MPN shadows and the battle for sanity.
– Jeremy Smith
At our Facebook MPN Forum site we cover many topics. From treatments and lab reports to what’s going on in our lives. Seldom do we delve in to the subject of depression, yet many MPN Patients suffer from it. I understand this is a delicate subject and not everyone feels comfortable sharing the pain they feel from the mental burden of being diagnosed with an MPN. However with the recent passing of Robin Williams we are reminded of how the mental demons of life can dominate a persons mind and we should be talking more about depression. We also know there can be a sense of loneliness associated with our diseases. In the most severe cases depression and despair so overwhelms a person they choose death over life.
This overwhelming sense of loneliness can create an unhealthy environment within our minds as well. Often dragging a person in to a state of mind where we have deeply dark discussions with ourselves, and no outlet to share these thoughts with. While our wives, husbands and friends can provide a great deal of support they do not feel our pain the way we do. We often feel it’s a burden to share our deepest feelings with others. Instead we keep these thoughts inside of us, which build up over time and become a kindle to pushing us further down the path to depression.
All of us know the painful shock to our mental reality when a Doctor explains to we have been diagnosed with an incurable blood cancer. Your once normal life has been taken from you. The feelings of being overwhelmed by the threat of your life ending more abruptly than you had ever imagined is staggering. Losing the normal life you once had is devastating. Its can be incredibly difficult to recover from all of this without outside mental health assistance.
Then there the constant Doctors appointments and lab reports, the regiment of pharmaceutical options and in some cases a series of on going phlebotomies, all of which can be emotionally and physically exhausting. If you have PV you begin to worry about transitioning to MF. If you have MF you worry death is much closer to your front door. No matter how strong a person you are this can be extremely devastating to your psyche easily leading you to a state of depression along with anxiety and panic attacks. You can also feel as if the walls are closing in around you and this fear can create additional problems for you.
There might be times when you look over at your family as they are going through daily life and the voice in your mind chimes in with a chorus of negativity. “I won’t be around to see my six year old daughter graduate from high school. Who will kiss my son goodnight?” If you are a single parent the voice might say. “Who would ever want to fall in love with me with my MPN?” There are of course many other stories we create in our minds when we are up there all alone thinking to ourselves and most of them are not healthy for us.
MPN’s like Cancer and other disease can represent a huge weight of stress and anxiety, on top of that the daily struggle just to manage our everyday lives can be stressful. No person can handle all of these events and thoughts by themselves. Mental Health is just as important as MPN Health yet we hardly acknowledge this let alone discuss it.
I know for me when I am up in my head it’s not the best place to be. My wife gets upset with me when she catches me up there. There have been times she looks over at me and says. “Mr. Mitty anyone home today?” I am up in that head of mine again and she has caught me there. I have not heard a word she just said. I know we are supposed to be on our way out the door to meet friends for lunch. I should be focused on getting ready mentally to be out the door but I am not. Instead I have drifted back in to my own World and the topic of discussion in my head is my MPN. “Why did this frikin-dreaded disease happen to me? What did I do deserve this disease?” Like most people I know life is not fair but I can get angry sometimes. It is unfair no doubt about it but it will not change the hard cold facts I have an MPN.
Clearly I am not paying attention to what my wife was saying. I understand my wife wants to hear the truth. However should I tell her right now at this moment what I am thinking? I choose not to tell her and instead tell her I was thinking about a project at work. This of course does not go over well and like the puppy caught peeing on the carpet. I tuck my tail between my legs and listen to her go on about my being up in my again and how I Walter Mitty it too often.
Unless you’re an MPN patient it’s difficult for those around you to truly understand how you feel. I remember my father trying to console me when I was first diagnosed. He tried hard to understand how I felt but he could not. Six years later when he was diagnosed with incurable Cancer he finally understood what I was going through and we could talk about how we both felt.
Our head is a place many of us go because it’s where the dark secrets reside and we do not want to share these thoughts with our significant others, family or friends because of how it might make them feel. Of course we do not want to burden anyone with our darkest pain either. Neither of my brother’s who I am so close with wants to talk about my medical situation. They just cannot handle the truth. Their older brother is dying and they are helpless to change this.
See a mental therapist has a very positive impact on my life. Over time it’s helped me to accept my fate and discuss and understand my darker thoughts. Understanding why we feel the way we do is an important step in feeling more normal again and releasing the stress and anxiety that can permeate our lives at times. It’s an on going battle to keep my head on straight however the mental work including meditation has helped me calm down and not over react to a bad BMB or a Doctor expressing some concern. Today I am able bounce back much more quickly now. I have new tools to deal with my on going MPN Life and I feel much more positive about my everyday life.
The mental anguish from our MPN’s can be more crippling than the disease at times and we have to speak up when we hit bottom, not keep it in. Otherwise over time our damaged psyche has the potential to slip in to a deeper depression. Some of us do not leave our homes due to this and others require medication to treat depression, and face constant battles with anxiety and panic attacks.
I like many of you get tired of talking with Doctors about my MPN and there are times I leave the MPN Facebook Forum not for the reasons I tell you but because it’s difficult to hear of friends passing from the same disease I have. We all want to find a way out of this mess but sometimes it just not possible. Sometimes we have to accept what is most true. That at some point we will all die and if it’s not from an MPN it will of course be something else.
According to the American Cancer Society “it’s normal to grieve over the changes that cancer brings to a person’s life. The future, which may have seemed so sure before, now becomes uncertain. Some dreams and plans may be lost forever. But if a person has been sad for a long time or is having trouble carrying out day-to-day activities, that person may have clinical depression. In fact, up to 1 in 4 people with cancer have clinical depression.”
“While it is not abnormal to feel low or depressed from time to time following the diagnosis of a blood cancer, it becomes a “clinical depression” or “major depressive episode” when the symptoms are stronger than normal or persist for too long.”
Clinical depression is diagnosed when it lasts for more than a few weeks and when it has a severe impact on your life. It requires treatment when you have experienced at least five of the following symptoms for more than two weeks:
A sad, low or depressed mood for most of the day almost every day.
Changes to eating habits, weight or eating too much or losing interest in food.
Losing interest or enjoyment of activities that used to bring you happiness.
Change in your sleep patterns, either sleeping too much or too little.
Feeling helpless, worthless, or guilty
Thinking excessively about death or considering suicide
Difficulty focusing on tasks or making decisions
Severe mood swings
Diagnosing depression in people with leukemia, lymphoma or myeloma can be difficult because many of the physical symptoms listed above can be attributed to their cancer.”
Let us not forget that some of our medications can also play a role in depression. Which is why it’s so important to track any symptoms prior to taking a medication to make sure your depression is not from the medication, but could be from another source?
There are of course MPN support groups to help you through your depression buts support groups are not a treatment for depression or substitute for a professional health care professional. Should you get depressed seeking help immediately is important for a quick recovery. Starting early affords you the time to find the right person for you. No one should feel embarrassed about seeking the care of a psychiatrist or psychologist to help you with your mental health.
September represents twenty-five years of survival with my MPN and me. It’s a long time to survive with an MPN but I would give anything to make it go away and yet it will not. This is the reality of an MPN.
I like many of you I will always have a battle going on inside of my mind between the positive and negative thoughts. It’s important to always take the time to remember the good things in your life because we often take the good things for granted. When the negative thoughts come it important to focus on whether or not they are truthful instead of automatically accepting them as truths. When I notice the balance between positive thoughts and negative thought shifting too much to the negative I place a call to my mental therapist and go in for a quick mental tune up. The mental therapy has allowed me to win my battle for mental sanity in the up and down crazy World of MPN’s. I hope this discussion in some way helps all of you have a better day.
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