It’s too darn hot for meds… Or anything

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Heat is not my friend. I can’t go out into the sun, because of meds. And even when I’m indoors, even with the AC, the humidity etc. makes me woozy and disoriented and just plain tired. I end up sleeping all day or rather passing out and waking up like, wah!???

I’ve never been a fan of summer. But it’s been pretty hard this year. Psychotropic medication and the meds for Sjogren’s Syndrome and the fact that I am allergic to the sun. YUP! Allergic, I found that out when I was a child. I thought I was the only one on earth like that, but I ran into a few others on Facebook.

Summer is hell. I can’t go to the beach, I have to cover up like a mummy, the sun stings my skin, even with sunblock, which makes me sweat and feels like a layer of paint on my body.

This has to be the worst summer yet. Indoors, outdoors, I lose. And it’s not even August yet.

Whine, whine, whine. Yeah I know. If it wasn’t for the ice in Winter, I would like winter the best. But I love fall. Cool, sunny, beautiful sunsets and sunrises and the leaves change color. Beautiful. I’ve always loved the fall.

So, I’m taking it slow for the next few months. It’s taken me this long just to get my head together enough to make a coherent post. I hope.

@POTUS – Please do something about all those suffering from mental illness and can not afford assistance, medication or therapy.

My tweet to the cause.

I apologize for not being able to post regularly. I’m sure there are days you don’t want to be bothered as well as there are days, that I can’t put the thoughts together. Its par for the course. It goes with the territory. It is what it is. It’s BiPolar.

So, I stay in the shade. Try to make sense of things and the day passes in between medication.

One of my friends is so affected by the heat, they forget or are so dizzy, they forget to take their meds. Side Effects will do that too you.

Now to watch episodes of #MrRobot that I missed. #fsociety

Should we bring back institutions for the mentally ill? I say YES, it can be done right now.

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“Over the last 30 years, we’ve shut down the old asylums and what we’ve seen is increase in incarceration, suicide, homelessness, emergency room visits, unemployment, substance abuse and substance abuse deaths. We have failed on all these metrics. Anyone — anyone — who thinks we are being successful in helping those with severe mental illness is delusional.” – Republican Congressman, Tim Murphy – June, 2015

Read this story please…

http://www.buzzfeed.com/sandraeallen/the-trials-of-teresa-sheehan-how-america-is-killing-its-ment#.weqd07P7d

This is where the above quote was written. There are days when I wish that living was simpler. Where I felt safer and that I was surrounded by others who understood my condition instead of judging it or condemning it.

The psychiatric community believes that we are better off communing with society, rather than being isolated from it, there are times I disagree with this and days I agree.

I like my freedom. But, when I read stories like the one above, I wonder if properly run and checked institutions could benefit some of the mentally ill better than a pill and an occasional visit to a therapist.

In the past, institutions were self sufficient. They grew their own food and made their own bread etc. They lived on large natural settings, protected and shut away from society.

In the past, these patients were experimented on and treated badly by staff and doctors. This is one of the reasons these places were shut down.

Now, there are so many mentally ill who are homeless and in our prison systems forever, because they didn’t receive the help they so needed after these places were closed.

prison

Everyday there’s a new story about a mentally ill individual committing some horrendous crime. Which makes it hard for those of us who are able to maintain our illness and function or live in society, some of us even work, but are afraid to tell others of their illness, for fear of the STIGMA attached to mental illness.

It is nearly impossible to get the help to and for these people. Getting into a state institution is not easy. So many fall thru the cracks and end up in the headlines.

And the outpatient ‘help’ is terribly lacking. With more and more patients and fewer therapists out there to provide assistance. They are cutting down on the time you can spend with your therapist and getting to some of these outpatient clinics is a chore for some, because they are so far away from where they live.

Medication is expensive and the side effects turn off so many people.

I feel, that for the few that can’t cope or adjust to living and maintaining their lives thru meds etc. The option of an institution, run reputably and responsibly, would be better than more lives lost.

The only problem would be coverage by insurance. Insurance companies are one of the main reasons people aren’t able too afford therapy and medication. They reduce the amount of sessions and how long you can spend on psychiatric wards.

In other words, you have to leave even when you’re not mentally stable to cope with life ‘out there’.

Roger Rees 

Roger Rees was an incredible actor. I first saw him in the TV production of Nicholas Nickelby. For which he won an Emmy. He won a Tony for it also. 

  
The character had such passion, I fell in love and blushed. I was a teenager. 

His performance inspired one of my best poems. Which I lost some years ago. But I remember one  stanza, the last one. 

I love him in a passion

A flush of blood in cheek

A scream, A rage, A kiss

Goodbye Roger, not many people’s performances are brilliant enough to turn into a MUSE. 

Fourth of July

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Some days have been better than I expected. I actually did something social. For someone with Social Anxiety, it was a major accomplishment. I didn’t set out to do this, it just came to mind.

I went to the Fourth of July parade, alone. I walked slowly up the hill, watching each step and being mindful of my feelings. I told myself if I felt too overwhelmed, I had the option of turning back around at any time. No responsibility to show up and pretend to enjoy myself.

But I did enjoy myself, the bands, the children and the people. Everyone was so kind to each other and the kids. They enjoyed the candy being thrown and the music and groups dancing.

I even filmed a few things, here’s a few.

I really liked these guys, image doing this dance in the rain for over 1 mile.

Groups were throwing candy and I was collecting it for me and the children. I also got a shirt for a little girl who was ever so grateful.

It felt good.

Sometimes, I felt like this guy,

There, but not really there. Either way, I was exhausted when I got home, but I really don’t think I fully appreciate what I’ve accomplished in one day.

A crowd of people didn’t scare me. Loud noise and laughter didn’t make me paranoid. I didn’t feel like I was being watched or judge, I was just there and nothing mattered but the moment.

I even talked to people and clapped and just ‘let me be me’ without fear.

Of course, I took an Oxy for the pain and a clonopin for the anxiety before I left. And they worked without making me a zombie.

One day gave me hope. Hope that one day I could do something else social, without falling apart.

Social anxiety has kept me indoors for years. Building a world where I don’t have to go out and ‘mingle’. It still scares me, but I try not to think about it too much.

Something to ponder.

You know those days 

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when you wake up and feel like walking. No destination just walking. Taking turns when the mood hits you and going straight for as long as possible. Destination unknown, you’ll know it when you get there and then you’ll stop. 

That was today. Didn’t go far, but my heart wanted to wander with the breeze. Cool winds and gentle sun on my back. 

Felt good. Felt free. And then my day began and so did the fight. 

Moods, tears and exhaustion. 

Feelings of wanting to “be” someplace else but where you are now. Those kind of days.  

 

We all have our own demons, some are just more carnivorous than others.

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How do measure or obtain the worth of existence? In most ways, I’m a fatalist or at least was at one point. I don’t know what to call my thought process now, how I perceive life and trying to make sense of it all.

I use to think that God had a destiny all set out for each of us, and it was up to us (free will) to either reach or not reach that destiny. The destiny wasn’t any great prize or that all of our wishes would come true and life would be a dream. It would just be a life where we were content or happy for most of its course, until death.

Depending upon your decisions or actions, you either miss the mark or make it. But then how would you know if you were on the right path? Do you go by your gut? Do you try to manipulate life?

I’ve tried manipulating life, massive failure. Total disaster. Not recommended.

With BiPolar, I sometimes feel like I’m wasting space for someone more deserving to have lived life. Who had more to offer than I am capable of giving. I can’t work. I have no children. Sometimes I talk to my friend and a few other people, who come to me for advice. Why me? I have not lived.

When I say I have not lived, I mean I have not experienced life to its most fullest extent. Loved, given birth, had a career, traveled etc. Breathed the air and felt the surge of being alive.

That’s living, helping others and being able to participate in all there is out there.

I don’t sit and think about what my limitations are, but I am aware of them. I envy those who can run as an adult. Those who can walk or wake without pain. Those not hunted by some type of demon in their lives or in their minds. But those are fleeting moments.

We all have our own demons. Some are just more carnivorous than others.

Which brings me to my question; why am I still here? I have chosen to fight the good fight and not let this disease get the best of me. I have decided never to take my own life and if I’ve decided to live, I might as well get on with doing the things necessary to be considered ALIVE.

So I go thru the paces of daily existence. The stuff you do without thinking, but are an effort to me sometimes. Bathing, brushing my teeth twice a day, dressing, eating, taking all of my meds, making all of my doctors appointments, leaving the house to do these things, sleeping enough, all the things that should be like breathing, are an effort sometimes.

And then other times, when stability is there and the illness is in remission. They are second nature. Like breathing. So I look for other things to do, like expanding my mind, volunteering etc.

But I fear letting others down when the BiPolar comes back. If I make a commitment to be somewhere and perform a purpose, I want to do my best. It’s not fair for someone to hire me or enlist me and I can’t complete the task.

I took a free online course and passed with distinction. But it was stressful, exhausting and I panicked and had anxiety attacks thru the whole thing. How can I enroll for my Masters when this little course nearly set me back mentally.

I’m not feeling sorry for myself. I’m just being realistic. I’m not gonna jump on some rainbow and pretend that it’s all cheery just because I’m having good days mentally.

I have to be on guard, always.

So back to self worth. I guess I have no answers for that one after all. I live day by day, sometimes moment by moment. I don’t future think, I live and am trying to stay in present, cause that’s all I can handle comfortably.

This is how I live with my BP. And it works for me. For the moment, we all know everything changes and everything is temporary.

Introspective

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I feel so new with this physical illness. You can’t see pain with the naked eye, but you can see it’s effects. Kinda like mental illness. So actually, I should be able to get an understanding on how to live with this shit. Maybe.

With Sjogren’s, like BiPolar, you really never know when an episode is gonna hit, but you can kinda see or know the signs it’s coming.

I’ve got BiPolar’s signals down, for me. I can tell when certain behaviors are leading up to an upswing or a downward spiral. And I will try to head it off with meds or self talk etc. Using my skill set here.

With Sjogren’s, it’s all so new. I have a journal of daily activities. I know if I do too much, I will pay for it later or the next day. But, HOW MUCH IS TOO MUCH ?

I slowly push the limits, but I fear a flare up, so I just do nothing. I hate the pain all over my body. My knees, my back, my hips. I’m sore all over and even laying down hurts.

So I take it easy.

Which leaves me without a life; I fear pain, depression, people, myself, loneliness, love. So many things, it’s not like a phobia, but more like a general fear of everything. Without being specific, maybe its paranoia, but I don’t think so. I don’t think anything is out to get me, so maybe it’s anxiety.

I’m just so tired of illness. No matter what the brand. I’ve been sick with something ever since I was born. Wearing leg braces as a toddler, constant bouts with tonsillitis. Depression.

I see myself dying alone and it scares me. The people I love are either growing up or getting older and as the youngest child, I fear being left behind. Sick and alone. No one knowing I’m dead until the stench in my apartment reaches the street. As the unpaid bills pile up in the mailbox and the neighbors begin to ‘wonder’.

Over 20 years of fighting BiPolar has left me tired and alone. I avoided relationships because I didn’t trust my judgement and I felt I would attract someone who would abuse me. The one time I tried, this came true. Not physical abuse, although there were time it came close, but verbal, emotional and mental abuse.

So, proving myself right. I stayed alone. Isolated and trying to get some sanity back.

When I finally got on an even keel, the bottom dropped out again with the thyroid and the Sjogren’s.

Something new to experience. I’m too old for this.

I don’t know if I have the fight of a 20 year old to battle and come out, O.K. anymore.

But something inside of me, keeps me moving forwards. Although I don’t know why or what it is I’m moving towards.

Depression and disappointment

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I can feel it creeping inwards. I am slowing down, it’s getting harder to get things done and I tire easily. There are physical reasons for the tiredness, but I also have a deep yearning for SWEETS.

I want sugar. I’ve cut back on it and use Stevia now instead in my coffee. It’s probably some type of stevia mixture, its called Zing.

I use less of it than I did on sugar. This change has helped me with my Sjogren’s.

But when the depression starts too creep in, I just want junk. Sleep and more junk.

I know I’ve gained weight. But I don’t care.

I just want a dining room table. I feel like, if I could get a place to eat and color and write, things would feel more like a home.

So far, I’m stuck.

Thought I had it, but it was a giant CLUSTERFUCK.

Had to unfriend my cousin. Her content was trash, and I’m the one on meds. That’s all I will say about that one.

I feel pressure to socialize. So I’m gonna do it, so they will leave me alone. I just want to be left alone actually. I value my privacy and self time.

Away from the drama that people bring upon themselves, simply because they don’t listen or pay attention to past mistakes.

Right now my head is in two places. A potential conversation and the writing of this post. I’m not multitasking, I am simply confused.

People are draining. Life is tiring and functioning is getting to be very difficult.

Oh, and I see the dentist on Friday.

Aint life grand?

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