I’m Not Feeling The Greatest

Mental illness is difficult, as I and many of you all know. When physical symptoms come in, it can be even harder.

Lately, my mental health has been wonderful. I haven’t had too many mood swings and my hallucinations have barely bothered me. Paranoia is still present, but that never seems to go away. I am happy to say that I am feeling good.

However, my physical health has gone downhill. I’ve had headaches nearly every day for the last few months. I’ve become dependent on painkillers just to get through the day. Some days it is just a small pain in my head that a small rest can get it away. Other days it  is so unbearable that I have to take pills and sleep for hours and it still doesn’t go completely away.

I’ve also had stomach issues. I am diagnosed with irritable bowel syndrome, which is not a fun thing to deal with. My appetite has been smaller as well. Sometimes the smell of food makes me feel ill. I’ve had moments when I mistook my nausea for hunger and have eaten something just to feel even worse.

Fatigue has been haunting me as well. I feel weak and tired nearly all day. Most days, I sleep for a long time and don’t feel any better. I sometimes wonder if I am sleeping too much, but I can’t stay awake some days for more than a few hours. Some days it is better and I only rest a little bit.

I’ve told my psychiatrist about these symptoms. He suggested I get a blood test done, but has never actually given me an order for it.

I’m not sure if this is a side effect of one of my medicine, or if my mental illness is causing the symptoms. I also don’t know if something is physically wrong with me.

I hope this pain goes away soon. Maybe once the medicine fully kicks in it will go away, or maybe it will just take some time. I’ve been told it could be allergies or a bug, but I’m not sure if it is either of those. I doubt it’s a bug, as it has been around for a while, but allergies are a possibility.

Sickness is never a good thing, and I hope I figure out what is causing it.

Am I Schizoaffective or Bipolar?

“If there were 10 psychiatrists, five of them would say you had schizoaffective disorder, and five would say you had bipolar with autism.”

This is how my psychiatrist appointment came to a close today.

My appointment actually went pretty well today. I didn’t breakdown, and I was completely honest. I’d say that those are two check marks on my report card in psychiatry land. My appointment had been set for this afternoon, but then got changed to 8:40 this morning due to my doctor having to switch his plans around.

I got to the appointment and was the second person in there. I had to pay today, which I normally don’t have to do. That was a little frustrating, as I had to learn how to use a card with a chip on it. It ended up being easier than swiping, so I was happy about that. I then sat down and waited.

Normally, I have to wait for a few minutes in the main waiting room, and then move to the comfy couch waiting room to wait for my doctor. Today, I didn’t have to wait with the comfy couch as I was his first patient of the day.

I went in, and he asked me all of the typical questions. “How are you?”, “How is your mood?” “Can you feel any changes from your medicine?” and so on. I answered as truthfully as I could.

He adjusted my medicine, increasing my newest one and decreasing an older one. We are working on getting me down to two or three medicines instead of six. That will be nice, not having to take so many pills a day.

I then brought up that he had put the wrong diagnosis o my check-out form again. He responded that I had to have my diagnosis say that so I’d be allowed to take the medicine I was recently put on.

I asked him if I actually had it, and he told me the statement at the beginning of this post. I wondered why that was the case. I guess every doctor has different views. I asked him if he thought I had it, and he stuck by his five this and five that answer, so I really don’t know what my diagnosis is.

It shouldn’t matter what the diagnosis is, but I would like to know. Maybe someday my doctor will know better and have better insight into my disorder. It would be comforting to have a name to my illness.

Schizoaffective or Bipolar, I am still the same person. I do want to know, but it doesn’t really change who I am. No label will define me.

Simply Schizoaffective

I’ve had all sorts of diagnoses throughout my five year mental health journey. For a while it was anxiety and depression. After a few hospital stays, I had gone through obsessive compulsive disorder, psychosis and borderline personality disorder. When I started going to a psychiatrist at the local community services board, she stuck with depression and anxiety for years. I was sick of not knowing what was going on with me.

As you can see on my hospital online portal, at my first adult hospitalization I went between borderline personality disorder and schizoaffective disorder. This was eventually changed to Bipolar I disorder. I have had this diagnosis for months now.

Yesterday, I looked at my checkout sheet and expected to see Bipolar 1 and Autistic disorder, like always. Then I looked again. The bipolar disorder was replaced with schizoaffective disorder, chronic with acute exacerbation.

I’ll break down that diagnosis for you. Schizoaffective disorder is when a person has symptoms of both schizophrenia and a mood disorder, but do not meet the DSM criteria for either of them. The mood disorder can either be depression or bipolar type. I believe I have bipolar type, which means I experience bouts of mania and depression. Schizoaffective disorder is not well understood.

Chronic with acute exacerbation simply means that the disorder lasts a long time, but is currently worse than when an episode is not happening.

My doctor asked me a lot of questions yesterday about symptoms of schizoaffective disorder. I didn’t realize he was doing that, but after some research I know why he did. I have most of the symptoms of bipolar, such as mood swings between mania and depression. I also have several symptoms of schizophrenia, at least according to some testing I had done. My parents had been told to be on the lookout for signs of schizophrenia in me. I guess the mix of the two disorders makes sense for me.

My blog name is Beautifully Bipolar, and will stay that way, but I guess you can now ca;; me Simply Schizoaffective as well (even though it isn’t that simple!)

A Great Psychiatrist Appointment

 

I just got home from an appointment with my psychiatrist. I haven’t been feeling the best lately, and was looking forward to this appointment. The coming date was nerve wracking as well.

Sometimes I see my doctor monthly, or every two weeks. Lately, I’ve had to go every week due to my mind being out of control, and his goal is to help soothe it. I’ve been having mood shifts nearly every day, multiple times a day sometimes. My hallucinations, as I guess they are,  have been getting more frightening with each one. Paranoia is attacking me, as I suspect I am going to be attacked by every person in the outside world. It’s been difficult to say the least, and this list is just getting started.

My last appointment with my doctor scared me. He told me he was going to add me on a new medicine he would have to have my parents approve for me to take it if my condition didn’t improve. As the week went on, I tried to make myself feel “normal”, and at times I felt just fine. I also had many mood shifts and things were not getting better some days. I was terrified of being put on this new medicine that sounded like it could cause some serious side effects.

I went to my appointment today. It didn’t start too well in the waiting room, where I was called back around 15-20 minutes late. That was stressful. After I got called back, I got was weighed and had my oxygen checked. I was thrilled to have lost some weight, as I have been eating a lot more lately due to my condition. Then I went to sit in the comfy room, as I call it. It has a big squishy couch that I enjoy to sit on. Then, my doctor called me into his office.

It started with me telling him how I was feeling, and what my symptoms were. We also talked about “Suicide Squad” which helped me feel a little more at ease. He decided not to put me on the scary medicine, but instead a small dose at bedtime of Depakote. I hope this will help.

When it was time to leave, I was told to come back in a week. I made my appointment, and asked for my visit summery so I could have my list of medicines. When I looked at it, I saw something I wasn’t expecting. I had a new diagnosis. There was no more bipolar 1, but instead schizoaffective disorder. Schizoaffective disorder has symptoms of both schizophrenia and bipolar disorder or depression. Mine is the bipolar type.

I was surprised at first, but then I thought more about my symptoms and realized that it could be right. I wish my doctor had told me he had changed my diagnosis, but I hope the new medicine helps with the mood swings. Maybe the new diagnosis will help figure out what I need in therapy as well.

Overall, it was one of the best doctor visits I’ve had. He listened to me fully, I tried to give a full explanation of symptoms, and admit when I didn’t understand my own symptoms. He even threw a little personality into the appointment.

Even though I was scared, there was no reason to be. I am not on that medicine, and I have a little more insight into the part of my that is schizoaffective.

Banging Heads And Breaking Hearts

Trigger Warning: Self Harm

 

Freaked out girl in a hospital gown

Mattress pulled out after a breakdown

Slept by the nurses who talk all night long

All while I was thinking, soon I’ll be gone

 

Banging heads and breaking hearts

Everyone could see I was falling apart

Gauze on my wrists, taped and pure white

Pulled them off,  told myself it is all alright

 

When the gauze turned from white to red

They taped it tighter so no one saw that I’d bled

I loosened the tape and pulled until it fell down

Bigger pieces don’t do squat when no one is around

 

Banging heads is a version of self harm

Bruises on head, scars on my arm

Eyes and ears trick me, say I’m just stressed

Fire beneath me, but they say I’m depressed

 

 

Moved on to the short term side

Where they thought I’d be just fine

Think again, doctor, filling with pills

Just fine, two words that mean I am ill

 

 

If ill is the bottom, how did I dig so deep

Underneath the surface,  I find the old me

Reaching out for someone to ask

Is the past yours, or are you your past?

 

Being carried to the quiet rooms

Always felt l was in a tomb

Crying as they locked the door

Gave up sat down on the floor

 

Velcro and a needle filled

With each kick my dreams were killed

Breaking free from loose restraints

As drugs made me have no complaints

 

The part of me I’ve pushed aside

Victory is  once again mine

Never again will I get that low

Step back and let the feeling flow

 

Bumpy Pothole Ridden Road- Sharon

This topic is very near and dear to me because of my own personal experience living with mental illness. I suffer with an array of mental illnesses and have just recently found out I mayhave been misdiagnosed or not fully diagnosed. I ‘ve been to some of the best Dr.’s and a myriad of therapists over the years.

 

Each and every one of these mental health professionals has, at the very least, given me food for thought and a long list of meds that do NOT work and those that kind of work and thosethat work but then stop working and I think you get the idea.

 

We all know our own bodies and minds well; we just need a mental health professional who actually listens to us. Have you ever tried to explain the wild hatter ride going on in your mind to someone who is sort of kind of listening but seems as if they have already made their diagnosis? I have and it’s terribly frustrating. You have so much to convey but the very nature of the illness takes away your voice. You feel as if you are rambling, or not making sense and they seem to be barely able to keep their attention on  you. Those who suffer as I do know that exact moment where the pain and frustration overwhelm us and the tears start to flow. The Dr./therapist hands you the tissue box and waits with an expressionless face as you try to gather yourself and your thoughts. Before you know it, Times Up!, and off you go with a few extra tissues for the ride home and another frustrating visit is over. Don’t forget to schedule the next one before you leave.

 

I used to think of my psychiatrist as the final word on my mental illness. As time wore on and I do meantime, as in years, I was at a point of spinning my wheels. Three months of trying a med, doesn’t work, go two weeks without any meds, try a new one and on and on until ad nauseam.

Another frustrating few weeks until the next visit where I would ask, again and again, why am I not getting better? Why the meds aren’t working and will an increase in dosage really solve the issue? I’ve had good therapists, bad therapists and one downright weird one who thought a metal singing bowl would help. Seriously, I almost busted out laughing during that special moment. It only did one thing, made my ears ring the rest of the day.

 

Support is very important and I am thankful that I have good support from my daughter, and a good support person is a must with this disease, whether it’s a friend, family member, coworker, etc. we all need someone who listens and doesn’t judge but also is strong enough to say the tough things that sometimes need to be said and to also guide us toward the help we need.

 

My daughter finally convinced me that the Dr. and the therapist I had been seeing for years weren’t helping me. My mental illness was not being managed and I was in an ongoing circle of new meds, no meds and non‐working meds. I have tried mindfulness, meditation, praying, reading, etc. You name it I’ve tried it. Everything short Electroconvulsive therapy (ECT), which quite frankly scares the bejesus out of me. Although I admit I know little about it and its effectiveness.

 

I was working at a great job when my mental illness decided to rear its ugly head and came back with a vengeance, I went out on disability as my job required a level of thinking that my mental illness was not allowing and an ability to handle the stress of the job which again, my mental illness was not allowing. My managers and HR Reps did not come through with the support I hoped they would and what I thought they were legally bound to give. That is another story for another day.

As I travel this bumpy pothole ridden road of life with mental illness I have a few pointers to share that came as a result of the bumps and bruises I sustained along the way.

 

If you feel that your doctor/therapist isn’t listening to you, trust your instinct. They probably aren’t and it’s time to seek someone else. I know how hard it is to find a new mental health professional and the thought of once again for, what feels like the millionth time, retelling your story. The effort can and will pay off when you find someone who listens and someone who takes the time to diagnose you correctly.

 

Tell someone you trust about your concerns, have them give you honest caring feedback

 

about your next step and ask if they will go with you. Even if they just sit in the waiting

 

room while you see the mental health professional

 

Trust yourself and your instincts. I know I mentioned this one first but it is worth

 

repeating. You know yourself better than anyone, if you don’t feel like what the Dr. or

 

Therapist is saying or prescribing,  is working then ask about what is available to try.

 

Make sure you are comfortable with their diagnosis, read everything you can get your

 

hands on about your particular illness (s) if their diagnosis doesn’t seem to fit how you

 

feel then question them. If they don’t listen or feel as if their word is the final word

 

because after all they have the degree then it’s time to find a new doctor.  

 

Lastly, BE HONEST. Tell them everything about how you feel and what you are thinking.

 

Tell them if you are abusing drugs or alcohol to get you through the day. It truly can be

 

the difference between managing your illness or slogging thru life one day at a time and

 

wondering if you can make it to another day alive.

 

Helping People Helps Me

Working with special needs children has always been a love of mine. My love of helping these amazing individuals when I was about 13 years old. I had not been around many people with special needs, except for a woman, who I love, at my church. She has down syndrome and is the most loving individual you could ever meet. She makes little cards during the church service that say “I love you” and gives the best fist bump you will ever receive. Other than her, I had not been exposed to many people with special needs. Then, I found out about a place called Ride With Pride. The whole concept for the place is phenomenal. It is a horse barn for people with special needs.They not only learn how to ride a horse, but how to take care of one. It improves their self esteem and teaches them how to be independant. I loved the idea, so I applied to be a volunteer there. Working with those children was one of the best things I have ever done. Some were autistic and some had physical disabilities. Others had trouble with social skills. I remember one girl I worked with. We connected immediately, which is a big deal. She had trouble with social skills and anger. It was difficult for her to open up to people, but we grew close. I don’t know a lot about horses, but helping her come out of her shell was one of the most beautiful things I have ever seen. I have since stopped working there, but her smile and hugs stick with me.

When I was hospitalized at the beginning of my journey, there was a boy, probably about 15. While he was older than me, he was severely developmentally disabled. I loved that boy, in the way that I wanted to help him as much as I could. The only person at the time who he would listen to was me. He had an obsession with “guns” and would “shoot” them all of the time, pretending with his arms. Nobody could get him to stop, but I finally figured out a way. I would pretend to call the cops with my hand. I’m not sure that he realized that I was not, but he responded well. I could get him to listen to me and do what he was supposed to when nobody else could. He was a very special boy to me, and I will always remember him.

During another hospital stay, there was a girl about a year or so younger than me. She was socially awkward and possibly had Asperger’s syndrome. I’m definitely not a doctor, but she showed many of the characteristics. These were not flaws though. They made her better. First of all, she was obsessed, and I mean OBSESSED with Rihanna. She could talk about her for hours if you let her. During her most hyper moments. you had to get her to stop if you wanted to talk about something else. We had a lot of fun together, and she listened to me. Her hugs were amazing, because she didn’t give them to many people. They came sparingly, but I loved them.

Another moment I remember is going to an assisted living home with my grandmother. It is a place for people with disabilities and folks who need a little extra help getting back on their feet. Halloween was the first time that I went. We threw a party for them and met several of the people. They would tell you their stories, and one man stuck out to me. He was a man who could not talk very well and was in a wheelchair. That did not damper his personality at all. He told me his story about how he had been in a car accident and had gotten badly hurt. It makes you think about how you are when you are in a car. He told me to always make sure I am wearing a seatbelt. I always think about it and him when I get into a car. When I went back for Christmas, he remembered me, and we talked some more. I loved the other residents as well. We gave them presents, handed out food, and and Christmas carols with them. It was a great experience.

A job with children that have special needs would make me extremely happy. Music journalism is still my number one goal, but for the time being, I am planning on pursuing a major in psychology and go to graduate school either to get my doctorate in occupational therapy, or a masters in Applied Behavior Analysis. You might not have hear of one or both of these things, so let me explain. Occupational therapy is the job of helping people live their daily life. You might help a geriatric patient learn how to get in a bathtub, teach an autistic kid social skills, or help people with mental illness manage their emotions among other things. The job basically helps improve a patient’s quality of life. Independent living is the main goal for the people you help. I had an occupational therapist work with me while I was at a hospital, and that really showed me how much I loved the job and what it did. Below is a video to show you a bit more about the career:

http://https://www.youtube.comr/watch?v=D9yQJZI6kEw

Applied behavior analysis is a little bit different. For starters, the technician works mainly with children with autism. You help the child end their problematic behaviors and reward their positive ones. Getting the child accustomed to daily life is the hope for every ABA. Both jobs seem like a good fit for me. A video is below to show you more about ABA:

I did not write this post to brag about how I am good with those with special needs. I wrote it to talk about my passion for helping others. My goal is to share with you my hopes for the future. Occupational therapy has been an option for a long time, while ABA has been around much shorter for me. I believe that occupational therapy is higher up on my list, but I am still considering ABA, as it sounds great as well. Decisions are difficult for me, but I have plenty of time. That is good, as I have switched ideal jobs many many times. I will figure it out, but until then, I will explore.