Time Changes Prespective

It’s amazing how much time can change things. The leaves on the trees are dark green again. A few of them are starting to turn brown at the edges. The grass is darker green this time of year. The birds are busily gathering seeds and eating out of the feeders I have out for them. It’s hot, the kind of heat that makes you sweat just sitting still. It’s August, in North Carolina. This is our hottest part of our summers August and September. A few more weeks and Autumn will be here.

It’s a time of reflection for me, I’m noticing things this time of the year, that I simply didn’t have the mental capacity to do so last year. It’s nice, but at the same time it makes me sad that I missed out on it last go round. It’s not something I’m going to dwell on, but it is part of the grieving process. I’ve been down this last week. Mainly because I’m teetering on yet another flare, and it couldn’t come at a worse time, well I’m sure it could, but seriously the timing for this one is bad. Saturday is our wedding anniversary. We have plans and I don’t want to be the reason they are put off, or that we have to change them. My INR has been low for two readings in a row and I’m due back Friday for another check. So as I sit here and watch the little grey Titmouse ferry seeds from the feeder to a tree branch nearby to eat later, I’m taken back to last year.

It’s hard not to think back to the earlier days of my illness. It’s hard not to get lost in the fear, the unknown, and before I know it, I’m crying again. Before I know it, I’m a raw ball of emotions. That’s one of the things I find a lot of people do not talk about when it comes to Chronic Illnesses, the emotional toll it takes.

I learned a lot this past year. I learned a lot about the health care system, insurance companies, and pharmaceutical companies. Most of all, I learned a lot about myself and my emotions. In the earlier days, it was pure fear. Now I deal with a lot of anxiety and depression that is left over from the initial fears.

I do not deal well with the unknown. Put me in completely uncharted waters, and I freak out pretty bad. If this makes me a bit of a control freak, so be it. I like to have a little control in my life. This whole being diagnosed with two chronic illnesses thing, has left me feeling powerless, helpless, and at times out of control of my own being.

I did not become an adult that knows how to ask for emotional support. So if I call you and just break down crying, or I start blubbering, or talking really fast, that is my attempt at saying, Please I need you right now. Or if you look over, and I’m just crying silently in the car, it’s because I feel safe being with you. I’m much better at being there for people, than being the person that needs someone. This even affects my relationship with my healthcare providers. I often catch myself feeling guilty over needing to see them so often, or having to call them to ask them questions. Or heaven forbid they need to step in for an impromptu appointment, or call one of my other doctors for a consult, my guilt factor goes through the roof then. I’m constantly having to remind myself that it’s their job, and that I need to let them, do their job. I really suck at being this ‘sick’ person.

I never realized it was possible to grieve for yourself, until I started the process of well self-grieving. It’s not like grieving a person that has passed away. It comes and goes. It hits at the most random moments, and sometimes it’s more paralyzing than anything I’ve ever experienced. Some days I’m okay with this new life I have no choice but to live. Other days, like this past week when I’m having the extra doctor appointments due to my INR being too low and being on flare alert, I’m reminded that my life is never going to be normal again. It’s almost like leading two lives at times. There’s still enough of the old me left that at times things are still the same. Then there are weeks like these where I can’t help but face the music. There’s no timeline on how long a person grieves themselves when they become ill. There’s no one telling me how long it will take before the heartbreak of these weeks to wear off. I just have to keep moving through them. So that’s what I do. Because I know now, that these weeks do end. The good weeks do come. Yes, unfortunately there are more bad weeks ahead, but I can’t focus on those. It is my choice what to do with my energy and I choose to focus on the good weeks.

So While I’m sitting, taking a moment to watch the birds busily go about their day around me and remembering, I’m also reminding myself to look forward. Always find a way to look forward.

 

 

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9 thoughts on “Time Changes Prespective

  1. I went through that grieving process over and over the first three maybe four years of my diagnosis. I backed away. I wouldn’t read or participate in anything lupus. I had a blog like yours clocking my life and what I was going through. I stopped writing and went back to writing my poems and short stories. Nothing lupus. I decided to live in spite of lupus. I’m battling horrible fatigue right now and my back is really in constant pain. I had to stop walking despite how much I like it. I still get depressed but I talk myself out of it. I started going to a lupus support groups at the S.L.E Foundation. It’s been good to talk to people who understand the many things we go through. I hope you get to enjoy your anniversary. Hugs my lupie sister.

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    1. It does appear there are some common stages in the process that we all go through after being handed a diagnosis. Or at least similar steps. I know a lot of people go through a denial stage, I never hit denial. I went through a ‘holy crap I’m dying, please someone fix it.’ stage at the beginning when I was pretty sure there was something killing me, and well truth is at the time, I was throwing multiple micro clots. So essentially, it could have killed me if it had gone untreated much longer. Then I just went into survival mode and here we are a year later and I’m looking back going in awe that a year has passed since it all began. A few of my loved ones went through a form of denial for me though. That was really strange to watch.
      The fatigue is one of the things I despise the most about Lupus. Somedays it’s all I can do to drag myself through the day. It’s really hard to explain it to someone that hasn’t experienced that level of fatigue before. This past week or so I’ve felt like I was moving through muck.
      I haven’t made it to a support group in person yet, I intend to do so though. I have joined several Lupus and APS support groups on Facebook though and they have connected me with others that are going through similar things and it has been a great experience to talk to them.
      Hugs to you too!

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  2. I recognize myself in your words. Nicole, I’ve come to realize I don’t have any control. I found that my relationship with God has been strengthened, and I’m believing that regardless of what happens, he has me in the palm of his hand. It is contrary to the human to surrender, with our free will giving us the sense of control. It takes practice to learn to relax in the midst of chaos, but it can be done. It means less stress on my body. I’m praying for you. I’m so happy you have your blog. I hope it puts you in contact with others who suffer with life-long auto-immune diseases. Human support is important too.

    Liked by 1 person

    1. Meredith,
      Thank you. I too have learned that leaning on my spirituality. My blog has helped me in a lot of ways and I have met some awesome people because of it. Some with AI conditions and some warm, loving beautiful people who offer support who are just understanding people. Blogging has been a wonderful outlet and it is something I recommend to a lot of people when I talk to them about how to find peace with various things.

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  3. Nicole, this post came at a perfect time. Bless your heart–sending you ENORMOUS hugs, loving prayers and good juju. I, too, am mourning, reliving a year ago, with sadness and anxiety for the future. I’ve missed out on so many things, but life goes on. So I join in spirit, trying to make something happen quietly at home to help “celebrate.” I super hope this doesn’t happen on Saturday, but maybe come up with a possible alternate plan with a rain-check for the plans you already have, if possible?

    My 5th specialist suggested I get psychiatric assistance, including an anti-anxiety med. !!!!Doesn’t she know me by now that I DO NOT like to take anything? A retired psychologist friend suggested that I find a counselor who specializes in cognitive behavior therapy–rewiring our responses so we learn to cope better. In the process of finding someone to fill that need in me since, as my friend said, I’ll be able to use this skill the rest of my life whenever I hit an anxiety filled time. Maybe helpful for you too?

    The same dr. also prescribed Plaquenil for my urticaria (uncontrollable hives) since the mouse hormone shots, aka Xolair, weren’t doing a complete job. When she said it’s usually used for lupus, I thought of you and another friend who also has it. I laughed when dr. said it’s also useful if I go somewhere that Malaria is a problem. Then I got really somber when I realized what I was doing. I bet the dr. gets mighty frustrated with my unwillingness to possibly endanger myself to get better results!! I was originally excited to hear that one of the “side effects” was weight loss. Then I found it it’s weight loss via diarrhea. yeah. no. I took it for three days, and decided not to go that route, even though it might be the magic elixir. We added some other meds (Singulair, Claritin, Zantac) which apparently work together to nix the hives, along with the Xolair. We’ll see.

    I’m so sorry you’re going through this. And so glad you wrote this post. xoxo
    Nance

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    1. Nance,
      I wish I could hug you right now! I’ll write a post soon with a more formal explanation as to what happened today, but I ended up back at Dr. C’s a day early to get my INR checked and it was back in range!!! It was at the high end of my range, but it was in range! He gave me the go ahead to go on my trip this weekend, with a few limitations and things to watch out for. So as long as a few things do not happen I’m cleared to enjoy my anniversary the way we want to!

      As for Plaquenil, I had gastro related issues for the first couple of weeks I was on it, but after my stomach adjusted to it, it has been an easy drug to take. I also found taking it with breakfast also helped with the issues I was having. It has caused me very few side effects, especially compared to some of my other medications.

      I see a therapist every 2 weeks, she has been an amazing help for my anxiety and depression. I dislike taking medicine, always have and prior to getting diagnosed with these two condition was more inclined to treat my aliments with natural/holistic cures. That all went out the window when the scary stuff happened last July-November. I made the choice to be placed on an antidepressant almost a year ago. First it was a combo of Citalopram and Trazadone. I made this decision because I could not cope with what was going on, and had not slept in over 2 weeks. I was having massive panic attacks. It became apparent very quickly this combo was not working, and was actually making things worse, so my doctor at the time switched me to Mirtazapine which I have been on since. I will soon start the process of seeing if I can work my self off of it (with close communication with Dr. C of course). In fact he told me today if I thought I was ready I could cut my dose in half and see where I was in tolerating that. I may give that a try sometime soon, we will see.

      AL, my therapist, has me working with CBT! It has done wonders for me. I have a book and she recently recommended an app and I’ve been using both and I’m always amazed at how well they help me process and work through panic attack, and such.

      You are in my heart and mind, and I will send you positive energy too. Reliving and trying to move forward at the same time is a strange game of tug-o-war.

      I’m glad my post was of some help for you. It helped me to get these words out, they had been rolling around in my head for a few days so I felt compelled to get them out.

      big hugs and much love,
      Nicole

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      1. SOOOO happy that you’re back in range! Fabulous news–enjoy your trip!!! btw, What’s the name of the book and app?? (you can email if’n you prefer.)

        I can’t tell you how glad this news makes me feel!! Yay you! 🙂

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      2. Nance,

        The name of the book is Feeling Good, the new mood therapy by David D Burns M.D. I bought my copy through amazon and it has been a big help with retraining my thought processes.

        The app that I’m using is on my Samsung Tablet. It’s not available for apple products yet. If you have a samsung, type in CBT. It’s called Cognitive Diary CBT Self-Help and it’s by Excel At Life. It will be the little brown/red diary looking icon and should be one of the first ones in the search.

        Liked by 1 person

      3. Amazing!! My dr. gave me the same book title! It IS an awesome guide. Nope–no Apple, no Samsung, but I can look now that I have the info. Thanks!! Hope your anniv. weekend was FAB!

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