Wednesday, February 29, 2012

Dear Anonymous,

Anonymous.  Websters Dictionary gives this definition...
1.  of unknown authorship or origin
2.  not named or identified
3.  lacking individuality, distinction, or recognizability

It's an interesting definition.  The first two definitions given are what I would think of if someone asked me what "anonymous" means.  The third definition definitely made me think.  Lacking individuality.  Hmmm...

Over the course of a year and eight months I have written almost a hundred posts on this blog for all of the world to see.  During this time I have not lied.  I have not held back my feelings (for the most part), and I have not censored myself (once again, for the most part).  Everyone who reads my blog knows who is saying what is written here.

I have put myself out there for everyone to see and hear.  The good and the bad.  The sad and the happy.  The embarrassing and the not so embarrassing.  I have put my heart, my feelings, and my deepest thoughts out there for anyone and everyone to read.  I say things on occasion that most people wouldn't tell to their closest friends or family members.

However, recently a few people have chosen to comment to some of my blog posts anonymously.  I am not talking about the people from internet land that I've never met before.  I'm talking about people who know who I am and I know who they are.  But, wait!  I DON'T know who they are.  At least not this time.  I'm willing to bet, though, that if they would have signed their names under the comments left on my blog I would know exactly who they are.

That, to me, is disrespectful.  It is cowardly.  Here I am putting my thoughts and feelings out on the line all the time, but those of you who post anonymously cannot respect me well enough to take claim to the things that you are saying to me in return.

Why is that?  You already have the benefit of hiding behind a computer screen and not having to say it to my face or on the phone.  In addition to that, you are able to type it and walk away, not having to deal with my response immediately like you would if it was an online chat. 

The thing that makes it even worse is the subject in which the anonymous posts were about.  They have all been in response to posts about friendship, or lack there of, in the face of chronic illness.  I was posting about my feelings regarding friendships and how they've been affected by my drastic life change, this fun thing I call mito.  I was posting about how I feel; about how the actions of my friends, or lack thereof, makes me feel.  Most of what I was saying was that I was lonely; that I hadn't heard from many of my friends recently.  I did not automatically blame it all on my friends, either.  I did point out my faults when it comes to friendships with someone who is chronically ill.

What bothers me is this... After posting about being lonely (and mentioning going into depression again), why would someone who obviously knows me post anonymously?  Why, if you care as much as you say you do, would you post an anonymous comment on my blog instead of reaching out to me as "Susie Smith", my friend and/or someone who cares about me?  If you truly do "try and try" why in the world would you feel the need to post it anonymously?

If you really know me... I mean REALLY know me, you would know that I don't believe in things that I cannot see, or touch, or hear.  Everyone does show love differently, anonymous.  You are correct.  However, for me, it does need to be shown.  If I never talk to someone or see someone or find out in any other way that someone cares for me, I do not believe they care for me.  That's great if you feel that way.  I don't.  Actions speak louder than words.  That is something I say all the time.  However, you are not only saying that actions aren't necessary to show love/care, but words aren't either.  Well, I'm going to whole heartedly disagree with you there.

The two anonymous comments I received within hours of each other said two different things about calling, texting and/or emailing.  One of you said many people call, text or email because that's what they feel comfortable doing.  The other said that people don't call, text or email because they don't want to bother me. Interesting. Well... in response to the first comment, if you would have read the post "A bad case of the lonelies" you would have read that that's exactly what I was wanting.  In response to the second comment.... well, I guess all I can say is "bother me".  To quote myself from that same post (the one you commented on, in fact)... "But the fact that she called would make me feel better by letting me know that she's thinking about me and cares enough to check up on me." You say "when you feel good, make the call."  However, as I said in that same post, I sometimes go through weeks and weeks of not feeling well.  Does that mean that I don't want to hear from my friends?  If you have a friend or family member in the hospital, do you avoid calling or visiting because you don't want to bother them because they're not feeling well?  Or, instead, do you call or visit to check in on them and let them know that you're thinking of them and are there for them if they need you?  

When I posted "A bad case of the lonelies" I was not in a very good place (as pointed out by the comment that I was heading toward depression again).  I will admit... that post served two purposes.  One, to discuss the effects of chronic illness on friendships and other relationships and two, to possibly reach out to my friends to let them know how my life was affecting me at the moment.  To then get two anonymous comments which, whether intended or not, served to point out the things that I need to do and believe.  The part about caring about me is not well received as I have absolutely no idea who is saying it.

A couple of people have also mentioned to me recently that they are also busy with their own lives (jobs, kids, etc. etc.) and that I need to realize that.  I don't know what gave you the idea that I don't realize that.  Is it the fact that I am asking for a phone call every now and then?  Or was it the part about making plans to get together every now and then?  Oh, I know... it was the request to hear from my friends in some way (text, call, email, whatever) more often than every 2 months.  

I haven't been sick my entire life.  I know how busy life is when you have 2 kids, working 50+ hours a week, AND training for a half marathon.  I've been there... remember???  However, I do know that sending an email or text just to say "thinking of you" or "how are you feeling today", or calling while driving home from work to say a quick "hello", is definitely feasible more often than every 2 months.  Especially since you are obviously not too busy to read my blog and take time to respond.  If that is asking too much of you because of your "busy" life, then I think I will move on from our relationship.

So, you'll have to understand (actually, you really don't have to, but it would be nice), that if I haven't heard a word from you in months and you can't even sign your name to a comment that explains how much you supposedly care about me, I'm not going to believe that you care quite as much as you say you do.  You may not have to "see it or touch it", but I do.  

So, Anonymous, you continue to go about your lives feeling good about our relationship, whatever that may be, because you show love by thinking about me and praying for me, but not in any ways that would make me aware of that love.

I am going to be thankful for my friends who realized/recognized that I was having a difficult time and reached out to me to tell me how much they care, and signed their names at the bottom... better yet, there was no signing involved because when I answered the phone when they called I knew it was them, or when they stopped by I recognized their face. (If you are one of those people... Thank you and I love you.)

Anonymous, please take a moment to read the post below this one, "Explaining myself... again".  Really listen and try to put yourself in my shoes.  Once you've read it once or twice, think about the point of writing an anonymous comment... especially one in which turned things around on me.  After explaining how sick and lonely I had been and how nice it would be to hear from friends, do you still think that the best thing to say is that I should be the one reaching out to friends?  Do you still think that posting an anonymous comment was the best route to go when trying to tell a chronically ill, depressed person that people care?  People care so much... they just don't want me to know their names, or have to take any time out of their lives to show it in any way.  I should just FEEL it.  I should just KNOW that people care about me without any proof what-so-ever.  Yes, that COMPLETELY makes sense!!!  (as always, I really need someone to invent a sarcastic font.)

To everyone else, if you've gotten this far, I am now moderating my comments.  I wish I didn't have to because I feel that everyone should be able to say what they want, even if I don't agree.  What I don't want is anonymous comments from people who know me personally.  If you have something to say to me, and you know me personally, sign your name to the comment.  If you don't want to sign your name to it because you don't want the whole world to know, email me your comment instead.  However, if you try to comment on my blog anonymously and it's obvious to me that we know each other personally, I will not post the comment.  Everything else will be posted.

Thursday, February 16, 2012

Explaining Myself... Again.

Shitty day?  No.  Shitty month.  Yes.  Going on 2 actually.  Yes, we all have shitty days every once in awhile.  You know what really sucks?  I don't have shitty days every once in awhile.  I have them all the god damn time.  Over the last month, I have averaged about 5 shitty days a week.

I have had procedure after test after doctors appointment for the last month and a half.  I have been cut into and had a foreign object shoved into my chest.  I have had tubes and probes and fingers stuck in a hole that is supposed to be one way only more times than I prefer to remember.  I have spent multiple hours in an Emergency Room attempting to explain to the physicians assistant what mito is and that I am there for IV fluids ONLY, to then go through numerous unnecessary tests, 5 of which requiring being stuck with a needle (yes, 5 different times).   I have had to fly to Atlanta, Georgia just to see a doctor who knows more about Mitochondrial Disease than "I think I heard of that in medical school."  I have had my head in a toilet attempting to vomit when I'm hardly able to eat anything in the first place more times than I count.

I'm sick.  I'm tired.  I'm tired of being sick.  However, that's, amazingly, not what's bothering me the most right now. I'm tired of people not understanding.  I'm tired of having to explain myself.    However, I'm going to attempt to do it again for those of you who don't understand or even try to understand what it means to have Mitochondrial Disease or any other chronic illness that affects a person's life 24/7. 

The only thing that a healthy person experiences that comes anywhere close to the way I, or others with mito similar to myself, is the flu.  Mind you, it is still fairly far fetched to compare mitochondrial disease to influenza.  However, I am going to try so as to once again attempt to explain my life to others in a way that they would understand.  

So, please, PLEASE, take the time as you're reading this to really think about it.  Really think about how you would feel if you were in the same position as what I'm going to describe.  Almost everyone has had the flu.  Which is another benefit to comparing it to that.  So, read it slowly and really imagine what it would feel like.

When you have the flu, and I mean influenza, not a cold virus, you have a fever.  Your body is then having problems with temperature regulation.  One minute you are freezing cold.  The next minute you're drenched in sweat and burning up.  That is something a person with mito experiences every day (it's called dysautonomia).  That is something I experience every day.

When you have the flu, every muscle in your body aches and your head feels like it's going to explode.  No matter which way you lay, it hurts.  No matter how much you stretch, it hurts.  Advil, tylenol, heat packs, and ice packs don't do a thing.  That is something a person with mito experiences every day.  That is something I experience every day, but, most times, that pain is multiplied ten fold to what someone with the flu feels.

When you have the flu, you feel so fatigued and weak that picking up a glass of water to take a drink feels like lifting a 20 pound dumbbell and walking up a flight of stairs feels like climbing Mount Everest.  Well, it's been awhile since I've had the flu, but I think that's closer to describing mito than the flu, but I'm sure you get the point.  Every time I stand at the bottom of my stairs looking up at what I have to do (almost always occurring after I've been out of the house for a test or appt that completely wore me out to begin with), I wonder if I'm going to make it all the way to the top that time.  I actually envision it as a mountain I'm climbing at times.

When you have the flu, you are nauseous all day.  You lay there just hoping that you won't vomit because that will make you even more weak and make your muscles hurt even more.  Then, toward the end of the day you wish you could vomit just so you won't be nauseous anymore.  That is something many people with mito experience every day.  That is something I experience every day.  My nausea, however, is caused by, once again, by dysautonomia.  If I am up and around too long (i.e. a doctor's appt. or test), sometimes even for an hour or less depending on how much my body wants to cooperate that day, I get extremely nauseous and usually vomit.  My nausea is also caused by gastroparesis, delayed gastric emptying (  which means that I have to eat multiple small "meals" a day.  However, my gastroparesis usually makes it to where I am only able to eat a small breakfast then snack throughout the day on just a few bites of things at a time and then eat a few bites of dinner.  If we have something that is one of my favs for dinner, I have to be careful that I don't eat too much for if I do, I will either vomit or lay in bed sick for a few hours.

This only scratches the surface of what mitochondrial disease feels like for me every day of my life.  There are MULTIPLE symptoms that I experience that someone with the flu does not.  To see what most of those are, you can read my post What Mitochondrial Disease Means to Me, Part 4.  There are also side effects to my medications.  Then, of course there's the tests, procedures, and doctors appointments that someone with mitochondrial disease has to go through that someone with the flu would not.  

Then there's the emotional side.  When you have the flu, you know you will get better.  With Mitochondrial Disease I know I will NOT get better... EVER.  I also have to deal with the fact that I am getting worse.  It may be a slow process, but it is there none-the-less.  There is also the fear that I have passed this horrible disease down to my kids and that there's a possibility (albeit very small) that mito could shorten my life as well.  Then there's the emotions of guilt for not being able to be a good mother, wife, daughter, and friend.  There's the feeling of uselessness because I am not contributing to society.  There's the depression from missing my old life.  There's the boredom and loneliness from hardly leaving the house and not having the choice to leave the house because if I do it could make me very sick. 

It's almost ridiculous to compare it to the flu.  However, that's the best way I know how to explain to a healthy person what mitochondrial disease is and how it affects people... mostly me.  

Now, since you decided at the beginning of this post to follow through with my request to really think about mitochondrial disease and how you would feel if you were going through the same thing, I would like to ask you to continue that process of empathizing with me for just a few more minutes.

Friendships (well, any relationships) are difficult no matter what.  They take work.  Friendship with someone with a chronic, life changing illness, is even more difficult.  Imagine, as you have been, being in the situation that I pointed out above.  Imagine having the flu, but not for a week.  Instead imagine having it for 2 months.  Imagine feeling the way I pointed out above.  Now imagine not hearing from your friends throughout the entire 2 months.  Would you feel lonely?  

Imagine, again, going through everything I mentioned above.  What kind of emotional support would you need/want?  Would you want to know that your friends and family are there for you?  Would you be okay with just assuming that they are thinking about you?  Would you be okay with assuming your friends are reading your facebook and blog posts?  They don't call, text, or send an email.  Not even to quickly say, "I'm thinking about you" or "I miss you.  We should get together when you feel up to it," or "I'm sorry you've been having a more difficult time recently than normal.  I'm here for you though."  When you're feeling sick, isn't it nice to just know your friends care?  Isn't it nice to hear it from people when you're going through a difficult time?  Someone who is chronically ill is almost always going through a difficult time.  Some times are more difficult than others, of course.

Being friends with someone who is chronically ill is different than being friends with someone who is healthy.    It's hard.  I know that.  I know I'm asking for more from my friends now than I did when I was healthy (physically and mentally healthy, that is). If that's too difficult, then please let me know that you were not wanting a friendship in which you had to give so much and we will part ways.  I will try my best to understand.

It is also sad for me when I talk to my acquaintances online who also have mito or another chronic illness and they discuss what their friends have done for them (run a race in their name, spread the word about their disease, raise money, etc. etc.).  To then have a friend make me feel guilty for something they did for me, just tears me up.

What do I want more than anything right now?  (notice that I said "right now" since that changes, of course)  I just wish people would understand.  Please, just try to understand.  Don't assume you know what's going on with me.  Even if you've read my blog and my facebook status updates, you still don't know what's going on with me.  Facebook status updates are limited to a few lines. My blog posts may not be limited in length, but, as with both, I don't reveal EVERYTHING online.  In addition to that, you may keep up with my blog and my FB posts, but how do I know that?  And, as I've pointed out already, when going through a difficult time, you want to know your friends are there.  You want to know that you have friends who care.  (And, no, I'm not trying to rhyme.)

So, the next time you read something I wrote that only consists of two sentences (or even something I wrote, like this, that consists of multiple paragraphs), please don't assume you know what's going on with me, what I'm going through at the moment, or what I'm thinking.  Instead, please take a moment to think about what my life might be like since it is so incredibly different than most people and then call, text, email, or send word on the pony express to actually find out directly from me what's going on inside this crazy head of mine or with this crazy disease of mine.

Wednesday, February 8, 2012

A Bad Case of the Lonelies

This time of year never seems to be good for me.  The excitement of the holidays is over and it's cold and dreary outside.  But, wait.  It's not cold and dreary outside.  This winter has not been.... well, winter.  It has yet to snow more than a dusting.  The average high has been in the 40s or higher at times.  The sun has even been shining through the windows.  All of which never usually happens in January and February.

So, why in the hell am I still slowly going into depression mode again?  Well, this last month has been busy.  "Great!" you say?  Nope.  Not so much.  Busy used to be good for me.  Busy meant I had plans with friends, I was working a lot, keeping busy with activities for the kids, and training for a race of some sorts.  The main thing that busy used to mean... I had a social life.  Whether it was with friends or my husband, I had plans on the weekends.  Busy used to mean I was keeping my mind busy... happy.  Or at least not depressed.

My new busy looks more like this - feeling sick, going to the doctor, feeling sick, having a procedure done, feeling sick, having a test done, feeling sick, my home health/palliative care nurse visiting, feeling sick, going to the doctor, feeling sick, helping with my sick grandpa, feeling sick, trying to figure out how we're going to pay the bills, feeling sick, having another test done, feeling sick, going to another doctor, feeling sick......

Okay, I'll stop there, even though I'm pretty sure I lost you at "feeling sick" number 6.  However, that's exactly what my last month or more has looked like.  Activity makes me sick.  I've had a LOT of activity.  Therefore, I've also been sick a LOT.

Along with all of that, I've had a horrible case of the lonelies.  I thought Jan. was supposed to be everyone's slow month.  However, I haven't talked to 90% of my friends.  (I use a percentage to make it sound like I have a lot of friends to begin with.  More accurately, I haven't talked to 83% of my friends.)  For a couple of weeks I was pretty upset that I hadn't heard from any of them, including the one friend I'm closest to.  (In sixth grade terms, my BFF.)  I had been to Atlanta and back and yet no calls, emails, texts, or carrier pigeons from my friends to see how it went.  I was somewhat comforted later to realize/find out that my BFF was not calling because she was finding out through other sources that I was feeling bad so she didn't want to bother me.  When we finally talked, I explained that it's okay to bother me.  If I'm not feeling up to talking, I'll say so.  But the fact that she called would make me feel better by letting me know that she's thinking about me and cares enough to check up on me.

That actually brings up something about having a chronic illness.  Over the past month, as I stated once or twice above, I have not felt well the majority of the time.  Even if I've felt well, I've had to make myself rest up so I have energy for the next day's test, procedure, appointment, etc.  The worse I feel and the more of that crap that I have to go through, the more support I need.  However, the worse I feel and the more of that crap that I have to go through, the less I reach out to my friends.  But, I haven't had much support on the friend front.  Is it because they don't want to bother me because they think I'm resting or not feeling well enough to talk?  Is it because they don't want to talk about nothing but all the crap I listed above (being sick, appts, tests, etc.)?

Then there's those friendships... we've all had them... in which it's totally one sided.  If I don't call, text, email, or send a letter via pony express we don't talk.  If I don't invite them over or make plans to get together, we don't see each other.  So what do you do in those situations?  In the past when this has happened, "see ya!".  But in the past I had a self esteem, more friends, or at least the ability to make more.  So, what now?  There's not much to gain out of friendship like that.  And all it seems to do is bring me down when I think about how close we were at one point in time (in one situation).

All relationships are different when you have a chronic illness, but friendships are especially difficult.  It's difficult for me to put forth a ton of effort.  I don't call people a lot because many times I don't feel like talking on the phone.  I can't make plans with people to go places as I cannot tolerate that much activity.  I can't make plans period because many times I have to cancel at the last minute due to feeling too sick.  In addition to that, I don't figure people want to come over all the time just to sit and talk.  I don't have to assume that, actually, because if people wanted to come over and sit and talk to me then they would.  There is only one person who does that... and it makes my day/week when she's able to visit.

I even see one of my best friends every day of my life, but I still get lonely.  He is so busy being an employee, a father, and a caretaker that at the end of the day he doesn't have time to be a friend or a husband.  Sometimes it makes it worse that I'm around one of my best friends all the time but never get to spend any time together as friends or lovers.  It almost makes me more lonely.

So, my main connection with the outside world on a daily basis is the internet.  I check my email and facebook constantly throughout the day with the hopes that someone sent me a message or interacted with me somehow.  Oh my god that's so sad.

I suppose having "the lonelies" is just one more aspect of being chronically ill that I have to accept and live with.

"One may have a blazing hearth in one's soul, and yet no one ever comes to sit by it." - Vincent Van Gogh

"There is no greater sorrow than to recall in misery the time when we were happy." - Dante