I just got home from clinical at the hospital. I cried all the way home and then sat in the driveway, in my car, crying for another half hour. It’s crazy how all of a sudden the emotions just catch up with you and paralyze you.
I love my house, I love my dogs, but there is something about walking into an empty house day after day, night after night that is just exhausting. It’s so lonely. The loneliness of walking into an empty house and having no one to share your day with.
It’s hard to share these feeling because most people see it as one way. They don’t realize you can be sad and lonely and missing someone and still be ready to move forward and start a new life. People don’t understand that, they don’t want to. They don’t want your grief or confusion to interrupt their lives. They see it as one way or the other. Black and white. They can’t comprehend that you can be happy and be sad.
The loneliness is deafening. I moved across the country and sometimes doubt the decision. I still get lost everywhere I go. I don’t have many friends and I can’t just show up on their front door step looking like this. (Yes, I am having a pity party right now). I’m thinking forward and know that I will have a regular job soon and will hopefully meet people and make friends there. I am trying to get out more and interact with people but it’s not easy.
I don’t know what I have been so emotional lately. Maybe this is just a build up from all the writing I’ve been doing for my book. Maybe it’s just the past few years finally setting in. Maybe it’s everything that I haven’t really confronted coming out. Maybe it’s my frustration with other people thinking I can’t be happy and sad – or even have a bad day. I don’t know what it is but it sucks.
I need to just be. Let the emotions come and go and embrace them. It’s hard and it hurts. But I am fortunate for the life that I have and am excited about what is to come.
Picture on the left – 2004/2005 (depicts my attitude perfectly), picture on the right – 2017. How much I have changed. So many people would say that. So many people have said to me “you were the last person we thought would care for someone”. “I can’t believe you can (and did) do that on that level”.
I won’t say I wasn’t nice. I was just hard and very private. I didn’t share anything. I was already living with Duane when my parents met him. I didn’t share things, I didn’t let people know what was going on in my world, my life and especially not in my head or my feelings. These last few years have softened me. I have become vulnerable and I share everything! hahahaha
I think that the main reason I was like that, is because I am actually VERY sensitive, my feeling get hurt VERY easily and I never wanted people to know that they could get to me. I hate yelling, until Duane got sick we never yelled, not even that dinner was ready. I hate raised voices and I dislike uncomfortable situations. I put up a good front, I had a very hard shell. After everything I have experienced I can no longer do that. I’m not capable of hiding my feelings. I just can’t.
Last night at clinical a girl, who I thought was my school “friend” lied about me and spread the lie to the other students. She said I said something to her I NEVER would have said, she said I told her she couldn’t help her patient and that I said I was taking the patient. (Short version). I heard the rumor at the end of the night. I was so upset. I corrected the story with the 2 girls who shared it with me. I drove home, called my parents and cried. I only sleep 2.5 hours, I so upset over this.
I know it’s not a big deal. I know I should get over it, but I can’t. I don’t operate that way anymore. I don’t understand why someone would blatantly lie. 24 hours later it’s still bothering me. I know it’s her issue and it’s not me but it seriously bothers me. I’ll be fine, I always am. Clinical is canceled tomorrow (due to the 2nd hurricane of the season) so I have until Tuesday to clear my head and move past this.
I LOVE school. I started clinical last week and yesterday I started with my own patients. I would never have imagined I would be so happy walking the hospital halls and taking care of people. I am currently in the Surgery/Trauma unit, car accidents, motorcycle accidents, TBIs. All the patients I came into contact with were sweet and helpful and so willing to work with a student. They were encouraging and were really excited about being able to help us learn. I am sure they won’t all be like that and I’m sure there will be hard days but I feel like I made the right decision. I couldn’t be happier.
The pictures above are from when Gracie had cancer. We had to give her IVs because she had lost so much weight. Duane did them and then… he had to go back to work… so I had to do administer them. Duane taught me how. (Seriously though, Gracie was a very patient patient. The first time I had to do it alone I placed it wrong and she cried, I started crying – feeling horrible that I hurt her, she turned around, licked my hand and then turned back around waiting from me to try again). So when it came time to inject Duane’s meds he looked at me and said “you know how to do this, I taught you with Gracie”.
I was talking to a friend tonight. ALS sucks. It’s hard. It’s tiring. Watching someone battle ALS is heartbreaking. There are no words to explain what it’s like. There is truly no way to understand it unless you’re in it, daily. My wish is that no one else would have to experience it. There are no books to read, there are no guidelines. There are no right answers. It is all trial and error. Mistakes are made. Adaptions are learned.
So much is lost, but so much is gained. There is unconditional love. I didn’t know what love was until ALS. I didn’t know what forgiveness was. I didn’t know what patience was. I didn’t know how to live in the silence, how to sit in the quiet. I didn’t know what peace was.
Sometimes there are no words. Sometimes talking is too much. Remember that when friends are going through hard situations. Sometimes just sitting with them (even on the phone) in silence does amazing things.
I sometimes sit in anger and curse the disease, the situation, that fact that there is still, in 149 years, no cure. I cry over my loss and the years it took away from Duane. I cry wondering if I could have been better, done more. I second guess the path we took, the decisions we made. I wonder if we would have tried something else, participated in a trial, had more medical intervention… What would life have been like?
I have no regrets. At the end of the day we did what Duane wanted. Up until the end he lived the way he wanted to live. He wishes were met. In the end there was love.
I heard this song yesterday and I’ve had it on repeat ever since. I have so many memories of Duane dancing around the kitchen while he cooked us dinner, and then of us drinking wine on our front porch sitting on our bench or in the hammock. The memories have been flooding back and the smiles and happy tears have been endless – we really had an amazing life.
Most people already know this but when Duane I first met I had no idea how to cook, NO IDEA. Tuna quesadilla and rock hard birthday cake were some of my specialties that first year. He laughed and refused to eat them – didn’t even pretend to! hahahaha! We were at a fishing tournament and like normal I got up to make everyone’s lunch for them, they wanted peanut butter and jelly sandwiches. I just stared at Duane when he told me that was what they wanted. A few minutes later he came back into the motorhome and asked why they weren’t done… I don’t know how to make them. EVERYONE stared and then started laughing! hahahaha (In my defense my parents and I are from England and that is not common there – I had never had it before.) In between the bouts of laughter I learned there was no right side to put either thing on and no certain ratio. So in those early days Duane always cooked when he was home – and when he wasn’t I ate at the fire station – a lot. But when he was home, he would be in the kitchen and I would be in the hallway, leaning against the door frame – my favorite sitting spot, drinking wine and watching him cook while we talked about our days. Those, to this day, are some of my favorite memories. So simple and easy and normal.
Often times after dinner we would sit outside on the porch, whether we were at home, in the motorhome, camping … we sat outside, drank our wine and watched Gracie or Buddy play. When we were at fishing tournaments people always knew they could come by the motorhome for a beer, a bait or just to talk – Duane LOVED to talk! We didn’t have cable or real internet so we really spent our time talking or outside working on something.
These are the days, when I feel good and happy again. While Duane was healthy he gave me the best life possible and while he was sick I gave him the best life possible. We were a team to the end. I am so happy that simple things can trigger the happiest of memories.
– xoxo Victoria
P.S. I learned how to cook and I ended up being pretty good. I learned to really cook on a stove with two burners and a hot plate. Once we had a real kitchen again – the possibilities were endless! hahahaha
I really struggle with disappointing people. I worry about hurting other people’s feelings because I didn’t do what they wanted me to or I didn’t help them when they asked me to. I don’t know why, I don’t know why I take on that burden. I, up until recently, haven’t had a lot going on so it has been easy for me to help others and work around their schedule. I was able to arrange what I needed and wanted to do around what everyone else’s schedule dictated.
I think of others first. I always do for others. Maybe it’s engrained in me after caregiving for so long. But even before Duane got sick, I did what he wanted when he was off of work. I was able to do anything I wanted for the 48 hours he was at the fire station, so I always figured when he’s home it didn’t matter what we did, as long as we were together. I can’t recall a time, in the last year, that someone has asked me for something or needed something and I have said no. I can’t tell you of a time when someone was stuck and I didn’t help them. It’s actually not part of who I am – I don’t operate that way. But I can tell you in the last two weeks how many times I have been told no, someone can’t help me or have ignored my calls to not help me. (That’s another post entirely – and part of the reason I don’t ask for help UNLESS I really need it). If you have read my last few posts you know that my anxiety is crazy high and I am easily overwhelmed when I have “too much” to do…. hmmmmm
This week at counseling we talked about something that we had previously discussed, numerous times – apparently it takes me awhile! hahahaha. It’s a great way to reframe the thoughts you have when someone asks you to do something or when you are trying to schedule everything YOU need to do.
The concept is simple … ask yourself to fill in the blanks in these two sentences before committing to anything.
By saying YES to ______________, I am saying NO to ______________.
By saying NO to ______________, I am saying YES to _____________.
Example – (this is simple one – but works for major things too)
By saying YES to babysitting, I am saying NO to the nap I need.
By saying NO to babysitting, I am saying yes to taking the nap I need.
By putting the options into a scenario like this I am forced to realize what I am putting aside to help someone else. As unnecessary as a nap may seem to you, it is probably the only 2 hours of fully restful sleep I will get in a 24 hour span. It is life for me.
I have been using this the last few days for everything I need to do or am asked to do.
By saying YES to shoveling my driveway stone, I am saying NO to studying for my final.
By saying NO to shoveling my driveway stone, I am saying YES to studying for my final that I have worked so hard to take this semester.
So far it has made even the simplest decisions easier. I am going to elaborate even more soon. I am committed to this process right now. I need to put myself first and only take on the “tasks” I want to take on!
I’ll keep you posted on when I “crack” or if I’m able to keep this up! I need to start saying no. No to things that don’t serve me. No to things that hinder my progression. No to things that hold me back. No to people who are takers only. No to people who are selfish. Just no.
These last few days of hurricane prep has taught me how lucky I was and still am.
I had a real “workin’ man” for over a decade. He went to work, busted his butt, came home fixed everything, built everything. Never complained. And taught me how to take care of myself.
I grew up with a dad who is super handy as well. He helps me and teaches me the things that I didn’t have the time to learn or be taught by Duane.
I realized over the last few days that I have a real issue with people that can’t take care of their own shit. They can’t fix anything and are not even willing to try, they just blame it on someone/ something else. I don’t know why it bothers me so much, but it does, I equate it to laziness. I equate it to not taking care of yourself or your family. I know that that thought is wrong and it is not true but it bugs the crap out of me. I think if I can learn it then anyone can. At least try.
People are going to read this and think I’m mean and unrealistic but this bugs me more than anything! Its not even any of my business how people live their lives – but if I hear about it – lord help me. hahahahahaha I don’t mean to be catty, I’m just sharing my feelings.
So with everything ready, I can now sit back and relax and wait for Flo.
“Come to North Carolina,” they said. “You’ll love it here,” they said. WTF?????
As I said earlier today, “with a hurricane you get a few days warning… with an earthquake, it just happens”.
I’m not a doomsday prepper, I’m not really even a prepper, but today I did buy beer, wine, pop tarts and lettuce. I think I’m well prepared. I have water and lanterns and some food. As long as the dogs and I are fine nothing else matters. That’s what insurance is for.
Seriously though, there is gas in the cars (and the boats… just incase), everything is as best protected from trees as possible. I know how to work a generator and cook on propane. I have dog food. I’ll fill the tubs with water to flush the toilet and I have a ton of unread books.
Thank you fo all the messages and concern! Love you all!
This is a blog that I have wanted to write for a while, but I knew it would be hard to write and I knew it would be a hard to follow, it’s a jumbling mess – just like inside my head right now. Here goes …
Lately my mind has been a jumble of so many things. I’m angry and frustrated and sad and confused. I am a pretty calm and happy person, I don’t like raised voices, I meditate, defuse lavender, sit in a sauna… But I have a level of anxiety I have never experienced before. I can’t quite tie it to one particular thing. It’s not school, work, the dogs, house stuff … it’s just a general feeling of being incredibly overwhelmed. I feel like no matter what decision I make I am letting someone down – who? No idea. Myself? No idea.
It started about 8 months ago, at that point I could manage it by having only two commitments in a day (grocery store & work, dinner at my parents & working out). If I added something else – like I needed to take my car in or I had to pick something up somewhere, or I took on another freelance job – I lost it. Like broke down, hysterically crying, hyperventilating, lost it. I settled into that but recently it got bad again. It is now to the point where I am not sleeping again, I have acid reflux (which I’ve never had before) and any little thing can set me off. I’ll just be driving and start crying. My stomach is constantly burning and I’m always exhausted.
Before anyone responds here, yes I see a counselor, originally it was every few weeks, then once an month and now its back to every week or so.
I am loving school. I am so motivated to get done and start helping people. I can’t wait to actually be making a difference in people’s lives. I love the competition of class (I know it’s not a competition! hahahaha, but it is!) and realizing that I KNOW this. I CAN do this and I can be amazing at it. I love discovering that for the two years I was a caregiver, I was doing it right. I also love knowing that although it was heartbreaking and pushed me to my limits on a daily basis it prepared me for my life now. I feel such a sense of accomplishment. (so it’s not that!)
I love my house. I am doing a lot around the house to make it a home; carport, extending my deck, shoveling 10 tons of rock, mowing 2 acres hahahahaha But I love it and feel settled and feel like I have a real home for the first time in years. (This maybe be part of the overwhelming part – I have to make all these decisions alone… the color of the roof of the carport? I don’t know let me call my dad. 5 tons of gravel or 4? I don’t know let me call my dad. Riding mower? I don’t know let me call my dad. Quotes on extending my deck? Seems high, let me call my dad. My poor dad!)
Two dogs … should have done it sooner. They are happy and I love them.
Work – happy to be working again.
This is where it really gets jumbley…
The triggers are emotional and I need to get over them. I need to figure out how to not take other people’s actions personally. But I want to shake them!! How can you take your loved ones, your friends, your family for granted? How can you treat these people like an after thought?
I will help anyone, seriously anyone. I will drop what I’m doing to help someone. I also never ask for help, but when I do, I actually need it, but it is always (other than my parents) “I can’t commit to that” or “can you do it another day” or just simply not answering the phone. I know how to “fix” this, I need to stop saying yes to everyone. I need to establish boundaries and take care of me. I need to stop doing things for people that take me for granted.
I think I need to accept the fact that not everyone has the same heart. People always think of themselves first. I don’t, I really don’t – I think it’s a “hazard” of being a caregiver on the level I was for so long.
I can’t explain how bad this affects my life. I can’t wrap my head around the way people treat others. It’s not my life, not my relationship, not my home and none of my business. BUT, it just seriously hurts my heart that people are so selfish. I don’t know why I can’t let it go. I am working on it!
See it doesn’t take any sense, it’s a jumble. IT MAKES NO SENSE. The only way I can keep the anxiety to a minimum is to keep my daily tasks limited so that I can work around all the mess in my head. If I pile too many “activities” into my day there is no room for all the confusion and feelings in my head to process. I can process everything as long I have time to sit and do it. I am slower at everything now – taking my time and enjoying life, even shoveling rock. The thing is, this is affecting my live, in a negative way. I am trying to work on it, trying to remember I can only worry about my home and what goes on in there. I can’t control others, their feelings or they actions. I can only worry about how I live my life and if the way someone else lives theirs affects me on this level I need to reconsider having them in my life on a close, personal level until I can get passed this.
It’s time to take care of me. to make myself my priority.
As I was writing this blog this song kept, at least 5 times, opening on my computer and playing…
WOW! It’s been a while since I’ve blogged. I love my life right now. I have a home, I’m in school, I started a new job today and I have the best two puppies ever! A lot has been going on and I have so much to share. The past few months have been full of personal growth and so much change for me. I have learned so much and am still trying to work through some things. Over the next few days I will be sharing some of my triumphs and some of my struggles. I miss sharing and staying in touch with you! All you support and love has meant me to me these last few years than you could ever imagine!
I was talking to a friend tonight. ALS sucks. It’s hard. It’s tiring. Watching someone battle ALS is heartbreaking. There are no words to explain what it’s like. There is truly no way to understand it unless you’re in it, daily. My wish is that no one else would have to experience it. There are no books to read, there are no guidelines. There are no right answers. It is all trial and error. Mistakes are made. Adaptions are learned. 
THIS IS ALS 