I have Bipolar Disorder and have talked about it before on my blog. It’s not something I hide but I don’t really discuss it much either so I thought I’d share a bit more about what it looks like for me.
Although currently stable on medication, when I was unmedicated and undiagnosed, I would have the most incredible highs and lows. My manic highs would see me racing around the house, cleaning whatever I could, and cooking dinners every night and baking and crafting and never, ever sleeping…I would be up for days on end without any sleep at all. At my worst, I was awake for 8 days in a row – and I mean without a drop of sleep. I was unbeatable…I would shop online without realizing what I was doing, and then all of a sudden, these packages would start arriving and I would have no clue what was in them – usually jewellery (cheap stuff) or clothing from Zulily (an online store I love).
On the other hand, when the inevitable crash came, I would crash hard. All I wanted to do was curl in the fetal position in bed and sleep…so that’s all I did. I didn’t bathe, I didn’t eat, chores went by the wayside, forget about cooking and crafting. I did the bare minimum to keep my cat alive and my husband had to fend for himself after a 12 hour day at work when it came to eating, plus do the dishes. I rarely left the bedroom, unless it was to spend mindless hours on the computer doing nothing.
Once we realized how serious the problem was, my husband and I realized it was critical that I needed to be on medication. I saw my doctor and was started on Seroquel. After that drug stopped working, I’ve been taking Abilify, which has been excellent for me in terms of managing my symptoms. Unfortunately, the side effects have been harsh and I’ve been paying the price. I am not a vain woman, but I’ve put on 20lbs since using the medication (in 6 months) and it’s 20lbs I can’t afford to carry on my 5’2″ frame. I have no ability to exercise and lose the weight, especially now that I’m wearing an Air Cast on my left ankle to try to help reattach a tendon that has torn away from the bone. Plus I take other medications that all have their own side effects…so I have to be careful with those as well.
I’ve also experienced some other unpleasant side effects including severe brain zaps, and I’ve been seeing shadows on the sides of my vision. These were enough to send me back to my Psychiatrist to discuss making another medication change – the dance that you tango when you have a mental illness. He’s decided to try me on one of the older drugs that is less likely to cause weight gain like so many of the newer ones do. It’s called Zeldox (my family doctor says it sounds like a cartoon character and I agree!) and the side effects listed are as follows:
In general, most of these are mild and go away in the first couple of weeks of taking the medication, so I’m not too concerned. I’m just hoping that the brain zaps disappear as this is one of the most unpleasant of all the side effects that I experience. What is a brain zap you ask?
Brain zap or brain shiver is a term used to describe the sensation of a sudden jolt or buzz in the brain. It is also compared to the electrical shock, has no apparent cause and is brief in duration. In most cases, it’s relatively mild but people have reported the occurrences of very extreme and painful jolts. They are a temporary occurrence. Brain zaps can sometimes be accompanied by dizziness, tinnitus, mild pain and ache and a general sense of discomfort.
I experience mine as a buzz that goes across my head from ear to ear. I can hear the loud buzzing sound as well as feel it, but there isn’t any pain. It’s almost like the hum of an electric razor, but very quick and sudden. Sometimes it’s just one zap, sometimes it’s a series of them. They’re mostly just annoying more than anything but a side effect I can do without due to their frequency. The shadowing I’ve been getting in my vision is more worrisome as I tend to freak out about anything to do with my eyes. I have no eye problems (other than wearing glasses) and I’d like to keep at least one body part in good shape for as long as possible if you know what I mean!!
I start the new medication on Monday, Dec. 17th but am writing this post to be read in February so I’ll add an update underneath so you know how it’s going.
Bipolar Disorder can be tricky to manage but with the right care, the proper medications and taking them at the right times, it can lead to a normal life. I’ve found the perfect balance between mania and depression. Now I’m able to function most days with the cooking and cleaning when my other health issues allow it and my poor husband can come home to dinner waiting most of the time. I feel more likely to work on a craft than when I was in a depressive crash, and while my sleep still isn’t the greatest, I’m not staying awake for days on end either.
Sometimes called Manic Depression, Bipolar Disorder causes extreme shifts in mood. People who have it may spend weeks feeling like they’re on top of the world before plunging into a deep depression. The length of each high and low varies greatly from person to person. If you are experiencing these symptoms, please see your doctor. There is help available and beyond that…
I thought I’d start out the year with a refresher course on the conditions I live with and how blogging has had such an impact in my life. Because of my blogging, I have had chances to be interviewed in a Canadian National newspaper, on two different podcasts, and several different articles online. The various conditions I write about are because of the fact I live with them and am personally acquainted with them. So, without further ado, here we go:
So I’ve talked about my Chronic Pain from Fibromyalgia and Osteoarthritis, and when I say I have arthritis in all my major joints, I’m serious. I have it in my shoulders, elbows, wrists and fingers, my cervical, thoracic and lumbar spine, left hip (right hip has been replaced), knees, ankles and toes. Some areas like my left hip and right knee are quite serious and will need replacing, but the rest I’ll have to live with.
Meanwhile, my thoracic spine has a different type of bone condition called Forestier’s Disease or D.I.S.H., which stands for Diffuse (Widespread) Idiopathic (Of Unknown Cause) Skeletal (Referring to the Skeleton) Hyperostosis (Excessive Growth of Bone). It forms in the shape of a bone spur, but instead of a normal spur that could be removed, it looks more like melted candle wax on the spine, so nothing can be done about it.
I also have regular bone spurs on my right hand – I had one removed from inside my pointer finger as it grew through a tendon, and there is a second one on the outside of my middle finger growing through the knuckle. Both have been very painful and interfere(d) with typing and writing.
My Type 2 Diabetes has been with me for 8 years now and is mostly under control. I go for regular blood tests every 3 months, to get my A1C numbers that show my average blood sugar levels for the previous 3 months. Generally speaking, I average around 6.9 to 7.2 which is slightly higher than the 5.9 – 6.2 my doctor would like, but I do my best. I use long acting insulin at night, 14 units which does a good job at helping to keep things under control. I’m trying to eat better, but I’m a sucker for sweets and it’s hard to be disciplined.
So, what else is on that list. Ah yes, the ever lovely Gastroparesis
Now, the way they determine if you have this or not is through something called a motility test. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die to having to feel better in order to die.
On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of it, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.
The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!
The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked my doctor if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try to exercise a bit more.
The Internal Pelvic pain is because I have had a number of pelvic surgeries over the years, so there is a lot of internal scar tissue left over that has attached itself to things like my bladder and bowel, etc. There are occasions when I move a certain way, and those adhesions stretch very painfully – it feels like velcro being ripped apart except it’s my body doing the ripping. It takes my breath away sometimes, it’s so painful, but it only lasts for a minute or two, then it’s gone.
Which leads to Hypothyroidism. For a long time, I assumed that Chronic Fatigue Syndrome was the only reason for my constant exhaustion, as my Thyroid numbers always came back normal on blood tests done every three months. One day though, my thyroid went rogue and those numbers were crazy. I had been especially tired…like dragging my ass tired, needed toothpicks to keep my eyes open tired
Oohhh, that is NOT a good look on me!!! My doctor put me on meds and I could feel a difference in a very short period of time. On my next 3 month course of blood work, everything was back to normal, so now I take Synthroid on a daily basis for the rest of my life, to ensure I have a properly working system. So glad that was an easy fix!!
So there you have it. It’s a tough road to walk, I have to be honest. I live with pain 24/7 and have for almost 30 years now. Suffice it to say that you have to be mighty strong to live like this, to get through the day-to-day of actually living in pain. I know some people who just couldn’t. They tried so, so hard, but in the end, their pain was too much for them, and they took their own lives.
I’m a huge advocate for assisted suicide for people who live with severe, intractable pain. We take better care of our pets when they are hurting than we do our humans, and I think that is just plain wrong. I believe every human has the right to choose to die with dignity and I’m glad our Government has come on board with this. I know it’s not perfect, but at least things have started and that’s the main thing.
One thing having all these conditions HAS done though is that it’s given me a platform to blog about them and to discuss them as a Patient Partner in my volunteer work. I live in Langford, BC Canada and I belong to an organization called Patient Voices Network. They help take the voice of the patient and partner us with Heath Care Organizations who need Patient Advocates for the work that they are doing. I’ve been involved in committee work, focus groups, conferences, quality assurance forums, seminars and more because of PVN. The educational experience I’ve received is on par to anything I attended in my working life and in fact, when I attend anything in their offices in Vancouver now, it’s like being greeted by family – I know everyone and they all know me, I’ve been there so often for meetings.
I currently sit on 4 different committees: I am a member of the PVN Oversight & Advisory Committee, I currently sit on the Clinical Resource Committee for the BC Emergency Physicians Network , and I accepted a role with the Laboratory Quality Council Committee. We are responsible for all Labs on Vancouver Island as well as all Medical Blood Collection Stations.
Most recently, I took on a new role as committee member on the Measurement System for Physician Quality Improvement- Surgical Group. I am surrounded by top surgeons in Cardiac Care, Orthopedics and Neurology, plus high-ranking members from the Ministry of Health, the BC Patient Safety & Quality Council and other Health Organizations – and then there’s me. The lone patient voice to represent the masses. It’s a huge responsibility and one I take very seriously. I’ve already spoken out to let them know that while they see quality one way, I as a patient see it differently, and I expect my voice to be heard. It was empowering to have them tell me that I am the whole reason the others are there, because it’s all about the patient in the end.
So all this adds up to some pretty amazing experiences for me because of the pretty extraordinary pain that I live with on a daily basis. I have been truly blessed in my life, and I’m fortunate to be able to share it with you, my Dear Readers. Thank you for taking this journey with me. I hope to bring you more articles this year about Chronic Pain, Chronic Fatigue, Fibromyalgia and other Invisible Illnesses. And remember…
Mental Health Advocates Share How To Prevent Suicide in 60 Seconds
What would you say if you had 60 seconds to talk a stranger out of taking his or her life?
I was flipping through my new SoulPancake book when this question jumped off the page.
What would you say if you had 60 seconds to talk a stranger out of taking his or her life?
I froze and my mind went blank. This can happen in my lifetime and I didn’t know what I would say.
So for this National Suicide Awareness Week, I’ve asked some mental health advocates to answer this question.
I hope you will never need the suggested responses and tips below. But if it happens, may they help you save a life.
Here’s What They Shared
“The pain you are feeling must feel overwhelming but If you live another day I will show you that life can be better than what you are living.” — Saaim Ali
“I can’t promise you it gets better. I won’t tell you sunny platitudes or promise you rainbows.
What I will do is ask you stay, because you’ll never know what’s ahead if you don’t.
I will do my best to help you look for the rainbows and walk in the rain with you until you can, because I’ve been there, too.” — Selena Marie Wilson
“What you’re considering doing is a permanent solution to a temporary problem. Whatever it is — I promise to help you to resolve it — but we can’t do that if you’re dead.” — Kathy Reagan Young
“ I have been where you are. I know it feels like there is no other way out, but there is hope. People care, I care. Take my hand, I will walk with you through this. Your loved one will be lost without you. One step at a time, one minute at a time. We can do this together. You are not alone.” — Crystal Fretz
“I’ve been there, and I just want you to know that even though it doesn’t seem like it right now, at this very moment, there is hope. You are loved. If you can’t think of a single person who loves you, know that God loves you. I love you because you are a beautiful creation of God. I’ll go with you to find help. I’ll stay with you until you feel safe. You are not alone.” (coupled with questions about the person and things they like/dislike, points we may have in common, and non-threatening body language — adopt the same gestures they use, sit and or stand in the same posture — mirror them so that they can feel the empathy and love). — Anita Ojeda
“There’s a whole bright, beautiful world that needs your spirit in it. It feels dark, lonely, and hopeless right now, but it’s not. There’s help for you, there are people who care about you, and you are so, so much more valuable than you realize. Let’s talk about what resources are available and which one you think will work for you, and I’ll help you make the call if you want. You’re not alone. I’m here to help you. It will get better.” — Olivia Sod
“Trust me I understand how you feel, I’ve been there myself. But hang in there. Sometimes it doesn’t make any sense, but just hang on. Hang on. Hang onto life.” — Sheryl
“A lot of times, people who commit suicide believe the people in their lives would be better off without them, so I’d tell them they wouldn’t and I know. My brother committed suicide and it was the worst thing I have ever experienced. I’d tell them there would be way more people than they realized that would be impacted by this choice and there were more people that cared about them and wanted to help than they realized.” — Rosanne
“As worthless and hopeless and terrible and dark as you feel, this isn’t the end of your story. You can have light and hope and worth and joy. Don’t make a permanent choice that will affect your family and friends long after you’re gone. They need you, whether you think they do or not. You need them, too. Cling to the life God’s given you, even if you have to hold on by your fingernails and it feels too hard. This isn’t the end of your story.” — Anna Huckabee
“Keep them talking basically. When it came down to it and my friend threatened to jump off a multi-storey car park, I told him that if needed I was going to rugby tackle him and sit on him until the police arrived and could restrain him properly (they were already on the way anyway). Probably not the most official way to deal with it but while doing it, it kept him focused on me and talking to me rather than the other things that were going on. My friend has since been diagnosed with a version of Bipolar rather than depression. Unfortunately, it took a number of years to get past the diagnosis of depression or stress.” — Hannah
“What can I do to help you? (And I would start to tell them about my mother and ex-boyfriend and how they took their own life and that it’s okay to ask for help.) Everyone needs some kind of help throughout life. Just let me try to help you.” — Chasa Fulkerson
“The pain you feel right now? If you allow it to end your life, the same pain will attack your family and closest friends because they will miss you. After you are gone, the pain will be allowed to grow bigger and bigger! Let’s fight this together now and end the pain, but keep your life. You DON’T want to suffer through all this darkness for nothing, do you? Because on the other side of this darkness, this grief, this pain is something worth living for joy and hope. Let’s find some of that for you! I have a list of great resources!” — Chris Moss
“Listen, I’ve been there too. Right where you are. 10 years ago. So much can change in the next year for you. Don’t convince yourself that there’s no hope. That’s a lie from the pit. You have a gift and worth and value, and the devil is trying to keep you from giving it to the world. God cares about you and loves you, and has plans for you for a purpose and good. It doesn’t matter what you’ve been through or done, there is hope for a happy and joyful life! Come with me. Please let me tell you my story.” — Abby Karbon
“This may be hard to hear right now but you are worth so much, just by being the only you in the world. You will be making a decision that you can not take back while going through emotions that will very well pass, even if it takes a little work. You are not alone, even if you feel like it. There are millions of people who feel just like you. Talk to me. I’m here to listen. I’ll never shut you down. You can trust me. I know what it’s like to feel like the world would be better off without you. Don’t listen to those negative thoughts. You are worthy and you will get through this.” — Cortney Kaczmarek
“You are needed. You are necessary. You are loved.” — Barbara Moore
“That life will be good again soon and that it’s an illness causing all the pain. They can get better and they can enjoy life once more they just need some help.” — Hazel Jackson
“Hey there, I know you don’t know me but I’m here and I care. Please just come, talk to me, let’s get a coffee and restart. You won’t be able to take this back. I get it but I also just want to know your story, I don’t want this to be an end to our conversation. All the things you are feeling must be overwhelming so let’s just calm down and breathe. We can talk when you’re ready.” — Emerson
“Being on the other end of it, I was told ‘it’s not worth it. This will pass and I will stay by your side and be there always.’ And that person to this day is still always by my side making sure I’m okay. And this was a few years ago. — Hailey Giambelluca
“You are loved. You are taking an easy way out, but what about the ones that love you? What about the ones that fight for/with you? We would be slowly dying inside if you were not here!” — Angel
“I can’t tell you what to do but I see you and I care. You’ll leave a hole in the universe that no one else can fill. This world is more meaningful with you in it. Please sit with me and tell me where it hurts. I’m listening.” — Emma Frances
“There is help out there. This solution you are considering is permanent. There is no coming back. You may feel you’ve tried everything, but there are specialists that can ease your suffering. There are many options available to you, and I will help you each step of the way. The symptom of suicidal ideation leads you to believe there’s no other hope. I can attest as someone who’s been in your shoes there is. And I’m glad I didn’t make that permanent choice. So please come with me and we can find help right now.” — Ben Barrett
“Give me your hand. Come closer. *if okay I’d give them a hug* I truly do understand this feels like the only way — I’ve had the same thoughts and experienced it with a loved one. I’m not going to tell you the usual things …the things you know. Just, remember that there is hope. I’ll come with you. I’ll help however I can, even if it’s just to listen…I will not judge you for your experience is yours and must be heard. Give me your hand.” — Eleanor Catalina Stevens
“Up close it’s hard to see a way out or the greater plan, but everything always works out in the end. So many people find times in their lives hard, but keep going and when you look back, you will see that it was all part of a greater plan.” — Laura P
“Let’s get you help! Who knows, you can overcome your depression and help others who are struggling, one thing is certain we need people who understand us, come with me, we’ll get you help, we’ll keep trying until you find a therapist you are satisfied with.” (this is just a note that I will help him/her get the help they need even though I don’t know them and they don’t know me). — Jazz Williams
“Things do get better. There are brighter days ahead but you have to stay here to see them. The world needs what you have.” — Wrae Sanders
“It’s okay to not be okay. And it gets better. Just stay. Use your voice to breathe life into a conversation that must be had. You are worth more than making a permanent decision based on a temporary emotion or thought. You are loved, and you can rise up once again.” — Maria Thomas
“You matter. You have people who care for you and will miss you. Your death will not relieve anyone else of a burden or make someone else’s life easier. Hold my hand. I am here for you and the journey ahead. It will get better.” — Teresa Colón
“Choosing to live, even though you are in deep pain, is courageous. That choice will help you take a step out of the darkness and into the light. That choice will prove to the world that you are stronger than your pain. That choice will prove to your pain that you are ready to fight back. That choice will begin your path to the help and support you need. I am here, talking to you, which proves to you that I care. I want to help you. And I will lead you to another person who will help you. And that person will lead you to another person who will help you. And another. And another. That path of people will be there for you as long as you need them. That path of people who care about you will lead you to safety, kindness, strength, and love. Take my hand right now, and let me help you start that path toward love.” — Kate Johnston
“Life is full of challenges, but that’s what teaches us to appreciate the good stuff. Today might be a challenge, but we’ll figure out a way to make tomorrow better. You matter in this world, and you are loved.” — Christalle Bodiford
“Think of those who love you and how it will destroy them to see you go my friend come with me to a better life.” — Robin Tomlin
“I would say that this is a very permanent decision for a temporary problem and ask them to talk to me, no matter how long it takes until they realize that someone cares. I would also tell them that there is always hope, that things can get better and that I will support them in getting the help they need to find their happy again.” — Pamela Jessen
“I know you think this is the only way to make the pain end. I don’t think you want to die. I think you’re just tired of living I’ve been there. I UNDERSTAND. I think you want to end the pain and suffering. I understand. But, don’t make a lifetime decision on today’s emotions. Emotions are fleeting. You might feel worthless. I bet you think you’re a burden or nobody will notice you’re gone. I would. I noticed one of my best friends every day is gone. I will be here for you. Keep talking to me. I will talk to you as long as you need to talk. I will be here for as long if you need me to be. We will get you through this together. The world needs your story to continue. You are destined for greatness.” — Jamie
“I would answer that ‘Hi this is Roger’ and if they said ‘I want to kill myself’ I would ask why and let them answer — then depending on what they said and how they said it — I would either ask them a few more questions or engage in a conversation letting them know that I was there and would listen and that I wanted to help — then let God be the Guiding Force while letting them know that I cared and they were precious and worthwhile.” — Roger Potter
How about you? What would you say if you had 60 seconds to talk a stranger out of taking his or her life? Let us know in the comments below.
What a powerful post, Mary!!! Thank you for allowing me to share it on my blog. As I always say:
There Is Always Hope.
I’ve just had a new piece of writing published on the Pain News Network as a guest columnist. I wanted to write about how we grieve when we lose so much of our lives to a diagnosis of Fibromyalgia, Osteoarthritis, MS, Ehler-Danlos, Lupus and other Invisible Illnesses.
Now, I saw information about the Pain News Network on the blog of someone I follow. I looked them up and saw that they accept articles from guest writers. I contacted the Editor to see what the requirements were and he told me that basically anything to do with real life and pain, as long as it hadn’t been previously published. So I sat down, thought for a few minutes and literally banged this out. He thought it was good enough and voíla, it was done!
Here is the link, and I would love your thoughts about it in the comments below. I guess I’ll have to update my “I’ve been published” section…this is my first publication outside of The Mighty!!!
I’m so excited and I’m really damn proud of myself!
There is always hope!