Tag Archives: chronic illness

Changing the Landscape of Normal

20 Monday Aug 2018

Posted by in bipolar, caregivers, mental illness, relationships, schizophrenia, stigma, Uncategorized

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Most marriages start from a position of equality. Both partners are expected to “pull their weight” and contribute equally to the relationship. I can’t think of anyone who wants to build a partnership of lopsided responsibilities. Over time, with illness and age, a vast discrepancy between one person’s contribution and the others can develop, though, and the reality of one person taking on more in the relationship than the other is likely the longer the two are together.
That’s the norm. That’s the expectation. We start out young, healthy and happy and we grow old, or sick together, the stronger caring for the weaker depending upon what ails us.
My marriage never started this way from the beginning though, and with one in four American suffering from a mental illness and half of Americans suffering from a chronic disease, the landscape of what is normal, or expected is changing.
In my house, we concern ourselves every day with medication times and the amount of food eaten with each dose. We live around these details. We go to the doctor every few months for blood draws and check-ups and visit the pharmacy to refill medications once a month. Those are the most visible signs of illness in our house, but they are not the most difficult, or challenging.
It is the panic attacks that can derail brunch with friends, or cause a cancellation of a six-month planned vacation that is harder to live with than the daily maintenance. The most terrifying and difficult thing though is the possibility of a break from reality. There are no classes or preparation for a spouse that has an episode of psychosis that can be brought on by trauma, addiction, bipolar disorder, or in my case, schizophrenia.
My husband would be more than uncomfortable with the label of caretaker. That title just doesn’t suit him when it comes to our relationship and the reality of us. My husband has the chronic illness sarcoidosis, and when he gets sick (which is frequently) I am the one who makes him honey and lemon tea, checks his temperature and calls the on-call nurse to see if we should go to the doctor, etc. I  am also the one who cheers him on when he gets a promotion or award at work. I am his biggest fan and the number one person who looks out for him.
My husband has a more significant role in the caretaking arena than I do, but the reality is we care for each other. His illness is more easily understood than mine, and the symptoms are more socially acceptable (he doesn’t hear voices, or believe he is talking to God). But if social media is an indicator on how far we have come to overcome stigmas and fixed notions of relationships that are a carryover from the past, then we have made progress. Not a single day goes by when I don’t read about someone struggling with anxiety, autism, mania, depression, or hallucinations on social media. There is some truth to the fact that otherwise private experiences are now put out in public for all to consume.
With so many Americans dealing with physical and mental health issues, the landscape of partnership, spouses, marriage is changing. What was once said by most couples getting married, a vow to care for each other in sickness and in health, is now more of the given than a promise we make to each other to be cashed in on at some distant point in the future.

I’m Not Sold on Your Miracle Cure

26 Monday Mar 2018

Posted by in caregivers, hope, mental illness, schizophrenia, Uncategorized

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I don’t know about other cultures, but Americans spend billions every year on the latest trends, fads and health and wellness products. When someone came out with the idea that coloring was good for stress and mindfulness, adult coloring books were everywhere. When someone discovered that weighted blankets could help with anxiety, weighted blankets were everywhere. There are also health and fitness trends that have to do with diet and exercise. Every six months it seems there is a new diet that comes out like Paleo or Whole30, and there is Crossfit, a variety of new types of yoga, and meditation, the list goes on and on.

I benefit from many products that fit into these categories. I have a weighted blanket that I love, and I use happiness journals and will start using a productivity journal later this week, and I used to do yoga (before my back issues), and years ago I tried meditation but couldn’t stop laughing.

I’m not knocking the benefit that many of these things bring to the lives of the people who buy them, practice them, etc. What irritates me about all these diets, trends, fads, programs, etc. is how people act when they are using them or on them. Almost everyone has heard jokes about ex-smokers and how after smoking for twenty years, or so they go to the opposite extreme and start preaching against smoking. The same can be, and often is, said about born-again Christians – once they convert to Christianity, all they can talk about is converting to Christianity.

I see the same behavior with the latest diet, exercise program or things like mindfulness. The people that “discover” them (even though so many of the things are “borrowed” from thousands of years of tradition in other cultures) think that everyone should do them, everyone will find enrichment, everyone will lose weight, everyone will be happier, healthier, etc.

It isn’t that I don’t believe many of these things are great, I do, but I don’t believe that I need to try every new diet, practice every kind of exercise, buy every new coloring book, or Tibetian singing bowl, etc. When do I get to say, “You know what? I’m doing pretty well. I can keep doing what I am doing and get off this treadmill of the greatest latest new thing.”

It is not easy to live with schizophrenia. It is not easy to live with any chronic illness whether it is mental or physical. So much stuff comes along with a chronic illness; one of the big things is side effects from medications. My medications give me high cholesterol, high blood sugar, high blood pressure, and a host of other things. Those are just the things I have to deal with because I take medication not the things I have to deal with for why I need medication in the first place.

Can I change my diet? Yes, I have, drastically, and that only helps so much. Can I exercise more? Yes, I can when my back isn’t too painful to do it. Can I meditate, do mindfulness exercises, practice yoga, do Crossfit, eat only protein, and give up sugar? No. The truth is I can’t do all of those things. I am in too much pain to practice yoga, I would never dare risk a back injury by doing Crossfit, but I guess I could give up sugar, but I don’t want to (not yet, anyway, I might have to).

By being a preacher of what has “changed” your life and made you a “believer” you might be forgetting that not everyone has the same challenges you do. Not everyone can change the exercise they do, and maybe they have already been a vegetarian most of their life. It is also possible that people will not see the same results as the next person doing the same thing.

Also, I want to say, “Is it enough already?” Do I have to give my life over to something and become a complete convert who also preaches to say I am happy with my health and wellness? I am never going to be 100%, and I can live with that. I ’m never going to be 100%, and it is not because I’m not trying this thing or that thing. I am never going to be 100% because I have a chronic illness, and no amount of meditating is going to cure me. I know that is hard for many people to believe. I know that many people think they have found the path, the one true source, the answer to whatever it is that ails people, but they haven’t. If I can live with the fact that I have schizophrenia, and that I will most likely always have schizophrenia (there is always hope that science will find a cure) then why can’t everyone else?

 

 

 

 

 

The Gift of Receiving

30 Saturday Dec 2017

Posted by in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, Uncategorized

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“These chocolates are so good. So good. Here, try one.” Every time I taste something good, whether it is salmon or a chocolate layered cake, I want my husband to try it. I want him to experience the same pleasure that I am. He will frequently say, “No thanks,” and I will say, “Please.” At that point, he usually gives in and tries what I am offering to him.

The scenario I just described is frequent in our house but is only one example of how I try to encourage my husband to experience things that I think he will enjoy. I often feel as if I take up too much space in our home, relationship and lives with my mental illness and my newly diagnosed health problems that require a strict diet.

Those of us who receive a lot of care from another person need to feel as if we can give something back. My husband falls into the category of a giver. Because he is a giver, his needs, wants, and desires are frequently at the back of the line. It gives me great pleasure to see my husband happy and to see him getting the things he wants.

The problem is, my husband will often turn down gifts and gestures of kindness. He will say, “No thank you.” I have told him over the years that if he is going to do so much for so many people he needs to allow others to give back to him. Most of us find a certain joy in giving to others and if my husband always gives but never receives people (me included) can feel left out of that joyous cycle.

I think caregivers in particular need to learn to accept from others, and particularly the people they are caring for. As I wrote earlier, I often feel like the focus or center of our lives revolves around me. Anything I can do to give back to my husband, to make him the focus once in a while pleases me, and it also helps alleviate the guilt of all the things we have to say no to because I am having symptoms.

I feel like there are so many disappointing times when my husband is looking forward to something and because of me, we will have to cancel at the last minute. If I can buy him things that he loves or would enjoy, have him try things, get him to spend time with his best friend, etc. then I feel like the scale is not so lopsided in my direction.

The old saying goes, “It is better to give than receive.” I think there is some truth to that statement, and for those of us who receive much, it is important that we can give and give generously in return.

 

 

Hope for the New Year

27 Wednesday Dec 2017

Posted by in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, Uncategorized

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My husband and I sit down every year before January, 1st and write down our resolutions for the following year.  On New Year’s Eve we look at the list, we wrote twelve months earlier. We are usually a little bummed out because there are only one or two things from our list that we managed to accomplish. The past two years, those accomplishments have been big things (like financial planning), but still, most of our list is left undone.

This year, we decided to do something a little differently and hopefully when we look at what we have written twelve months from now, we will be pleased instead of disappointed. This year, instead of a list we are going to write down our intentions, and choose a word for the year.

My word for the year is WORK, and my husband’s word for the year is INSPIRATION. What does work mean to me? I want to be stable enough and committed enough to commit wholeheartedly to writing. I have started a memoir with a writing mentor (she expects at least ten pages a week starting in the New Year). I would also like to keep up with this blog and sell a few essays every month. For me, that is a lot of writing and a lot of work, but I feel hopeful that I can achieve it. I am also working together with my husband on a project that is the basis for his word, and I can’t wait to share the details, but we need to have it partially completed before I do that. One hint, it also has to do with writing (so excited about this!)

Underneath our words, we wrote our intentions. We both included things like getting out more, socialize more, and watch less news. To my list, I added to be on social media less and to read more books and essays. Reading more is the only place I included details – I would like to read a chapter a day and an essay a day (excluding blogs – I will read as many of those as I have time for).

2017 was a tough year for so many reasons. One of which was that my husband and I had almost continuous health problems throughout the year, add that on top of schizophrenia and my husband’s chronic illness and we were feeling miserable, worried, and down most of the year. When you throw in the daily news of disasters, terrorism, healthcare, etc.  Oh, boy! It is surprising that we were able to manage a low-grade depression and not a full on can’t-get-out-of-bed depression. When people say, your health is the most valuable thing (including mental health) they aren’t kidding. If you don’t have your health, it is difficult to get anything else accomplished or to focus on other things.

So, with that in mind, the best I can wish for all of you in the New Year is a healthy mind and body. Here is to a symptom-free year from your head to your toes (a New Year miracle, I know, but let’s aim high!)  To 2018 and beyond!

Everyone Needs a Dream

26 Saturday Sep 2015

Posted by in hope, mental illness, schizophrenia, writing

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I think it is important to the mind and the heart for each person to have a dream. I think this is vitally important to those living with an illness, and especially those living with a mental illness.

The days can be dark and long if you are battling with depression, paranoia, anxiety, psychosis, etc. Everyone needs a break from the grueling nature of an episode that takes over an otherwise healthy mind.

A dream can be like a salve to an open wound. It can carry you through. It can carry you on. It can get you from one place to another. It can help you soar a little above the earth possibly running your fingers through a cloud. It isn’t like a rainbow, it is a rainbow and the thought of attaining it is your pot of gold.

I have a key sitting on my desk with the word CREATE stamped into it and if I ever achieve my dream, I will pass the key on to another dreamer so they can hold on to the key as a reminder of their dream and when they achieved their goal, they can pass it on again.

I look at my key every day. I want to give it away. I haven’t decided yet who I will give it to, but I often think about it.

It is possible that I will be able to give my key away this week, or next week, or it may not happen until next year or they year after. My personal dream is to publish in one of a dozen places and right now I have five pieces of writing sitting in editor’s or reader’s inboxes at five of those publications.

I may hear back from all of them tomorrow with a “Thanks, but no thanks” or I may not hear from them for a couple of months. If they all say no, I will write, and edit, draft an e-mail and send again. I will repeat the process until I reach that one word, “Yes!”

Other than my marriage vows, it will be the best, yes, of my life.

We all need dreams to pave the way to good days.

A good day is coming and maybe you will receive a key long distance from me.