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A Journey With You

Tag Archives: hope

Can Anything Good Come From Chronic Illness? Yes, for Some, Perspective

23 Tuesday Oct 2018

Posted by A Journey With You in bipolar, caregivers, hope, mental illness, schizophrenia, Uncategorized

≈ 3 Comments

Tags

blood pressure, blood sugar, cholesterol, chrnoic illness, diabetes, diet, exercise, gratitude, health, hope, medication, mental health, mental illness, schizophrenia], thankfulness, wellness

I received an updated diagnosis from my psychiatrist. My current diagnosis is Chronic Paranoid Schizophrenia and Generalized Anxiety Disorder. I also have diverticulitis and have had to change my diet over the last two years to avoid surgery. I am going through perimenopause and have hot flashes and disturbed sleep. Lastly, I have masses that keep forming in my breasts that require testing, and for one year, I thought I had breast cancer (each time I have a new mass that is a possibility). This list doesn’t even cover the side effects of antipsychotic medication which are high cholesterol, high blood pressure, high blood sugar, and possible liver damage to name a few.

When I read that paragraph and think of all I do to try to live a healthy life, health for me is a full-time job. How much I sleep, and when and what I eat, how regularly I use the bathroom. Then there is making sure I exercise, making regular doctor appointments, having my blood checked regularly, getting mammograms every six months (or sooner if a mass grows), taking my medications twice a day, learning mindfulness exercises, and writing in guided journals that address happiness, gratitude, spirituality, health, etc. I am sure I am leaving out many details of care here.

I don’t believe that everyone can make all the changes and do all the things I do to remain healthy, and I don’t believe everyone, even if they did all these things, would be healthy (I’m not 100% healthy, some of my numbers are borderline). I’m not blaming people who have worse outcomes than me, for their level of illness – not at all. I think people can do everything right and still end up with psychosis, diabetes, cancer, surgery from diverticulitis, high blood pressure, high cholesterol, and many other illnesses. No one is immune from illness or poor health even though so many people would like to believe that it is all in their control because it makes them feel safe.

All I am trying to show by writing down what I deal with is that it isn’t easy to manage schizophrenia, or generalized anxiety or any health issue. Having to watch everything you eat, and having to eat at certain times, trying to get exercise most days, all of that stuff is hard. I wouldn’t be surprised if many people, especially those experiencing so many of the symptoms of mental illness (like depression, lack of motivation, etc.), are incapable of doing all or even half of the things necessary.

There is something else, though. In my latest note from my psychiatrist, he said, “Rebecca has wonderful skills and a positive attitude.” I almost cried when I read that. And I know it is true because despite how hard it is to try to stay well, I am so happy that I get this chance. I am so thankful, grateful, and in awe that I am alive.

On bad days, I feel a little sorry for myself, but most days, most days, I am full of gratitude to see the moon, the stars, feel the breeze and to know what it is like to be loved, and that is just the beginning of my thankfulness. I am thankful that I have food on the table, that I know how to read and write, and that I can come up with ideas to share with people. I could go on for pages, and pages and days and days about the things and people I am grateful to have in my life.

Is chronic schizophrenia hard to live with? Yes, all illness is hard to live with, but is my life worth living, and something I want to continue until I am old and gray (well, I am already almost all gray)? Yes. I want to see thirty more summers, thirty more winters, thirty more falls, and spring, yes, spring!

It’s hard. It’s tough. It’s demanding. It is difficult. But it is beautiful beyond measure and I wouldn’t change my life with anyone because no one is immune from hardship. It is my life, and I believe I only get one, so I will gladly live it, illness and all.

Giveaway: Journal/Workbook

13 Saturday Oct 2018

Posted by A Journey With You in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, Uncategorized

≈ 12 Comments

Tags

bipolar, book, coping, exercises, giveaway, hope, journal, mental health, mental illness, recovery, remission, schizophrenia], wellness, workbook, writing

I received my author copies, and I want to pass a couple of them on to you! Like this post and comment for a random chance at winning one of two copies. I will pay for shipping.

20180921_104418

Forgetting Your Mental Health Might be the Best Thing for your Mental Health

03 Wednesday Oct 2018

Posted by A Journey With You in bipolar, caregivers, hope, mental illness, schizophenia, stigma, Uncategorized

≈ 4 Comments

Tags

advocacy, bipolar, brain disease, family members, help, hope, live life to the fullest, mental health, mental illness, mentally ill, schizophrenia], wellness

For the past few years, I have considered myself an advocate for the mentally ill. My advocacy corresponds with my coming out publically with my diagnosis after almost two decades of hiding it.

The problem with focusing on advocacy, writing dozens of articles, writing a blog, and doing many interviews about life with schizophrenia is that having a severe mental illness became my primary identity. Meaning, I focused a good deal of my time on having a brain disease.

I have written over and over again about how I am a wife, daughter, sister, friend, cousin, niece, aunt, writer, etc. and that I have many identities that have nothing to do with having schizophrenia. Although I wrote those words over and over again and said them in interviews just as many times, I wasn’t living that way. I was spending the majority of my time on things that were directly related to my illness.

I have seen many people (way too many to count) who receive a mental health diagnosis become advocates. It seems to be a way to try and make something positive out of something challenging, devastating, difficult, hard, and even at times, humiliating (because of stigma and stereotypes). I think advocacy is fantastic and I am glad that both family members and those with a brain disease are active in this work, but focusing on one aspect of your life especially one that can be as difficult as a severe mental illness is not good for mental health!

Doesn’t that last sentence sound ironic? Focusing too heavily on your mental health or diagnosis is not good for your health. For that reason, I am starting a blog (I’m keeping this one, too) that has nothing to do with the world of mental health (I hope to monetize that blog and make it a small business), and I am going to work part-time outside of the home in a job that is customer focused.

I don’t intend to give up my work as an advocate; I simply plan to start living a more full and varied life. At first I plan to work up to not thinking about schizophrenia for a few hours, and hopefully, after time, whole days will slip by where I don’t think about the world of psychiatry, mental health, stereotypes, stigma, or the world that consists under the branch of mental health.

Because let’s be real, what can be healthier than living such a great life that you forget you have a disease? Ignoring your mental health can be the best thing you do for your mental health. Riddle me this Batman.

A Guided Mental Illness Journal & Workbook: Build Confidence and Coping Skills

23 Sunday Sep 2018

Posted by A Journey With You in articles I wrote, bipolar, caregivers, heroes, hope, mental illness, relationships, schizophrenia, stigma, travel, Uncategorized, writing

≈ 10 Comments

Tags

anxiety, Art, artists, author, exercises, healing, heath, hope, mental health, mentally ill, recovery, schizophrenia], self care, self-confidence, wellness, workbook, writing, writing prompts

Here is the cover of my new guided journal/workbook. It contains writing prompts, tasks, and exercises to think more creatively, increase motivation, learn new skills and basically help you think past the symptoms of mental illness. I will be donating 10% of my royalties to Third Avenue Charitable Organization (TACO) to help with the work they do with the homeless and low income in my community. Many of the people they serve have a mental illness. The workbook is available on Amazon.

20180921_104418

Faith and a Late Night Prayer

31 Friday Aug 2018

Posted by A Journey With You in hope, mental illness, schizophrenia, Uncategorized

≈ 4 Comments

Tags

brain disease, christianity, faith, hope, mental health, mental illness, mentally ill, mystery, religion, schizophrenia], wellness

In the city, it is easy to think about man. In the desert, mountains and on a night at the beach, it is easy to think about God. Last night during my prayers, I wanted to search for God, so the image I brought forth in my mind was me, at seventeen, in Cyprus, walking the beach at night.

I can remember looking at the black sky filled with distant lights and thinking, “What did our ancestors think when they looked up from where they were sleeping and saw this vast and endless sky?” “Those lights hold the answers,” I told myself into my pillow. And that is why while I pray, I imagine that beach, that half moon, those stars that will always be countless.

“Some people think schizophrenia is the same as demon possession,” I say as I imagine my toes, bare, sinking into the wet sand. I know that can’t be true because if it were, it would mean doctors had learned how to silence demons.

I wonder as I imagine the light of the moon reflecting on the water, “Can you disregard the Ten Commandments, seemingly lining up to break every one, and still come back to the title of daughter or son?” The stars blink, winking at me from this Greek Island where I imagine myself walking while I lie in bed.

My cousin has cancer. Several of my friends have cancer. I have lost people to old age, tragedy, and hard living. “I’m not unique in my suffering; it is so important to remind myself,” I almost say out loud. If I die at fifty-three, I will have lived more years than many, and far less than others. It is not a curse I carry but the story of the reality of life.

A cloud covers the moon. The beach becomes darker than before. I say to myself, “So many people criticize Christianity, so many people say it is all fairy tales, and call those of us who believe ignorant, hypocrites, and fools,”  but I can’t go on each day without knowing I can call to you,  question you, run to you from the world that is harsh, violent and sometimes painfully beautiful.

The lights in the sky are shining, and I don’t hear you, but I see you all around. Each star, millions of them leading me to the answers I seek on a beach and ocean far away while the covers on my bed surround me and call me to sleep.

 

 

An Invitation to Normal

29 Wednesday Aug 2018

Posted by A Journey With You in bipolar, hope, mental illness, relationships, schizophrenia, stigma, Uncategorized

≈ 3 Comments

Tags

brain disease, daily, friendships, happiness, health, hope, mental health, mental illness, mentally ill, normal, relationships, schizophrenia], wellness

On Sunday night, I went to a Rod Stewart and Cindi Lauper concert at an amphitheater approximately twenty miles from my house. My husband and I took two of our friends, and before the concert, the four of us had a picnic (tailgated) in the parking lot. Our seats were lawn seats, but even though those are the cheapest seats, it was a great place to sit because the lawn is sloped, you can easily get up and dance, and there are plenty of big screens so you can see what is happening on stage in case you forget your glasses like I did (oops!).

My husband didn’t listen to Rod Stewart as a teenager, but one of my friends and I knew almost every word to both artist’s songs. I suppose there is nothing remarkable about going to a summer concert in Southern California, sitting on a blanket on a warm night, sharing a carafe of wine (I’m the only one who doesn’t drink because of my medications, but I had water!). I guess to most people, that would be pretty normal, and that’s my point.

If you want to help someone with a mental illness, include them in the plans you make that are “normal.” I can’t do or go everywhere because of symptoms but some of the best times I have are just participating in things that others take for granted like movies, concerts, coffee shops, a lunch date, having someone drop by my house because they are in the neighborhood.

When I read the comments from people with schizophrenia in the groups that I am a member of, one of the main complaints is that people are lonely. I know that having a friend with schizophrenia can seem different, uncomfortable, or odd, but most of the time people won’t have to “work” at the friendship or accept any more idiosyncracies than they would with any other friend. You know your friend who is always late? You know your friend that double dips their chip in the salsa or hummus? You put up with those behaviors and end up saying, “Oh well, that is just so and so.”

Those of us with schizophrenia can be a “so and so” to you too. I have to get past uncomfortable feelings every day; maybe it’s time we all try to do it and include someone with a mental illness in our plans

Changing the Landscape of Normal

20 Monday Aug 2018

Posted by A Journey With You in bipolar, caregivers, mental illness, relationships, schizophrenia, stigma, Uncategorized

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Tags

chronic illness, chronic pain, health, hope, marriage, mental health, mental illness, relationships, schizophrenia], vows, wedding, wellness

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.

The Art of Tricking My Brain

27 Wednesday Jun 2018

Posted by A Journey With You in caregivers, hope, mental illness, relationships, schizophrenia, Uncategorized

≈ 9 Comments

Tags

brain disease, brain health, hope, inspiration, mental health, mental illness, mentally ill, motivation, pop psychology, psychology, schizophrenia], wellness

I have schizophrenia, but it doesn’t mean I don’t want to be successful at climbing the mountains that are there before me. I currently have myself in training for a steep climb, and chances are I will make it, but even if I don’t, I’ll be in better shape in every way than I was before I set out on this path.

 

Last night, my husband texted me that he was leaving work at 5:30 and that he would be riding his bike home. When I received the text, I pulled out our backpack cooler and started preparing a picnic. I washed some grapes, made a container full of cut cantaloupe, cut up three different kinds of cheese, packed a sleeve of crackers, and put some of the hummus my husband made in a Tupperware and added two bottles of water. When my husband walked in the door, I was ready to go. He changed his clothes, and we walked the mile to the organ pavilion in the park near our house. We sat on the steps and enjoyed the music of a funk band that was playing.
All summer long, the park near our house has free summer concerts three days a week. As we sat there, tears rolled down my face, and I said to my husband, “I finally feel like I am living my best life.”
In the last year, I have committed myself to make my life better in every way possible. I don’t sit by when things are difficult or not going well and take it. Not taking it, includes the symptoms I have from schizophrenia as well as other things that come up in life, marriage, family, etc.
My psychiatrist has told me that he can change my medications, or add additional medicine to try and clear up the remaining symptoms of schizophrenia but in every case like that, a person has to weigh the pros and the cons. One of the hardest things to deal with more medication is, of course, side effects. I feel like managing my side effects from the drugs I am currently on is a full-time job, and I don’t want to add any more requirements, suggestions, restrictions to that. It is hard enough as it is.
So, I do the best I can to overcome symptoms when they arise or to avoid any triggers that will cause them. The symptoms that cause me the most problems are anxiety, lack of motivation, and a need for increased sleep. Most days the need for increased rest doesn’t create too much of a problem because I don’t have a job I need to be at or any place I am expected to be (if I do have an appointment then it can interfere, but that doesn’t happen too frequently).
The anxiety and lack of motivation can disrupt my life though, and I am finding ways to handle those symptoms that are lessening their occurrence and hopefully getting me strong enough to work. (My dream is to make a living freelance writing, but I haven’t been able to overcome my symptoms sufficient to put in the time and effort and hustle that writing full time (or even part-time) takes).
How am I managing my symptoms better than ever? I am practicing all kinds of psychological tips and tricks to help fool my brain. I keep a gratitude list (which helps with overall perspective -things could be far worse), helps lessen anxiety and helps me focus my mind on what is going right instead of what is going wrong. I read a passage or two from the Bible every day, and I write my response to it. Many of the passages I read are hopeful and give me a sense that I am not alone, and that something more significant than me is in control (this is very comforting and helps with anxiety as well).
To trick my brain into overcoming my severe lack of motivation, I write down tasks every day that I want to complete. I rarely have in the three months I have been doing this completed all the tasks on my list, but on average I am finishing two to four of the tasks I want, and that is way better than I used to do.
Before I started trying to improve my life and lessen my symptoms, I had many days where the only thing I did was watch television and scroll through social media. In the past, I went weeks without getting out of the house. Now, I put on my task list every day, take a twenty-five-minute walk, and for the most part, I do it! Of course, the walking helps with the side effects of the medication (high sugar levels, high cholesterol, weight gain, high blood pressure, etc.) as well as elevates mood and makes panic attacks (I think) less likely.
What do I think helped push me to try so hard to create a system that helps me overcome symptoms? Like most people, I didn’t want to throw my life away, and I want to contribute to society in a meaningful way. Watching television and reading social media post left me feeling frightened, anxious, depressed, and many other negative feelings. In other words, the news and social media were hurting my chances of living my best life.

Bridging the Divide

14 Thursday Jun 2018

Posted by A Journey With You in caregivers, hope, mental illness, relationships, Uncategorized

≈ 4 Comments

Tags

alternative facts, community, compassion, culture, friendly, hope, kindness, love, mental health, people, politics, reality, relationships, wellness

The past two years have been surreal. I feel like reality is fluid. Reality used to be full of hard facts, things we could easily prove. Now, people we are supposed to trust throw conspiracy theories and “alternative facts” around regularly. Our country is changing at such a dizzying speed, and much of it is shocking, and some of it is alarming. One thing is for sure, as a group, as citizens, as a nation we are divided, and those divisions are causing people to feel hostile and angry. It is as though everyone is on the verge of snapping.
I discovered something, possibly one of the few things I can do to bring generosity, kindness, concern, love, goodness, friendliness, and all the positive things we can feel between two people back and that is to go small. I thought about it during breakfast this morning.
My husband and I had breakfast at a local hotel.  When we arrived, the whole room was loud, and every table was full. People were cutting in the buffet line, talking on video conferencing, having to raise their voices to hear their table mates. We learned from our server that ninety people eating in the restaurant were a part of a tour group. The people on tour were on a time limit, so it is easy to understand why they were in a hurry, not waiting in line, etc. but the impact this had on the servers as this person and that person asked for water, or coffee was noticeable.
Every time our server went by, we asked if she was okay. We told her it looked very stressful. We thanked her for everything she brought us and said we hoped her day started to look up. It was evident that our concern for her was going a long way because she made sure to come back to our table frequently to ask if we needed anything, or wanted anything.
My husband and I said working at a buffet when a large group comes in must be very hard. We didn’t see a single person tip their servers. We know from being on tours that the head of the tour should leave a big tip for all the servers to share, but there is no guarantee that that is the custom everywhere.
We decided to leave our server a larger than usual (about double) tip to make up for all the running around she had to do and for putting up with chaos with a smile on her face. When she received our tip, she was so grateful.
As we walked along the waterfront after our breakfast, I told my husband that the only thing I can think of to help out people right now is to go small – make every interaction, every conversation, every greeting, every time I talk or see another person an opportunity to show love and kindness. The only hope I see for rebuilding our relationships and communities and crossing this vast angry divide is to go small and take it one person at a time.

I know we can be the friendly and generous people we have a reputation of being if we heal each other one interaction at a time.
I’m going small, and hoping others will join me and that it can make all the difference.

It’s Not Personal and Lowering Expectations

24 Thursday May 2018

Posted by A Journey With You in bipolar, hope, mental illness, relationships, schizophrenia, Uncategorized

≈ 2 Comments

Tags

expectations, healing, hope, mental health, mental illness, mentally ill, personal, recovery, risks, schizophrenia], student, wellness, writing, writing classes, writing instruction

I need to work on my expectations and taking things personally. I know from years of being on this planet, and hearing the words of some wise people, that making things personal is most often just punishment to yourself. Most things that happen are not personal.

I am in a writing class and on the first meeting when the teacher asked me a question, I told her I have schizophrenia. The whole class heard, and now every time someone doesn’t respond to my homework, or my comments, I think it is because they think I don’t matter because I am just the woman with schizophrenia. Thinking that people’s response, or lack of response, has anything to do with me is self-defeating and ridiculous.

People don’t respond to us because they are busy; they prefer texting, they are shy, don’t want to, don’t need to, are rude, are sick, etc. I could go on with that list for ten more pages, and every excuse for people not responding would be more likely the real reason than it having anything to do with me or my having schizophrenia.

I need to take the advice of some strong women and toughen up buttercup! It is hard to put yourself out there, though and not to receive positive feedback in return – no smiles, no kind words, no words of support – just silence, nothing, nada. It is particularly hard considering the stories/essays/pieces I wrote were deeply personal. I have to remember though, that it is my expectation that people will respond, it isn’t a requirement of them.  I need to keep my expectations in check.

I know for some people, especially those of us who have trouble with isolating socially, it would be easier not to take any risks (this is true of everyone not just people with a mental illness). Not taking risks, means you have nothing to lose. But that brings the flip side of that scenario into focus – if you have nothing to lose, you have nothing to gain.

I think it is so important for people (everyone) to push past their comfort zones at least a little bit on a daily or weekly basis. Those of us who are on the road to recovery need to try to push our boundaries, or our boundaries will keep getting smaller and smaller and threatening to choke the life out of us. Most of us need to grow a little more comfortable trying new things and the more things we get comfortable with, the bigger our world gets and that helps with healing.

I know I can’t completely regain all the functioning I had five years ago (an office job, lots of travel, very social, etc.). But I can work to regain some things and maybe even add some that I didn’t have before. To do that, though I will need to keep taking risks, lower my expectations and not take things personally! It can be done; I know it can. The only thing holding me back is fear and myself. Everyone with schizophrenia has dealt with fear; we are experts at it – this should be one we can easily conquer.

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