Confessions of a Chronically Ill Deaf Woman

confessions

I have some confessions that I thought some might relate to, they can be a little embarrassing to me, but I’ve decided to tell all.

I envy people who look sick.  It’s just hard to be as sick as I am and look completely normal most of the time.  Others have no idea what I go through.  I know on the outside I appear normal.  I know it’s hard for people to understand why I can’t do things.  Sometimes it’s hard for me to understand.  Sometimes I feel if I looked sick it would be easier.

I’ve played the sick card.  This is very hard for me to admit.  There have been rare occasions when I simply haven’t wanted to do something and I’ve said I was too sick.  Normally that is something that would make me sicker.  Something I might want to do, but I know if I do it I’m going to pay the price afterward.  So instead of trying to explain this it’s easier to just say I don’t feel well enough to go in the first place.  Now I do admit there have been very rare occasions that I simply have not wanted to do something and said I wasn’t feeling well enough.  I can think of one.  There was an outing with Stuart’s work and I knew I’d feel uncomfortable around all of those people so I played the sick card.  Stuart went and that was really all that counted, but I felt very guilty about saying I was too sick when I really wasn’t that day.

When I get mad at my husband sometimes I’ll “take my ears off”, ( I’ll, take off the processors to my cochlear implants) so I can’t hear him.  Yes when I get mad I act like a child.  “I can’t hear you, lalalala”.  I’m sure it infuriates him.  I’m acting like a child.  And at the time, I don’t care.

I’m addicted to the internet and I don’t feel that is a problem.  I am basically housebound.  I can’t leave without someone else.  I rarely go anywhere other than to the doctor or the occasional outing, that is normally just errands.  I don’t have friends close by since we moved.  Even before we moved I had very few that I saw on a regular basis.  I keep in touch with my friends through the internet.  I read, I write, I research, I email, even my TV is through the internet.  Some people may think I spend way too much time on the internet, I don’t think so.

I really don’t miss working.  If I’d had the dream job I’m sure I’d miss working, but truthfully I didn’t like my job.  I dreaded going to work.  I don’t miss it at all.  I don’t like the fact that I can’t work.  But missing my job?  No not at all.

I care what people think.  I keep being told, “who cares what people think?”  Well I do.  Why?  I have no idea.  I don’t like this part about me, but I really care about what people think.  I don’t want people to think I’m lazy, that I’m pretending to be sick, that I’m a hypochondriac….  Yet I don’t like to go out looking bad.  I don’t want people to think I can’t take care of myself.  I don’t want people to think my husband isn’t taking care of me.  I care what people think when they come in my house.  (as if so many people come in my house)  I care what people think when they ask me what I do and I can’t give them an answer.  I don’t “do” anything.  I even dress up a bit just to go to the doctor.  Especially my therapist.  She is a lovely woman, so put together, and I want to look all put together too.  So I actually dress up a bit to go to my therapy sessions.  How weird is that?

I often don’t know how to talk about anything other than health issues.  My life revolves around my health, and most of my friends have chronic illnesses and their life revolves around their health issues so we don’t have a problem talking.  But when I meet other people, when I need to make conversation with people outside of my chronic illness circle, I’m a bit lost.

Often I have no idea what someone just said to me, so I fake it.  When there is small talk being said and I miss part of it because I just can’t hear, I nod and smile a lot and hope I’m not smiling when someone just told me something sad.  It is way too hard for me to constantly ask people to repeat themselves, especially in a setting where I know I probably won’t be able to hear them anyway.  Often when I’m with Stuart I just stand there and smile and let him deal with the conversation.  It’s hard on me, not being able to participate, but it’s harder to struggle through it.

I love my recliner.  I never thought I’d be a middle aged woman who spends most of her time in her recliner, but I do.  I love this chair.  I got it when I got my hip replaced, I don’t know what I did without it!  I get through my vertigo attacks much easier in the recliner, I don’t have to lie all the way down, I don’t have to sit all the way up, it’s just so much easier.  It’s my comfort spot, it’s where I write, read, watch TV….and that’s okay with me.

I don’t shower of bathe regularly.  Taking a shower or bath is an ordeal.  I have a safety issue with both.  Taking a shower is harder for me because I often get vertigo when the water hits my head, even using a shower seat with a hand held shower head doesn’t solve the problem.  Taking a bath is easier, but it’s much harder to get in and out of the tub.  I’ve also had vertigo start with me in the tub a few times.  I have to have someone with me when I shower or bathe.  It takes a lot of energy out of me.  I often have to lie down and rest afterward.  I never thought I’d say that I’m lucky I have dry skin and hair but since I do it’s not that big of a deal if I don’t wash my hair for a couple of weeks.  No, I’m not gross, I do wash up.  But taking a full on bath, takes a lot.

Sometimes I’ll wear the same “clothes” for days.  When I don’t feel good I wear the same clothes for days.  By clothes I mean a tee and shorts or sleep pants.  I will move from the bed to my recliner and back.  Who needs to change clothes?  Truthfully, I don’t think I could if I wanted to.  But sometimes I don’t change clothes simply because it’s easier.

I’m hard to live with.  I get grumpy, grouchy, moody, bitchy….but I’m also loving, happy, joyful…. Let’s just say, I’m confusing.

 

Are there confessions you have?  Want to share?  Do you share some of mine?  I’d love to hear!

(photo by and of W. Holcombe.  All rights reserved)

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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.