Thursday, November 26, 2009
Physically and Mentally Ill: Will this pain ever end?
Despite being so exhausted I cannot sleep, which makes me even more exhausted. I am also getting more and more concerned about my physical symptoms, because they seem to be getting much worse and I seem to be getting more symptoms. Last night as I tried to get to sleep I remembered that around the time my hands started to hurt/lose mobility I had used an powerful insecticide throughout my house, because a friend of mine had discovered an infestation of bedbugs at their house.
Although I never saw, and have never seen (thank god), any bedbugs at my place I was concerned some may have been introduced into my home on the clothes/shoes of my friend, so as a precaution I sprayed my place... (a lot...I was freaking out as I have a phobia of bedbugs and lice). I opened all my windows and door while spraying, but numerous times while spraying I was overcome by the fumes. Last night I started worrying that I have poisoned myself with the insecticide, and that is the cause of my symptoms.
On some level I know I should not try diagnosing myself, and should wait patiently to see the rheumatologist in mid-December...but I can't stop worrying about what is happening to my body. I just can't manage being physically and mentally ill.
My mood is also extremely low right now. Despite trying to push myself to do things I have cancelled my choir, and my singing lessons this week, because I feel so depressed and physically ill. I am so tired of trying to get better and failing so miserably. I'm not sure I can manage this much longer.
Tuesday, November 24, 2009
What Does a Depressed Person Look Like
He says, act like they are watching you and do it anyways. I have tried really hard to do just that, but my worries about the insurance company misconstruing my joy in the moment, with wellness, and my ability to return to work, keeps me feeling terrified about doing things. It seems I may be worrying for a reason.
Over on Shrink Rap there is a post that will scare the hell out of anyone who is depressed and on disability. It tells the story of how a woman placed photos of herself on facebook showing her having fun and vacationing. Her insurer removed her from disability benefits for her depression partially based on how happy she appeared in her pictures.
The article made my me outraged, but it was the 668 comments after the article that made my blood bubble and boil. I could not believe how little so many people understand about what it is to live with and try to survive, and recover, from major/clinical depression.
I organized the comments by "agree", and the fourth most common agreed upon comment was:
- 525 people agreed: "...it is clear this woman is a scam artist".
Not far down the page were more unbelievable "agree" comments...
- 262 people agreed, "...I hate to be cruel but from the facts presented, I'm leaning towards support of the insurance company's side. If she's ok to take trips, have parties, and go bar-hopping, how is she not ok to report to work every day? "
- 212 people agreed..."Oops, looks like you got caught to me !!! Back to work we go....like the rest of the depressed workforce of today"
- 143 people agreed..."This woman sounds like a real go-getter"
How is it "clear this woman is a scam artist"? She posted pictures of a smiling self, enjoying the company of friends and a vacation on the beach. Do depressed people never go out with family or friends? Does major depression always preclude smiles, laughter and enjoyable moments on vacations?
I know for me, smiles come easily sometimes, and must be forced or faked other times. Even if I am severely depressed, I often find myself in situations where my mood suddenly lifts for a short period of time (when I teach art is an example). I have been so depressed I felt suicidal, unable to get out of bed, and was sure I was unable to get to my class...and then I walk through the door, see a student and my persona suddenly switches into high gear, and no one in the world would ever guess I was depressed. The problem is, afterwards, I almost always need to nap because I exhaust myself.
Does my ability to lift my mood mean I am not really depressed? I have wondered about this a lot. I cannot reconcile my depressed self with its thoughts of suicide, plans for suicide, hopelessness, and intensely low mood, with the persona that seems to be bubbly, personable and for some moments maybe even "happy".
I know that others have a difficult time believing I am depressed sometimes because I often am able to hide my sadness, or even become "unsad" for short periods of time. This has caused me a great deal of stress, because people are constantly underestimate, and often dismissing, how sad I am, and how much my depression impacts and continues to destroy my life, and my desire to live.
Another commenter writes, "If she's ok to take trips, have parties, and go bar-hopping, how is she not ok to report to work every day?" Can a person, who is truly depressed go on a vacation and enjoy any of it?
For me my depression often stops me from doing things, going places, being with people, but I still push myself to participate in these activities. Sometimes I even enjoy the activities I do. Can you believe I am depressed and actually enjoy some things? I do sometimes go away on a vacation.
Most of the time I still feel as depressed as I would be back at home, often the stress of being away from home is too much, but sometimes, the vacation provides me with moments of relief, and a break from myself. Do moments of relief mean wellness? Does it mean I can work?
Whether I am able, or not able, to work is complicated. When this depressive episode began I was severely depressed and somehow still managed to work at a job that required a great deal of energy and effort. My fear of losing my job pushed me to keep working well past the time I should have kept working. I struggled for two years to maintain my work, but near the end I shut down completely and would sit and listen to people at work explain things or discuss things...yet I could not understand what was going on anymore.
I know for me stress really triggers me and increases my depression. Currently I do some volunteer work, but only a few hours a week. I know I am not able to manage more than a few hours right now. Even with just those few hours it takes me a long time to recuperate.
I feel so scared I will not be given the time I need to get well, that I will be told I need to go back to work before I feel well enough to manage working. I question myself everyday about how it is that I am able to participate in life; write in my blog, volunteer, take singing lessons, see friends, yet am unable to manage working. I guess the simplest explanation is that the singing lesson is an hour long and then I can go home and sleep. My volunteering is a few hours a week, then I can go home and be alone, and sleep. My blog is just all the thoughts already in my head, being typed onto the page. It is cathartic for me to write...and then I can sleep. My friends know I am depressed, so I can just be most of the time.
I don't think that my sleeping after every little increment of work, at a job, would be very acceptable to any company. There is a term called "Presenteeism" that is replacing "Absenteeism" as what a company is not looking for. A person who shows up for work, yet is not well enough to fully participate in work costs companies a lot of money in lost revenue and work accomplished. The "Presentee shows up, does very little, and gets paid. It does not help the company to have a worker who is unable to fully participate in work.
Anyways I ramble...but I want to show that people who are severely depressed can sometimes lift themselves enough to do things others might perceive to be impossible to someone who is unaware what depression is really like. This just points to the resilience of the people pushing themselves to help themselves move towards wellness.
Saturday, November 21, 2009
Kinesthetic Meditation
Please add my new blog "Kinesthetic Meditation" to your blog list. I will continue to write on this blog, but will keep this blog focused on thoughts, ideas and feelings, and my new blog focused on activities I enjoy, or that inspire me.
Thanks for the inspiring idea Harriet M. Welch!
Sunday, November 15, 2009
Anti-Psychiatry, Anti-medication; Thinking Critically about "Antidotes"
I've noticed more than average antimedication, antitreatment, antipsychiatry comments on my posts lately. Generall,y my first reaction when I read these comments is to become annoyed and brush off the comments as antipsychiatry propaganda or unbalanced, undereducated opinion, or opinions not informed by facts.
I am aware that some of my reaction is a reflection of my own irritation that the treatments I try aren't working. Some of my reaction though is worry that someone, who may really need help for their mental illness, may read the comment and without thinking critically about the other side of the information, might decide they are too afraid to seek treatment, or try a particular treatment.
Today I began thinking that the people/person writing the comments may have had some very bad/awful experiences of there own in psychiatric treatments,; either with the treatments themselves, or the medications. I suppose if I were not completely confident that I was being treated in the best manner possible I might feel that way too. I hope, if people have had bad experiences with their treatment for mental illness, that they find the power inside themselves to find a therapist or psychiatrist that they feel they can trust. I know for me, when nothing seems to help, just having a psychiatrist I connect with on a very deep level helps me keep trying to get better.
I am sorry to see people are having/or have had such negative experiences with their doctors, or medications, or other aspects of psychiatric treatment. It is ironic that although I do not seem to get better, I feel absolutely no anger, or annoyance or fear that I am not receiving the best care possible. You would think after so many failed treatments I might be anti-medication, or anti-ECT, or anti-therapy. I am not. In fact I feel that being treated with so many things has helped me learn about all the treatments available to people. It has also taught me I am very blessed to have Dr. X as my therapist/psychiatrist: very, very blessed.
I read somewhere (Maybe in a book called "Bipolar Disorder: A guide For Patient's and Families", by Francis Mark Mondimore, M.D....great book by the way IMO) that people used to die from being manic. Given there were no mood stabilizer to slow them down they would sometimes just collapse from exhaustion. Given how little was available to help people with mental illnesses even 30 or 40 years ago, I find it remarkable how much has been, and is being developed to help people now.
Some of the comments lately (and in the past) focus on how dangerous the side effects of a particular medication or treatment can be. Part of my difficulty with some of these comments is that they often relay unbalanced, inaccurate, or highly subjective "knowledge". For example, one commenter wrote:
"Antipsychotics are very dangerous drugs and can even cause Parkinson's disease and Tardive Dyskinesia...Many psyche drugs can cause permanent damage to the brain and nervous system...ECT causes memory loss - BRAIN DAMAGE....It has been my experience that most people are depressed for a valid reason...It sometimes goes all the way back to childhood. For someone who is considering incurring brain damage to rid themselves of a problem, I would ask this: What unpleasant truth are you willing to damage yourself in order to hide?" (from, ECT Media Portrayals of Depression comment)
(Note: I am using this particular comment as an example because it covers a range of concerns similar to many of the comments other people, who suggest psychiatry/psychiatric treatments don't work, are dangerous etc., often make,)
My understanding of some of the above treatments considers some of what this commenter has suggested. Yes, I believe use of antipsychotics should be carefully considered, because there is a potential for side effects such as Tardive Dyskinesia, and other unwelcome/dangerous side effects. As a patient I need to decide if my illness warrants taking the chance with the side effects of the medications I try. I have decided that for me, the pain of my continued depression, is far worse than my fear of a side effect that I may, "potentially", (not "necessarily"), experience.
As for "ECT caus[ing] memory loss- brain damage": I understand that memory loss is a fear, and sometimes. or for some, a side effect of ECT. I have had ECT though, and while I did experience some memory loss around the time I was receiving the treatments, I don't believe I permanently lost any memory. I could be mistaken, given that even when I was experiencing short term memory loss while being treated with ECT, it was not me who was noticing it. It was my family members. I couldn't remember, what I couldn't remember(...ha, ha.) Regardless, my choice to try ECT was informed and in fact it was my idea to try it. People underestimate how severe depression can be, and how hard it can be to treat sometimes. My depression was severe enough, and treatment resistant enough for me to decide that even if I had memory loss from ECT, it was worth trying a treatment that was shown to be highly effective in treating depression. I was willing to lose a few memories for the hope of feeling better mentally.
Last, but not least, this commenter, and others with similar concerns, has suggested my depression continues because of some "hidden", or unresolved "truth" from childhood. The truth is I had parents who were at times imperfect...imagine! Like everyone mine childhood was not perfect. Maybe at times my childhood experiences were devastatingly awful, but at times, in fact I'd say most times I had it pretty good. My parents loved me and tried to be good parents. I do have difficulty accepting and understanding some of my experiences in childhood, but I have worked hard in therapy to learn to manage, understand and for the most part accept and forgive some of the bad things. While sometimes I wonder if I have some deep dark hidden secret in my brain somewhere...locked away so deep that I cannot remember...I feel pretty confident that is not the case.
I work hard in therapy with Dr. X and I worked hard in therapy with every therapist I saw. I am open and able to articulate my feelings and work through my experiences. While my depression often makes me ashamed of things, when I am in therapy I work hard to ensure any shame about any memories or experiences is challenged and dealt with. It is not likely that my brain has hidden something from me, some deep dark secret that I cannot face. I feel pretty confident I could face any truth in therapy, especially with Dr. X. because I know he accepts me anyway I am.
For me there is no deep dark past that is keeping me depressed. My depression is keeping me depressed That's it, and I will do all I can, use any and all weapons available to me in the psychiatric arsenal to fight that depression. Of course I will learn about any of the medicines and treatments before I agree to try them. For me though, rejecting theses treatments outright because I am afraid of what I don't know, or because I hear bad things about them, or because I hear/read about other's bad experiences, is not my way of doing things. I try to check out all sides of the story, learn as much as I can, read balanced information, look for scientific information and then make a decision based on as much fact, and as little conjecture as possible.
I know no science is perfect. Mistakes are made. Drug and treatment side effects can be devastating ands sometimes permanent. Companies selling things like medication, treatments, help etc. sometimes lie and cheat. Pharmaceutical companies' studies are sometimes falsified or sometimes only positive drug trial outcomes are published. There are good and bad therapists/psychiatrists, and people in general, out there. It is not easy knowing what will or will not help or harm you.
I believe all we can do is try to find a psychiatrist/therapist whose education, knowledge and experience we trust, take the responsibility to look into treatments offered to us and try to understand the pros and cons, and decide for ourselves what we are willing to try to help ourselves become healthier. For some, they will decide no treatment is the best treatment for them, for others they will willingly try anything their psychiatrist suggests. For me, I will try any treatment that my psychiatrist thinks might help, if I feel is more likely to help me than harm me and I can see that the potential for benefits outweighs the potential for unacceptable side effects. We (my pdoc and I) may not always make the right choices, but they are well thought out choices and the choices I am willing to live with.
Saturday, November 14, 2009
Physical Pain
There is a problem. About 3-4 months ago I started feeling like my fingers were losing mobility. They were stiff and I was having trouble opening packages, and jars because they were so stiff; especially in the morning, or after laying down.
Over the past few weeks my hands have become so sore and stiff at night that I cannot even bend my fingers, or pinch them then together enough to pull my covers up, or fix my pillow position. I have been using the palms of my hands to pull things up, and move things around instead.
A couple weeks ago I realized that this stiffness and pain had to be real and was getting much worse at a very rapid rate. I told Dr. X finally. He ordered some blood tests (inconclusive) and then told me that I needed to see my family doctor for more tests or something?
My first thought when the tests were inconclusive was that I am imagining the pain and loss of movement. (Why I would do that I don't have a clue).
These past couple days my fingers, hands, and my left arm are aching so bad it feels like my elbow is healing from being broken. Tje feeling in my lower arm/elbow is the same, just as painful, as it was the first few weeks after my elbow was broken...throbbing. My fingers ache.
Right now I cannot bend my ring fingers at all past the middle joint, and my movement is bad and painful at that joint too. The rest of my fingers have varying degrees of pain and stiffness...but my hands as a body part are rapidly losing mobility. I feel pretty scared about how fast this is coming on and because I don't know why.
I have an appointment with a specialist, but not until late December. If this rate of mobility loss continues I am getting afraid I will lose all mobility in my hands. On top of that, the pain is getting so much worse. I've tried Advil, but it doesn't seem to help. Warm water helps some, and the cold outside makes it much worse. Dr X said to exercise my hands, keep them mobile, but they hurt when I try to bend my fingers and now it is starting to hurt and feel difficult to move the larger joints at the base of my fingers. I can't even hold onto my dog's leash, I have been wrapping it around my arm.
I think this physical pain/fear is feeding a downward spiral in my mood...this is not what I need right now.
Friday, November 13, 2009
Sleeping Sickness
"...Like the sea, I'm constantly changing from calm to ill
Madness fills my heart and soul
As if the great divide could swallow me whole
Oh, how I'm breaking down"
"I awoke, only to find my lungs empty
Through the night, so it seems I'm not breathing
And now my dreams are nothing like they were meant to be
And I'm Breaking Down
I think I'm breaking down
And I'm afraid to sleep because of what haunts me
Such as living with the uncertainties
That I'll never find the words to say
Which would completely explain
Just how I'm breaking down
Someone come, Someone come and save my life
Maybe I'll sleep when I am dead
But now its like the night is taking up sides
With all the worries that occupy the back of my mind
Could it be? This misery will suffice
I've become, the simple souvenir of someone's kill
Like the sea, I'm constantly changing from calm to ill
Madness fills my heart and soul
As if the great divide could swallow me whole
Oh, how I'm breaking down
Someone come, Someone come and save my life
Maybe I'll sleep when I am dead
But now its like the night is taking up sides
With all the worries that occupy the back of my mind
Could it be? This misery will suffice
Someone come, Someone come and save my life
Someone come, Someone come and save my life
Someone come, Someone come and save my life
Could it be? This misery will suffice"
Thursday, November 12, 2009
Thanks, I am Grateful For...
I am not doing well, but despite that I can see I have a lot to be thankful for. I have a warm bed, in a safe home. I have food and water. I have people around me who love me. I have a faithfully companion in my dog Skookum. I have a warm and loving boyfriend and friends who care about me. I feel so much pain, yet I want others to know I appreciate all they do for me.
- Thanks to my blogosphere friends, supporters, commenters and readers for helping me out when I need someone beside me who understands. I cannot express enough how important this support has been to me over the years. I may not say it often enough, but you make a positive difference in my life.
- Thanks to my 'real' life friends for being so thoughtful and caring; for holding my hand when I need it, and for being there both when I need a shoulder to cry on and when I need to share my exhuberance and joy. I hope I am able to repay your kindness. You are so important in my life.
- Thanks to my boyfriend for loving me for me, for being so open with hugs and kisses and love. You are so easy to be with.
- Thanks to my family, who, despite my fearing otherwise, tell me they will always love me no matter what. I am so afraid I will burn you out, but today my sister told me that would not happen. My other sister sent me a collage of photos of family members with "We Love You" written at the top. Thanks, I needed that. I posted it on my fridge so I can see it all the time.
- Thanks to my husband who has accepted and forgiven my transgressions and is being very reasonable about our divorce proceedings. He has also been very supportive of me these past couple months...calling to see if I am okay and offering to help if I need it. It really matters to me that we part peacefully and kindly.
- Last...but certainly not least, thanks to Dr. X. for sticking with me and being such a stable force in my life. I feel I can count on you to help me...even when nothing else seems to help. That support has been a literal life saver so many times. This morning, on my way top my appointment, I didn't think I could keep going. I can, and I will. Your carry my hope for me, in times like right now, helps me keep trying
Thank you so much,
...aqua
