As you may be guessing, this week has not been any better. In the last 14 days, I have had 1 1/2 good days and 11 1/2 bad/horrible days. I'm getting to where I'm pretty pissed at the world right now. It's SO hard to be sick all the time. Nobody ever thinks about that.
Think about the last time you were sick with a stomach bug. Now imagine feeling that way for 2 weeks straight. Then feeling that way for 5 days a couple of weeks later... and again a couple of weeks after that. I basically have the stomach flu but with a full blown headache/migraine, horrible muscle pain, and extreme muscle weakness at least once a month, if not 2 or more times. During that time I don't leave the house. Hell, I don't leave my bed except to vomit. I don't get any visitors. I don't have any help for myself, besides having help with my kids... and it's been spring break all week. (luckily my mom took my youngest for 24 hours in the middle of the week so that helped a little)
Imagine laying in bed for almost 2 weeks drenched in sweat (that's from my autonomic nervous system screwing up). Now imagine eating nothing but soft foods for 2 weeks while vomiting on a regular basis. Everything you eat and drink makes your abdomen hurt and causes extreme nausea. You have a headache the size of a horrible migraine that most people would go to the ER for, but migraine meds don't touch it. You don't have enough energy to walk to the bathroom without help from your spouse even though it's only 10 feet away. If you didn't have the ability to get IV fluids at home, you'd have been in the hospital over a week ago. Despite constantly being drenched in sweat, you don't have the energy to shower. Your one and only care taker is too busy working and/or taking care of the 2 kids in the house and the house itself. And even though you feel completely and totally awful and can barely take care of yourself, you still have to take care of a 6 year old and a 14 year old (kind of).
That's what I have been dealing with for the past 2 weeks and what I deal with on a regular basis. Maybe I just need to start going to the hospital so I can have someone to take care of me. I think the next time I'm sick like that I will. I'd much rather be at home in my own bed but as long as I'm there, I don't have anyone to take care of me for 80% of the day and I'm the one responsible for taking care of my kids.
Despite feeling this way, I am still trying to help others. I am, of course, doing everything I can to take care of my kids. I am constantly trying to help with my grandpa, who's in a nursing home, as you read in my last post. I am always trying to make sure I'm making my friends happy... new and old. I go out of my way to show new friends that I care. I am organizing 3 fundraisers in the next 6 months for UMDF (United Mitochondrial Disease Foundation). One of which I'm trying to organize right now. I need to get working on another one of the 3 but I haven't been well enough to do so. And that doesn't count the day to day requirements like paying bills and taking care of the jewelry designing/selling business that I'm attempting to run. However...
Being sick is SO lonely. And, I could go on about that since that is one of the things that is bothering me so much right now. However, I already have. So, instead of repeating myself... I'll just repost the second half of a post titled "Chronic Disease = Chronic Loneliness", since that's EXACTLY how I feel right now....
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 alone."..."We long to touch and be touched." (Cohen, 2011)
The picture above, with the cats, explains it all. When I've been feeling sick as hell for 10+ days, I just wish I had a friend or family member come give me a hug and let me know it'll all be okay. Maybe spend a couple of hours just sitting by my side so I know I'm not alone, or doing chores around the house while asking me if I need anything occasionally. I just want to know that people give a shit.
Awhile back someone wrote an anonymous comment, even though it was obviously someone I know, saying that I should "just know". I shouldn't rely on actions or words from people to know that they care. I should "just know". Well, you spend over half of your life in bed, feeling horrible and unable to move and then tell me that you're okay with people not telling you or showing you that they love you. It's real easy when you're out and about, keeping busy, living your life to say that you don't care if others show you or tell you that they care... that you "just know". It's not quite so easy when you feel miserable day in and day out and rarely communicate with the outside world. All the while, hearing about people dying from the same disease on a weekly basis. (Yes, adults too.) I've also covered this topic before but it came to mind again so I, as usual, couldn't keep it to myself. Here's my first post on the topic - Dear Anonymous
Soooo, my parents are helping me pay for someone to come help around the house and take care of me and the kids. Did they just finally realize that I can't get enough help from people who would do it for free? Maybe. I figured that out a long time ago. Well, for whatever reason they're doing it, I'm happy they are. I REALLY need the help, especially when I'm sick. Of course, I just now found someone after trying for the last month or so. She is someone I know from the mito community who I have become friends with. She has a soon with mito. I'm really hoping it works out. It's just really sad that I have to pay someone to come visit me and help with things around our house.
Every now and then I go through a stage in which my husband and I say "we can do it by ourselves... we don't need anyone's help anyway." Then I get sick for 2 weeks and that changes. We can do it by ourselves... it just sucks. It's lonely, dirty (dirty house, dirty clothes), full of late, unhealthy dinners, and undisciplined kids who have to take care of themselves.
|This is me, but without the hospital bed and the flowers.|
I'm tired of being sick.
I'm tired of being lonely.
I'm tired of no one understanding me.
I'm tired of having to explain myself.
I'm tired of always wanting support, physical and emotional, and rarely getting it.
I'm tired of watching everyone else live their lives while I lay in bed.
I'm tired of listening to everyone's stories about all of the fun things they've done/are doing that I can't do because I'm too sick.
I'm tired of missing out on my daughter's lives.
I'm tired of having to have someone take care of me when I'm such an independent woman.
I'm tired of never eating but still being fat.
I'm tired of never having enough money for the things we need.
I'm tired of insurance not covering everything I need.
I'm tired of vomiting, sweating, being in pain 24/7, being too weak to take care of myself, etc.
I'm tired of having to use a wheelchair.
I'm tired of people staring.
I'm tired of Mito.
And most of alll...
I'm tired of not being able to be ME.