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    • #20276
      Jen Cueva
      Keymaster

      After two full days of resting, I was told yesterday at my Hematology appointment that I need to REST more. He also said, ” remember, even on your best day, you have multiple chronic illnesses fighting against you”. I told him, I’m aware and I just wrote a column about this exact topic. He then lectures me about telling others what to do and me doing it is not the same. He also said I need more iron infusions starting possibly this week or next. Awaiting insurance approval. He reminded me that I am a ” sick young woman”. Thanks, I’m glad I’m paying for that information. Nah, he’s a great young and caring doctor. He jokes with me, too.

      Then today, my therapist tells me how I need to rest and stop trying to ” do it all on my to-do list”. So, I guess I’ll still be simmering here as we know I won’t sit still.

      I know I’m rambling, I think I’m just frustrated with myself as I know I need more ” me” time and rest. I like doing things, though. It’s a contact battle.

      I know most of y’all can relate. Share your fave ” self-care ” and rest tips.

    • #20278
      Brittany Foster
      Keymaster

      It definitely is a constant battle Jen. You’re not alone in any of those thoughts, especially around wanting to do things but also trying to get your rest too and giving yourself permission to slow down. The hardest part about this for me, is realizing and admitting that I HAVE these conditions that really DO limit me some days. I try my best to really live my life without a ton of limits, but when I need them I need to stop avoiding them and running from things trying to convince myself I’m “fine”. I’m sure you get it.

    • #20284
      Jen Cueva
      Keymaster

      Brittany, certainly, this is my problem, too. My Hematologist and Therapist reminded that I needed not to forget that I DO have these illnesses. I, too, tend to think I’m fine when in reality I need rest, a break, or something besides keeping my mind and body busy.

      Remembering that we need these mental breaks as well can be challenging but important. I know its certainly much easier said than done. I think I’m going to try to work on a more flexible schedule for myself with more frequent rest breaks. Some days I already feel like all I’ve done is rest. I have to learn to accept those days, too.

      But, as my hubby is about to have his ” weekend”, I’ve already asked what we have planned. HeHe – this is just me.

      • #20294
        Brittany Foster
        Keymaster

        Jen,
        You definitely have to give yourself a break though because I do think you are doing all you can with what you have been given. Even if that means having to rest and relax and enjoy movies once in awhile. yesterday when my boyfriend came home we watched a bunch of episodes of “to catch a predator” LOL don’t ask me why we love crime and weird shows like this but we do haha! But it felt good to just relax together and unwind. I have to remind myself that “healthy” people and those without chronic conditions ALSO need these mental rest days and physical rest days and there are tons of people who would rather binge watch a show after a long week vs going out on the town. I just beat myself up over NOT doing the things that I know would be a push for my body, but I am getting more comfortable with accepting what I CAN do and taking it for what it is.

        • #20334
          Jen Cueva
          Keymaster

          So true, Brittany. After yesterday, my therapist again reminded me that, too. I said that I would work on taking more rest time. We all need those mental breaks, even people without these medical issues as I’ve been reminded.

          Well, this morning or I should say Brunch time, my hubby took me to a small local fave brunch spot. I was planning to make protein pancakes with berries. After our wake up latte and coffee, my hubby asked if I wanted to go grab brunch instead. Of course. I was up for that, Hehe

          It was great as we have been going there for several years and had not been in a while. Some of our fave servers were working and we enjoyed catching up. Plus I just ordered a turkey sausage and added apples and cinnamon to my hubby’s pancakes. I knew I would only eat a few bites. It was yummy. We enjoyed it.

          After that, we did come home and relax a while before going to the store. Although it sounds busy, I took a break in between and we took it slow today, Tonight is Netflix and chill time again.

        • #20348
          Brittany Foster
          Keymaster

          That sounds like a really great start to your day, Jen! Brunch is ALWAYS a good choice and breakfast is actually one of my favorite meals ! Those pancakes I bet were delicious. Pancakes with a lot of syrup and really mushed up is actually one of the foods that I don’t have that hard a time with eating so when I go out to eat for breakfast with my boyfriend that’s usually my go to ! That and omelettes you can’t really go wrong with. Breakfast is the one meal I end up being able to eat and then anything more after that just builds up in my stomach and I end up getting sick. So I make the most out of my first meal of the day ! Did you watch anything good on Netflix?

        • #20354
          Jen Cueva
          Keymaster

          Thanks, Brittany,
          It was a great day. I feel like I paced myself more.

          Sorry, I fell asleep during Netflix movie, I don’t have any suggestions on Netflix, sorry. Maybe after the weekend, Hehe

          Thinking of you today as I know you. have an appointment.

    • #20305
      Colleen Steele
      Keymaster

      I’m so sorry Jen. It sounds like your doctor is trying the “tough love” approach on you. Although it was out of concern I know how crushed you must have felt as you left his office. It’s frustrating when your goal is to live life to the fullest, but not without a lot of rest too. The balance is so hard when you have serious health issues.

      Recently my husband downloaded family pictures as a screen savor on our TV. No idea how he did that but I can ask him if you want. I mention this because I’m really enjoying it. When I’m sitting on the couch working, reading or just chilling, I enjoy and am sometimes surprised by the pictures that pop up. Pictures are such a great way to revisit things you have done and might make you feel less down during moments of rest.

      By the way, yes, you are sick but your health doesn’t define you. To me you are a brave, funny, creative, compassionate woman.

      I’m sorry you have to do iron infusions again. How long do those sessions take? You can tell your doctor you will rest then…LOL.

      • #20306
        Brittany Foster
        Keymaster

        I like that idea for the pictures! So cool. I have seen this in people’s houses before but it is in a picture frame so it is like a live picture frame of a bunch of pictures. Really entertaining to look at! Cool if you have guests over or something too. I’m sure you like looking back at good memories. People don’t have photo albums lying around anymore but when the photo albums come out it’s such a good conversation starter and always gets everyone in a better mood. Even when the embarrassing photos come out hahaha! I have a LOT of those!

      • #20335
        Jen Cueva
        Keymaster

        Thanks, Colleen,
        I don’t know how to do that screen saver on a TV but I’ll ask my hubby. He is the tech one here, too. That’s a great idea. I love looking at old pics, often I’ve been looking for a certain pic online and I’ll be an hour or so later, its relaxing and reminisce, too.

        I appreciate your words of encouragement, it’s certainly ” tough love”, but we all need it at times. You’re so sweet and I’m blessed to have y’all here.

        The infusions are 5 total. About an hour-long each, not bad, they just want you to wait so many days in between. I haven’t heard back yet as to when I’ll start. He thought that week, my guess is next week.

    • #20309
      Rockefeline Denis
      Participant

      Hi everyone,

      Jen, I can relate to your situation for I’m in that boat as well. On my best day I forgot that I still need to slow down and take it easy. My partner told me once “ sweetheart, it likes you have $100 in your saving account and you went and spent $95, how long will it take you to add another $95?”
      It is not easy for us to slow down when feeling well. We tend to believe we are truly well until difficulty breathing, fatigue take over.
      I like the idea of pictures slide show. Please, let us know how to upload them to the TV

      • #20319
        Brittany Foster
        Keymaster

        My thoughts exactly ! Thank you for adding in your experience with this too, I know it is easier when others seem to relate to what you are going through and this is certainly a topic that a lot of us can relate to and write more about. It’s true what you say that we don’t realize how much energy we are actually using up. The little things through the day that we do really add up to be the bigger things and feel a lot bigger than they even were. Especially when we hit that wall of feeling run down, overly fatigued, and worse if we have breathing difficulty on top of it. We NEED to remind ourselves to slow down every once in awhile. It’s a crucial part of self care.

      • #20336
        Jen Cueva
        Keymaster

        @rockie436, I love that analogy. Although, I suck working with budgets, too. Maybe that’s my issue, lol

        I’m always wishing I have $1000 when I might have $10. It certainly is important. I know I didn’t get this far running my body ragged. I do have to start doing better with this. Self-care is crucial for us.

        I appreciate you sharing your experience with me and this analogy I will remember. Especially when I pay bills, hehe

    • #20326
      Jimi Mcintosh
      Participant

      Jen , what you are experiencing is the biggest side effect of this disease. They tell you that you are running out of time, and suddenly everything on your “punch list” become a priority, it has to be done. Our bodies keep telling us to slow down, do a little, rest a little. I continue to do things that I no longer have the strength or energy to do, I cannot ask for help. Besides rest, try to laugh at something everyday.

      I was on iron infusions for anemia and after the 3rd infusion, I developed a rash and breathing issues. I added this to all of the allergies to things that never bothered me. I rest for a few minutes and then struggle to complete the project I was working on. I will probably leave my family an unfinished project to remember me by. LOL.

      Take time to rest, smell them roses, look at the scenery. I look forward to annual semi-annual blood transfusions. Ask for B-12, 65 mg iron pill, use folic acid, D-3, more organ foods and a daily dose of sunshine. If you are on Warfarin, be careful of some green vegetables and other food that interact with it.

      One of the things that I keep putting off is the digital medical bracelet with all of my health issues and meds on it
      scared that someone would start to read it and would give up trying to save me.

      • #20337
        Jen Cueva
        Keymaster

        Thanks, Jimi,
        I appreciate your tips. I’ve had iron infusions multiple times without any issues, thankfully. I was on all types of oral iron and my body wasn’t absorbing any. I don’t have an issue with D or VitB12 this time, which is better for me. I eat a ton of veggies. I am not on a blood thinner anymore so I don’t have to worry about that, thankfully.

        It certainly does makes us stop to smell the roses. I know it’s just a season and I’ll work on being better with self-care. It’s not always what we want to do, we have to do what our bodies need.

        • #20347
          Brittany Foster
          Keymaster

          Powerful message, Jen. You’re so right that it might not exactly be WHERE we want to be in the moment or what we actually want to do, but we don’t really have much choice when it comes to taking care of ourselves and making sure we are doing the right thing. It all pays off in the end! Rest will just make you enjoy the little moments a LOT more and will help you save energy for those BIG moments too.

    • #20339
      Beth Tebaldi
      Participant

      Anyone ever hear about the 20 spoons? You have twenty spoons to use each day. Now remember each thing you do costs you a spoon and you only have 20.
      Wake up and brush teeth-1 spoon. Get dressed one spoon. Make breakfast one spoon. Eat breakfast one spoon. Because that’s our reality. We only have 20 spoons. When you get down to four spoons remember that you still have six things you need or want to do. That means you’ll use four spoons, no energy to relax with TV, no spoons left for brushing teeth, no spoons for talking on the phone like you wanted to do. You need at least two spoons to bathe and get dressed for bed. That’s it. You’re only going to have enough spoons to get done with dinner. You used all your spoons you have zero spoons ( energy) left.
      So now you’re going to bed without brushing your teeth. You’re going to have to sleep on the bathroom floor, in your clothes with unbrushed teeth, a dirty body, no pills taken, no extra blanket because it’s hard to get it down off the shelf.

      Get it? You have 20 spoons. As you go through your day you only have so much energy. Don’t spend all your spoons before dinner or you’re going to use extra spoons.
      What happens if you use all your spoons too early in the day… you decide to use five spoons from the following day… now the following day is here but you’re going to suffer because today you only have 15 spoons. You are going to get less done, and you’ll probably be forced to nap because damn! You used all of your allotted spoons!

      So it’s important to only use 20, if you choose to use less than 20 spoons you might actually have an extra spoon or two to read in bed and talk to your mom before you go to bed.
      Food for thought. It was profound when I really thought about it.
      Go ahead and figure out how many spoons you used already today. ( reading my post does not take a spoon, it may have been a long post but let’s call it free). I’ll give you that one.

      • #20345
        Brittany Foster
        Keymaster

        Beth,
        I always loved reading about the spoon theory. It makes a ton of sense for those of us with chronic conditions especially because we really have to be aware of the things that we do in the day that can make us run out of energy and steam. It does all add up as the day goes on and you can really feel the difference from the beginning of the day to the end. This theory is a good visual and a good reminder for those in our life who also might not “get it” and understand what you mean when you say things like “I have to save my energy”. I find myself saving energy or “spoons” for the things that I really want to do, even if that means saving up my energy all day in order to just go out and do something at night with my friends.

    • #20338
      Beth Tebaldi
      Participant

      Jen I commiserate. Let me tell you what you can do right now that is a self care tip. Here it comes…wait for it… please stop getting down on yourself. There. I know it’s easier said then done. But do you know that this is self care also? Our brain needs as much rest as our bodies. If you can accept that you do know you need more me time and it’s ok that people are reminding you then it may not be so hard to rest.
      Take care of how you are treating little girl Jen. You’d never get down on her if she wouldn’t stop playing and just take a nap, would you? No.
      So missy, be gentle and kind to Jen. Talk to her if it helps.
      It’s ok that you needed reminding. It’s ok if you are doing too much… yes it’s OK. Just take the suggestions, that’s all they are, and tell yourself you’ll try a little more to do one less gotta-do on your list today.
      There are things you HAVE-to-do
      Things you NEED-to-do.
      Things you WANT to do. Make a list. Put them in three categories or a mental list. Physical list helped me a lot! I still do this if I get too frenzied. Over time you’ll do this automatically. It made my OCD symptoms all but disappear.
      Deal with the have-to-do within the time you’ve decided to deal with. I give myself a week
      So from Monday thru Friday I HAVE to get this thing done. I also NEED to get these things done…I’ll pick a few for today and maybe Wednesday and Thursday. If all the need-to-do things don’t get done by Friday, give yourself permission to carry them over to the next day or the next week.
      Next do a few of the things you want to do. Either schedule the want-to-do or slip it in anyway you want to. Always remember the want-to-do things can be done whenever you want. Be kind to yourself if you don’t get to all the need-to-do things during the allotted time, YOU come first ( little Jen needs to play and to nap, be kind and encourage her). Carry over the need to do to the next day, and then to the next day again until you get it done.
      The emphasis is to make time for the I want-to-do items.
      Mark off when you do a project. This helps spread things through the day or the week.
      I also have found to make my dr appointments only one every week, no more.
      I also give myself everyday till 2:00 pm to do me things. It’s now become a hard fast pleasure. Everyday I get until 2:00 before I have to get things done. I even won’t schedule hair cuts, appointments or other things like grocery shopping until 2:00 pm.
      During that time I have coffee, take my pills, leave the shades drawn and in pjs listen to my book, read my email etc. but I don’t engage my brain until I give me my time.
      Everybody is different. This is what worked and still works for me. If I don’t do lists or actually put things on certain days during the week, I’ll try to do it all in one day and ironically the next day instead of relaxing I’ll have tons of crap to do! LOL
      Schedule you time into your day maybe first before anything else so you are sure you “find” the time.
      Lots of love!
      I hope I didn’t ramble too long.

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