Time for “Us”

wendy-and-stuart-anniversary-12

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

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

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

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

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

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

 

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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.

 

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.