Update: It’s Been Rough

torn_umbrellaI have been having a rough couple of weeks.

Actually, I’ve been having a rough couple of months.

Marc has been doing really well with his recovery until I got sick. If I am not cooking and making sure he is eating every day and drinking fluids regularly then it doesn’t get done. In the span of the two weeks I’ve been down from severe migraines and being lightheaded, he’s become dehydrated and started having fevers. I finally got him hydrated again and the fevers under control. Since he is on so many medications I don’t think he understands that just because he has two liters of IV fluid daily that he still needs to eat and drink regularly. I understand he probably doesn’t feel like it but now I have put him back on three liters a day. Originally, I dropped it down to two liters because he was having issues retaining the water and with poor communication from the doctors, it was my best judgment. Since that issue has been corrected, I now have to correct his dehydration and eating habits. It’s insane the chaos that two weeks of not following a routine can cause.

Today, I was feeling really down on myself. I was upset because I’d let the ball drop with Marc because I’d let myself get sick and upset because I had no insurance to combat half the issues I have that are making me sick. I came home from my dental appointment, which has been prolonged because of the issue of having no insurance and dealing with issues that were not properly done when I did have the insurance, and tried to relax because my blood pressure was 161/99 which is incredibly high for me. I am always normal range.

Then I kept thinking, why is my blood pressure so high and if I don’t have insurance how am I going to get medication to lower it if it gets out of control? Cycle of obsessive and unhelpful thoughts pouring over me. I spoke with my mom who told me that having dental issues actually raises your blood pressure, especially if there is pain and an infection. Yet, she also reminded me, I am doing my best and that I can only focus on one day at a time.

I know all this but some times it helps to be reminded. It helped calm me down.

A friend today posted something that we’d seen from TEDx a month ago that we were both moved by and told me that the young man who had done the talk had passed away today. I remembered the talk but decided to watch it again. All I could do was cry for 20 minutes. I was so heartbroken.

This high school kid had lived such a wonderful life even with the illness he had. He was so positive and upbeat. I, on the other hand, had a migraine and a toothache and had crawled into the fetal position for a few weeks hiding from life while my husband, who never complains about anything, tried to take care of himself and me, in the process. I felt absolutely horrible.

I was sad because here I was complaining about being tired, frustrated and sick when I spent every day with someone who like this young man in the video had bigger obstacles in life and just seemed to breeze through them with so much more grace than I was able to muster over the last few weeks. Sad for myself because I expected more from myself.

Despite having this young man as inspiration, despite having my husband as inspiration… I am tired. It’s true. I feel as if everything is coming crashing down right now around me and I am too weak to try to pick up the pieces. This is what upsets me most because I have been taking care of Marc since 2003. He had something very similar then and I walked right through it as if it was nothing. I nursed him back to health, got him back to work and kept working myself during the entire ordeal. Granted, this time he was much worse. This time he almost died twice and has developed multiple other issues with it but I have been dealing with this new round of illness with him since 2012 and I have had my weak moments but none so weak as these current ones.

I think it is all the push back, all the obstacles that we’re facing. As soon as one gets settled and cleared up there is one more waiting in the distance to create more struggle.

I know I will get past this hump and once I feel better my outlook will change. I haven’t given up by any means but I am in definite need of a break.

Any way, here is the video I watched today of Sam Bern, may his beautiful soul rest in peace.

Related
Avatar of Casandra

About Casandra

Hi! My name is Casandra Porter. I am the wife of, Marc, whom I care for. He suffers from a potential fatal infection that has spread to his brain. Something that is extremely rare. He is a patient of both Mayo Clinic AZ and Stanford University and has many other doctors on consult worldwide. We are a young-ish couple, in our early 30s. Marc is an avid video gamer and the resident comic relief. I am an amateur writer but my main focus is on working with independent artists and writers helping them gain following through social media outlets. I run several blogs. My current project with Marc is a blog called, Running With Sharp ObjectsIt is a blog dedicated to our marital conversations about the most wacky and hilarious topics, mostly pertaining to pop culture. It's a way to keep humor in our lives and bring a little bit to others. We are also setting up a Facebook page for this site where we share inspirational stories, quotes, etc. But, you can always find me right here on Caregiving.com blogging about my life as a Caregiver.

7 thoughts on “Update: It’s Been Rough

  1. Avatar of donnadonna

    You are allowed to admit weariness and frustration. This is definitely not for the faint of heart. You are stronger than you may realize, and are still accomplishing amazing things every single day. I do wish you had a support system there, so you could truly take a break. I know it’s so difficult to take care of yourself while spending so much time caring for Marc. I pray you start feeling better soon. I was inspired by Sam’s spirit as well, and was so sad to hear of his passing.

    Reply
  2. Avatar of PegiPegi

    Casandra, it is hard, really hard and as Donna says weariness and frustration are in the job description. You do so much for Marc with no help from anyone. I’ve gone the same route as you and let myself get ill and dehydrated a few hospital visits ago. We just can’t do it. I also have trouble having my husband stay on schedule when I’m down with something. You are in my thoughts and prayers and I hope you feel better real soon. You, and all you have done as Marc’s wife, caregiver and advocate inspire me. Be gentler on yourself.
    Sending positive vibes and a big cyber hug.

    Reply
  3. Avatar of G-JG-J

    As caregivers I think we can be wonderful at caring for someone else and just terrible at caring for ourselves! When life knocks us upside the head, whether it’s a cold, tooth issues or a migraine, we beat ourselves up for it which just makes it worse! (Oh, and I a side note, migraines are just the worst!! One time when my Dad was living with us after my Mom died, I got a terrible one. I wouldn’t tell him I was suffering because I didn’t want to bother or upset him! Good grief! He would have understood. I remember him having them when we were growing up. What did I do instead? Called my husband at work (he still worked then) and cried!! Oh, my!)

    Cassandra, I find you absolutely incredible, inspiring, and amazing to name a few things. When I read your blog, you said that you dealt with something similar with Marc in 2003. You do realize that’s 11 years ago, right? :) That means you’ve been dealing with caregiving issues for 11 years!! Wow!! And I don’t know about you, but I’ve gotten 11 years older during that time and as much as I think of myself as still being 30 (and that’s way more than 11 years ago!!) sometimes I feel twinges and aches and pains that weren’t there even 11 years ago.

    You are doing a wonderful job with Marc! Print that out and put it on your mirror where you can see it and remember it.

    Regarding insurance, have you contacted Covered CA yet? You may qualify for free insurance actually. I’ve had to deal with getting insurance that way, and while I still don’t have my insurance cards, so far so good. Let me know if you want any more information about this.

    Reply
  4. Avatar of MissAngieMissAngie

    I agree with Donna. You are allowed to feel frustrated and it’s OK to vent. I suffer from migraines too. It is so awful dealing with those we care for when it feels like our head is exploding along with our chaotic life.

    I will pray that you feel better and that you get Insurance soon.

    Reply
  5. Avatar of ejourneysejourneys

    Casandra, when I think of what you and Marc have been through since you started blogging here, I truly am humbled — and what I’ve read constitutes a tiny part of what you’ve experienced. Burnout sucks even when we’re in the best of health and even with the best support system available. You have been doing an amazing job while running on fumes.

    Venting and crying are healing, even if they don’t feel like that at the time. Emotions just are. I hope you can get the insurance and that you can rest and recover. Sending you (((Big Hugs))) from here.

    Reply
  6. Avatar of Gail KrollGail Kroll

    Casandra, first of all? I am so proud to call you “my friend.” YOU are an inspiration to me. I saw this TV program too. It is continued on the ABC.com newsline website too. This young man led a normal life. His Mom wants to find a cure for his disease. But he had a normal life at school. And at home. It is people like you, Casandra, who keep Marc’s life normal and sane. YOU are MY inspiration! Remember that okay? Love you!

    Reply
  7. Avatar of TeresatalkTeresatalk

    What a great video…thanks for sharing it–and your own story. You do have so much on your plate. We caregivers are allowed feelings too, and we’re even allowed to be sick. Do take care. I pray you get to feeling better soon, both physically and mentally.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>