I want to thank you. I want to thank you, not just for reading, but for writing as well.
Over the course of the last almost three years that I have written this blog I have thought many times about why I do it. I started this blog for a couple of reasons but have added more as time has gone on. When I started this blog I wanted to do it for 2 reasons, and they were mostly selfish reasons at that. I wanted a place to put my thoughts and experiences. I also wanted a way of telling my family and friends what's going on in my life without having to repeat the same story, over and over again. Like I said, that's changed.
I definitely still write the blog as a way of emptying my head. It's an excellent way of getting all of my thoughts out and documenting all of my experiences with POTS/dysautonomia and/or Mitochondrial Disease. I'm not great at journals. Plus, handwriting things makes me tired. You'd be amazed at how much muscle strength it requires to write. I didn't mind the fact that I'm putting all of my thoughts and experiences in a place for the entire world to see. Like I said, I actually wanted that aspect of a blog because then I could use it as a place for my friends and family to get information about me and my illness, how I'm doing, etc. However, I learned that I didn't need to write my blog for that reason because I found that not many people read it in the first place. So I was keeping everyone updated by writing in my blog and then I was repeating everything on the phone with different people who don't read my blog. So, obviously, that reason for writing my blog was invalid.
I still had the initial reason... a place to get things off of my chest. However, as time went on I realized that there is another reason... To create a place for others with Mitochondrial Disease, POTS, or any other chronic illness to come to feel like they're not alone in this world.
I share so much of my life on this blog. I don't hold much in and I'm not shy to talk about things that many people would be too embarrassed to talk about (poop, vomit, altered anatomy, etc.). I am always very honest in my life and even more so on my blog. I don't hold much of anything back. In fact, I have a hard time, myself, with making sure that I don't share too much. However, the fact that I share as much as I do has helped many people.
Whether someone has mitochondrial disease, POTS, or some other chronic illness, a lot of my readers and I have a lot in common. I know that one of the things that has helped me through the journey of living with chronic illness is knowing that I'm not alone, that there are people out there who are dealing with much of the same stuff I am. It is always so refreshing to read someone's blog, post on facebook, or comment on a message forum saying that they're dealing with something I have to deal with all the time as well. Whether it's the emotions, physical symptoms of the disease, the grieving process after losing your life as you knew it, or any of the many other problems we deal with because of chronic disease, it's SO nice to know that someone else in this world is dealing with the same thing. THAT is one of the main reasons why I now write my blog.
I have received many comments and even more emails over the last couple of years from readers saying how much they appreciate my blog. They appreciate my honesty and the fact that I am putting myself out there for the whole world to see. One thing I didn't mention above is that I also use my blog to raise awareness of Mitochondrial Disease. That is something else that my readers have appreciated. I have been thanked for writing as much as I do because it has helped them in their journey to finding a diagnosis, a better doctor, etc.
What my readers don't know is that you're all helping ME. I love getting letters/emails from my readers. It is SO special to me to hear that not only is someone reading my blog, but they enjoy it, and it has helped them in some way, shape or form. It means so much to know that my constant babbling and bitching actually helps people.
I know how much it means to me to read someone else's blog because it helps to remind me that I'm not alone in this fight against Mitochondrial Disease. How I didn't think about my blog helping others in the same way, I don't know.
I want to share a few quotes from some of my readers who have really touched my heart and helped me to realize that writing my blog helps others too... (I did not get permission from all of the people I quote below. Therefore, I am not using names. If you want me to use your name or delete your comment, please let me know and I will do so immediately. Thanks.)
-"I found your honesty (not bitching, as you call it) to be refreshing and somewhat emotionally fulfilling and healing."
-"Your blog was a gift to me tonight... in so many ways."
-"You have a great talent for putting things into perspective."
-"I keep you in my prayers and think you are brave and inspiring."
-"You wrote spot on... the mito world needs you."
-"It was beautiful to read your story... it is so real... thank you."
-"...I just wanted to let you know how much your blog means to me."
I want you all to know how much you mean to me. All of my readers are special to me... whether I know you or not. Many of you, as you can see from the quotes, have stated that my blog has helped you. Well, you all, and your emails have helped me. You all have reminded me why I do this... why I open up so much for the entire world to see. It makes me feel wonderful to know that I am helping someone, even if it's just a little.
I may not be very good at responding to your emails very quickly, but I appreciate each and every one. The most recent one, which I still haven't replied to yet, even brought tears to my eyes (good ones). So, please understand that I want to reply but don't always have the energy to do so right away, and be patient. I will get around to replying eventually.
So, THANK YOU readers! If it wasn't for you, I wouldn't have a blog. And if it wasn't for your kind words, I would never know that I even have readers and how much I am appreciated.
If you have ever considered writing to me, and haven't, please do so. I love to hear from my readers... even if it does take me a bit sometimes to respond. I am ALWAYS open for questions, comments, etc.
Thank you, again.
Robin
This is my journal documenting my journey (and many frustrations) through life and it's many changes. I was recently diagnosed with Mitochondrial Disease and POTS, which has changed my life drastically. This is my output for all of the many trials and tribulations my illness has brought me.
Wednesday, March 27, 2013
Thursday, March 21, 2013
Coincidence
FYI - This post was typed on Sunday, March 17th. I just forgot to hit the "publish" button. I wonder where my brain goes sometimes. Because if it goes somewhere nice when it's on vacation like that, then I want to go too!
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Last night I posted a status on Facebook, "Not in a good place." Interestingly enough, I posted that after an evening watching the KU/KSU college basketball Big 12 Championship game with my husband and a couple of good friends. We had the typical "watching basketball" junk food for dinner, watched the game, talked, and laughed. We had a good time. It was beyond much needed time with friends.
So, why is it, you ask, that shortly after they left and my husband went to bed I was already "not in a good place"? That's hard to explain. I suppose that after being/feeling SO alone for the last two weeks; feeling such a lack of support and comfort from loved ones, that a couple of hours of shooting the shit with friends while watching college hoops just didn't cut it. I guess I knew that after a very short time with friends, I was already right back where I was... alone/lonely. Even with people around you, a person can still feel alone. That is where I am right now. I could be in a room full of people right now and still feel like I'm going through the trials and tribulations of my illness alone.
Many times as I've felt this way, and discussed it on my blog, I have felt the judging of others. Many people have acted as though I'm overreacting to my need for support. Why can't I just know that people love me and be okay with that? Why do I need the support of my family and friends so often? Other people don't need their family and friends around as often as I do. Other people don't bitch and moan if their friends don't call them to see how they're doing. Well, "other people" also don't deal with being sick all the time. "They" don't have the physical and emotional stress of a debilitating, progressive, chronic illness. So if you are one of those people who judge me for discussing/complaining about the lack of support I receive, please continue reading and watch the video on the link below.
Now for the coincidence... After having a horribly emotional night (bringing me back to my depression days in high school), I woke up this morning and saw this news story on CBS Sunday Morning. The title is "Friendship: Close ties that enhance and extend life." It discusses how healing friendships and supportive relationships are. They talk about 2 studies that were done about friendship and the results were astounding in both.... especially the one using a MRI (I suppose that one stands out to me more since I have such a scientific mind and there is an actual scientific/medical study that shows the obvious results).
What a validation that was! So, PLEASE watch the video below, especially those of you (I can't mention names since many of you hide behind "anonymous" when commenting) who don't believe that I need to hear from my friends/family or see them... that I should just know that they love me. Those of you who believe I don't need people around me on a regular basis to help me heal and feel better. Just read the title itself - "close ties that enhance and extend life." Everyone needs that, but someone with a debilitating illness needs it even more. I don't know which one I need more... for my life to be enhanced or extended.
This is the quote from the news story that I appreciate the most - "The burden of coping with life's many stresses, when you have to deal with them all by yourself, it not only feels more exhausting, it literally creates more wear on your body," said James Coan, associate professor of clinical psychology at the University of Virginia.
So, basically, the physical stress that my body is going through when I'm sick from an exacerbation of my mitochondrial disease is huge. The mental stress of being sick all the time also has a huge affect on me. Then, there's all of the other stressors that I deal with just like everyone else in this world. In addition to that, going through all of it alone makes it so much worse. When dealing with the stress of being really sick from mitochondrial disease for two weeks, with no one but my daughters and my husband (who's in and out and running around like crazy) around, my ability to deal with it all decreases drastically. According to the professor from UVA, being alone actually creates more wear on my body. I can definitely see that happening with me. The longer I'm sick without the support of others, the harder it is to handle. I start getting irritable, depressed, angry, etc. When I lay in bed, day after day, unable to move from weakness, unable to eat or drink from nausea/vomiting, and unable to tolerate the pain anymore, all the while knowing that people are well aware that I'm sick and taking care of my kids on my own but still not there for me, I very quickly fall into depression and anger. Wouldn't you? When, according to the news story (and the same thing I've been trying to say all along) just having a friend or someone else who cares about me in the same room with me would drastically change how well I could cope with my illness. It could even make me feel better sooner. Just by having someone I care about in the same room with me. Amazing! Too bad it's not as easy as it sounds. I can't force people to "take care" of me.
Video - "CBS Sunday Morning - Friendship: Close ties that enhance and extend life"
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Last night I posted a status on Facebook, "Not in a good place." Interestingly enough, I posted that after an evening watching the KU/KSU college basketball Big 12 Championship game with my husband and a couple of good friends. We had the typical "watching basketball" junk food for dinner, watched the game, talked, and laughed. We had a good time. It was beyond much needed time with friends.
So, why is it, you ask, that shortly after they left and my husband went to bed I was already "not in a good place"? That's hard to explain. I suppose that after being/feeling SO alone for the last two weeks; feeling such a lack of support and comfort from loved ones, that a couple of hours of shooting the shit with friends while watching college hoops just didn't cut it. I guess I knew that after a very short time with friends, I was already right back where I was... alone/lonely. Even with people around you, a person can still feel alone. That is where I am right now. I could be in a room full of people right now and still feel like I'm going through the trials and tribulations of my illness alone.
Many times as I've felt this way, and discussed it on my blog, I have felt the judging of others. Many people have acted as though I'm overreacting to my need for support. Why can't I just know that people love me and be okay with that? Why do I need the support of my family and friends so often? Other people don't need their family and friends around as often as I do. Other people don't bitch and moan if their friends don't call them to see how they're doing. Well, "other people" also don't deal with being sick all the time. "They" don't have the physical and emotional stress of a debilitating, progressive, chronic illness. So if you are one of those people who judge me for discussing/complaining about the lack of support I receive, please continue reading and watch the video on the link below.
Now for the coincidence... After having a horribly emotional night (bringing me back to my depression days in high school), I woke up this morning and saw this news story on CBS Sunday Morning. The title is "Friendship: Close ties that enhance and extend life." It discusses how healing friendships and supportive relationships are. They talk about 2 studies that were done about friendship and the results were astounding in both.... especially the one using a MRI (I suppose that one stands out to me more since I have such a scientific mind and there is an actual scientific/medical study that shows the obvious results).
What a validation that was! So, PLEASE watch the video below, especially those of you (I can't mention names since many of you hide behind "anonymous" when commenting) who don't believe that I need to hear from my friends/family or see them... that I should just know that they love me. Those of you who believe I don't need people around me on a regular basis to help me heal and feel better. Just read the title itself - "close ties that enhance and extend life." Everyone needs that, but someone with a debilitating illness needs it even more. I don't know which one I need more... for my life to be enhanced or extended.
This is the quote from the news story that I appreciate the most - "The burden of coping with life's many stresses, when you have to deal with them all by yourself, it not only feels more exhausting, it literally creates more wear on your body," said James Coan, associate professor of clinical psychology at the University of Virginia.
So, basically, the physical stress that my body is going through when I'm sick from an exacerbation of my mitochondrial disease is huge. The mental stress of being sick all the time also has a huge affect on me. Then, there's all of the other stressors that I deal with just like everyone else in this world. In addition to that, going through all of it alone makes it so much worse. When dealing with the stress of being really sick from mitochondrial disease for two weeks, with no one but my daughters and my husband (who's in and out and running around like crazy) around, my ability to deal with it all decreases drastically. According to the professor from UVA, being alone actually creates more wear on my body. I can definitely see that happening with me. The longer I'm sick without the support of others, the harder it is to handle. I start getting irritable, depressed, angry, etc. When I lay in bed, day after day, unable to move from weakness, unable to eat or drink from nausea/vomiting, and unable to tolerate the pain anymore, all the while knowing that people are well aware that I'm sick and taking care of my kids on my own but still not there for me, I very quickly fall into depression and anger. Wouldn't you? When, according to the news story (and the same thing I've been trying to say all along) just having a friend or someone else who cares about me in the same room with me would drastically change how well I could cope with my illness. It could even make me feel better sooner. Just by having someone I care about in the same room with me. Amazing! Too bad it's not as easy as it sounds. I can't force people to "take care" of me.
Video - "CBS Sunday Morning - Friendship: Close ties that enhance and extend life"
Saturday, March 16, 2013
I'm Tired
Well, if anyone prayed, thought good thoughts, or wished me luck for me to be well this past week, it didn't work. Not that I'm shocked or anything since I don't believe in praying to make things better.
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...
I have recently gotten to the point where I just don't feel like trying to please anyone anymore. I am constantly trying to make sure I don't offend or upset anyone. Why? Why am I doing that? Especially when I don't generally feel the love from those people in the first place. I'm so tired of trying to make sure that everyone around me is happy. What about me? Who's trying to make sure I'm happy? When I'm sick it sure doesn't feel like anyone.
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....
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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.
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)
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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.
I'm tired.
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.
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...
I have recently gotten to the point where I just don't feel like trying to please anyone anymore. I am constantly trying to make sure I don't offend or upset anyone. Why? Why am I doing that? Especially when I don't generally feel the love from those people in the first place. I'm so tired of trying to make sure that everyone around me is happy. What about me? Who's trying to make sure I'm happy? When I'm sick it sure doesn't feel like anyone.
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....
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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.
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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)
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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.
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This is me, but without the hospital bed and the flowers. |
I'm tired.
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.
Friday, March 8, 2013
The Winter Blues and other stressors
This is not a very good time for me right now. I have always, pre and post mito, had problems with the "winter blues". About the end of Febuary and into March, right before it starts to get warm again, I get a little down. I am not a home body. Ha! Why is that funny? Because that's all I do now... hang out at home. But that's not what I want to do. I want to get out and enjoy the outdoors and fresh air. I am not, however, a cold weather person. I hate the cold. If it wasn't for my parents and grandparents, I would have left KC a looooooong time ago.
So, it's that time of year that I get a little down. No big deal, right? Wrong. I'm dealing with a lot of other stressors at the moment. A couple of weeks ago my grandpa, who is very special to me, fell and severely broke his hip. He spent a week in the hospital, during which time I worked with my Aunt and dad to find a nursing home/rehab facility for him to stay in when he was discharged from the hospital. He has always lived at home with his wonderful wife, my grandmother, of 65+ years. Due to all of his pre-existing health problems, things are not looking good for my grandfather.
Situations like this are always difficult on the family. This has been no exception. My grandparents have 2 kids, my aunt and my dad. There are not any other people in this world who could be any more different from each other in every way, shape and form. I thought my sisters and I were so very different. My dad and his sister couldn't have personalities any more different from each other. So who ends up being in the middle in situations like this? Me. Amazingly enough, I'm usually okay with it. If nothing else, I'm glad that I can help in some way. I feel that it is my job to "keep the peace" as it may be by being the middle man in a sense. However, it's not easy. I'm dealing with all of the stress of my grandfather being ill as well as being a sounding board for other family members and their problems. Again, I'm glad I can be there to help. I like to help. That doesn't mean it's easy.
Then there's my own problems with my own sibling. I'm not going to get into all of the details because it's between her and I and no one else. However, she evidently didn't feel that way. She assumed, without having a single clue, what I was/am upset about and made sure to inform other family members of that assumption, which then caused more undue stress between them and I.
Please, if you're having difficulties with a family member or friend, please don't involve others. There's no reason to. Talk it out with the person your having a problem with. Make a point to reach out to that person instead of assuming you know what they're upset about... especially if they're life is a living hell in the first place.
So, obviously, the family issues have caused me a lot of stress. Some of which I can avoid by not talking to the person I'm having difficulties with. Some of them, I can't.
On top of all of this, I have been really sick. My grandpa had a stomach virus (nausea, vomiting, diarrhea) which got passed to all of the people who've gone to see him and are close to him. I, however, have more difficulties with any virus because of my mitochondrial disease. I am now on day 5 and still sick. I am finally able to eat more than jello and pudding today. However, I am still very weak and in a lot of pain. I, of course, didn't get the diarrhea aspect of the virus. I wish! Well, I guess my version of diarrhea is 2 BMs in one day. Woo Hoo! My GI system's really moving now! I am so happy that the last time I was in the hospital my doctor increased my IV fluids to once a day. Plus, there have been days here and there that I was having such a good day that I didn't use my IV fluids. Therefore, I was able to use 2 liters of fluids each day while I was really sick. If it wasn't for those two things, I would've been in the hospital for this virus. It's much more comfortable to be sick at home. Granted, I don't have the caretakers I would have in the hospital, but, luckily, my husband hasn't gotten sick so I've at least had him.
The fun part is when other people try to compare. Nothing is ever the same with mito. Viruses are always 10 times worse. So saying you're weak from vomiting is nothing like the weakness felt with mito. When I vomit, I can't get off of the floor without someone practically picking me up. I can't stand at the sink to brush my teeth without my legs collapsing from underneath me. Imagine what happens when I vomit 6+ times in a 4 hour period. Then imagine what happens when I don't eat for 4 days.
This is a small quote/excerpt from a blog post titled "Pay no attention to the girl behind the smile - what I wish people knew about me" by Christine Miserandino on ButYouDontLookSick.com -
"I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have pms cramps”, or even better… “I have a cold… I am Ddddddyyyiing!”. These expressions need to be banned, because they do not adequately describe how you are feeling and they belittle what pain and sickness I may be feeling."
Last, but not least, I want to discuss a pet peeve of mine. People are constantly giving advice to those who are sick. Have you tried this? Have you cut out that? Have you drank this or eaten that? I read an article... I heard on tv... What's always fun is when people tell you the things you should and shouldn't do. I get this ALL the time.
Do you know who knows my body best? Do you know who knows what I should eat and drink, what medicines I should take, what energy I should expend, how much sleep I should get, etc. etc.? Not my doctors. Not my family. Not my friends. Nope. It's ME. I am the one who knows what I need. I am the one who gets to make the decisions as to how much sleep I need, when I should rest and when I shouldn't, what will make me sick and what won't.
The funny thing is that everyone else still continues to think that they know what's best for me. Actually, that's not the funny thing at all. This is the funny thing... When I am feeling well, I get advice from everyone about everything. When I'm feeling well, I'm out and about more often. I'm talking to family and friends. I'm even helping take care of others. That's exactly what I want to be doing when I'm feeling well. That's exactly why I am always quoting Amanda Perrrotta and saying, "the cure for mito is living life." That's why, whenever I can, I live my life. I rest when I need to, eat and drink when I need to, and take my medicine when I need to. However, that's also when everyone wants to tell me what I should and shouldn't be doing. BUT, when I'm sick for days on end, vomiting like crazy, in tears from the pain, and unable to walk without my husband holding me up, I don't hear from anyone (but my parents sometimes). That's the funny part! Everyone wants to tell me what I need to do so I'll feel better when I'm feeling better, but when I'm sick not only do people not tell me what I should or shouldn't be doing to feel better... they don't tell me anything, because I don't hear from them!
So, if you want to give me unsolicited, uneducated advice, why don't you give it to me when you're at my house helping my husband take care of me when I'm sick, instead of when I'm out and about trying to live my life the few times that I'm feeling well enough to do so. Otherwise, please keep in mind that I am the one who knows my body better than anyone else. The person who knows me well enough to give me advice no matter how I'm feeling is my husband, and that's because he's there for me during the good and the bad... not just the good.
Now that I've had my ranting and raving about how crappy things are right now, I'm done. I may not believe in god, but that doesn't mean I don't appreciate prayers and good thoughts. That's what prayers are to me... good thoughts. And who in this world can have too many people thinking good thoughts for them? So, please, help me out by thinking a few good thoughts for me that I will get physically better soon and that my stress will drastically decrease soon as well. Especially since those two things go hand in hand with each other a lot.
Oh, yeah... wish me luck for next week. It's Spring Break and my kids are at home with me all week.
So, it's that time of year that I get a little down. No big deal, right? Wrong. I'm dealing with a lot of other stressors at the moment. A couple of weeks ago my grandpa, who is very special to me, fell and severely broke his hip. He spent a week in the hospital, during which time I worked with my Aunt and dad to find a nursing home/rehab facility for him to stay in when he was discharged from the hospital. He has always lived at home with his wonderful wife, my grandmother, of 65+ years. Due to all of his pre-existing health problems, things are not looking good for my grandfather.
Situations like this are always difficult on the family. This has been no exception. My grandparents have 2 kids, my aunt and my dad. There are not any other people in this world who could be any more different from each other in every way, shape and form. I thought my sisters and I were so very different. My dad and his sister couldn't have personalities any more different from each other. So who ends up being in the middle in situations like this? Me. Amazingly enough, I'm usually okay with it. If nothing else, I'm glad that I can help in some way. I feel that it is my job to "keep the peace" as it may be by being the middle man in a sense. However, it's not easy. I'm dealing with all of the stress of my grandfather being ill as well as being a sounding board for other family members and their problems. Again, I'm glad I can be there to help. I like to help. That doesn't mean it's easy.
Then there's my own problems with my own sibling. I'm not going to get into all of the details because it's between her and I and no one else. However, she evidently didn't feel that way. She assumed, without having a single clue, what I was/am upset about and made sure to inform other family members of that assumption, which then caused more undue stress between them and I.
Please, if you're having difficulties with a family member or friend, please don't involve others. There's no reason to. Talk it out with the person your having a problem with. Make a point to reach out to that person instead of assuming you know what they're upset about... especially if they're life is a living hell in the first place.
So, obviously, the family issues have caused me a lot of stress. Some of which I can avoid by not talking to the person I'm having difficulties with. Some of them, I can't.
On top of all of this, I have been really sick. My grandpa had a stomach virus (nausea, vomiting, diarrhea) which got passed to all of the people who've gone to see him and are close to him. I, however, have more difficulties with any virus because of my mitochondrial disease. I am now on day 5 and still sick. I am finally able to eat more than jello and pudding today. However, I am still very weak and in a lot of pain. I, of course, didn't get the diarrhea aspect of the virus. I wish! Well, I guess my version of diarrhea is 2 BMs in one day. Woo Hoo! My GI system's really moving now! I am so happy that the last time I was in the hospital my doctor increased my IV fluids to once a day. Plus, there have been days here and there that I was having such a good day that I didn't use my IV fluids. Therefore, I was able to use 2 liters of fluids each day while I was really sick. If it wasn't for those two things, I would've been in the hospital for this virus. It's much more comfortable to be sick at home. Granted, I don't have the caretakers I would have in the hospital, but, luckily, my husband hasn't gotten sick so I've at least had him.
The fun part is when other people try to compare. Nothing is ever the same with mito. Viruses are always 10 times worse. So saying you're weak from vomiting is nothing like the weakness felt with mito. When I vomit, I can't get off of the floor without someone practically picking me up. I can't stand at the sink to brush my teeth without my legs collapsing from underneath me. Imagine what happens when I vomit 6+ times in a 4 hour period. Then imagine what happens when I don't eat for 4 days.
This is a small quote/excerpt from a blog post titled "Pay no attention to the girl behind the smile - what I wish people knew about me" by Christine Miserandino on ButYouDontLookSick.com -
"I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have pms cramps”, or even better… “I have a cold… I am Ddddddyyyiing!”. These expressions need to be banned, because they do not adequately describe how you are feeling and they belittle what pain and sickness I may be feeling."
Last, but not least, I want to discuss a pet peeve of mine. People are constantly giving advice to those who are sick. Have you tried this? Have you cut out that? Have you drank this or eaten that? I read an article... I heard on tv... What's always fun is when people tell you the things you should and shouldn't do. I get this ALL the time.
Do you know who knows my body best? Do you know who knows what I should eat and drink, what medicines I should take, what energy I should expend, how much sleep I should get, etc. etc.? Not my doctors. Not my family. Not my friends. Nope. It's ME. I am the one who knows what I need. I am the one who gets to make the decisions as to how much sleep I need, when I should rest and when I shouldn't, what will make me sick and what won't.
The funny thing is that everyone else still continues to think that they know what's best for me. Actually, that's not the funny thing at all. This is the funny thing... When I am feeling well, I get advice from everyone about everything. When I'm feeling well, I'm out and about more often. I'm talking to family and friends. I'm even helping take care of others. That's exactly what I want to be doing when I'm feeling well. That's exactly why I am always quoting Amanda Perrrotta and saying, "the cure for mito is living life." That's why, whenever I can, I live my life. I rest when I need to, eat and drink when I need to, and take my medicine when I need to. However, that's also when everyone wants to tell me what I should and shouldn't be doing. BUT, when I'm sick for days on end, vomiting like crazy, in tears from the pain, and unable to walk without my husband holding me up, I don't hear from anyone (but my parents sometimes). That's the funny part! Everyone wants to tell me what I need to do so I'll feel better when I'm feeling better, but when I'm sick not only do people not tell me what I should or shouldn't be doing to feel better... they don't tell me anything, because I don't hear from them!
So, if you want to give me unsolicited, uneducated advice, why don't you give it to me when you're at my house helping my husband take care of me when I'm sick, instead of when I'm out and about trying to live my life the few times that I'm feeling well enough to do so. Otherwise, please keep in mind that I am the one who knows my body better than anyone else. The person who knows me well enough to give me advice no matter how I'm feeling is my husband, and that's because he's there for me during the good and the bad... not just the good.
Now that I've had my ranting and raving about how crappy things are right now, I'm done. I may not believe in god, but that doesn't mean I don't appreciate prayers and good thoughts. That's what prayers are to me... good thoughts. And who in this world can have too many people thinking good thoughts for them? So, please, help me out by thinking a few good thoughts for me that I will get physically better soon and that my stress will drastically decrease soon as well. Especially since those two things go hand in hand with each other a lot.
Oh, yeah... wish me luck for next week. It's Spring Break and my kids are at home with me all week.
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