When the Body Says STOP

This morning I woke up, and as I laid there waking up I felt okay, but not great. It’s rare that I wake up feeling great anymore.  It takes me a few to wake up and a few longer most mornings to get the stiffness out of my joints enough to a point I feel comfortable enough to stand. My hands were a little stiffer this morning that normal. After about 20 minutes of laying there and slowly moving my knees and fingers around to work the stiffness out I decided it was time to motivate. My cat had already made several trips back and forth between the living room where my husband was and the bedroom, to noisily yowl at me. As my feet hit the floor, it felt like I was stepping into quicksand. My whole body felt like I was moving in slow motion.  I took my first round of my morning meds and slowly dressed for the day. I told myself that maybe I’d feel better after breakfast.

I greeted Mellow a few minutes later and then Doug got up and we all went out for breakfast. I took my Plaquenil and Imuran at breakfast, since they both need to be taken with food and groggily ate my food. I just couldn’t shake the walking through quicksand and groggy feeling. As the day wore on the feelings lingered. I was frustrated. Some days are like this. They come out of the blue. The days you need to be able to bring your A-game and all of a sudden your body throws up a big stop sign in your projected path.

That was my day. I had several errands and chores I had wanted to get done today. The guys were going to be around and I figured with them focusing on the outside it would be a great day for me to focus on catching up on the inside of the house. Plus we had some errands around town to run. We got a few errands ran. I’m sad to say I managed only load of laundry today and the rest of my list was put off to be done another day. I’ve learned I can no longer push it when I feel like this. If I do I’ll end up in a flare. I’m just hoping by taking down time today I’ve headed off what might be the start of another flare, I just got out of one.

Honestly the last time I felt this low of energy, my INR was sub-therapeutic and I had a transient clotting event. I’d be lying if I said that doesn’t have me nervous. I have an appointment Monday morning with Dr. C to get my INR checked and if I’m not feeling better I’ll mention how I feel to him then regardless of what my INR is.

I don’t know that I will ever be okay with not being able to choose my down days. I’m not use to having to sit out because my body literally just can’t. I do not know how to be this sick person Lupus and Antiphospholipid Syndrome requires me to be. I am not sure how to be that person, I am not sure if I ever will be and if there’s a class on how to be a sick person I sure as hell missed it! As I type this I hear the voice of AL “Loss of control”, yep here it is again. This is a great representation of it, and how it comes up in actual context in my life.

I’ll have a plan, I’ll set out to do said plan, and before I can even get started my body will deceive me and render me incapable of doing said things. Yes, part of today was choice of not pushing past the fatigue, of actually listening to my body for once and not pushing too hard. I’m learning, I don’t like it though. I do not like these lessons I’m having to learn. I guess one of  good things that is coming from all of this though is more self-awareness. We can all stand to be more aware of ourselves and our bodies and what they are trying to tell us. I just have to learn to accept this and learn to stop without being so frustrated about having to do so.

(image from: http://camphalfblood.wikia.com/wiki/File:Happy-oh-stop-it-you-l.png)

 

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22 thoughts on “When the Body Says STOP

    1. Thank you, me too. I have so much I need to do and tomorrow there work stuff that has to get done. UGGGG. I HATE this not being in control anymore. It’s one thing when it use to be a once in a while thing due to acute illnesses but when it comes to having to take down days on a regular basis it gets rather frustrating! *grumbles a little more* okay I’ll stop. LOL

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      1. It must be very frustrating. I don’t have a lot of knowledge about lupus, but I appreciate the opportunity to learn about it through your blog. Hope the rest of the weekend is better.

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      2. It can be a very frustrating disease, and every person that has it, has their own journey they travel. It can affect each person differently. I really appreciate you taking the time to learn about it through my blog. 🙂

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  1. Just wanted to let you know I can empathize. It has been a very painful and difficult day for me. I am glad you can still keep a positive outlook. That is one of the best things you can do to help yourself. I hope your INR Is okay. Take care.

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    1. Thank you for sharing. I’m still trying to be okay with this part of my life. The having to stop and not do things when I really want to. I’m doing my best to remain positive. Or rather maintain what bit of positive outlook I have left. It has taken me a little while to get back to being able to see the positive in all this. I hope for a better tomorrow for both of us! Get some rest and I hope you have a pain free (or at least less painful) day tomorrow.

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  2. I remember those mornings! Realising how badly I tempt fate to admit it, but I’m in relapse now. I’m so sorry you feel like this in the mornings and hope you get some respite too soon. You are a good, strong and beautiful woman and it is so great that you are writing your feelings, as you feel them!

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    1. Jessie,
      I am hopeful that the addition of Imuran is going to head me in the direction of less days like yesterday. Plus I’ve just reached the 4 month mark of being on Plaquenil. I woke up feeling less sluggish today. I’m hoping that’s a sign I can get more done today. Thank you for the words of encouragement and I hope your day is as lovely as you are! 🙂

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      1. Haha you’re so sweet! Plaquenil is such a blessing for me and I hope you find the same thing! I have little trouble as long as I stay on it. I even progressed to a point where I was able to start matwork Stott Pilates and Vinyasa Yoga. Although when I went go off it I get nasty skin lesions, there are no side effects when I stay on it as you see ->(http://jessieefrost.wordpress.com/2012/11/06/relapse/) I don’t have any issues with this guy being long term, so I really hope something similar hapens to you! xx

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      2. So far I’m doing well with the Plaquenil. I have my first vision check in June. I have routine vision checks every few months anyways because of my other condition APS. Back in late August I threw a clot in my right eyes and have what is called a Branch Retinal Vein Occlusion and I have had several Transient clotting events in my eyes as well. It’s been terrifying. I started Plaquenil before I was diagnosed with Lupus as an additional treatment to my anticoagulant for APS. I have only had one other clotting event since starting it and I have no plans on stopping it unless I’m told I have to. How they figured an antimalarial drug was effective in treating Lupus beats me, but I am glad they figured it out! My Rheumatologist added Imuran an immunosuppressant 3 weeks ago because he felt that was our best chance at getting things under control. He mentioned a few other treatment options as well but that was the one he wanted to start with. I look forward to reading your post!

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  3. Hi Nicole. I relate to your story so much. I have been through so many days like this. And I did not like it either or want to accept it. It is hard to do. Give yourself a pat on the back for doing the washing! 🙂 I can tell you that things will definitely get better.

    You are on the right track by giving yourself down time. I usually rest for about 2 hours every afternoon and I miss this rest time if I don’t have it. I try and rest up for the busy days when I have more to do. You are doing really well.. Good on you! 🙂

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    1. Maria,
      Thank you for sharing. I will be the first to admit I do not always take the breaks I should everyday. That may be why my body issues the big stop signs every few days. Though it may also be how my lupus is going to be for me for a while. I’m hopeful today I’ll get a few more things done than yesterday, I’m feeling a little better than I did yesterday.
      I have a hard time accepting these moments. It highlights perfectly the moments of loss of control that my therapist was talking about during our first session. I don’t like not having a choice when to sit out and when to keep going. Thank you for the encouragement. I hope you have a lovely Sunday!
      Nicole

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      1. Nicole, I manage my arthritis day by day. Some days are better than others. It does not bother me too much anymore that I cannot always decide what I will do on a certain day. If I have a big day then I try to do less the next day.

        I had a lovely Sunday in the sun. Sending wishes for your life to get a little easier for you day by day. Just take it a step at a time. You are making good progress already! Maria

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      2. Glad things have gotten better for you as time went by. I am hopeful that as my treatments get in place I will too have more better days than down days. Sunday was a much better day than Saturday. We spent it at my husbands print shops. I helped out and then we did some stuff around the house when we were done there. I’m also learning how to rethink things. I think that alone will help me through a lot of what is going on. 🙂

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      3. You are so right, Nicole. It’s all about rethinking things. Sounds like you and your husband had a nice day on Sunday. Good to hear that. But it is good too that you speak of your difficulties.

        My mother suffered chronic pain all her life and was a great source of strength to me when I became ill. She always listened. Today I will go grocery shopping with my brother and we will have a barbeque at the beach. I am having a better day today than yesterday. 😊

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      4. Maria, It was lovely, and the weather was nice. I am hopeful the warmer temps will also prove to be nicer to me than the winter months were. They were very uncomfortable. Luckily between my husband and our roommate I have an amazing support team and they have gotten me through some really rough spots. We are a great team!
        I can imagine your mom has been great to have to talk to. It can do wonders to have someone that truly understands where you are coming from.
        Oh a barbeque at the beach! That sounds lovely, I hope it was fun!

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      5. We had a beautiful sunny day for the barbeque and I will be writing a post about it. Yes, I have had wonderful support as well from my parents and my brother and good friends who visit.

        I have a good arthritis doctor who answers the hard questions for me and has been a marvelous help to me over the years. 🙂

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      6. That is great. Glad you have a great doctor. I know having my medical team has helped me a lot. I am a firm believer that having doctors that work well for you is crucial to ensuring quality care and better treatments. If a doctor isn’t working for a patient then they do not deserve to be part of the person’s medical team. It took me a couple of tries to find the proper Hematologist. Switching PCPs also led me to better care even though that was a change that my insurance company triggered, it really turned out to be a blessing in disguise. I could not ask for a better PCP!
        My biggest supports are my husband and my best friend/roommate. They take good care of me and get me through the rough days and keep me going. I know in time I’ll be back to where we can enjoy life more. I look forward to that!

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  4. Yep, My body and my plans are rarely in agreement about anything. 90% of the time my body wins out in the arguement. Well, really 100% because if I ignore my body and push ahead I will pay….big time.

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    1. Yep. Relinquishing that control frustrates me. It’s not just a matter of oh I will catch up on sleep later. Oh no it’s much more that that. Even today I’m taking extra rest breaks because I don’t want to over do it with how I was feeling yesterday. I hope you have a lovely Sunday!

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