To My Husband

hearts color copy2Everyday He Loves Me

He holds my hair as my world spins

leaving me a wretched mess.

He brings me food

washes my body

cares for our home

He holds me

comforts me

helps me fight my battles.

He kisses me

caresses me

loves every part of me

To him I am no burden

He loves me.

Everyday He Loves Me.

He watches me get my hopes up

and holds me when they fall.

The words are nice to hear,

but easy to say.

Every day, he shows he loves me.

How can I write a tribute to a man who has given me so much?

The words seem to lose their potency after leaving my heart.

How do I express how much I love him?

My heart swells with emotions and words that will not come forth.

This man who shows his love each and every day.

Sometimes my Caregiver,

Often my Lover,

Always my Champion,

Forever my Hero,

My Husband,

My Friend.

I love you more than words can say.

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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.  

I Didn’t Expect

expectationI didn’t expect the depression I’m feeling….

I saw the signs, I have so much going on, there are so many outside reasons….but I’m struggling….this is why I’ve been away so long, why my blog has been suffering, why I simply haven’t.

Today, I’m going to write, I have too much to write about, I am overwhelmed by how much I have to write about, but I need to…..

I didn’t expect to have vertigo almost all day the day before surgery.

I didn’t expect to have vertigo in the waiting room right before surgery.

adapted from Teen Titans cartoon

adapted from Teen Titans cartoon

I didn’t expect the intense pain after my surgery.  During surgery the back injury that just got better was aggravated.  I was not just dealing with surgery pain, the pain I expected, I was dealing with the back pain and severe sciatic pain.  To make it worse, I couldn’t move to make the back and sciatic any better.  I was stuck, in so much pain.  We could not get this pain under control.  I have issues with pain medication.  Everything makes me hypersensitive, I feel like things are on me, it makes me itchy.  So I was only prescribed Tylenol and Tramadol.  This didn’t do it.  They tried to put me on my side to help, this caused me so much pain I swear I wasn’t even in the room it was just pain.  Luckily, it didn’t last long.  I decided I’d rather itch.  They tried Hydrocodone.  nothing.  I don’t know what all was tried.  at 2am they tried Toradol, this is a NSAID given by IV or injection.  I’ve had it for my migraines before.  This finally worked.  Probably in conjunction with everything else.  I finally fell asleep.  Only to be awoken at 4am to have my blood drawn.  Then at 6am for something and at 7am because shifts changed….it was an exhausting.  But I have to say, the night nurse who was trying to help me was absolutely wonderful, I couldn’t have asked for better care.

I didn’t expect to have low blood pressure, a magnesium deficiency, and have to stay another night.

I did get out of bed the first day and walk a little, I was told I did great.  (the intense pain hadn’t started yet)  I had my morning Physical Therapy on the second day and did well, even though I was a little dizzy.  I didn’t expect to have a vertigo that afternoon.  During my vertigo attack I had 3 different people come to work with me, including my Physical Therapist.  No afternoon PT, no going home.  They also had to make sure my pain was under control before I went home.  It was better that night…but I had to sleep in a recliner, glad we bought one for me the right before I had my surgery.  (ugly thing)  I didn’t expect to HAVE to sleep in a chair for many nights after I got home.  I didn’t expect to cry from the pain so much, after my surgery.

I didn’t expect my sister to come and help.  I am very grateful.  I didn’t expect it to be so hard for Stuart to stand back and allow someone to help.  He said he’s just used to doing it, it’s hard to ask someone else to do things.  Yep, I know that feeling.  It’s very hard to ask others to do things.  Especially, for me to ask for the little things.  It’s hard to ask for things like something to drink, or a snack, to reach something for me, to get me a blanket if I’m cold….ect.  Yep, I’m having a hard time asking for things too.  I’ll ask for someone to go to the store, or do some laundry, things like that…..but it’s the little things that get me.  It makes me feel so helpless.  Eh…I guess I am.   (I feel pretty weird having anyone other than Stuart do private things for me too…that is one of the hardest things I’ve had to deal with…one of the hardest)

I didn’t expect to have vertigo every day since my surgery.

I didn’t expect for Stuart to have to take off a second week from work.  (I think he got in a little bit of work the second week…but not much.)

-Rachel Wolchin thegoodvibe.co

I didn’t expect…..

I didn’t expect to have a death in the family two days after my surgery.  It was my extended family by marriage (my cousin’s daughter’s husband), I didn’t know him personally, but the circumstances of his death were hard….so very sad.  He was young, in his late thirties.  He was EMT on his way to work and pulled off and parked at a gas station, they found him slumped across the steering wheel dead.  The autopsy has been inconclusive.  There are still test out, but they don’t expect to find anything.  They will probably have no idea why he died.   They also found out a lot about him that his wife had no idea about, it is very, very sad.  It also makes you think…..and think….

I didn’t expect for one of my father’s friends to die the next day.  I knew him growing up.  He worked with my father, they used to Barbeque (or barbecue in some parts) together.  When I say Barbeque, I mean Southern Barbeque; a huge hog in a pit, slow roasted all night long….oh my it is good.  We used to have picnics and things over at his farm.  He let me touch my first cow, it was much softer than I thought it would be.  He was 12 years younger than my father.  As you get older you see more and more friends die, I wonder if my father is having a hard time with this?  I’ve noticed he goes to a lot of funerals.  That’s a subject that would be hard for me to broach with him.

I didn’t expect my friend Laurie from Hibernationnow’s Blog to die on April, 21st.  She caught the flu in February and that just snowballed into more and more, she just got sicker and finally her body couldn’t take it any more and she died.   I’m in complete in shock about her death.  I keep looking for updates to her blog in my email.  I look for her to chat with me on Facebook.  I heard from her in some way nearly every day.  It may not have been personally, but I always knew she was there.  Now she’s not.  Just like that….suddenly her voice is gone.  Her thoughts are not in my life any more.  Laurie fought fibromyalgia, she was quirky in ways and loved the color yellow, she loved the ocean, writing, and most of all her family.  We were both foodies, and we both lost a dogs who left huge holes in our hearts, and later we both adopted rescue dogs who took over a new place in our hearts.  The one thing we disagreed the most about was our feelings about the chef Alton Brown.  She hated him, I love him…..it was quite a debate on one of her post!  I will miss you Laurie.  All the support and love you gave me, and our friendly banter.  May you be pain-free in a nice warm place near the ocean taking a walk with your father.

I didn’t expect my dearest friend’s mother to die this week.  She has been battling Amyotrophy Lateral Sclerosis (ALS, otherwise known as Lou Gehrig’s disease) for the past 9 months.  I’m actually relieved she didn’t have to live in her body with her mind fully aware without being able to communicate with anyone for very long.  I loved Kathy very much.  I wanted so much to be there to help care for her.  I wanted to be there for my friend and help her through this difficult time.  Now I can’t be there for her again.  The death of her mother is going to devastate my friend.  She was closer to her than anyone.  They talked daily.  They were best friends.  Her mother’s illness took a toll on the family.  Yes, she will have a lot of people around her, but I know she needs her best friend.  It is extremely hard not to be able to go.  I am so tired of feeling useless.  But this should not be about me, it should be about Kathy.  She was such a strong woman.  A single mother, raising 3 children mostly by herself.  She was so generous and kind.  She worked so hard and hard and hard….and she gave and gave and gave.  This probably gave her more joy, but from my view I wish she had been able to take more time for her.  She was just about to retire when she got sick.  I know Kathy did have a good life, and celebrated life, but I also know she was looking forward to slowing down and just enjoying her grand children.  Please don’t put off living until tomorrow.  Kathy was one of the best people I knew.  That sums it up pretty well.

I didn’t expect writing this post would make me feel better.

tonibernhard.comquote

Not the post I planned….

So I had this post all planned out.  I had been working on it in my head.  I even had a few little illustrations to go with it.  Neat huh?

I really wanted to talk about what has been happening to me over the past few months.  All the stuff that has been going on…Physically, Mentally, and Spiritually.

I thought I could get it out.   I haven’t been able to write much.  To read much.  To do much of anything because of the vertigo.  Finally, I thought I could do it.  I started getting it together.   but that’s not how things happened…..

I started getting ready for bed night before last.  I had had a strange day.  I hadn’t had vertigo, but my ears felt off.  (if you have Meniere’s you can know what that means….or it could means something different for me….what they were doing, well, they felt very full, and my hearing was weird – best word I have – I thought that would stop when I lost my hearing and now hear through cochlear implants, but no, my hearing still gets wonky, unless of course I turn them off, then I just hear the increased tinnitus….oh yeah, I didn’t mention that, I also had increased tinnitus.)  I also had this weird fainting type of spell.  I didn’t faint, but I felt like I was going to, like I was hit by a tranquilizer gun.  It was strange.  I had to fight hard not to just pass out.  I could have gone to sleep, I guess, but it was too scary of a feeling, like if I went to sleep I might now wake up.  This has happened a few times lately, I have blamed the steroids, they can make your blood sugar drop, so I eat something and feel better.  This time was a bit worse, as it came on very suddenly, and I was hard pressed to even move……so….Stuart checked my blood sugar.  I’d just eaten a banana, my blood sugar should not have been low.  My blood sugar was indeed not low.  It was on the higher side of normal…hmmm.  Not that strange since I just had that very ripe banana, but strange since I felt like I was fainting from low blood sugar???  what on earth?   Well I ate some protein anyway, and maybe it was the placebo effect, maybe the spell was just ending, whatever…I started to feel better.   But I still felt off…and I admit, I ate more, I ate too much probably.  But I felt better.

A little while later I went to get ready for bed.  I was brushing my teeth and looking in the mirror and thought…why am I moving?  Then I feel it and think…”oh shit.”  Yep, vertigo.  No warning, no strange feeling, nothing….I was just moving….what the?

It was slow so I rushed to go to pee real fast but had to have Stuart help me to bed.  (I always try to pee really fast before it gets bad because I always have to go when it happens.  It is horrible lying there about to bust to pee and can’t move because of vertigo, but it happens every time!  And if I vomit, I will pee too, complete loss of control.  So rush to pee, if I can…..so strange how things have changed for me with this…I never would have considered trying to run to the bathroom when this started a just a year ago, now, well….things have changed….)

I got my meds in me and it looked like this wold be a short trip.  WRONG!  It was a long and bad.   Over 4 hours….slow, fast, start to sleep – wake spinning fast, terrified – have to go to the bathroom again!  can’t get up….bedpan, humiliation, back – pain! – ….FAST SPINNING – help….slow…..fast…..sick…sick….help….tired….guilt….sorry…..sleep….AHHH!…..slow….sleep…AHHH!……….

Now what?

I was supposed to be going down to 1 steroid a day the next day.  Yesterday.  I did.  I felt bad all day yesterday.  I hoped it was just that hangover feel from the night before.  Then..Last night.  vertigo.  just a little, all night, I just kept waking with the bed moving.  I handled it.

This morning I woke….AHHH! FULL FAST SPIN!   Stuart’s at work, and I have to GO TO THE BATHROOM!  and I do not mean just for my morning pee.   Oh hell.   Whoosh!  Whoosh!  Whoosh!  I can’t move.  Which world do I try to step in to?  They are moving so fast.  Whoosh!  Whoosh!  Whoosh!  Oh I am so sick.  More meds.  sick.  I have to GO!

I grab my phone….text….I can’t see the key board, it’s all a blur…WHOOSH!   I type, “Spinning”  I think…and hit send to Stuart.   I don’t want to bother him, I want to be able to do this alone.  But how?  I know other people do.  How do they do it?  How do they go to the bathroom?  How do they survive without killing themselves (accidentally or on purpose?)   Since this has gotten so bad, I have always had Stuart to help me.  I’ve only had to deal with an attack a very few times alone.  That was so long ago.  It was so hard.  I don’t know how to not ask for that help from him.  How do I do this alone?

Soon I got a text back.   I don’t know what it said…..I texted….”help”  hit send.

Then I called on voice.  I only have to hit one button.  I did not have my cochlear implant’s on, so I could not hear anything.  I saw the little numbers start counting, I don’t know if he picked up, I just started talking.   “I’m not hurt, I have to go to the bathroom.  I need help for that.  I’m not hurt.  please just come help me to the bathroom.  I’m not hurt.  can’t get to the bathroom, really have to go…..”  then said I hoped he heard me and hung up.  I really wanted him to know I wasn’t lying there hurt, but I needed a little help….then I waited….

and waited.   and held on as hard as I could.  I knew I would soon have to try to crawl to the bathroom…..but then what?  I wouldn’t be able to get up on the toilet…..what was I going to do?   I kept trying to think.  the bedpan was in the bathroom.  Ugh! The trashcan?  maybe.   I’m going to kill my back even more.  “I have to GO!  I’m going to soil myself soon.”   (I really think I may have ended up soiling myself before I would have made the decision what to do.  My body wasn’t going to wait much longer.)  Then Kiki jumped up and ran out of the room…..”Yes, Stuart is here.  Whew….”

So I was saved the humiliation of soiling myself, or the possibility of injuring my back more from trying to get to the bathroom by myself…..or injuring myself any number of other ways.  *sigh*

The vertigo won’t go away.   It slows way down….right now I feel like I’m on a boat with the constant rocking, and if I move, it gets MUCH worse.  I will have full blown spins on and off.

I had an appointment scheduled at Duke tomorrow with my ear doc to get his opinion about all of this, now I can’t ride in the car for that long.  We rescheduled it for…I think Stuart said a week or so out.  I have increased the steroids and am hoping I can get this under control enough by then so I can ride in the car to get there.    What can he do?   I have no idea.   What is causing this?  I have no idea.  I thought I had an idea, but now, nope.   Where do I go from here?   if my trip to Duke comes up with nothing….I don’t know.   One step at a time.

I can’t control what happens in the future, but that doesn’t mean I can just sit around and not do anything.  I have to consider Stuart’s job.  His boss has been so very understanding, but this is above and beyond what we ever thought he would have to be doing.  First I injure my back and now this?   I’m afraid he is being understanding on the outside and not so much on the inside?  Stuart is getting his work done.  He works the hours, just often not normal hours.  Today he is now working at home.   He is going to talk to his boss again about this to ease my mind.  He likes this job, I do not want to jeopardize it because of me.  But I do not know how to take care of me during the attacks by myself.  If they are short, fine.  But when I can’t walk all day long because of it?  How do I go to the bathroom?  Get water?  food?  We can’t afford to get me a helper, and who would know when I’d need one?  (I’m spouting off out loud here, I’m not looking for answers…..just where my mind is right now.)

The guilt about this eats me up.  It is crazy to feel so guilty about being sick.  I didn’t do it.  I have no control over it.  Yet, this is the one thing I find the hardest to deal with….guilt.   I am so very sorry to be such a burden.  At times I will feel like I am past this, but then things like this happen and how can I not feel like a burden.  How can I not feel guilty?  How can I not feel that I am causing so much trouble for my husband?   Believe me I could give a list here of a lot of things that need to be done, that he needs for himself…..ect…..that are neglected because of me….because I’m sick.   Guilt much??   I’m working on being much more gentle with myself, non judgmental….I’m better than I used to be, but really, I don’t know if I’ll ever get rid of all of the guilt.  It’s a work in progress.  I can say it is much better than it used to be.  I don’t hate myself, and I don’t think of myself as a complete failure.  Those used to be huge thoughts that ran through my mind.  Those are thoughts that I hear from many people who are chronically ill and have lost so much of their independence.  That’s a sad thing isn’t it?   Ah…things I’ve been thinking about…..I’m doing really well with much of this stuff.  I really do like me.  I try my best to be a good person and I think that’s pretty darn important.  It’s just that my body often needs help, and I feel guilty about that.  Perhaps, if my husband had help it would be easier.  …..eh…..going in circles there aren’t I?

No…this isn’t the post I planned to write.   It isn’t well thought out.  It isn’t illustrated.  It doesn’t give a good account of what has happened.  It’s just me.  Telling you a little bit how it is now.  In this world of mine.   would I change things in my world today.   yeah, can’t say I wouldn’t.   Do I still love my life….most of it yeah.  This vertigo stuff can hit the highway though…..but I will accept it.  I have to.

This is just how things are right now.  Just right now.  they were different a moment ago…they will be different in a moment.

I’m actually much calmer about things and I’m dealing mentally with things better….yeah I know it doesn’t sound like it….but really I am (probably won’t be when the steroids start kicking in full force again, but hey, at least I’ll know it is the steroids, right?  this last round made me a bit crazy….I do not know what if feels like for a “normal” person to be on a high dose of steroids, but it makes me feel like my bipolar medications aren’t working, however, you sit there and think….is it the steroids or do I really feel like this?  ugh!)

It has taken me all day to write this.

I hope it makes some sense.

I’m going to try to write more often.  I need to keep up with what is happening to me.  So these posts coming up may be up and down or start to sound the same or something….but I really need to just write about what I am going through….

hope you don’t mind….

I might just need someone to listen.

 

I Want It Now!…but I’m still Stinky…

I Hate it when I can’t do something for myself!!

I HATE it when I want something…like food…and I’m brushed off…oh I’ll get it in a little bit.  Then, he offers,  “how about a (insert something tasteless that I’ve had every day for a week here)?”  “NO!  I’d like some REAL FOOD.” (sometimes I’ll even suggest something…”ummm, that’s so hard, and I’m tired.”  Damn…the I’m Tired Card.  That makes me feel guilty EVERY TIME.

But today,  something tasty was discussed, pizza, or Chinese….Chris decides he’s going to make Chicken soup….hummmm…I – do – not -want –  Chicken soup.  I’ve had that a couple of times this week….  “Oh it’s just to make sure the chicken won’t go bad, we will be getting something else…something good.”  “OK.”, I said dubiously.  “What do you want?”  I said to ask Penelope, I’m good with either the Chinese or pizza….secretly I really wanted the rolls from Pei Wei…but pizza is good too. (Really, I didn’t want to be difficult.)

He comes back….much later…how about soup tonight and we do the other tomorrow.  Fine. {grumble, grumble}  (Now he remembers this whole scenario much differently than I do….but we know I’m right.  He swears I never said I didn’t want soup tonight….uumph!)

I got all flustered with him…I’m hungry…now, dangit…and I don’t remember what happened next or why but I told him to please leave.  I did some other stuff on the computer and…an hour later…I finally called out for him…”OK it has been 2 hours since I said I was hungry is there a reason I’m not eating?”

I Want It NOW! (image by horrificbeauty - Veruca Salt - click to link to artist site)

(yes, you can see the red flames coming out of my eyes at this point….I think you may have been able to see horns and a tail.)  I get sicker and dizzier when I’m hungry…and I’m already pissed that I have to ask for food like a puppy!

I hear…”the soup isn’t quite ready yet”…”Don’t care, it’s been 2 hours…I want something to eat NOW!” “I can find you something.” But he just sat there looking at me… (I actually shooed him away like, well, be off with you fetch me some food damn it! Why are you still here? …I vaguely remember him saying something about being a slave boy, but I was way past hearing reality at this point.  Really?  I did this?  Why does this man put up with me?)

He brought me grapes.  I almost threw them at him….but I took a deep breath and ate the 6 grapes I’m allowed to eat in a day…and waited.  then he brought up some chicken with some mayo/mustard type dressing on it and called it chicken salad….I looked and didn’t comment on what he brought only that it was only about 3 bite fulls.  “But the soup will be ready in 15 mins!”  I thought…that better be some damn good soup!

Luckily it was.  Oh, yes, it was some of the best Chicken Noodle Soup I’ve ever eaten.

Was it what I wanted tonight?  No.  Was it satisfying…mostly.  Would anything else have been any more satisfying?  Sadly..I doubt it.

Then came the humbling, groveling, feeling extremely guilty time….Yes by ME!

Sometimes, it just gets to me (this time of the month much more than others, unfortunately).  I hate being dependent upon someone else for everything.  I HATE to have to ask someone to do something for me that I use to be able to easily do for myself.

Soon I had another problem.

I have been smelling vomit on and off all day.

I have not thrown up today, or yesterday even.  I did wake up last night very sick, feeling like I was going to vomit and I did gag a few times but I did not, I repeat I DID NOT throw up!!  So why do I keep smelling vomit?

I smelled my clothes…no, but I washed up at the sink and changed them any way.
My pillow case, no.

My sheets, no.

Finally this evening, I asked Stuart, do I smell like vomit?  He looked at me, “I can’t imagine why you would. Everything around you is clean.”  Still, I got him to smell me, and YES, I smelled like vomit!  EWWWWW!

OK, Bath time.  I was feeling better than I had been so it was time to brave the bath.

I ran the water, added some Epsom Salts for my aches and pains and got in….and got sick!  OH…the walls started to breathe.  I ran cold water over my wrist.  Please do not make me give up my bath.  I tried and tried…but no…Stuart was holding on to me and leaned over to let the water out.  I cried.  I looked up into his eyes with the biggest saddest eyes anyone has ever seen with tears rolling down my cheeks and said, “But I’m still Stinky.”  Then I burst into uncontrollable sobs.

"But I'm Still Stinky." (Vintage Big Sad Eyed Child painting - artist unknown)

My dear husband got in the tub and helped me up, dried me off, and got me out of the tub.  I sat on the toilet, and said, “of course, now I feel better.”  Without a word, Stuart soaped up a wash cloth and gave me a sponge bath while I sat there.  Very gently, with lemon scented soap.

He helped me back to bed.  I looked at him, and said, “I’m not stinky any more.”  He just smiled and said, “No more Stinky.”

**Please note:  I started to post this last night.  I was entering the photos when suddenly I went into a full spin.  Stuart was kind enough to save the draft so I could put it out today.  This is how life has been for the past 16 days.  I may have been the bitch from hell yesterday, but I promise I’m not like that often, and he says it gives him a little bit of insight into what I’m dealing with…as long as it doesn’t happen every day.  : )  I must say, having 16 days of severe symptoms and now PMS on top of it all, I was a volcano ready to blow.

Thank you to my darling husband for not throttling me.  And by the way….that soup was damn good!!