Friday, November 20, 2015

The Uncomfortable Side of Chronic Illness

I need to say some things so others know and also so I can remind myself.  Sometimes I get so lost in what others think and their misconceptions and preconceived notions that I forget the truth of what life with multiple chronic illnesses is really all about.

Let me enlighten you as to what it is like for me lately.  This morning, around 4:30 am, I was awoken from a very good sleep - which doesn't regularly happen a lot because of insomnia, and I didn't actually get to sleep until well after midnight - by the urge to move my bowels.  Cramps, diarrhea, painful wiping and the anxiety of how much longer I will have until it happens again consumed my sleepy mind.  I managed to get back to bed and laid there, uncomfortably and not sleeping, until around 7:00 am when I had to run to the bathroom again.  Now this time there was much more anxiety.  You see, we only have one bathroom.  My sixteen year old daughter has to get ready for school and is usually in the bathroom around this time.  She keeps her time in the bathroom very short and accommodates me when it's possible, but damn, does that make me feel bad.  A girl needs her bathroom...poop issues or not.  I'm stealing that from her.  Immediate thoughts of how much I suck as a mother and how she must hate me started filling my already anxious mind.  Self hatred and depression creep in and are coupled by complete and utter frustration at my non cooperative body.  I really hate myself.  For so many reasons.

Luckily this morning, the fates allowed me to slip into the bathroom, die from the diarrhea, and slip out before the kid needed in there.  However as soon as she was finished, I was back in there for the third time this morning.  More painful cramps, more acidic diarrhea that burned my whole perineal area, and more self deprecating thoughts.  I thought I could just go back to bed.  I am just so tired and weak.  But as soon as I get comfortable it happens again.  Back to the bathroom.  I'm so drained from doing this over and over and over again. 

Now I'm up.  I am obviously not going to be able to go back to sleep.  I can't take a shower yet because I might have to poop half way through.  Alright, I'll blog.  So here I am.  I've had four more episodes of this diarrhea and it's only 9:30 am!  This will only continue throughout the rest of the day because this is my life lately.  All I can manage to do anymore is poop and mentally tear myself apart.  The doctors seem to think I'm totally healthy.

My furry little baby dog Loki is sleeping beside my on the couch snoring away.  He's curled up on his favorite blanket without a care in the world.  Meanwhile, I'm sitting here trying to keep the thoughts I want to write straight in my head.  My head is pounding with a dehydration headache.  My butt hurts.  My lower belly hurts. I'm nauseous.  I'm so tired.  I'm exhausted actually.  I need to take a shower but I have no energy.  It's all I can do to type this.  I weighed myself today.  I've lost seven pounds this week alone.  I'm not exaggerating. This is Crohn's disease.  This is bowel disease.  But the doctors won't acknowledge it.  Not that I can go see the doctor anyway.  No money for the copay. Waiting on SS Disability to come through...still.

I'm hanging by a thread, but the world thinks I'm okay.  The doctors think I'm okay.  My parents think I'm okay.  My friends think I'm okay.  I try my best to portray okay but you know what, I'm NOT okay.  Nothing about this is okay.  This is why I cannot remain positive.  This kind of illness just destroys you, physically and emotionally.  I don't think regular people realize that.

I recently had a post about my Game of Perfection and how I continually have to put all the pieces of my life back together again and again. It's changed me so much.

Most people who knew me just one year ago probably wouldn't even recognize me today.  Not that my looks have changed that much.  But I have changed.  I have had to endure way too much.  My husband and daughter and I have been through so much in the last two years alone that I don't honestly know how we have made it this far.  But to all the people who think I've changed, lost my faith, am not who I used to be, seem bitter, or have completely "backslid" guess what, you're right.  And the reason is because I have had to manage this, all of this, all of the chronic illness, pain, depression, anxiety, financial ruin, waiting, not receiving the help I need from doctors and the government, all of this and more - I did it alone. Aside from my husband and a few key people in my life (and I mean about three other people literally) I have been abandoned by everyone. I'm must just be too much of a problem that they can't be bothered with.  Too many people believe that if it doesn't affect them directly, why bother with it at all.  My "Christian" friends have taken to the "I'll pray for you" route.  That's all well and good but how about a loaf of bread?  How about a can of soup?  How about you call me on the phone, or better yet, come to my house and check on me.  Ask me if I'm okay and if I need something.  Because I do.  I need a lot of things.  I need help.  My family needs actual tangible help.  Not prayers.  Not good vibes.  Not good thoughts.  And definitely not sayings like: "Everything happens for a reason, in God's time."  "This too shall pass."  "Things will get better." And my personal favorite,  "God's got great things in store for you." ( For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and future." )  Yea?  Bullshit.  I'm already harmed, I have no hope and seriously, can I have just one peek at these remarkable plans God has for me?  Because so far, they suck.  His plan sucks.  I hate his plan.  His plan is stupid.

Chronic illness does not work like this:

YOU say:  You're depressed.  You sit at home all day. Come over to my house and I'll tell you all about the wonderful things in my life.  We'll do something fun.

I think:  I really don't want to leave my house.  I haven't showered in four days.  I'm too exhausted. I have no way to get there and if I did I can't afford gasoline for the car I have to borrow.  I don't think I'll make it there without having to stop and use the bathroom along the way and what if I can't get to one fast enough. I'm entirely too tired to drive safely.  I've been up all night with pain and diarrhea.  I'm not sleeping.  I'm scared. I don't want to come and hang out and pretend to be okay.  I'm not okay.  My body hurts and I physically cannot do anything. But I don't want to hurt your feelings even though listening to all your stories and looking at all the stuff you spend tons of money on will make me even more depressed.  My husband is struggling to work and shuttle our daughter around to her special Nerd school and her job and do everything for her because I'm a deadbeat parent.  My husband is doing the best he can to do just about everything, but we don't have enough money to buy groceries this week.  He needs help.  My husband needs a break.  He needs to be taken care of too and I can't do it.  Chronic illness is hard on the caregivers too.

I actually say:  I'm not feeling great today, can we do this another day?

YOU say:  No, I have plans every other day.  I really think you can do this today.  You're fine.  And get here soon, it's getting late.

I think:  I can't make plans.  I'm unreliable.  I hate myself.  I'll figure out a way to do this for you.

I actually say:  Okay, I'll be there as soon as I can.

This is what should happen:

See the difference?  YOU come to me.  YOU inconvenience yourself because I'm already inconvenienced in 86,392 different ways because I am a sick person. Come to me.  Sit with me.  Lay on the couch with me and watch a movie.  Brush my hair.  Rub my feet.  Tell me all the things you love about me.  Offer to do my dishes or run the vacuum.  Laugh with me about the stupid things my dogs do during the day.  Stay with me at my house, where I am comfortable, and talk to me about things that I want to talk about.  Stop showing off your perfect life for five minutes and focus on me - just me.  I'm sick.  I need help.  I need special treatment.  I need special considerations.  Just hold my hand.  Put your arm around me.  Hold me.  Make me feel like I'm worth something.  Pet my dogs.  Hug my husband and thank him for taking care of me and doing the best he can.  He is doing everything he possibly can and you know what, he has a chronic illness too.  He's had two brain surgeries and has irreversible nerve damage and chronic pain and numbness because of it. There are life long repercussions from nearly dying from bacterial meningitis, staph infection in your blood and a Syringomyelia caused by Chiari Malformation.  He's not in much better shape than I am.  He's a champion.  (Thank a Vet?  Hell, THANK A CAREGIVER!)

No, I don't want your pity.  I don't want you to feel sorry for me. What I do want is your compassion.  I want your understanding.  I want your help.  I want you to know that just because you say "it'll be okay",  right now it is very, very far from being okay.  Just because I laugh doesn't mean I'm not dying inside.  Just because I show you a happy smile and seem interested when you tell me about the new things you just bought or all the great things you are doing, doesn't mean I don't want to punch you in the face because I can't afford to go to the doctor and get my medication right now and I know you could help me but are choosing not to.  It also means that when I am alone I am going to fall further into depression because my daughter will be home soon and there is nothing in the house for her to eat.  It does mean that I am going to cry myself to sleep again tonight because I have only have one roll of toilet paper and it's only Tuesday and my husband won't get paid until Friday and I've been so sick lately I'm using a whole roll myself every day.  Think about what your actions and what you are saying is doing to me.  To sick people in general. 

So that's that.  That's what's in my head, in my heart.  That's my despair and my wish for others to understand. To every other sick person out there, I'm truly sorry you are sick.  And I promise, I'm going to continue saying all the things that most others just keep to themselves.  I'm tired of being the only uncomfortable one.


Heather said...

How can I help?
I want to help.
Others helped me.
<3 fellow FM/Crohnsie

Jenni Schaeffer said...

My family and I greatly appreciate your heartfelt offer to help. The only thing I ask is that you share this post with others so they can see how Invisible Illness - just like Cancer and Diabetes - really impact families. Everyone, regardless of their disability, should be treated fairly and compassionately. That would help tremendously! Thank you so much for reading Jenni's Guts! HUGS!!!

Michelle McGuire said...

I love your honesty. I feel the same. Crohns really sucks. Your entire life is on hold due to a stupid disease. You dont knw when your gonna have a good day. It breaks my heart, to have to lay in bed all day when my daughters want mommy to pay attention to them. Your completely right, I feel totally useless not being able to get my ass up to put a load of laundry in the washer, or make my daughters pancakes, or do their hair for school.. Ifs frustrating to not be able to do the simpliest shit. Its so annoying to start driving somewhere and have to stop to go to a public restroom, plus the faces the workers make at you for using it.. If they only knew! Thankfully I have a job but I just feel like I could never look for another one because I dont know when Ill have another episode! N your right all this god has a plan for you shit, well I have news for you people when your having pains so drasatic , you cant tell if you need to shit or throw up, but at the same time you can hardly manage to force yourself to get up n make it to the bathroom, let me know how yout praying is working out for you! Its a living nightmare. People telling you wow how do u stay so skinny, trust me Id rather work at staying fit like normal people so then losing weight from being sick! Id love to wat whatever the hell I want for a change.. N kudos to my boyfriend for dealing with me I know its not easy, a man always thinks the woman is going to attend to him and take care of him for the most part, well it just doesnt work that way with this disease. I can totally relate to your blog. Id like to offer you some hope for better days but I know that you probably dont want to hear that crap! I do hope that you are able to get your disability n insurance straightened out. When i was first diagnosed I had it really bad, after I started the Humira injections it was like a miracle everything was gone, i was almost back to normal.. Slowly but surely the symptoms started creeping back, buf I can honestly say they are a little bit more toleranble then before so the meds do def help!��

Jenni Schaeffer said...

Michelle, I'm so glad you found me! Thanks for reading. I appreciate your support and understanding. It literally takes one, to know one. HAHA!! Be well and Happy New Year!!! ~ Jenni

DebraEllen said...

Hello Jenni, I too am lucky to have Crohn's. Yes, you heard right- lucky! I was 17 when the dx was given. I am now in my 50's. Speaking for myself, I have had to separate my life- work is work, home is home and yes, the bathroom is mine. My family has only ever had one restroom. Believe me, I had my spots picked outside if I ever had a situation where a family member was in the bathroom. And driving- my husband knows if I say pull over- he pulls over! Everyone else shares MY bathroom space. My daughter only took showers and used the restroom in the bathroom. She had her dressing table with blow dryer and make up in her room. PLEASE do NOT blame yourself for being a bad parent. This just isn't so.
I am glad I found your blog. I am one of those people who say- You can do it!
Take care- DebraEllen

Anonymous said...

OMW Jenni's Guts, Your blog is amazing, I just started blogging about my life with Crohn's, Sometimes I feel awful for saying some things, but its the truth and it sucks. I can totally relate to everything you said. It sucks being the only one in my friendship group who is a total bore because I feel like shit literally. To anybody with Crohn's or a chronic health problems, the saying "it gets better with time" Bullshit and don't listen to it, I mean yeh it does get better eventually but than shit happens again. Always remember that "it only gets easier because you can handle it better, your stronger than yesterday and braver than the second before.. Hope things work out for you, I'll defo be reading your blog from now on, kinda made me smile a little too, to see that were not all alone thinking about this kinda stuff :) Happy new Year.

maureen kaech said...

What a great post!

Anonymous said...

Thanks for being so honest in your post and saying what all of us would like to say. I can relate to everything you are saying. I've been chronically ill with diarrhea for the last 10 years. I've had relatives tell me that I'm sick because of my negative thinking and I brought it on myself.

I really hope you get your disability soon. and thanks for the blog. You've done us all a public service!

Jenni Schaeffer said...

Thank you everyone, for all the great responses to this post! :) HUGS to all!!! ~ Jenni

Nettie Paruta said...

I feel like this is me writing this!

Karla Zamora said...

Hi Jenni,

I'm going through the same hell. All my tests are normal, everything looks "fine" and in the mean time I'm slowly dying from this debilitating disease that I don't even have a name for. In the last two weeks I have lost about 17lbs, was hospitalized, tested and per the team of doctors that were conducting all these exams I'm clinically perfect. Yet the constant severe pain, the disruptive diarrhea and the exhaustion are still there. My family thinks it's mental, and that just blows me away, heck I'm sure the doctors thinks so too. Why would I mentally wanna bring this upon myself? I wish someone could be in my body for just one second so they could experience what I'm going through. Reading your blog has at least made me feel like I'm not alone. I don't know how to get anyone to understand what I'm going through

Karla Zamora said...
This comment has been removed by a blog administrator.