometimes you wake up and think it’s going to be a great day, and it isn’t.  Sunday was that kind of day for me.

First thing I cuddled with hubby when I woke and had a silly dog jumping on us all excited and playing, so waking up was loving and fun.  Soon that changed.

I’m not sure what the first thing was but the day became full of petty little arguments and bad feelings.  We would disagree, apologize then something else would happen and we’d disagree again, or we were just very short with each other.  I know I spent most of the day in a huff, or tears.

I tried to talk about what was discussed in my last therapy session….loss….and I got very emotional (read sobbing like a baby).  He did not react like I wanted.  Notice what I said, I felt he was in the wrong because he didn’t behave like I wanted, like I expected him to.  So who’s at fault there?  I think that would be me.  We aren’t hurt by people, we are hurt by our expectations of people.  And I think that is how the rest of day kind of played out.  We didn’t act the way the other person wanted, or expected and that caused bad feelings.

equanimity 6

This can happen with anyone.  If I admit it, that is what happened when I felt abandoned by my friends when I got sick.  I was so hurt, so angry, they didn’t react the way I expected.  This caused all my unhappiness.  That is why I was so hurt.  My friends did not react the way I expected.  What did I expect?  Visits, talks, help, I expected this and more.  People aren’t always going to do what we expect.  It doesn’t make them bad people.  We don’t know the reasons.  Perhaps my illness brought back bad memories, or fear over their own health,   Some people simply don’t know how to be a friend during these times or they don’t really want to be.  We have to accept this.  More than anything we need to understand that the hurt comes from our expectations, not from the people.  Does that make it hurt less?  Sometimes.  When a person I’ve loved for years and years disappeared after I got sick, it hurt.  It hurts more when I know I was there for the person when they needed me.  However, their need ended, there is no end in sight for my needs.  I will always be different than I used to be.  That’s a hard thing for any relationship to endure.  We loose relationships for a number of reasons, we fight, we move, we change jobs….  Not all relationships stay in our lives.  Things change.  We can look at friends we’ve lost since our illness took hold and think, “they showed their true colors”, “they weren’t real friends”… The truth is, they aren’t what we expected them to be and it is that expectation that causes us pain.

I can hear some of you saying, “They abandoned me, shouldn’t I be hurt?”  I’m not saying it won’t hurt, what I’m saying is, we often bring more hurt upon ourselves than is needed.  We have to let it go.  Did the fact that they are no longer in our lives negate all the good times we had?  I hope not.  It changes how we will interact with them in the future.  We’ve changed, they have changed, the relationship changed.  That change may be that it is over.  It may be that the relationship becomes something different from what it was before, we have to decide if it is worth it.  We can have bad feelings about this, but it is our decision whether to hold on to these feelings or let them go.  I try hard to let them go, to find equanimity.  Do I always succeed?  NO.  Sometimes the hurt comes back to the surface, I think that’s a part of grief.  But now I can sit back and think, why is this bothering me so much?  I always come back to the same thing, I want it to be different than it is.  My wants are causing me harm.

Not everyone has to understand what I’m going through, and not everyone has to be there for me.  It is a great feat to be able to accept a person for how they are, even when they let you down.  I’ve decided to let go of the past relationships that didn’t work.  I work on relationships with people who understand my limitations and are willing to work on our relationship the way it is now.  I don’t have many friends from before.  I have made a number of friends on-line since I’ve gotten sick, and lost my hearing.  Due to my limitations, I haven’t been able to make friends outside of the house, maybe that will happen in the future, but I’m okay with that.  I will continue to nurture the relationships I have and focus on these things.

When I got sick most of my friends were starting a family.  I had many friends who were pregnant at the same time the year before I got really sick.  Keeping up with me kind of went by the wayside.  They had a new life, one that would have been new if I were sick or not.  Our friendships would have changed.  Would they have survived if I hadn’t gotten sick?  Probably, at least for longer than they did.  Things changed.  I could no longer nurture the relationships the way I had before, my friends couldn’t find a way to bend to my new limitations.  Is there hard feelings?  I’d lie if I said they aren’t ever there, but for the most part, I’ve found peace with this.  Realizing that my pain comes from me, makes it easier to have equanimity in this situation.

Something else I noticed, when I tried to attend a few gatherings with my friends after I’d been sick for a while, I realized, I had nothing to say.  I used to be a social butterfly, always being able to have conversations with anyone.  After getting sick my world shrank, I rarely go out other than go to the doctors.  My friends still worked, ran around with their kids, and had rich social lives; my life revolves around my health.  That doesn’t give us much to talk about.  I wanted to hear all about their lives, but I had nothing to contribute to the conversations.  I was uncomfortable, and I made others uncomfortable.  Conversations were forced.  We had changed.  The fact that our friendships didn’t survive doesn’t mean either of us are bad people, we grew apart, as many people do.  When you become chronically ill to the point that your life changes so dramatically, it forces all of your relationships to change in a very short period of time.  Suddenly I didn’t have hardly anything in common with my core group of friends.  Normally if relationships change it takes time,  If you lose a relationship it doesn’t normally come in a mass exodus.  That is exactly what happens to many who are chronically ill.  We don’t see this as a natural progression in a relationship, we see this as abandonment.  It hurts much more than when you lose one friend because of something, you are suddenly losing many friends.  When I realized things change no matter what, and I will never know just how they would have changed without me getting sick, it helps me accept these things.

I realize now how much relationships change no matter what, and how much we need to nurture a relationship to keep it alive.  I hope this helps me to be a better friend and find compassion for others and myself when dealing with changing relationships.

 

Mindfulness Quotes

Mindfulness practice has helped me get through some of the roughest patches of my life.  I haven’t been practicing as much as I want and would like to resume, I thought a good way to start would be to post a few of my favorite quotes on mindfulness.  I hope you enjoy them too.  (all photos were taken either by me or Stuart)

“Mindfulness is simply being aware of what is happening right now without wishing it were different;

enjoying the pleasant without holding on when it changes (which it will);

being with the unpleasant without fearing it will always be this way (which it won’t).” ~James Baraz

palm tree palm springs

“In the end, just three things matter:

How well we have lived.

How well we have loved.

How well we have learned to let go” ~Jack Kornfield

butterfly on flower

“Be kind whenever possible. It is always possible.” ~Dalai Lama

“Realize that this very body, with its aches and its pleasures,

is exactly what we need to be fully human, fully awake, fully alive.” – Pema Chodron

road runner porch palm springs

“If you want others to be happy, practice compassion.

If you want to be happy, practice compassion.” ~Dalai Lama

“Be happy in the moment, that’s enough.

Each moment is all we need, not more.” ~ Mother Teresa

** One reason I haven’t been keeping up my mindfulness practice like I used to is that the depression side of my Bipolar Disorder has been taking over my desire to do many things.  I started seeing a new psychiatrist on Monday.  It was a very in-depth appointment.  I took a lot of psychiatric tests before I saw him.  They mainly showed that I have a bit of a hard time concentrating.  Two of them weren’t really fair because they are exactly like a “game” on Luminostity that I play a lot, if I hadn’t been playing that for a while I would never have been able to do as well on those tests.  We discussed my past treatments, what’s going on, all kinds of stuff.  He is adjusting some of my medications, and referring me to a therapist he thinks would be good for me to see.  I will go back in a month.  I’m feeling better just knowing that I am much more comfortable with my care provider and think this is a very positive move.

 

Creativity As A Way To Cope

As you look around the chronic illness community you will often find that we use creativity as a coping mechanism.  There is science to back up our intuition that creativity is a good thing for us.

“When we are involved in (creativity), we feel that we are living more fully than during the rest of life,” Csikszentmihalyi said during a TED talk in 2004. “You know that what you need to do is possible to do, even though difficult, and sense of time disappears. You forget yourself. You feel part of something larger.”

This quote comes from a much larger article on this subject I found on CNN’s site.  I thought it extremely interesting, perhaps you will too.  This is Your Brain On Crafting.

Today I thought I’d share with you some things I’ve been doing recently to spark my creativity.  I received a tablet for Christmas, it comes with a stylus so I can draw right on the screen.  I love it.  It’s hard when I have very little space, and I often have to stop working very quickly to bring out a lot of art supplies, so learning how to create art on the computer has been wonderful.  I’ve been using an app called Sketchbook. They post challenges that you can take on if you like.  This has been perfect for me.  I have had a very hard time creating art in the past year, deciding on what to do has been too hard.  The challenges give me a focus.  It’s like having an assignment back in school.  I get so involved in these projects that times goes by without me noticing.

 

 

If you would like to see the photos larger just click on one and you can see a slide show that will show them in a larger size.

The assignments were:

  • Upper left – Biggest Fear – Title “The Monster Within”
  • Top Right – Female Human Animal Hybrid – “Butterfly Woman”
  • Middle Right – Modern Mythical Creature – Loch Ness Monster “Nessie”
  • Bottom Left – Person I’d most like to meet – “Siddhārtha Gautama” (Buddha)
  • Middle Bottom – Abstract Tree
  • Bottom Right – Dream Home

Do you have a creative outlet?  You don’t stress thinking you are good at it or not, just do something.  No one else ever has to see it.  Coloring books are really popular right now, this is a great way to get your creative juices flowing.  Is there something you have always wanted to try?  Photography?  Learning how to crochet?  Knit?  Cook?  Stamping? Paper Crafts? Jewelry?  Poetry? Writing?  So much to try, so little time!!

After decades of research by Professor Mihaly Csikszentmihalyi he found getting involved in something creative produces the same effects as meditation.  Something he calls flow.

“When we are involved in (creativity), we feel that we are living more fully than during the rest of life,” Csikszentmihalyi said during a TED talk in 2004. “You know that what you need to do is possible to do, even though difficult, and sense of time disappears. You forget yourself. You feel part of something larger.”

If you’ve been reading my blog for long, you know I’m very into mindfulness and the benefits of it and meditation.  So learning this made me very happy, especially since I just haven’t been able to meditate recently.

(shh, I’ll share a little secret with you, I’ve been really depressed for a long time now.  The antidepressants I’m on simply aren’t working.  Things need to change.  I’ve had a psychiatric nurse practitioner here who writes my prescriptions, but she isn’t very good at working with me since things have changed.  I’m bipolar, I’m having a severe mood change, I need help. So I’m searching for someone I can really work with, and I think it’s time for me to go back into therapy.  I’m working on it, but it is taking a bit of time.  While I’m finding the right doctor and therapist that click with me, I’ll be trying to do as much work as I can to help myself.   Including, being a lot more creative.  I plan to post  much more about my days, to see just how I’m doing, the good days, the bad days, and all the days in between.  I hope you will join me on this journey.  I might even post more of my challenges.)

Keep Calm and Create

 

 

ER – ICU – 3121 – Home

I got home from the hospital on Sunday afternoon.  I just read the post I wrote while in the hospital.  I’m so sorry, I had no idea that it was like that.  I would have let you know I’m alive before now!  You should have seen the status I put on Facebook!  It completely blows my mind that at the time I read these things after I wrote them and thought they said what I meant to write.  Yep…*Swoosh* MIND BLOWN!!

Here’s what has happened….I’ll refresh your memory from the last post, as if you could understand it.

I’ve been having these little muscle twitchy things.  Sometimes just minor, sometimes more pronounced, it always happened on the right side and it coincided with long days of vertigo, or migraines.  When I was exhausted, stressed…ect.  On Wednesday it happened without these being present.  It happened 3 times at home each time getting worse.  We decided to go to the ER.  As soon as I walked ….wobbled…in to the ER, it happened again.  The first thing they did was have me pee in a cup (check my electrolytes), and then a CT scan. The CT technician was great.  When it was over he stepped in the office to do the paperwork and it started, I remember thinking, “Where is he”…and then I screamed when the elevator hit the bottom floor and I was in motion…and scared, really scared, and crying…I didn’t know why I was but I couldn’t help it.  The CT tech was leaning over me, telling me I was OK, that I was in the hospital, we were going back to the ER, and he just kept saying that.  That was the first of many for days….some better, some worse.

At first they put me in a normal room, it was just to be for a little bit, until they could get me on the 5th floor, it has cameras, they wanted to observe me all the time….seizure watch.  But there was no room on the 5th floor, so I was put in ICU.  I could not be left alone….or far from help.  Stuart was there, but he had to go home to take care of our pets, and gosh he does have to sleep.  Luckily, my sister came soon and helped, thank goodness.

While I was in the ICU I had a 24 hour EEG, actually it only lasted about 15 hours because I had more than 6 seizures during that time so they didn’t need the whole time.  It came back clear.  I was sent to a regular room.

The doctor came in and told me that I am having non epileptic seizures.  He said they had a theory…  At that moment, I had a seizure.  He told my husband that, no, what he was thinking would not cause anything like that.  He was thinking something much less violent.  There are theories, but I don’t even know right now.  I will be seeing  my neurologist today.  I see my PCP next week.  We’ll see.

Since I’ve been home the seizures have calmed down.  They aren’t as intense.  I don’t know if it will stay that way.

Strange thing, while I’ve been having the intense seizures I did not have vertigo.  I would have small little swirls, that lasted just seconds, but that’s all.  Yesterday when I had severe rotational vertigo for hours.  I didn’t have a seizure until it was over for a while.

But I was in the hospital from Wednesday night to Sunday afternoon without having any real vertigo?  Don’t get me wrong, I don’t want seizures instead.  I just think it’s weird.  Now that I’ve said that, oh lordy please don’t let me have both at the same time!

I think I’ve told you all I know for now.

So far…another mystery in this crazy world of mine.

I’ll talk more about this soon….but….I’m having a Pity Party, and I’m not ashamed to say it!

I hope this makes a bit more sense….I’m really too tired to proof read it, not like it did much good the last time.  🙂

Invisible Illness Week – 30 things you may not know…

September 10 -16 is National Invisible Awareness Week – If you’d like to get involved check out the official site

30 things about my illness you may not know.

(warning, some answers may give too much information, but it’s not detailed)

See, I don’t look sick. This photo was taken in 2009, right before my first ear surgery.

  1. The illness I live with is:  The main illnesses I live with are Meniere’s, chronic Migraines, Bipolar I disorder, and chronic hip and pelvic pain.  If you are interested in my other illnesses please see the the tab above titled The Ants That Bite.
  2. I was diagnosed with it in the year:  I don’t remember any more.  I think I was diagnosed with Meniere’s in 2001, Migraines (I’m not really sure, I’ve had doctors tell me on and off since my teens that I have migraines, but they became chronic in my late 20’s…I’m 49 now), chronic hip pain and pelvic pain – they haven’t figured out what is causing all the pain, so no diagnosis.  Bipolar I – 1990 then was told they were wrong – re-diagnosed in 1994.
  3. But I had symptoms sinceMeniere’s – the first attack I remember was in 1993.  Migraines – the first one I remember, I was 11.  The pelvic pain – in my early 30’s,  in the mid 1990’s.  The hip pain – 2008. Bipolar – in my teens.
  4. The biggest adjustment I’ve had to make is:  These are a few major ones for me….  Losing my hearing.  Not being able to drive.  Not seeing my friends like I used to.  Realizing that I will never be cured.  Not being able to have a sex life without pain.  (but I’ve dealt with, or am dealing with all of these.  They will not keep me down.)
  5. Most people assume:  I can do much more than I can, after all, I don’t “look” sick.  And some assume I use my illness to get out of social situations, but honestly I hate being so solitary
  6. The hardest part about mornings are:  Never knowing what the day will bring.  I often wake up with a blinding headache, I know what that day will bring.  But if I wake up feeling decent I never know if I’ll continue to feel that way, or if I’ll be hit with a Meniere’s attack or Migraine.  However, I try to make the most out of every day.
  7. My favorite medical TV show is: Ummm, funny, I used to watch some medical TV shows, but I don’t any longer.  I think I see too much of the medical community in person.
  8. A gadget I couldn’t live without is:  I suppose I could “live” with out most gadgets, but there are some I wouldn’t want to!  My Cochlear Implant, I can hear so much more now. My laptop -so many of my friends are in there!
  9. The hardest part about nights areTrying to sleep, and trying to stay asleep.  Fear.  Fear of having an attack just as I’m falling asleep (this happens more than I’d like to admit), fear of waking up with a blinding headache……However, each night before I sleep I acknowledge my gratitude for the day, and plan what I’d like to do the next day.  I always have hope I will have a good day, and if I don’t I still know I’ll get something out of it.
  10. Each day I take __ pills & vitamins. (No comments, please)    18 daily (this included the total number, not different medications), 5 as needed, 4 vitamins daily, and one B12 shot a week.
  11. Regarding alternative treatments I have tried many, including chiropractic, acupuncture, certain vitamin routines….  I found medical massage helps my migraines and hip pain a lot.  I also use a special diet to treat gluten and fructose intolerance.
  12. If I had to choose between an invisible illness or visible I would choose: I don’t think anyone would choose to have an illness, but I’ll deal with the hand I’ve been dealt. 
  13. Regarding working and career:  I don’t work.  I don’t have a career.  Takes a lot out of conversations with others.  My doctor suggested I look into filing for disability, but I haven’t done it yet.
  14. People would be surprised to know:  I often don’t wash my hair for a month or more.  Water on my head is a trigger for me, especially if I have to close my eyes.  Luckily, my hair is pretty dry, and it’s long so I just tie it back.
  15. The hardest thing to accept about my new reality has beenThere are a lot of times I have to say” I can’t” or “no” to people…and to myself.  Losing most of my independence.  Not being able to drive.  And not being able to have a normal sex life.
  16. Something I never thought I could do with my illness that I did was:  Find the positive.  Become my own advocate.  Fire a doctor.
  17. The commercials about my illness:  The only one of my illnesses I’ve seen commercials for is Migraines.  Commercials are always drug companies wanting you to talk to your doctor about their drug.  I’m not comfortable with this, and normally the side effects they list are pretty scary.
  18. Something I really miss doing since I was diagnosed is:  I miss being able to go places alone.  (the answer to this question changes often, but right now, not being able to go anywhere alone is very difficult.)
  19. It was really hard to have to give up:  My hearing.  Even with technological help, I have a cochlear implant (CI) and a hearing aid, it is still very hard to hear at times.  I know my hearing with the CI will get better, but it has been very hard to loose all my hearing in one ear, and almost all of it in the other.  Without technology, I can’t hear anything.
  20. A new hobby I have taken up since my diagnosis is: Blogging. Reading a lot!  I’ve always liked to read, but now it’s almost an obsession.  (thank you to Kym for my Kindle!   Oh. another gadget I wouldn’t want to live without.)
  21. If I could have one day of feeling normal again I would:  I would be so very thankful!!  Then I’d spend a day pampering my husband, in and out of bed.  ; )
  22. My illness has taught me:  To be my own advocate.  To be more tolerant…I thought I was tolerant before, but I realize I needed a wake up call on that one.  That I’m not alone….this one relieves me because I needed to feel that someone understood, but it makes me so sad that others have to go through what I have.  And that I can handle much more than I ever thought I could.
  23. Want to know a secret? One thing people say that gets under my skin is: Any form of, telling me I’ll get better.  “When you get better….”,  “You will beat this….”   NO, I won’t.  This doesn’t go away.  I may be able to find something to make it more tolerable, but it will never go away.  And often treatments that work, stop working.   I also hate it when people say, “You don’t deserve this”  I know they are trying to be kind….but I never thought I deserved this!  And one more….”But you look so good.
  24. But I love it when people:  Tell me how they are doing, want my opinion, want to talk to me as a friend…..Don’t get me wrong, I don’t mind if someone asks about my illness, if they are interested and want to know more about it.  But, sometimes I feel like people forget I’m anything more than my illness.
  25. My favorite motto, scripture, quote that gets me through tough times is: This may not be the life I expected, so I’m changing my expectations.   I don’t know if this is a quote or anything, it’s simply something I thought one day and it has helped me through accepting a lot of things that have had to change.
  26. When someone is diagnosed I’d like to tell them:  Often people who have been recently diagnosed find my blog and it scares them, so I start off telling people:  Everyone’s journey with Meniere’s is different.  Most do not get to the stage I’m at, so please don’t think you are going to lose your hearing….or any number of things I’ve been though.  I’m in the very rare group.  I let them know there are many treatments to keep Meniere’s under control, and point them to sites and other bloggers who can give a different perspective.  Most importantly, I assure them, they are not alone.  They can contact me any time, and there are online groups.
  27. Something that has surprised me about living with an illness is:  That my husband and I have gotten even closer.  Thank you to our therapist, I think having to go to a therapist about all of this surprised me too.  I was not handling losing my independence very well, and hubby wasn’t communicating very well.  But by going to a therapist we began to communicate out needs much easier, and recognize our needs.  Another big surprise is that people will reach out to me.  I’m very surprised that I’ve touched people, and made some honest friendships with people I’ve never met.
  28. The nicest thing someone did for me when I wasn’t feeling well was:  (This does not include things my husband does for me)  Come to visit me.  It doesn’t happen often, but I do enjoy other people’s company.  I hate that I often have to cancel when someone wants to do something with me.  I’m already so isolated, and if I have to cancel people often think I don’t want to see them, or I’m just too much trouble.  I don’t blame them, most of my friends have families, and they have to work their schedule around a lot of things.  So missing a visit makes it harder to make plans the next time.
  29. I’m involved with Invisible Illness Week because:   Because I have more than one. Some people I love and care about have invisible illnesses.  We need to let people know we are still people, but don’t judge us by how we look.
  30. The fact that you read this list makes me feel:  That you care, and maybe you understand some things about me you didn’t before.