I don’t want to talk about it.

Image by TPHeinz from Pixabay

I have found myself dreading coming to my blog. I don’t want to talk about me, but I have always kept this blog open and honest and I don’t want to stop that. As I look back at the many years I’ve been writing here, I’ve been up and down and up and down and up and down….have I really made any progress? How do we measure progress? I think that’s the real question, and not one I’m going to answer today.

I have a lot going on right now and I simply don’t feel like talking. Ummm, that may not be true, I just don’t want to feel worse when I do. I’ve reached out and been ignored…not sure what happened there. I spilled my guts to someone who told me I could always talk to them, when I finished they said, “WOW. You have a lot going on. Praying you get some relief very soon. Love you bunches.” and that was the end of the conversation. I cried for most of the day after that. That is what happens when you try to talk to someone who does not have chronic or mental illness. She may love me, but she has no clue. And it makes me VERY wary to talk to anyone unless they are my peeps. But I don’t have many peeps and I don’t want to wear out the few I have. I do have a very good friend who hears almost everything and she is amazing, but she has her own crap going on and I can’t just keep unloading on her all the time. Of course, Stuart’s here, and he has never made me feel like I can’t talk to him, or made me feel bad about how I feel, but he needs to get away from it sometimes and he thankfully he doesn’t have a chronic illness. Support groups do not work for me, those people get on my nerves. I have a therapist, but let’s face it, one hour a week is not always enough, and sometimes you don’t get that. (like when I’m so sick I can’t go, and soon she’s going to Thailand for 3 weeks…Ahhh! I am happy for her, she’s never done anything like this before. What a dream trip.) Oh, dang I’ve completely lost my train of thought. So anyway…I don’t want to talk, or maybe I don’t trust talking, I don’t think it’s doing much good, and I feel like I’m losing the few friends I have because of it. I have some new treatments coming up and as that happens I’ll post about them. I would love to know more about other people’s experiences with these treatments, so I’ll be sure to post mine. (I just started Aimovig for my migraines, I’m going to be trying ketamine (esketamine nasal spray) as soon as my insurance approves it for my depression, and I’m going to be going to a pain clinic for my neck pain caused by my migraines…or the neck pain contributing to my migraines…anyway…pain.) So there will be posts.

I’ve decided to try to start putting out more posts, but they will be posts that are about my chronic illnesses and not so much about just me. I will probably put in there how it relates to me personally. But I have soooo much going on right now there may not be a lot of posts coming out, but I’m going to give it the old college try. (where did that saying come from?)

Well, that’s what’s on my mind today. Plus a whole heck of a lot more, but most of that is a mess!

Before I go, I’d like for all of you to know that if you ever need someone to talk to I’ll listen. Well, not with my ears, but I’ll text, message, email…. There is a contact form right here on my blog just go up to the top and you’ll see the “About Me /Contact Me” tab…you can contact me right there and it will email me. Now, if you are someone who wants me to sell something on my blog, or do some strange post, or something like that…don’t waste your time. I’m really not into those things. But if you need a to talk, I’m here for you.

Making friends?

I keep being told by my therapist that I need friends.  People I can spend time with, not just friends I text, email, message, blog with…..   She wants me to have local friends.  We’ve lived in this area for over 2 years and I don’t really know anyone.

My question for all of you is, How do I make friends?

I’m chronically ill, I can’t drive, I don’t go anywhere without my husband, I have a very hard time hearing in public places….

Where do I meet people who are willing to get to know me through all of those obstacles?

I don’t go to church.  I did look for a Buddhist temple in the area and there are a couple of places, but they do not practice the type of Buddhism I do.  I don’t think I’d feel comfortable there.  It’d be like a Fundamentalist trying to go to a Catholic church, they are both Christians, but they are very different.   (well it might not be that different)

I don’t work, so I won’t meet people there.

I don’t have kids so I won’t be meeting people through my kids.

I looked for a support group where I’d fit in, I can’t find anything.  Before you suggest it, no I’m not going to start one, I would not be able to be reliable enough to do so.

I really think it would be best if I met people who have chronic illnesses, I think they would be more understanding of my “eccentricities” 🙂

My husband works in a small office where there isn’t anyone to really become friendly with.

I’ve met the neighbors on each side of me, one is an elderly couple who prefer to keep to themselves, the other is a family who are always busy.  We don’t really fit in with either.

So, any ideas?   I’m not adverse to meeting people, I just don’t know how.

My  biggest problems are: I can’t go out alone, can’t drive, and my hearing issues.

Really, I’m looking for suggestions.  Any body got any??

Blog Posts I’d like to Share

Ok, so I planned to enter more posts I’ve read that made an impact on me, but if you’ve read my last post you know I’ve been going through a mess.  I started this post before I started having the run on vertigo, and I really wanted to make sure everyone saw these wonderful posts.  There is a lot of good information out there and I’m ever so eager to share some of the things I’m learning.  (BTW, I’m feeling much better!!)

Recently I’ve been reading some really great posts and articles on-line and I’d really like to share a few.  I wish I’d written some of this great information.  So please take the time to read:

Markovich Photo Art
Markovich Photo Art

From ADD and So Much More, Madelyn Griffith-Haynie, CMC, MCC, SCAC takes on the subject of Loneliness ins a must read 3 part series:  Part 1 – The Importance of Community to Health  Part 2. –  Sliding Into Loneliness  Part 3  – When you’re longing for Connection

On Living with Hearing Loss, Shari Eberts asks the question Why is it Still OK to Make Fun of Hearing Loss?  If you have hearing loss, know someone who has hearing loss, or simply want understand the hearing loss world, you should check out this blog post and much of Shari’s blog.

Bipolar Barbie-Q takes on how it feels when you are in the throws of depression.  (this is a subject I plan to cover soon myself, but you need to read her post, it’s raw, and full of passion, and will give you a great understanding on how complicated depression is.  I’m the Queen of Run-On’s.

 

I hope you have a good read today.

 

 

 

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

Caring Hands. Photo by w. holcombe
Photo by w. holcombe

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

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

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

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

Keep in touch with them.

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

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

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

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

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

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

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

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

Talk to them about your life.

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

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

Ask if there is anything they need.

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

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

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

—  Visit them.

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

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

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

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

Don’t stop inviting.

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

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

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

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

Offer specific forms of help.

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

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

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

Help with the kids.

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

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

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

Learn about their illness….and believe.

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

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

—  Be supportive…..care.

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

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

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

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

 

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

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

Shhh... photo by w. holcombe
Shhh…
photo by w. holcombe

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

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

10. “It’s just a bad day”

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

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

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

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

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

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

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

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

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

7. “At least you don’t have…”

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

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

6. “You need to stop being so negative”

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

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

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

5. “You got this because…”

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

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

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

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

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

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

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

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

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

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

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

2. “But, you don’t look sick”

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

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

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

1. “It’s all in your head”

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

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

Yes, it is all in my head.

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

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

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

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