#HAWMC Day16 Activist Advice

Today is Day 16 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Wisdom Wednesday:
What advice do you have for health activists just starting out?
Share your words of wisdom for all the health activist rookies out there!

I guess my biggest piece of advice would be to just get started.  Just jump in and start.  I’ve been blogging for years, yet I feel like I’m just getting started.  I always feel like I’m just getting started, perhaps because I do little more than blog.  Recently I started my facebook page, and I’ve started being active on Twitter.  I’ve searched out others who posts about Meneire’s Disease, migraines, bipolar, chronic illness and pain in general.  I’m learning so much!

I can’t do a lot of the things I’d like to do as a health activist.  I’d love to be able to be a voice in person, to speak, to go to conferences, to be more involved.  But alas, I can’t.  I may try more in the future, but I’ll admit at this point in time I’m too afraid to try much more than I’ve been doing.  It has been very rewarding though to get to know so many people who not only understand what it’s like to go thorough the same things I do, but are able to put a voice to it.

My recommendation for starting out to be a good activist.  Start slow.  Don’t bite off more than you can chew all at once, you will get burned out way too fast.  Focus on one thing at first then move on to the next.  If you blog, make sure to blog on a regular basis. No mater what form of social media you like, be sure to stick with it.  Post often. Make contacts.  Believe in what you are doing.  Care.   I guess that’s the biggest thing, that’s what will keep you going, you must care.

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

Have you tried? Do you think ___ caused it?

butterfly color

Butterfly, by w. holcombe

Hello.  My name is Wendy.  I just turned 53 years old and I have chronic illnesses, including Meniere’s Disease.  Unless something amazing happens, they are not going to go away.  Sometimes I feel I need to make this statement before anyone speaks to me.

Recently I was asked a few things about my health.  This was not by people who see me often, or have much knowledge about my illnesses.  This is how I handled a few of the questions, some of it was good, some not so good.

Have you tried yoga?  It can really help your balance.  I used to do yoga regularly until the Meniere’s Disease got so bad and I ended up on my face during a class.  It can only help your balance if you have some to start with!  After having a disease ruin your balance system, yoga isn’t possible.  (ok, this may have been a bit harsh, and some people with Meniere’s may get some help from yoga, I don’t know.  However, anyone as advanced as I am, who has been through Vestibular Therapy and still has balance issues all the time, cannot do yoga.  And if you have had a disease the compromises your balance for as long as I have, do you not think I would have heard about YOGA by now?)  

I heard about these positions you can get in that will make vertigo go away.  Why can’t you just do that?  There are maneuvers you can do to help certain types of vertigo.  However, there are numerous causes for vertigo and what causes mine can not be helped by those maneuvers. (do people think my doctors would just let me suffer  this much if it was so simple to “cure” my vertigo?)

Do you think this could have been caused by all the drugs back when you were younger?  Okay, this one caught me off guard.  I thought, what the heck is she talking about?  I may have experimented a little when I was younger, but she wouldn’t have known that.  I must have looked shocked and said, “nooooo?”  She then explained, “All those psychiatric drugs they put you on.”  I was shocked.  How could someone think that the treatment I received for my mental illness caused me to get chronically ill?  I’m sure I looked shocked when I answered, “No.”  “Well I was thinking….”  I stopped and said, “I know many people with Meniere’s disease and really we have nothing in common except some of us have relatives with the same disease.  They have no idea what causes this.”  “That’s good to hear, I’ve been so worried about it.”  “Well there is no need to worry about that.  The medication I’ve taken for my Bipolar did not cause me to get ill.”   AHHH!

This last question has continued to plague me.  Is this one of the reasons people do not seek help for their mental illness, they are afraid of what side effects the medications may cause?

I have Bipolar I disorder.  I take medication for it.  I also try to keep a good sleep schedule, eat well, keep my stress controlled, and see a therapist…there is a lot more to taking care of yourself  when you have a mental illness than just taking your medication.

I have never been afraid of taking my medication.  Each time my medication is changed my doctor and I talk about it.  We discuss exactly what it is supposed to do, any side effects, if it will react with any other medications I’m on at the time, and if the side effects are worth it.  I don’t just take a medication not knowing what it will do to me.  No one should do that.  If your doctor does not automatically discuss these things with you make sure you ask BEFORE you fill your prescription and start taking a medication you are not familiar with.  I also advise you to read the information the pharmacist gives you about your new medication just in case your doctor forgot something.  It happens, doctors are human too.

I have decided to take a medication even though I knew there was a chance it could cause damage to my thyroid.  It did.  I now have to be on medication for hypothyroidism.  Am I upset that the medication caused this side effect.  No.  I went into this with my eyes wide open.  At the time there were very few medications to treat Bipolar I and I decided the pay off from the drug was worth the side effect that it may cause.  I’m still happy I decided to take that medication and have those years as a stable person.  Truthfully, I would take it again today if that was the only medication that would keep me stable.

I would hate to think that people would not seek out treatment for any illness because they are afraid of the side effects of the medication they might be put on.  Become informed.  Know what the medications will do.  Know how it will help you and the side effects it may cause, you decide if it is the right medication for you.

Many of you may be thinking that there are times that a certain side effect is unknown.  You are right.  There are many stories of someone who took a medication and had a severe reaction.  There are stories of people taking a medication and years later they find out that it hurt them in ways they never knew it could.   These stories are not typical.  We simply can’t live in fear and not be treated because of the “what ifs”.

I can tell you, if I hadn’t been treated for my Bipolar for all these years, my life would be totally different, and not in a good way.  I can almost tell you for certainty that I would not be alive to write this post.  I will never regret taking the medications that helped save my life.

 

My Story – Being Bipolar

wendy hairOn this the last day of Mental Health Awareness Month I’ve decided to tell a little about me.  I have a story.  I feel it needs to be told.  If for no one else, this is for me.  (This is the very condensed  PG version.)

Something was wrong.  I didn’t know what it was, but I was wrong.  I was wrong inside.  I didn’t react to things the way other people did.   I knew it.  I could see how other people were different.  I was always told to be myself.  But I just wanted to be like everyone else, I didn’t understand what it meant be  “myself”.  I spent days in tears feeling like I had this black cloud over me.  At a very young age I longed for my life to end.   Other days I was flying high.  I could not control my thoughts from going everywhere, I could not control my actions, I could only follow them.  This wall all considered a natural part of growing up.  I was just a moody child, then a hormonal pre-teen, a troubled teen….  I look back and don’t know how I, or the people closest to me, survived.  There are many stories from this time that are very hard to tell.  They may come out at a different time.

My ups and downs carried on for years, and years, and years…. the older I got the worse it was.  After all when you get older your actions have many more consequences.  However, when the moods were swinging to either end, those consequences simply didn’t exist in my mind.   On the down swings I was fighting for my life, literally.  On the up swings I couldn’t rationalize things.  I couldn’t see beyond the emotions.

After a failed suicide attempt at 25, I finally started getting some mental health treatment.  I was told I suffered from Manic Depression, and was put on Lithium and an antidepressant and started seeing a therapist.  Maybe if I had just been able to stay the course that I was originally put on life would have been different, but things changed.

I was re-diagnosed a number of times.  Things changed so much over the next few years it was a constant battle of up and down trying so hard to get a grasp on reality.  The biggest mistake that was made, I was told that I did not have a mental illness, I had hypoglycemia and the fluctuating blood sugar levels were causing my mood swings. I was so relieved that I didn’t have a mental illness.  I was normal like everyone else.  I simply had to watch my diet and everything would be alright. I believed this for years and tried so hard to control everything with my diet.  If things got out of control, I would beat myself up for not following my diet strictly enough.

People couldn’t see just how bad I was because I was still able to hold down a job, even if I changed jobs frequently, I seemed normal, I was just “moody”.  I went through friends like water.  Friends I made when I was manic, couldn’t stand the depressive side, and friends I made when I was depressed, didn’t understand the up me.  Friends I made when I was in my normal state couldn’t understand my swings and they simply disappeared.

I had a job, but I also had a lot of debt.  I lost days.  There are huge gaps in my memory.  I’ve met people while I was in a normal state and had no recollection of meeting them before.  I didn’t remember men I obviously knew very well.  I did drugs.  I stayed up for days.  Risky behavior?  There were no thoughts of the risk.  Nothing could hurt me.  And if it did, so what?  In both states there was not much thought about my own safety.

Then the day came when the depression took hold so tightly I held a razor to my wrist and started to slice.  I just made the most cursory of cuts, deciding exactly the way I should do this, how deep did I have to go, how much would it hurt, how long would it take….then suddenly I thought….The Mess.  There will be such a mess and my roommate will find it. Someone will have to clean up the mess.  That thought saved my life.  That thought gave me enough pause to call a suicide hotline.  I would not tell them where I lived but I promised to go to the out patient center of the mental health department and talk.  I drove there, and when I got there I talked and told what happened that night.  I could not promise I would not harm myself if I left.  I honestly don’t know if I could have or not, but I knew I needed someone to help me.  I needed to know for sure that I could get through the next day.  I knew if I said I would not be a threat to myself or others then I would not get the help I desperately needed.

Since I was not able to say I would not harm myself I was not allowed to leave, I was told I as going to be admitted to a mental health facility.  I admit I actually felt a relief.  I suddenly felt safe, at least for the night.

The police came and took me to the hospital.  I was entered as a non-voluntary admission.  That is the only way my insurance would pay for this, but I had insurance now, this was what got me into this facility instead of the state hospital.  I had no idea the amount of debt I was about to get into.  I needed help, that is all I thought about.  I no longer cared what people thought of me, I no longer cared if this would follow me forever, I only wanted to lie down and never wake up.  I knew these thoughts had to stop, I knew if something didn’t change I would end my life, soon.

(If you would like to know more about my stay in the mental hospital please see my post: Inequality in the Mental Health System.)  The stay in the mental hospital changed my life forever.  I was there longer than I thought I would be.  The little overnight stay turned into two weeks,  but when I left I was in the mental health care system.  I had group sessions set up, I had an appointment with a new psychiatrist and therapist.  I had a new lease on life.  With another wrong diagnosis, Borderline Personality Disorder.

Soon after starting to see my new psychiatrist it was then determined that I do indeed have Bipolar I disorder.  I started being treated with Lithium and other medications again and things finally started to get on track.

It took some time to get the medication just right.  It took a lot of time in therapy.  It takes a lot of work to get things right and get better.  It takes a lot of work to keep struggling through the system.  It takes a lot of work to help yourself when there doesn’t seem to be an out.

I’m a lucky one.  I was able to find help.  I was able to get a correct diagnosis.  I was able to get a treatment plant that worked.  I’m still able to get the help I need, when I need it.  So may people are not as lucky as I am.

There are many obstacles in getting mental health care.  I fought hard to get where I am today.  I still fight hard to ensure my mental health is a priority.  I will never give up.

Too many people are fighting for mental health care and have so many obstacles in their way.  If you are one of these people, please don’t give up.  Reach out. In my experience, things don’t always go smoothly, but getting help meant my life is so much better than my life was before.

National Suicide Prevention Hotline    If you are in crisis please call.  1-800-273-TALK (8255)

American Foundation for Suicide Prevention

Mental Health Alliance (This site has a lot of useful information, including help getting care without health insurance.)
National Institute of Mental Health
Seeking Mental Health Care: Taking the First, Scary Step (this is a very useful article from Psych Central)

Mental Health Care Awareness Month is closing, but we should always be aware and working to obtain equal and affordable mental health care for everyone without stigma.

 

 

Depression, it’s not just being sad.

Recently someone asked me to write a post on what I felt depression was like.  Funny thing, I had just read a post over at Bipolar BarbieQ that included that very thing, I think everyone could get a lot from her post I’m the Queen of Run-on’s it is an honest gut wrenching post and I wish all of you would read it.  (yes this is the second time I’ve shared this post, I really like it.)  She also had this really cool graph in her post, so I’m going to steal it.

depression graph

 

Most people think that Depression means you are Sad.  Even Webster’s Thesaurus will say that Depression and Sadness are synonyms.  Well yeah, you are sad when you are depressed, but there is so much more, so very much more.

When someone says they are depressed, that means they are sad, when someone says they have depression, this is a mental illness.  When you look up the definition of Depression you get both answers, “(1) :  a state of feeling sad :  (2) :  a psychoneurotic or psychotic disorder marked especially by sadness, inactivity, difficulty in thinking and concentration, a significant increase or decrease in appetite and time spent sleeping, feelings of dejection and hopelessness, and sometimes suicidal tendencies” (Merriam-Webster Dictionary)

I think feelings of Depression can vary from person to person.  Profound Depression is all-consuming.  You don’t just feel sad, it consumes you.  You have difficulty doing anything else because your feelings are so torn up.  It spirals down to the depths of your soul and you are trying your best to claw your way out.  Depression can also have states of severe anxiety mixed in, feelings of paranoia, feelings of suicide.  When you are just sad, you don’t have all of these other emotions consuming you.  With depression you often just feel numb most of the time. Nothing can bring you out of that darkness.  You find joy in absolutely nothing.

The definition above mentions “difficulty in thinking and concentration”…yes we can click that off my list.  “A significant increase or decrease in appetite”…oh I eat, I want comfort food, or anything that might make it in my mouth sometimes. I’ve actually envied people who lose their appetite when they are depressed.  “Time spent sleeping”…now this one is tricky.  Sometimes I sleep a lot, sometimes I can’t sleep at all.  Normally, I have a very hard time sleeping when I’m very depressed. “Feelings of dejection and hopelessness”  YES!  That is the overwhelming feeling that I have, HOPELESSNESS.  “Sometimes suicidal tendencies”..this depends on just how deep my depression gets.  Normally I am not suicidal but I’ll wish I wouldn’t wake up.  I’m just so tired and hopeless, I don’t want to have to deal with it anymore.

Something they don’t mention, I cry, a lot.  I’m an emotional person anyway, but when I’m depressed I cry every day, many times a day.  Not just a few tears, I sob.

There are other feelings that get all mixed up when I feel depressed.  I feel very guilty. What right to I have to feel depressed when there are so many tragedies in the world?  What am I putting my husband and friends through when I’m like this?  Why does it keep coming back, it must be me?

I get angry.  Angry at me, angry at everything.  I try not to speak to people because the thoughts in my mind are so snide.  Why can’t they get it?  Why can’t they do things the way they should?  Yes, in my mind everything needs to go the way I think it should, then I’d be happier.  I want to control, everything.  I think that’s because I feel so out of control.  I lash out.  Some of this must be someone else’s fault, if I can find out who then I will have to feel better.  I feel so alone. I try to isolate myself from other people so I won’t hurt them, even though being alone is the worst thing I could do.  I never said I was being logical.

When depression takes hold of me I used to believe it would never end.  Now I know it will and that helps me get through it. It makes me seek help.  I keep telling myself, “This will end.  This will end.”

I do not just have Clinical Depression, I have Bipolar I disorder.  That means that, unless I’m stable, I will have severe manic states and depressive states.  As I said, I used to think when I was depressed that nothing could pull me out of it, but then I’d be okay for a while and couldn’t believe I ever thought that way.  Then I’d go manic and think that nothing could harm me.  After a manic swing, I couldn’t believe I ever felt that way.  I’m lucky that I’ve been mostly stable for a long time now.  I will have break through depression sometimes and need my medication adjusted.  My new psychiatrist told me that often when people get older they have fewer manic swings but battle depression more.  That’s why he prescribed a drug that is for Bipolar Depression, and it seems to be working well.

If you are having any symptoms of depression please seek out professional help.  It doesn’t just go away.  Psych Central lists the first steps to getting help, and a list of professionals in your area.  You can find this information here.  Where To Get Help For Depression.

If you are having suicidal thoughts please call

The National Suicide Prevention Lifeline 1 (800) 273-8255

 

Blog Posts I’d like to Share

Ok, so I planned to enter more posts I’ve read that made an impact on me, but if you’ve read my last post you know I’ve been going through a mess.  I started this post before I started having the run on vertigo, and I really wanted to make sure everyone saw these wonderful posts.  There is a lot of good information out there and I’m ever so eager to share some of the things I’m learning.  (BTW, I’m feeling much better!!)

Recently I’ve been reading some really great posts and articles on-line and I’d really like to share a few.  I wish I’d written some of this great information.  So please take the time to read:

Markovich Photo Art

Markovich Photo Art

From ADD and So Much More, Madelyn Griffith-Haynie, CMC, MCC, SCAC takes on the subject of Loneliness ins a must read 3 part series:  Part 1 – The Importance of Community to Health  Part 2. –  Sliding Into Loneliness  Part 3  – When you’re longing for Connection

On Living with Hearing Loss, Shari Eberts asks the question Why is it Still OK to Make Fun of Hearing Loss?  If you have hearing loss, know someone who has hearing loss, or simply want understand the hearing loss world, you should check out this blog post and much of Shari’s blog.

Bipolar Barbie-Q takes on how it feels when you are in the throws of depression.  (this is a subject I plan to cover soon myself, but you need to read her post, it’s raw, and full of passion, and will give you a great understanding on how complicated depression is.  I’m the Queen of Run-On’s.

 

I hope you have a good read today.

 

 

 

#WorldBipolarDay 2016

#WorldBipolarDay is celebrated on Vincent VanGogh’s Birthday, who is believed to have had #bipolar disorder.

stary night

This year’s #WorldBipolarDay “theme is “More Than A Diagnosis”, as we want to show the public that individuals who live with bipolar disorder are more than their diagnosis; they are capable of living full, successful lives, despite and in spite of their diagnosis.” – See more at: http://ibpf.org/wbdresources#sthash.TlZ5dveb.dpuf

I have bipolar disorder, formerly known as Manic Depression.  It is characterized by periods of extreme highs and lows that interfere with some or all aspects of a persons life.

According to the National Institute of Mental Health there are an estimated 5.7 million people 18 and over and and 750,000 children in the US affected by this disorder.

The lows include extreme depression.  Sadness most of the time, changes in sleep paterns, appetite and possibly weight. There is a feeling of worthlessness and guilt and an inability to find enjoyment.  A person often has thoughts of death or suicide.

The highs, or manic part of the cycle, include increased levels of self esteem and grandiosity.  The person seeks out pleasurable and risk taking experiences often to the point of danger, including  sexual prowess,  drug and alcohol abuse and shopping sprees.  Mania can also include sudden outburst of violent and unpredictable behavior.

Bipolar Disorder can be treated most often with mood stabilization medications and psychotherapy.

Like all illnesses following a wellness routine is essential.  Stay mindful of your moment to moment experience and recognize the signs of mood swings early.  Be sure to get enough rest, eat well, exercise, take your medications as prescribed, and develop a strong support network.  Often these steps are very hard to do, but it is essential that we take care of ourselves the best we can.

I have never hidden my diagnosis.  I know there are many people who feel they can’t share their diagnosis due to prejudice against the mentally ill.  We should all fight to stop the stigma surrounding Mental Illness.

Always remember we are #MoreThanADiagnosis.  I am a friend, wife, artist, blogger and more.  I am creative, intelligent, loving, compassionate and much more.

The people at the International Bipolar Association “…encourage people who live with bipolar disorder to remember that they can accomplish great things even though they have been diagnosed with bipolar disorder, and to remind them that there is a very supportive community out there for them to reach out to.”

#WorldBipolarDay, all day.

Happy Birthday Vincent!

 

 

Out Of The Darkness

abstract 2 (1)

In the Swirl, by w. holcombe

I have Bipolar I, that means that I have the highs (mania) and the lows (depression) that go with Bipolar.  I’ve been mostly stable for the past 20 years.  However, for over 2 years I’ve been fighting depression pretty hard.  I’ve been on different medications, but I was not feeling better.  I kept thinking it was everything that was happening in my life.  Having vertigo almost every day, losing more of my independence, moving so hubby could have a job after being laid off for over a year, having to have my hip replaced due to Avascular Necrosis, well you get the picture.

I saw a new psychiatrist last month, he took me off of one antidepressant that obviously wasn’t working and put me on another medication.  It is like a veil lifted from over me, the darkness has given way to light.  I no longer cry every day.  I’m feeling hopeful. I feel like me.  OK, now I’m going to cry, from from relief and happiness.

My new psychiatrist told me something interesting, he said that often later in life a person with Bipolar I doesn’t have as many highs they have more depression. (I’m 52, I’ve shown signs of Bipolar since I was a child.)  So he so he decided to put me on a drug that is for Bipolar Depression.  The drug is is “a psychiatric medication that belongs to the class of drugs called atypical antipsychotics. It works by helping to restore the balance of certain natural substances in the brain.”  It has been a month and I’m amazed at how much better I feel.  Even when things have happened that would have upset me, I’ve handled it with ease.  How cool is that?

I’m so very grateful that someone and something was able to help.

I haven’t mentioned the names of any of the drugs because I don’t want anyone to think I’m advertising for it.  If you want to know, I’ll be happy to tell you in a comment.

today is a good day.

one moment at a time.