Scream

I want to share a poem with you all.  I'm sure everyone dealing with Mito, POTS, or any other chronic, debilitating illness can understand exactly how this feels.  Thank you, Sarah, for writing such a beautiful, meaningful poem.

Scream

By Sarah Aumick

Hear my screams

My cries of anguish

As my heart shatters in my chest

Deep in my breast

A hole resides

Tearing my apart inside

As I try

Try so hard

To live up to everyone’s expectation

To laugh and smile

As my heart breaks

So

All I ask is, “Do you see past my smile?”

Hear the cry in my laugh

And the scream in my prayer

Give me a hand up

Pat me on the back

Because I’m struggling

And all I need is an acknowledgement that I’m in pain

So hear my scream.

A Note to the family, friends, and caretakers of people with chronic, debilitating diseases

It's so difficult to be in the position I'm in; to live the life I lead.  People do not understand.  The only people who can even come close to understanding are those who are going through the same thing I am.  Sometimes it makes me just want to escape, to become a hermit or recluse.  It can be VERY frustrating dealing with people.

I'm sure I'm not alone in these feelings.  This is something everyone with with chronic illness deals with.  Because of that, I want the caretakers of those people to understand a few things...

Some people get upset about stupid petty shit.  I worry that I will not be around to see my two beautiful girls walk down the isle at their wedding while others are getting worked up about little things that if they really thought about it, would have no reason to be upset in the first place.

None of us know how short our lives really are.  Some of us have to worry about it more than others.  Some of us should realize that others have to worry about it more than others.

There are people out there who wait until someone is on their death bed and/or dead before they make themselves a part of their life.  It's a little too late by then.  For some people I think they just don't realize it until it's too late.  But for many/most they are only there at that point in time for appearances.  They probably don't even realize they're doing it, but they're just putting on a show for others, to make sure they appear thoughtful and caring.
Be there for the person when they're alive!  Be there for your family and friends when they need you... when they're alive!  They don't need you at their funeral.  They're dead!!!  It's too late by then.  Don't try to be a martyr when your friends and family are dying.  They need you LONG before that.

To the family and friends of those with mito or other illnesses - We're not faking it.  We aren't doing it for attention.  We are sick.  We hate being sick.  It's miserable.  If we say we're not feeling well, we're not feeling well.  We don't want to deal with other crap.    We need help... especially if we have kids that we have to take care of when we aren't even able to take care of ourselves.  There are many days in which mito patients are unable to take care of themselves.  Be there for them.  Offer to bring them a meal, take care of their kids, or just sit with them while they continuously vomit or writhe in pain... and not because they'll do something for you in return, or because they'll owe you one.

We don't want to take care of other people while we're sick.  However, most of us still really care and want to help others when we're able.  We feel guilty that we can't, but that doesn't magically make us well enough to do so.  Give us a chance, but don't get mad when we can't help.  There are things that we can help with and things that we can't.  In my case, if I can help, I'd love to.  If I can't, please don't get mad.  I have to be careful that doing something to help others would not make me more sick (i.e. something that is too physical, would increase my pain, or disrupt my sleep).  If that is being selfish, then so be it.  I think I can speak for all of us with mito or another similar illness in that we would love to be able to pay people back for what they do to help us, but sometimes we just can't, and it hurts when we're expected to.  Can't people just help us because we're their family or friend and not because they'll get something in return?

On the other hand, please keep in mind, we may be sick but we're not completely useless and incompetent.  We may have brain fog but we're not stupid.  In my case, I haven't forgotten everything I learned in nursing school.  I was a good ER nurse.  I was well educated.  I may have trouble getting the right words to come out of my mouth but they're still in my brain.  I love to be able to help others with medical questions because of my training, if you just give me a chance.

People who've had their lives completely turned upside down and inside out by mito (or another debilitating disease) struggle with their self worth.  Who wouldn't in our position?  We can't work and help support ourselves and our families.  We can't take care of our kids.  Hell, we can barely take care of ourselves.  Don't make it worse by treating us like we're completely worthless or an idiot.  Give us a chance!

And just because I can...

More than anything, what we need is support.  Support can come in many different forms.  If you can't, or don't want to help with laundry, chores, taking care of the kids, errands, or holding our hair back when we vomit, then be there as a distraction, as a shoulder to cry on, as a friend to laugh with.  Sometimes all we need is some company.  Someone to talk to us when we're sick, or down. You know, whoever said "Laughter is the best medicine," was not wrong.  So come over and make us laugh/smile.  Just be there.  Sometimes that's all it takes... to just be there.

So, family, friends, and/or caretakers of people who're living with a debilitating disease, are you confused yet?  Let me spell it out for you...

Be there for your family member and/or friend who has a debilitating disease BEFORE it's too late.

Don't get mad at them for stupid little shit when they're worrying about how to stay healthy this week, how to pay for their necessary medications (mortgage, electric bill, etc.), or whether or not they'll live to see another Christmas.

Help us when we need help... but without expecting something in return.

Let us help others when we're able, but don't get upset when we aren't.

Don't treat us like we're useless and incompetent.  Make us feel as though we still have a reason to be here, like we're still a valuable member of society.

Last, but not least, support us!  Be there for us!  Give us a shoulder to cry on and, even more importantly, a person to laugh with.  It is, after all, the best medicine.


I also want to share an article from ButYouDontLookSick.com.  It is titled "36 easy things that you can do to make the life of your chronically ill friend a bit better."  The most important thing to take note of is when the author, Christine Miserandino, discusses her friend who had the flu and received flowers.  She states, "...Since I am sick all of the time - I get nothing.  Am I any less sick, sad, frustrated, lonely or bored?  NO... I need your love and support now more than ever."  I couldn't have said it better myself.

Since I know you have now put a lot of thought into what I wrote above about being a family member, friend, or caretaker of someone ill, I'm sure you will also take the time to read and think about all 36 of the things Christine suggests that caretakers do as well.
36 easy things that you can do to make the life of your chronically ill friend a bit better

Please be sure to read the next blog post as well.  I am posting a poem in a post all it's own because it deserves the recognition that it might not get if it was in the context of another one of my posts.

The Mito Hole

Well, it's been 9 days since my last post and things haven't gotten any better.  Of course, you probably don't know what I said in my last post since a whole whopping 7 people read it.  I'm setting records here!  Then again, I'm also not writing anything very insightful at the moment either.  Recently it's been more bitching than insightfulness.   And unfortunately, that's not going to change with this post.

Earlier today, when I was out running an errand despite having zero energy and having increased weakness and pain, I was giving some thought to why I've been sick so much recently.  It occurred to me that the reason why I've been sick more often was because of what I was doing at the time... running an errand... better known as activity.  I will explain...

Because of our increasing problems with money and inability to pay our bills, my dear husband has had to work a lot extra recently.  Just last week he worked almost 60 hours, 12 of them being on a Sunday night from 5:30pm to 6am and then taking a hour long "nap" before going in to his regular job at 8am.  As you can imagine, he was exhausted that night and for a couple of days afterward.  Unfortunately, that also fell at a time that I was having another mito crash.  So I wasn't able to help with much of anything.  In fact, I just added more work for him to do since he had to take care of me.

Of course, with how much he's been having to work recently, I haven't had much of a choice but to help with things.  Life goes on whether I'm sick or not.  The problem is that the more I do, the sicker I get.  The more my husband works, the more I have to do, whether I'm already sick or not.  But since I still can't do very much, things don't get done around here as much as they need to be - i.e. laundry, cleaning, grocery shopping, etc.

I just wish we had someone to come help us once a week.  If we had help once week for 3 or 4 hours, we would be in much better shape.  Laundry would get caught up, some cleaning could be done, and a couple of errands could be run, and maybe even transport my 13y/o to soccer practice.  I had someone who did just that for a couple of months when we had the money (after I got my disability back pay).  When we started struggling with money again we had to let her go.  Then, when I was getting sicker and had palliative care, they sent a volunteer who came once a week for 2-2 1/2 hours and helped with everything I listed.  She continued coming for a few weeks after palliative care was discontinued but she stopped helping as much and sat and visited instead.  We did okay for awhile during the summer because I had more good days than bad and my oldest daughter wasn't in school so she was able to help with everything.

Of course, if you're a regular reader of my blog you've already read my post Chronic Financial Illness Part II.  As I said in that post, being ill would be SOOO much easier with money.  I don't mean winning the lottery kind of money.  I just mean having enough money to pay our bills with a little extra each month kind of  money.  If so, we could pay our bills so my husband wouldn't have to work extra.  We could pay someone to come help us each week and/or we could pay someone to come clean our house once or twice a month.  That doesn't count how much easier my life would be and how I could probably be healthier if we had the money for the equipment and medications/supplements I need and have been prescribed.

So... I hardly see my husband.  We still don't have enough money to pay our bills, besides having any money for anything extra that might make life fun and/or interesting.  I am more sick than usual with more bad days than good recently.  Things are piling up around here.  And, as I discussed in my last post, I don't have friends knocking down my door and the phone's certainly not ringing off the hook (or at all).  Not to mention the fact that Christmas is already weighing heavily on my mind. (the weight being the burden of having to get help from a charity just to give our kids xmas presents... which is a huge weight for an independent person like me who hates getting handouts and who has never been "poor" in my life.)
...and that's just the big stuff.

Sometimes I just don't want to do it anymore...

Tough month

Every now and then I get in a bit of a funk.  You can probably tell by my last post that this is one of those times.  It usually happens when one, I've been sick a lot recently, two, I haven't spent much time with friends, and three, I don't have anything coming up to look forward to.  Of course, number two happens because of number one.  (this would be one of those times in which my childlike husband starts giggling and making jokes about peeing - number one - and pooping - number two)  When I have mito crashes more frequently, or I'm just generally more ill (my muscles are a lot more weak, I'm fatigued and tired all the time which means sleeping a lot, I'm mildly nauseous all day, and I just have a general ill feeling), I don't get out of the house much or visit with friends.  Over the last few weeks, I have had those exact problems.  I had a severe mito crash 2 1/2 weeks ago and a couple of mild ones since then.  Many of the days in between I have just felt generally ill.

My pain has been a LOT worse over the last month as well.  Every time I'm up and around my neck, head, and shoulders start hurting worse than ever before.  And it starts up within a few minutes of activity.  My pain is normally controlled well, so it's usually kept down to a 2-3/10 on the pain scale.  However, recently, my pain has been closer to a 6-7/10.  My medications are just not cutting it.  There have been many days in which I am in tears by 5 or 6 o'clock because I just can't stand the pain anymore.  Every minute or two I'm trying to stretch the muscles in my head, neck, shoulders, and arms.  It never helps but I feel like I have to do it.

The pain in my head, neck and shoulders is called coat hanger pain.  It's called that because the pain is in the shape of a coat hanger.  It is very typical in dysautonomia.  Muscle pain is very typical in mitochondrial disease due to muscle weakness.  Doing everyday activities is like lifting weights at the gym.  So, I don't know why I'm having increased coat hanger pain.  There're a couple of likely possibilities, though.  My dysautonomia could be worsening and preventing adequate blood flow to my head and neck.  Or, my mitochondrial disease could be worsening causing increased muscle weakness, including in my neck, which would then cause pain when I use those muscles. That makes sense right now since my legs have been weaker recently too.  It could be a mix of both scenarios.  My neck pain is better when I'm laying flat and when I'm able to rest my head against something.  I have, therefore, been using the headrest on my wheelchair all the time now.  I never thought I would get to that point... at least not any time soon.

In addition to the increased physical problems causing my poor mood, I've been a little down because of the lack of supporting friends at the moment.  I have been trying to make new friends with a couple of people I met through the walk who're in the mito community.  It has been nice to talk to people who know what you're going through and dealing with.  Plus, I feel like I can give something back because I can relate with them as well.

Unfortunately, it takes awhile to build friendships.  In the meantime, I'm lonely as hell.  I can't get out of the house as much when I'm sick, which I've been recently, as I discussed already.  People aren't lining up to come see me or call me either.

Sometimes you just really need a friend to come give you a hug and tell you everything's going to be okay.  Sometimes you try to let your friends know that and, despite all the dropped hints and even blunt statements, you still don't hear from anyone.

Sometimes it's just not worth the effort anymore.... any of it.

Hopes and Dreams

Hopes. Dreams.  We all have them.  Right?

Goals. Bucket lists.  Plans.  Intentions.  Purpose in life.  Ambitions.  Aspirations.  No matter what you call it, everyone has them.  Or do they?

I don't.  I used to have a lot.  In fact, I used to have my entire life almost planned out.  I knew what I wanted to do with my life.  I had plans.  I had dreams.  I had aspirations.  I had a list of things I wanted to do in my lifetime.  Well....   not anymore.

Tonight I was sitting in bed talking to my husband.  I looked down at my feet and thought, "Man, do I need a pedicure."  Now, with the way my brain works sometimes, that one little thought turned into deep thoughts about hopes and dreams.

You see, after thinking that I need a pedicure I realized that I won't be getting one.... ever.  At least not if I'm paying for it.

Maybe I should come up with an abbreviation for the parts of my life - PM for pre-mito and AD for after diagnosis. I think I'll stick with pre-mito instead of before mito so the abbreviation isn't BM.  I talk about BMs enough in my blog.

So, PM (pre-mito) I would look at my feet, think I need a pedicure, and then think "when things settle down in our lives" or "when our money situation gets better I'll get one."

That goes with anything I would have hopes or dreams about.  If I was thinking about traveling to Europe, I would just say to myself "when I get older and the kids are out of the house" or "in a few years when my husband and I are making more money, since we will both slowly advance in our careers."

PM, if we were going through a difficult time financially, I could look toward the future when everything would be back to normal (my husband would be employed, we've paid off our debt, the extra medical bills are gone, etc.).  AD, there is no end to our financial difficulties.  We can't pay off our debt because we still don't have enough income to stay above water each month.  The medical bills are only going to continue to grow as I continue to have more health problems.

PM, I could look forward to riding our motorcycles again after we sold them because we had a baby on the way that was going to keep us happily busy for a couple of years.  PM, I could look forward to my next trip to Colorado to hike and enjoy time with a good friend.  AD, I can't drive a motorcycle due to my muscle weakness (and we, of course, can't afford one anyway) and I won't be climbing any more mountains in my lifetime.

PM, I could look forward to my yearly raise and a possible promotion in the future because I took pride in my work.  AD, there is not yearly raise for social security disability and there's not much I take pride in anymore either.

Maybe everyone is like this, but I always had big dreams.  I planned on returning to school to get my masters degree in order to be a nurse practitioner (and double my salary - but that's not the only reason why I wanted to do it).  I planned on traveling a lot.  I planned on adopting an older child who's been in the system for too long and needs a loving family.  I planned on running a marathon and climbing many more mountains.

I had little dreams too... To make enough money to be comfortable.  I never wanted to be rich.  I just wanted to be comfortable, to be able to drive decent cars and live in a decent house (we reached that goal) and buy our kids the things they need and the occasional things they want without having to figure out where the money was coming from.

Any time I would have a thought like I did about the pedicure, I would just think that it's not always going to be this way and look forward to the future.  Things weren't always going to be that way.  It was always just a rough patch we were going through.  Or maybe it wasn't a rough patch, it was just a time in which I had to put off some of the things I wanted to do for happy reasons as well - i.e. being pregnant.  There was always the future.

However, it's different now.  Where I used to dream about the future and enjoy thinking about a time when things would be better or different, now I do all I can to avoid thinking about the future.  There's nothing there.  I don't know how things are going to be next week besides next year or 5 to 10 years from now.  All of the things I hoped and dreamed for are impossible now.  Whether it's because of money or my health, I'm not going to be able to do the things I have always dreamed or hoped to do.

Many optimists out there are probably saying, "make new dreams" and "you can still find a way to fulfill your old dreams".  Well, if you were in my position, you would understand why that isn't true.  Make new dreams?  I may be sick but my mind is still the same.  I still desire the same things.  And the second reason why that's not possible is the same reason why it's not possible to find a way to fulfill my old dreams... I don't know what my body's going to do from day to day.  I can barely make plans for this weekend besides 5 years from now.  This is a progressive disease.  Unfortunately, I have seen the progression in the 2 1/2 years since I've been sick.

As I lay in bed thinking about all of the things I would like to do with my life, it occurs to me that I'm too sick to do most of them.  Let's just say, for one minute, that I'm not too sick to fulfill some of my dreams.  Everything costs money, and lots of it.  That is something that we don't have.

So, for now, here I sit.  In the present.  Not looking toward the future.  I have nothing to look forward to.  So I push on, day by day.  Living each day as they come, just hoping that my disease will not get worse.