9 Responses to “Learning to live with “infinite losses” in chronic illness”

  1. Jenn March 24, 2017 at 7:02 pm #

    This article was very moving for me. It hit home in many ways, particularly the list of losses. I was diagnosed with congestive heart failure and mitral valve prolapse in 1998. I had thought my profound fatigue was due to my Chronic Fatigue Syndrome, Fybromyalgia, and very physically, emotionally and intellectually challenging less-than-full-time job.

    Although I didn’t have a name for it, I was familiar with infinite losses. Now my career was over. My income was gone. My usual social contacts were gone. Before long my ability to navigate my house was gone. I had already lowered my expectations repeatedly. My cardiac diagnoses were shocking to me.
    My first open heart surgery was in 2000. The second was in 2011. There’s no “fix”, no guarantee that this or that will enable me to halt the lowering of my expectations. My cardiac surgeon cannot tell me whether or not I will need surgery again someday. My latest additional diagnosis, in December, was Prinzmetal angina, but I’m not responding as expected to the med, so it may be cardiac microvascular disease so another med has been added to the 30-something I take every day. And I have to have my nitro spray with me at all times. And wear my compression hose.

    I didn’t mean to write a “poor me” piece, Carolyn, but your post hit me where I live. Feelings I don’t usually acknowledge came flooding to the surface. There are lots of people who have complex medical conditions. Maybe someone will read this and feel less alone.

    Liked by 1 person

    • Carolyn Thomas March 24, 2017 at 7:16 pm #

      Hello Jenn – thanks for sharing your unique story here. You’re so right – we are definitely not alone. No matter how many diagnoses people live with, we can often find others who have walked in our shoes (or hospital booties). That awareness doesn’t help ease symptoms, but it’s oddly comforting to feel less alone. Good luck with your new meds to address your cardiac symptoms. PS I too carry my nitro spray with me at all times – would never leave home without it!

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  2. Kit Filan March 19, 2017 at 7:25 am #

    Loved this column Carolyn. So often the emotional impact of a chronic illness gets overlooked while we focus on the obvious physical symptoms.

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    • Carolyn Thomas March 19, 2017 at 8:19 am #

      Very true, Kit. Yet there’s a profoundly obvious mind-body connection that, as you say, is often overlooked for so many reasons.

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  3. Alicia Butcher Ehrhardt March 19, 2017 at 7:01 am #

    A perspective from a recent discharge, Feb. 21: the discharge group of people I saw asked the questions about physical things, such as medicines and the home situation. But not one person – then or during the hospital stay or after at the cardiologist’s – has ever addressed the psychological component, warned about depression, said what to do with side effects, mentioned to possibility of traumatic stress from the experience.

    At the hospital where I was admitted twice during the two-week period it took them to figure out I needed three stents, there was no counseling, comfort, visit from a chaplain offered – nothing.

    So I can’t say that this aspect was dealt with at all.

    It is good to ask if someone will bring you food, but maybe they hope the other, fuzzy psychological side will take care of itself? With (I read somewhere recently) a 60% depression rate, you’d think they might mention it just so you know what it is and what to do. It hits like a second bolt from the blue.

    I removed the hospital names from this comment, but it was in NJ/PA – names available if you think it helpful.

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  4. Lisa Blackert March 19, 2017 at 6:03 am #

    I will tell you of infinite losses. I had a massive MI in October. I have 40% blockage in other artery; dr is trying meds.

    Worse thing ever in December, my oldest son died from suicide, he was my heart. My mother died 8 days later, we were so close she was my good friend and confidante. Nine days later my 17 year old poodle died, she was my sweet little baby.

    I also have MS, been waiting for disability because I can no longer work. I’m a nurse. I don’t know if I’ll ever be able to do anything.
    The fatigue from coronary artery disease is terrible. Can anyone help me???

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    • Carolyn Thomas March 19, 2017 at 6:23 am #

      Oh Lisa. There are no words to describe all the dreadful events you have experienced, and in such a short period of time. I am so sorry for these tragic losses, piled one on top of the other – what we used to call when I worked in hospice palliative care “complicated grief”. Grief in itself can cause crushing fatigue – even without any heart or other medical issues. The only possible way to get through this is one day at a time, one hour at a time. You are still in early days yet, and time really is the healer here. I hope you are seeing a professional counselor to help you. If not, please reach out to a counselor, therapist, social worker, pastor – or ask your physician for a referral. Here’s some information about complicated grief that may help a bit (see page 5 for “Multiple Losses”).

      As this post says, when these losses happen, “there’s no going back to the past, and the future can seem uncertain”. Best of luck to you as you take each small step…

      Like

    • Betty Holden March 19, 2017 at 8:23 am #

      Lisa, I am deeply saddened to read this and wish I knew you personally to give you a loving hug of support. I can only share how I have dealt with multiple losses, and vast health problems. I worked in the medical field for over 30 years, and wanted to still be of value, but I cannot work due to a brain-stem aneurysm bleed, 2 strokes, heart problems LVH untreated because the cardio dr said I had too many problems! – and an autoimmune blood antibody issue that keeps me living pretty isolated. I cannot fight infection.

      I am a Christian, and my main support is the Lord Himself. I have a very hard time not being able to be with people as I had always worked with people in the church too, counseling, and was a lay pastor. It was devastating when this all happened to me. I lost many family members too, and yes even my beloved tiny hairless dog Miss Miracle last Jan. to devastating cancer.

      The way I coped, and still cope, is that I used my medical background to help others online, on prayer lines, and to encourage people. Many times people need medical help, and cannot afford it. I was used to saving lives more than one time-one girl had gotten home from a surgery and her tongue was swelling from anaphylactic drug reaction – I told her to go to the ER NOW…it saved her life.

      In time, you may want to help others that way, even if it is just one a day. YOU ARE NEEDED. The secret is to find your “new normal.” I am on an international prayer line that has supported me for over 14 years, and I give back to them, of the spiritual and medical experience I learned. I also have a type of chihuahua sanctuary here for elderly dogs. Your medical background could benefit the dogs or pets you choose to help. They give me a DAILY reason to get up, and have a routine. I do not think I would have survived without them. They do not know I am limited! It is wonderful to have their love and dependence on my “mothering” skills. If you do not have a pet, please consider one. I use a mobile vet, and she too is a great friend to me. Your grief process will be difficult for you for a while, but you will survive, and the gift of all of this loss is that now you will know HOW to comfort people who have gone through exactly what you have.
      God will send them to you. I gained more genuine relationships than I ever had when I was well. So take heart, my friend, there are other days up ahead that will hold some joy and less pain. Stay in touch – we care about you.

      Like

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