The Beast Within…

Living On Oxygen for Life

Over the past 10 years or so, this beast inside me has grown and mirrored the decline of my health. It all started with what I thought was constant worrying. You know… when you have to time how much your oxygen will last? Well, that can make you worry about checking your oxygen tank a LOT when you are out having fun. Then I would worry about how long my energy will last while I was out having fun. Can I walk that far in the mall or in the hospital for doctor appointments? Will K get upset if I need to stop to sit down for a few minutes. I know the last one is kind of an irrational worry. Of course K wouldn’t get upset but he did try to push me to walk a little further before stopping which only made me feel like he wasn’t taking my need to stop seriously. My health wasn’t as progressed as it is now. So, pushing me a little bit further was a good thing that K was doing. It’s just when I was tired and felt like I needed a break, no knows how I felt except me.

I turned all this worrying about so many things in my life into trying to control everything around me. I felt like I needed to manage everything so that I had enough energy for things that I had to do around the house and the things that I wanted to do with K. I wanted to know where we were going when we were out of the house, what route we were going, and even how K drove. I needed advanced warning when K wanted us to go out to have fun so that I can be sure to rest up during the day. But all that wasn’t working. Trying to control everything turned into Anxiety because there is no way that I could control everything, be happy and not irritate those around me.

It’s taking a long time to learn to let go of the control issues. K reminds me by saying that he “Gets it.” and “I will always take care of you. I always have your best interest as my priority.” It has helped me a lot with him saying this to me. I have to remind myself of what he said over and over because my memory doesn’t retain information as well as it use to. So, when I get into my vehicle with K, I will remind myself that he has my six. *wink* Giving up the control and learning to trust is a very hard thing to do for me because I feel as if I’m losing more of my independence. However, as long as we have fun in our lives, all will be ok.

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27 thoughts on “The Beast Within…

  1. Loved your post!! I hear ya sister!
    I use a battery operated machine to travel and even though I know it doesn’t give me the same oxygen value as my home concentrator or a bottle, I still use the crap. Each battery gives me 2.5 hours at 3 litres and if I walk and over breathe it gives even less. It charges in the car, and I have a wall charger I carry if we visit anyone of stop at a cafe with a power point to recharge.
    I would always worry. I’d worry about the battery supply, I’d feel like a cheapskate asking people to use their electricity when I visit, the noise the canula makes as I inhale each hit of oxygen embarrassed me, pulling the trolley makes me look like a sales representative or a person boarding a plane at the airport… People gawk with curiosity. It can be overwhelming.
    When my husband plans a day out that’s LONG… I would panic and start calculating each destination and the battery life. It would suck the fun out of the day… Not gonna lie. I think sometimes the build up to the day I’d get all worked up and make it worse for myself.
    New plan… “Fuck it” attitude… Accepting this is my situation and I’m doing my best to enjoy life while I’m here despite my “baggage”. Anyone that judges shouldn’t affect me, it’s their karma.
    If the battery runs out, my hubby knows it’s either back in the car for charging or find a power socket.
    We’ve reduced long days into a little shorter so I don’t over do it and pay for it over the week. As you mentioned when am reassured you that he knows what he’s doing, my hubby did the same and I felt safe, I felt the fear of all these build up of worry disappear.
    As sweet as our loved ones are…. As much as they reassure us that they get it….. As much as they do their best to understand… The don’t know what we go through.
    The fact that they don’t fully understand is a good thing, it keeps us pushing on and staying strong for our own survival.

    • Thank you for understanding. This is why I wrote this post. You get it and others get it too. They’ll realize that they aren’t the only ones feeling the anxiety and control issues because of their health. Thank you for posting your comment. ❀️ *hug* –Christine

      • Thanks for sharing Christine!! It’s nice to know its “normal” to feel this way.
        I’m not loosing the plot.
        Our medical circumstances tend to make us feel guilty for how we cope.
        I once told the dr how I felt and he was quick to insist on pushing depression pills. I felt like screaming at him…I’m not depressed! I’m on full time oxygen and being told I’m going to die any second you asshole!!!
        Soo… Rant over. Lol
        Sharing helps us all feel normal and sadly as much as our loved ones want to get it and understand it…. They will never fully understand the mindset.

      • I can understand why your doctor suggested an antidepressant because some of the signs or symptoms of depression match having breathing problems. However, if someone reading this comment has found themselves withdrawn from everyday normal things, things that normally would make them happy, that could be a sign to seek help. Therapy or Support group is a good place to start. Before this year, I never thought a support group would do much good. Since I started going to my local PH Support group, I’m finding that I love it! πŸ‘πŸ»

        Your rant is ok with me! ❀️☺️

      • Thanks for clearing that up.
        I think support groups are great. I attended one for a while.
        I just think we need to accept our journey to the best of our ability and talking about it makes the journey easier to travel.

      • I agree. Back when I was 17 and started on oxygen, there was nothing like blogs or support groups that I could turn to. You’re right that we should keep the conversation flowing especially for those who follow behind us and are new to all of this stuff.

    • OMG, Thank You Thank You. You hit the nail on the head. I have tears in my eyes. Someone actually understands what I am really going thru. This post came at a very crucial time for me. Sometimes this battle just overwhelms me and your sharing this is supporting me. You understand cause you are on the same path. I wish you and the others posting here were not having this problem BUT I am blessed by your and their sharing. I feel 1,000 lbs lifted off my shoulders as someone really understands. You all have a 100% credibility rating because you have been there and are still on the path. I know I am not alone but having the chance to share with someone who is on the same path makes this easier. I think the worst part of this is the misplaced guilt it makes us feel. Not wanting to be a bother, feeling our loved one could be living a much better life without having to deal with this illness, Trying to truly believe them when they say ” I got your back.” “I love you and I am blessed to be able to be there for you.” When our minds tell us ” Ya, right…your just saying that cause you have to..” I know if the shoe was on the other foot I would gladly give everything to be there for him so why do these negative thoughts slide in making me think he doesn’t feel the same way. You know those 3AM can’t sleep in pain thoughts. OK I have bent your ears long enough. Sufice it to again say THANK YOU for being here for me and thatnk you to your friends that also posted on here.

      • Hi Marilyn,
        Don’t cry! I know how awful it is to feel overwhelmed. Having faith in yourself and your self-worth helps with trusting the other person who says they love you and has your back. In the past, I told my husband that he should travel with his family (sisters, brothers, etc..) for a vacation if I can’t go. He wouldn’t do it because he said that the fun of being on vacation is to experience it with me. It first it made me feel elated and then it made me feel a little sad at the times when I couldn’t go on vacation and he’d be home with me. As much as I would want him to go have fun, he has chosen his life with me and willingly waits until we can go have fun together. So, does he sacrifice a lot to be my husband? Yes, he does in my eyes, but it may not be the same view from his eyes. I have to believe in my self-worth to be able to trust in what he says is true. Sometimes, when I need a confidence booster, I walk up to K and say, I need a hug. I mean, don’t hugs make everything better?

      • Hello. Thanks for the reply. Great to hear it’s helped.
        I know what you mean about the “feeling like a burden” thing and I see it now that I’m here to teach my partner something on his journey and he’s teaching me something. It is how it is for a higher purpose.
        Our illness is a blessing in disguise, it not only makes us more conscious of our life and not taking it for granted, but it also touches the people around us.
        Stay brave and I’m here when ever you need to chat. You’re welcome to add me on Instagram as I check that often πŸ™‚

  2. Excellent message! Thank you for putting my exact feelings in print. I am going to print this out and show it to my husband. Things have been a little rough lately; I think this will help him understand what is going on with me. I am also inspired to give up total control, and rely on his love and understanding more. We have been married 50 years now. PH and PF have intruded into our lives too much-taking back control on that aspect, too! :o) Excellent comments, too. Thank you and take care.
    Linda in CA

    • Thank you Linda… I’m glad I could share something that could help you in some way. Fifty years?!?! I’m impressed! I have one more year until my husband and my 25th anniversary. *hugs* to you!

  3. I totally get it! My mind wants to go down the rabbit hole all the time but I’ve gotten good at stopping it s d focusing on the present moment. It’s a lot easier said than done some times. However, I feel that since then I maybe don’t worry enough and I should be more careful about what I’m doing, eating, conserving energy, etc. But I like to have fun and focus on what’s in the here and now so sometimes I get myself in trouble like ending up in the hospital. It’s a balancing act for sure!

  4. Although my details are different, I also experience anxiety. At the time, I kinda/sorta know I’m being irrational, but once it takes hold, the anxiety is hard to shake. I’ve been doing tapping, EFT (Emotional Freedom Technique) for years and recently found a new way to do it that has helped calm my anxiety. It’s amazing how calming EFT is. For helpful videos, check out Brad Yates. By the way, my issues are BPAP . . . it’s a long story but has been more stressful than having breast cancer surgery.

    • Hi Marlene.. I’m glad you found something that works for you to help calm your anxiety. Usually I start reading a book so I can fill my mind with other thoughts. It sounds like you’ve been going through a lot. I hope all is stable and well with your health now. I’ll have to check out EFT and Brad Yates. Thank you for the suggestion.

      • Thank you, Christine. You are so kind. Thanks for keeping this going so we can help one another. Another method for calming and handling our fears is hypnotherapy. I live in Nor. Cal. and work with a therapist in So. Cal, over the phone. He sends me the recording of our session so I can download and listen whenever I want. Hypnotherapy has been a very relaxing technique for me.

  5. I have the same issues as all of you. I am actually very anxious when having to travel alone, even for a trip to the grocery store. I have tried anti anxiety medication in the past but had bad side effects. I may have to ask to try it again. The last year or so I have had to be a caregiver to my husband as he had been quite ill, causing lots of stress. He passed away three weeks ago, and now I am on my own. Thankfully, my daughter lives close by and she and her boyfriend are being very supportive! You are always an inspiration to me, Christine, and it is nice to see there are others that offer wisdom and support. Thank you!

    • Oh Bonnie I’m so very sorry for your loss of your husband. *hug* I’m glad you have family that live nearby to help you. When I go somewhere alone, I’ll text someone where I’m going, when I get there, if I stop anywhere along the (if I’m going on a short roadtrip to Oklahoma), and when I get home. That way, someone always knows where I am and that I’m ok. Do you do this Bonnie? I don’t take anti-anxiety meds because they make me kinda tired.

  6. I think support groups are great. There everybody can share what has happened to them or how they cope with the problem. We all realize everybody is different so what works for me may or may not work for somebody else. There are a lot of great comments said in this blog.

  7. Exactly. But it’s great that we can share those feelings. That way someone else can be helped. I agree with everything you said. Open communication with our spouses is the only way we can travel this road. After 52 years with this wonderful man I know he feels the same way K does.

  8. I do not have PH, but do live with oxygen 24/7. I have Lupus & Interstational Lung Disease. It helps to be on here with others who understand what we go thru. I also have lost so much independence, & don’t go out much so I enjoy reading from you Christine & others. Thank You Christine for starting this & sharing.
    Keli

    • Thank you for sharing your thoughts Keli. It’s good to see you again. I hope all is going well for you. *hugs* you can also reach me by email if you have a specific question or just want to say hi. Take care of your self. Almost time for the flu short. Do you get one every year? –Christine

    • Keli, I’m with you and still waiting on a final diagnosis and treatment. I’m actually seeing a new Rheumy and waiting to see the Pulmonologist to get on the same page as far as treatment but we know it’s autoimmune related causing me to be on oxygen 24/7 as well.

      Christine, you have provided me with more support than you know while I’ve adjusted to this new accessory. Since I’ve moved to Dallas I’ve had to wait to get a the regulator that conserves (supplier says need an Rx for it from the pulmonologist) so I constantly have people coming up to offering advice to let me know (in case I didn’t) there are smaller tanks or machines so I don’t have to lug around my big tank. Always thinking of you when I’m out and about the Fort Worth Area. πŸ˜‰ I know you can say been there done that! There are days my husband says I should make a big sticker to slap on my tank for the people that stare. There’s definitely extra “baggage” planning a simple trip to the store, tanking inventory of your O2 , but God made us different and HE’s never made a mistake. I used to be pretty shy and this has forced all eyes to be on me like it or not, but I’ve had so many people come up and bless me with prayers.

      Our lives do have purpose, even if physically we may feel weak. God uses us, and that is powerful!

      Praying you are refreshed and feeling strong! *hugs*

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