Saturday, December 22, 2012

Chronic Disease = Chronic Loneliness

First, a little update for those that want to keep up....
Last week I had a mito crash.  It was a typical mito crash, as mito crashes go.  Well, maybe a bit worse than typical, I suppose.  I had one day of nausea and vomiting followed by multiple days of extreme fatigue, weakness, and headache.  In fact, the day following my n/v I was probably weaker than I've ever been.  I slowly got better as I always do.  Well... kind of.

Last Sunday I thought I was on my last day of my crash.  I was at about 75% of my "normal" self after a crash that started on Tuesday.  We went to my in-laws for our Christmas gathering.  I felt okay the entire time I was there, minus some weakness (that's the 25% I'm referring to).  When we were heading home I started to feel horrible (nausea, headache, weakness).  The next day I didn't eat much and felt a little nauseous.  The day after that is when I really couldn't eat anymore without vomiting.  It's now Friday and I've barely eaten in the last 5 days.  I can only keep soft foods and liquids (shakes, pudding, ice cream, etc.) down and that's only if I eat a little bit at a time.

So, needless to say, it's been a tough couple of weeks.  Funny thing is that I was going to post at the beginning of last week about how good I had been feeling.  My last post, in fact, was right in the middle of when I was feeling good.  However, I wanted to discuss the doctor's appointment so I thought I'd wait until the next post to tell everyone how awesome of a week I had.

It was amazing.  I left my house to do something every day a couple of weeks ago.  I had a doctor's appt one day, visited my grandparents the next, had a meeting with social services to get help for Christmas presents and a meeting with my daughter's school counselor the day after that.  That was all just on Monday, Tuesday, and Wednesday.  I don't recall what I did the last 2 days of the week but I went out.  I couldn't believe how well I was tolerating it all.  Of course, while I was hopeful that I would continue to feel that way, I was also waiting for the shit to hit the fan, per se.

Well, the shit hit the fan.  And it's continuing to do so.

I am very thankful that the last time I was in the hospital my doctor changed my IV fluids to daily instead of 3 days a week.  I have also had days over time in which I didn't use my fluids.  Therefore, I have some extras.  Right now, since I'm barely able to eat or drink anything, I've been trying to take in a liter and a half a day.  That, along with the very little bit I've been able to take in food wise, has kept me above water so far.  However... I don't know how long I'll be able to continue at this rate.  No matter what, I will be okay until after Christmas.  I will make sure of that.

On another note...

Being sick is lonely.Very lonely.

As you may already know from my blog, I don't have a lot of friends to begin with and most of my family is barely there (except for my loving parents).  When a person is sick, including myself, they will lay in bed and watch tv or read, and feel bad.  That's about all a person can do when they're sick.  That's all I can do right now.

The only connection I have to the outside world when I'm sick is the phone and the internet.  Mostly the internet since many times I am not up to talking on the phone.  I am on Facebook all the time.  I update my status on a regular basis.  I'll be honest.  I update it for two reasons.  One, to let my family and friends know what's going on.  Two, to know that I have family, friends, and other mito supporters that are there for me and care.  However, the 2nd purpose isn't working so well.

I have almost 350 facebook friends.  Many of those are from mito support groups.  I am always seeing people updating their status with how they're doing or what's new with them or their child with mito.  I, along with multiple other people, am always commenting saying that they're in our prayers (obviously that's from the other people) and thoughts, etc.  Mainly just letting everyone know that we're there for each other.

I also have a couple of friends who I talk to outside of facebook (in addition to facebook) who also deal with mito on a regular basis, whether it's themselves or their child.  I feel as though I am a good friend to a few of those people, in addition to my other friends who aren't dealing with mito.  I have gone out of my way many times to be there for friends when I feel like they need me.  Whether it's via text, phone, email, or facebook, I am constantly checking in on those friends who're dealing with mito and their kids.  I genuinely care about these people, even the ones I've never met in person and just talk to on facebook.
It may be for Epilipsy awareness,
but it applies to all diseases/illnesses.

So... why do I feel like it's never returned?  When I'm sick I'm not getting texts, emails, phone calls, etc. from friends or other people from the mito group checking up on me.  I don't have 10-15 people responding to my facebook status updates letting me know they're praying for me, thinking about me, or just letting me know they're there if I need someone to talk to.  No, "I'm so sorry you're feeling so bad right now," comments.  No, "I hope you're able to stay out of the hospital" comments.

I thought that being a good friend/person meant that people would be a good friend in return.  Don't get me wrong.  I'm not doing it because I want something in return.  I just like being a good friend.  I like making people feel good/better.  I just wish I could have a friend that did the same.

Laying in bed feeling horrible sucks.  Laying in bed, feeling horrible, and feeling like no one (except my husband and parents) gives a crap day after day is just plain miserable.   

Here is a great article on Chronic disease and loneliness - Chronic Disease: Plugging In
Another article by the same author.  He takes the words right out of my mouth... The loneliness of chronic illness

I agree with almost everything in the article and am right there with him.  On my "good" days I try my hardest to keep myself busy and "plug in" to the world around me, especially the mito world.  That is why I have done so many things to stay involved in the mito community; because I can feel better about myself for doing what I can for others who are suffering like I am.  In addition to the Energy for Life walk, I have attempted to organize a gathering for people dealing with mito in the KC area.  I also plan to help with support group planning in 2013 and have already discussed it with umdf.  I also comment on statements made in the facebook mito groups to try to help others as well.  However, as the article states, it's difficult, especially when I'm too sick to do anything or go anywhere, to remain "emotionally upright" and to "resist the never ending urge to crawl into a hole."  (Cohen, 2011)

No matter how much I try to make myself feel better emotionally, I can't do it as long as I am going through this so alone; without much support from friends, family, and even strangers.

Another couple of sentences from the article really stood out to me as well...  "Connections matter... Maybe the human touch, even on the phone, reassures us we are not standing alone on the battlefield, fighting for our lives. ... No matter how supportive family and friends are, it is wrenching for us to feel so along." (Cohen, 2011)

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