where do i go from here??

I am not a depressed kind of person…never have been. Even when life was at its worst, I still made my way into the world each day and found meaning and happiness among people. There was only one occasion which changed this-morning sickness. I tolerated morning sickness for four full pregnancies and one that ended at sixteen weeks. For the pregnancies I was sick the entire time and still worked as an anesthesiologist. Working made the time pass faster, as I was sick 24/7, even while sleeping. It was truly miserable and during the last pregnancy, I actually asked for an antidepressant because I was so sick I just wanted life to end. I was prescribed something but then never took it for fear of harming the fetus! With each pregnancy, delivery immediately sailed me into immense happiness and tremendous energy. I resumed everything from running up and down stairs to running outside to running my home and running to work. Postpartum depression? What in the world was that?!

With the onset of Sarcoidosis, and then a few months later cancer, however, I did become more profoundly depressed. I found myself questioning the point of everything because the cancer surgery affected my quality of life and happened so suddenly. Then I learned that Sarcoidosis in the brain (Neurosarcoidosis) does cause depression. This was the first time that I truly understood how debilitating depression can be. Fortunately, I required a drug for neuropathy which also helped ease the depression, and I was quickly transformed into my old happy self. I completed home projects and engaged in blogging and in managing my new store and was quite satisfied for the past year. The projects took my mind off of things and prevented me from thinking too much. In addition, there was always something to look forward to medicinally, such as being approved by the insurance company for a new infusion. In the back of my mind I was always sure that the next medicine would be the one that worked.

Recently, however, I was taken off of the major infusions that I’d been receiving, as they did not seem to be working. My neurologist also thought that it was time for a referral to family counseling as a way to help us cope with my now officially chronic illness. This kind of shocked me as I wasn’t sure what the point of talking to someone would be, especially for a bunch of teenagers who hate to go anywhere with their parents, much less to a counselor. But I felt that it was incumbent on me to try the recommendations of the doctors that I love and trust, and so I started counseling.

We have not yet included family members, as apparently I have enough to talk about myself for now. I am finding that feelings are being brought to the surface which may be a good thing…I don’t know.

But what I’m really bothered about is the fact that when one is told that things don’t look good, yet they cannot be given a time frame or an idea of what to expect as far as further deterioration, how can they continue to live? I mean, if I were told that I have 3 months left, well ok, I could deal with that and structure the rest of my time with meaningful things.

The only barometer that I have right now, with this strange disease that affects everyone differently, that doctors do not fully understand, that enough research has not been conducted, is a comparison of where I am now to where I was last year, and a few years before that.

Only then do I see the insidious deterioration that has taken place. What started as shortness of breath and a declining ability to run has now transformed me into a person on disability who is for the most part sedentary most of the day. The fatigue has become disabling, the pain more frequent (and unchanged if not worse), and most of the quality of life issues are still there and slowly worsening.

So now I don’t really look forward to doing projects. For one, I cannot tolerate the physical part of painting a wall or even just organizing myself to complete a project like that (something that once came so naturally and that I could easily finish in a day).  I don’t look forward to remodeling or refinishing or designing anymore, so what’s the point?

What is the point of new clothes, even, something that used to make me feel so good? What’s the point of doing anything to better what we already have? I am cooking and cleaning as I am able during the hours that I have more energy, but it’s for everyone else, certainly not for me. Because, sadly, this illness has already ended my “life.” That is, my meaningful life. Is this how old people feel when they retire or finally move into assisted living?

So what IS the point and where do I go from here? And what if I still have a long time to go in a perpetually deteriorating state? Don’t get me wrong, I am still functioning well enough to enjoy the antics of my kids and dogs and I do enjoy my friends when I’m able, but seriously, what is the long term point?

I guess I know what I’ll be discussing next with the counselor…

M

 

 

10 thoughts on “where do i go from here??

  1. Good morning, I wanted to ‘reach out’ to you as I have been where you are many times over. I am so sorry you are having to deal with this too. One thing I found is that I focus on doing the things I can. Not the things I can’t. I am also re inventing ‘me’ and re-fueling daily by getting outside and sometimes just being. I think back on all the things I have done this far and am so thankful that I lived fully when I could. And, now doing as much as I can for as long as I can with my focus on my family and close friends. They try to ‘get it’…what I am going through but unless people live it, they just can’t truly understand. My life is still beautiful and full of fun and happy times although it doesn’t look at all the way I imagined it would be but that is where the re-inventing comes in. Doctors told me years ago that I would be in a wheelchair before I was fifty. Being the rebel that I am,:-) , I had to prove them wrong. Stay strong! Even when it feels the hardest. Reach out to others like you are doing, counseling helps but so does making sure your family understands that life has changed and you all must change to keep it happy and full. Create the fun times and then rest up once they are done and when you are ready…create some more. It’s all about pacing now I think. Do an occasional lunch with a friend or family member. Good luck with it all. Even though most of what I deal with has been most of my life…I still feel blindsided and cheated sometimes and then, I remember, there are so many others that have it even harder. I hope your day takes a turn upwards and that others show you how very much you are valued in their lives. Hugs!

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    1. Thank you Diane! Your warm words are so thoughtful. It’s just that I was so active outdoors with my kids. I was the fun planner in the house. Now I’m just blah so we do nothing. By the time I feel ready to tackle anything the day is practically over-I make dinner, tv date w husband and go to bed. I’m just not interested in my old life preoccupations but everyone else still is. But maybe you’re right that they really have to recreate their world too. Whenever they’re all home I just try to pretend I’m my old self for their sake which leaves me feeling miserable because I so need ME time right now. Thank you ☺️

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      1. Yes! I went through that too! Just be you…the YOU that you are now but also your true self. And, take care of YOU especially emotionally. That’s where I have my biggest struggle. I have also found that while spontaneous activities are still great…it’s the ones I plan for that are the remarkable and wonderful ones. We were always very active outdoors too. And, I also did all the planning.
        I found it was good for the kids to see that I needed time for me😊after all, they, including my hubby take time for themselves and don’t even think about it😄
        Something else I wanted you to know…i have found it does hurt a lot emotionally that the lives we once had are now so very different. Sometimes, it will bring me to tears but a good cry is always a good thing if you then pick up the pieces and start living and building your life again😊
        When all the things you have lost, your livelihood, your activity level, your love of life, and your time with your kids and hubby surface and hit you all at once like a ‘slap in the face’ and it tears you down emotionally…that’s the time to get out of your house if possible and treat yourself to something…a cup
        of coffee, a mani or pedi if you can handle them etc but most of all just start making a plan for another day…something fun, something exciting for all of you. I find that it gives me the hope I need to get me through. Remember, just do the things you can and that will be enough💕. 💚☀️💚

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      2. I think you might be the first person to know where I’m coming from. Yes my kids and hubby take great care of themselves and I take care of them too, never having time to do my nails properly at best! And, yes, I’ve lost all those things, am only 52, wondering how I’m going to live in a deteriorating state potentially another decade?? I’m wandering lost, am too strong to cry, but kind of feel the tears back there somewhere just waiting. I’m glad I have a counselor because I sure didn’t think I needed one! Women are so strong-we just keep living for every else!! Maybe that’s the problem. I fantasize about living alone isolated where I can wake up whenever and spend my time outdoors without pressure. But it’s true about planning -those are the best times. Just worry that I’ll be too fatigued to even go.

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  2. Ah yes, haha, on the nail thing. A couple months back, for the first time ever since having children, i was able to give myself a nice manicure…well, really, just paint my nails without someone needing something. And, they lasted for over a week. I was really proud of myself:-) I know what you mean about the deteriorating part. I am five years old than you. But, those of us in the chronic illness community try to only take a few days to a few months at a time to think about and live more in the moments. It helps with the coping part. I also am notorious for taking care of others…especially my grown children more than i take care of myself…crazy but true. I also do that with my hubby too. About the waking up whenever you want part, don’t wait! Give yourself the gift of doing just that when you are able to. Our bodies need the rest. Sometimes the only thing that saves me IS getting outdoors and just sitting there and soaking up the sun.

    You know, I thought I was too strong to cry too and then I realized I wasn’t allowing myself to grieve…yes, grieve because that’s what I had to do. I had to grieve and ‘let go’ of all that I thought the rest of my life was going to be and learn to cope with all that it was going to be and make the most of it.
    My email address is dnhess2246@gmail.com if you ever want to connect.
    Oh, and about the planning and then being able to do…if I want something to happen…all the prep has to happen ahead of time and then I have to have some down time before the actual activity or event and its with all that, that I get through it, enjoy the moments, and then spend the next day or two recovering. It works for me and then I still feel as if I am able to participate in life.
    I hope you have a date today with some outdoor and sunshine experience:-)

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  3. You are not alone! I know how you feel!
    You are smart and brave women and you’ll find a way.
    Once upon a time, there was a woman, Nana, me myself and I, who had everything.
    Now im looking for life in this hellish desease.
    I believe we can make it!
    Hugs💙

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  4. Listen to Diane , she is such an inspiration! I get depressed when I see my family off running living their life and I feel like I’m on the sideline. What gets me is that I have realized now that my kids are adults I’m no longer needed in the way I use to be . Which I think is what kept me going and not thinking of how I felt . But now I feel what my disability is and I have or should say still learning to except that I can’t do what I use to and that’s okay I ll do what I can . And not feel guilty . Guilt is my big problem. I live such a different routine now and it’s my routine . And I’ve had to say it’s okay and get my family on board with it. It’s hard to explain . This probably sounds all over the place. Diane is right , think of what you can do what you can enjoy . Have a set movie night with your family or just your hubby . If you have more energy during the evening go out to eat once a week don’t cook. Sit in the sun with your favorite beverage. When I’m having a bad sad day and I want to stomp I can’t I’ll hurt after I turn up a favorite song and sing as loud as possible to it . Even if it’s 5 times lol . Oh believe me if I could run I would but I can’t .I don’t focus on it I find something else to do . It’s all about what works for YOU . So don’t be hard on yourself . It’s okay to feel weak at times but don’t stay their too long . Hugs I wished I had seen your post earlier . I don’t see everyone’s posts all the time but I’m always thinking of you as we all are on here.❤️

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