I've think I've mentioned this before but I have a trait about me that is constantly wanting to do better, be better, act better, feel better, etc. I've had a fascination with this practically since I was born, trying to always help everyone, make a difference, learn more, make more friends, do more things, eat better, exercise better, etc. Now often times I battle with if this is a good or bad trait, and I have come to learn that it can be both depending on how I manage it.
With growth I think people often forget comes struggle. You either grow because of a struggle you are faced with unexpectedly or you know you want to grow in a certain area & then take the struggle that often comes with change. A lot of it is a mental thing & once you overcome the mental struggle with the change & have acceptance of this change you have a feeling of success.
Since returning from our trip I have been having one major struggle & I wanted to share the story & hopeful progress with you all.
There is nothing in the world I would rather do than to be home to take care of Steve. Most people unless you are in the situation don't know fully what goes into being a caregiver of an ALS patient. A person with ALS is unable to do most everything we take for granted every day. Can't get out of bed, can't dress self, bathe self, get a drink, take a drink alone, prepare food, shop for food, cook food, feed self, can't scratch the annoying itch, go to the bathroom alone, play on computer, talk on phone, type, etc. I'm not saying all this to complain or even to bring anyone down. I am painting the picture of why it is important for me to be home with Steve. From the just needing a hug, the roll my sleeves up, the blow my nose, to the I need to stretch I am honored to be doing this for Steve. Whenever I was working I struggled with the guilt & sadness of knowing my husband was at home, needing me & I was out helping other people (being a counselor) & in my population I was working with probably 85% of them didn't care that I was there. The money didn't make up for the travel & the time away from Steve. I know I am where I belong, but yet I struggle now with not having a job. I feel the quilt of not contributing to our finances hardly at all----that I sit and worry about the bills we have, debt we have gotten, & the fact that Steve & I still want to live our lives. Doing stuff out of the house & especially the fun stuff typically costs some money. Whether the gas to take the trip to the mountains, or the money to go to the aquarium, etc. This then turns into me becoming neurotic Hope. I have to try to be super wife, super caregiver, & come up with any means---selling old items we don't use (which I'm not complaining about because I think this sort of declutter letting going process is important to me as well as they money what little it may be we can make), making candles to sell, tshirts, fundraisers, & even the idea of becoming gypsie craft ALS awareness people where we travel & set up a booth to sell crafts & ALS stuff at craft shows, etc (Thanks to Chelsea for this extra motivation in this:). Learning to balance this has been my recent struggle----which I haven't completely done so yet. Don't get me wrong, I am used to working for my money & I continue to strive to be able to do so while staying home & taking care of my husband but it's the struggle of fully being there for Steve (which is why I left my job to begin with) vs. becoming unproductively productive.
*Quick side note on the unproductively productive---this is sort of where I make myself busy doing things that aren't the most productive but to make myself feel like I am being productive. Since I've become aware of this I've been aiming more towards actual productive activities to fill my day so I actually feel the reward for doing the act. That's how it should be.
I am not writing this to complain I guess I'm writing this to share some perspective. Although, the above is a difficult struggle to me---it is nothing compared to the struggle Steve goes through everyday. I can't even complain or even think of complaining as I watch Steve. Just like most people I still get caught up in the easy complaint of I'm tired---I'm hungry---I have a headache---man I wish I could do this or that...etc. I am still striving to have less complaints daily. For those that knew me before Steve while I was annoyingly optimistic still back then I would complain about stupid stupid things. I have seen progress which encourages me to continue to strive towards a life of little or no complaints.
I am reminded daily that although sometimes I may have my little health "issues" I am so grateful for my health & will never take it for granted again. Since Steve's diagnoses we've both become much more aware of what we put in our bodies. We've gotten a lot more dedicated to it since our trip & I'm so proud of Steve for taking on these changes & embracing them. In the past I think month (or close to it) he has had only 3 coca cola's. For those that know Steve---ALS made it difficult for him to drink a lot of fluids & cokes were the easiest for him to drink. He then proceeded to drink close to 5 a day. This obviously is not healthy & hurt Steve in multiple ways; main one urinary infections. Since quitting coke's Steve has had none of the issues that he had due to them. It's a great thing & fortunately the changes that are still remaining from the stem cell he is still able to drink a lot more fluids & we've also found a lot of healthier alternatives for him. Our health is such a vital part to our lives & it's so easy for us to forget it & not pay attention to what we are putting in our bodies, how much sleep we get, or any care for ourselves at all. I'm begging if you have your health count your blessings; if you are noticing some health decline---please please do what you can to try to reverse these things naturally.
I know I always do the generic thank you to everyone that supports us but that's because honestly I cannot begin to thank everyone as we are blessed with so much support. I know there are times where we have needs but I also know that we have more support than a lot of other people out there & for that I have no adequate words. All of you that support us with prayer, good thoughts, spending time with us, visits, food, finances, friendly texts/emails/messages, & never ending kind gestures----you are all amazing. Even people we don't know other than through the Internet or maybe have only met in passing---it's incredible how much I am reminded in the great great great people there are in the world.
I thank you all for the continued strength & love as we all continue to grow in this crazy journey together.
Love!
