Down syndrome PLUS other challenges, like mental health

I’ve already blogged about having an adult daughter with Down syndrome and how that’s so much different from having a younger child with DS. It’s tougher in many ways: the gap between that child and your other non-DS kids, in addition to the gap between that child and most everyone else, is so much wider than it was when they were little. You’re used to the different life, sure, but there are still plenty of times you’re reminded how things would be if that child didn’t have DS. As your other children become adults or older teens, that gap is starker.

What also makes life more … eh, interesting … is when that child has other challenges on top of all that DS does. We as a family have been so blessed that our daughter, unlike about half of people with DS, never had heart problems. She didn’t require surgery. I have always been appreciative of that. For us, however, what’s been tough has been my daughter’s emotional health challenges. I’ve blogged lots about my own mental health, so look at all that for what I’ve experienced personally. Marissa has exhibited a lot of mood swings and meltdowns for probably about five years, and those have gotten so much more frequent and intense the past six months or year. Over a few years, the doctor and I have tried Prozac on her to see if that could help her feel a little less out of control, but it hasn’t helped. Now, however, with her just having such a hard time, I’ve been trying to figure out just what we can do from here.

Here’s the thing: I’ve already written about how difficult it can be to find a good mental health provider, particularly a medical doctor — psychiatrist — who specializes in these things. It’s hard for EVERYONE who finds themselves in need of a psychiatrist. There simply aren’t enough to address the need. That’s particularly the case in smaller communities or other underserved populations. And it’s a tragedy.

Add that to the difficulty of finding someone who has the extra skill to work well with someone with a learning disability, for whom it is much more difficult to understand and express the nuances of things they’re feeling, and the challenge can be overwhelming.

I’ve felt overwhelmed by various emotions: frustration, sadness, some anger, helplessness, inadequacy … the list goes on. I feel bad for my daughter because I know from personal experience (years of it!) how it is to feel so taken over by your emotions. I also know it must be particularly confusing and scary and sad for her. But then when it just goes on and on, day after day, and the things I try to do just don’t seem to help much, I feel frustrated and angry and depleted and just ready for it to STOP. For at least a little while.

I took her back to her regular physician a few weeks ago, in desperation, hoping that he and I might be able to come up with something to help. Just a start. I told him what I’ve struggled with personally and what medications have now helped me for the past two or three years. I told him how few resources there are. I told him, “I know this isn’t really in your wheelhouse, but…” Luckily, he is a good and kind man who is happy to listen and consider ideas and research them, and I trust him to do what he can. He said he’d look into some things and get back to me.

Meanwhile, I had my own check-in with my psychiatrist (well, she’s technically a nurse practitioner who specializes in psychiatry and she is FANTASTIC), who is at a clinic an hour away from here (and that my insurance doesn’t cover, so I pay out of pocket for each visit: $100 each time I have a check-in). I told her about my daughter and asked for some ideas. I felt it was the best option for M to go to this place, since I know they’re good and they specialize in this. But I was thinking they weren’t taking new patients, which wouldn’t help me at all. Luckily, I had taken her there maybe five years ago, when she wasn’t doing too badly, so I was able to get her in again. She has an appointment in two weeks.

Meanwhile, she is having blow-ups and meltdowns multiple times a day, sometimes, and it’s a strain on me and especially on her youngest sister. I’m just holding on until that appointment. And even then, these things take time. It’s going to be more of a challenge to help her than to just be the patient myself (that is tricky enough, believe me).

I am aware often of the multiple challenges people face. Children and adults with DS, like anyone else, have various needs and overlapping issues. It can just make it that much harder to deal with each of those things. I have such sympathy for the individuals with DS who have these needs, and I definitely understand the needs and feelings of their parents and families. Each of us is going through a unique mix of trials and challenges, and many of us go through those without others realizing. My daughter’s DS is obvious to others. What is not obvious is all the other things we are dealing with. My girl is such a sweetie and so loving and outgoing and friendly and happy, and that’s what most people see. They don’t witness the meltdowns and the moods. That’s reserved just for me and mine (yay! ha). Today, I share this to help others see what happens behind our doors some days, and so others in a similar situation as we are can perhaps find something to latch onto and know that I get it. I feel ya.

She’s high and she’s low. Most people see this. I love this face. I love her all the time. But all the complexities and challenges can be exhausting.

Treatment for mental health is hard because diagnosis is even harder

Part of the reason I write this blog is to document my particular struggles with mental health. Having to deal with some kind of challenge that’s within the range of mental health is just as common as dealing with some kind of difficulty with any kind of physical health. In other words, either category is EXTREMELY broad. Physical challenges can range from diabetes or thyroid issues to cancer or gallstones. Any disruption in mental health can lie anywhere in a big range, too. Physical illnesses can sometimes prove tough to pin down, but it seems figuring out a diagnosis of a mental illness can prove consistently more difficult. Even if a diagnosis seems mostly straightforward, finding a treatment that will help the person going through it to get to a fairly “normal” state is far more difficult.

I’m in my mid-40s, and I’ve been diagnosed with depression, bipolar, or atypical bipolar disorder variously over the past 25 years or so. I’ve gone through a number of antidepressants and some medicines that are usually prescribed to treat bipolar disorder. Some have helped for a short time, some haven’t helped at all, some have made me feel worse. Some have helped enough for me to live my life pretty normally. I’ve been seeing a very capable nurse practitioner for the past five or six years, I think, and I’ve been on an antidepressant that’s pretty much kept me mostly in “normal” mode. But I’ve still had bouts (or very, very long, standard stretches) of what I’d just call irritability. And I know that just isn’t ME. I’ve known instinctively that it’s more a quirk in my brain chemistry or something, rather than a defining characteristic of who I am. And my extremely busy life managing a household, taking care of four daughters (now one of whom is married and out of the house, so the dynamics and responsibilities have somewhat changed, but not at all taken her “off the register,” so to say), working from home part-time and volunteering and managing fairly big church responsibilities, just for a short summation, keeps me running at a high level. It’s easy to say it’s “understandable” I’m irritable. But recently I thought it was time to check in with my practitioner and address the irritability again. I’m exhausted from “managing” it. Surely there’s something out there to help me with my underlying mental health so I’m not working so hard to manage and can just live, expending a bit less energy on coping?

pill-bottle_21_G6So we visited a few weeks ago, and talked for a while. She is fantastic because she’s very thoughtful and discusses the issues with me, asks probing questions, revisits assumptions, etc. We’re partners in my care, and I really feel she’s very knowledgeable, and she’s sensitive as well. That’s a biggie. She said to me that perhaps I’m not really on the bipolar spectrum at all. All she could say was that I’m just my own thing. So there might not be either a diagnosis for whatever I present as yet, or because mental health really is so varied and unique to each of us, maybe there isn’t or won’t be, if that makes sense. All we know is there have to be some kinds of ways to help me with some kind of existing medication so I can function better. So she said she’d try something, a medication that psychiatrists sometimes use to help with that part of mood. It’s a seizure medication used off-label in this way. She tried me on a very small dose, and I actually do feel it’s helping. My life is still CRAZY BUSY!, but I feel a little less like I have to work hard to manage my mood even while I’m managing my life. So I’m feeling hopeful and a little happier, just to have an extra tool in my arsenal, and to know that my practitioner is really awesome at her job.

This just leads me to a few conclusions yet again: we still don’t know a lot about mental health and illness. We’re doing better than 30, 50, 70 years ago, but we have far to go. And we need far, far more practitioners who have the training, experience and skills to deal with this complex issue. So many people are suffering and there simply aren’t enough practitioners around to help them. I’m blessed to have found someone who can do what she does. Even that’s not perfect, but it’s really about the best I think there is. Meanwhile, I just wish, wish, wish we had more incentives for people to go into the profession and stay there, that the specialists were available in every small and underserved area.

I write this because I just want to put my voice out there. I’m mostly a “success story,” and that’s just because I’m not crippled by my lapses in mental health, and pretty well functioning, and I’m a very resilient, determined personality. I have at least enough income and resources that I have been able to find someone to really help, but that’s still taken a great deal of time and work on my part. It’s been a long and tough journey. It shouldn’t be this hard.

As we work to try to improve outreach, availability and quality of care, and genuine help for those of us with mental health challenges (again, not at all just a small portion of our population), let’s continue to just be kind, patient and understanding to those around us who struggle and need our help. It still does mean the world.

Medications and me

Having a mental-health concern (that seems most likely now to be a bipolar disorder) for the past 25 years or so has naturally led to my being on various medications to try to improve my quality of life. I’ve already discussed a bit how it’s been a challenge to figure out exactly what I’ve been up against over the years (just some depression? anxiety? postpartum depression or PMS? bipolar disorder? nothing at all?), so I’ll try to go back and address what kinds of medications my doctors and I have tried to use to help me feel a bit more “normal,” or, more accurately, just better able to cope with the usual stresses and strains of life.

The first I ever took some kind of an antidepressant was toward the end of my LDS mission when I was feeling serious stress. The resident older missionary/retired doctor prescribed me a medication that would supposedly help with that. At this point, I honestly don’t remember what it was he gave me. What I do remember is that I was in pretty bad emotional shape and just going about my regular busy schedule just with a new medication didn’t help me feel any better. Besides, it usually takes a few weeks for those kinds of medications to even start making a difference, and in the meantime, I just kept feeling stressed — and guilty or bad about being stressed while I was supposed to be happy and spiritual and serving God and my fellow beings. It just wasn’t a good recipe for success as a missionary or a happy human being. So I ended up having to leave the mission behind and go home to seek help in a different environment (already talked about how that went).

I was next put on lithium when hospital doctors decided I was bipolar. I took that for a bit less than a year, I think. I felt better as time went on, mostly, but I also went back to college, where I felt more at ease and myself and had my friends around me. I am sure that the medicine must have helped though, looking back, because otherwise I probably still would have been seriously depressed/angry/stressed. But the change of environment did contribute, and after a time, I just felt that 1) the diagnosis of bipolar disorder couldn’t really fit me because I didn’t fit the “classic” signs of the “full-fledged” disorder and 2) lithium is a serious drug to be on: it can potentially damage the liver. I was having my blood tested every few months to make sure my liver was fine, but it was still a real concern. So I went off the lithium. During all this I was seeing a counselor at school, so I didn’t do all this just on my own without any professional support, but I don’t know if I had a psychiatrist on my “team” at that time.

After I married and moved to California with my husband, I know I ended up seeing a psychiatrist regularly, but I cannot remember if she had me on any medication. I know I didn’t go back on lithium. She might have put me on some kind of antidepressant, if anything, but I don’t remember for sure, and I have no idea what it was if I did take something. I do know that the first year of my marriage was very rough for me emotionally, and I prefer not to think about the way I acted. It’s too embarrassing. Luckily, my husband stuck it out with me. I also know that I was on hormonal birth control pills for the first two years of our marriage, and I am convinced that fiddling with the sensitive balance of my hormones was not a good thing for me emotionally.

I know that there were months and years I didn’t take any kind of psychiatric medicine, and there were other months and years that I did. It was always some kind of antidepressant. I took Zoloft and Wellbutrin at a few different times off and on after and between pregnancies. I took them together for a year or so, mainly because Zoloft did take away my sexual response. That’s something that’s a warning when you take that and various other medications, such as Prozac, and it’s definitely true for me. It can seem like a small price to pay, but it’s actually a pretty big sacrifice when it comes to a full intimate life with your spouse, so it bothered me greatly. Taking the Wellbutrin with the Zoloft took that side effect away.

After probably my third pregnancy, my gynecologist prescribed me a new medication, Lexapro. He said it worked well and had no significant (definitely not sexual) known side effects. I was eager to sign up. The morning after I first started taking it, I got out of bed in the morning to use the bathroom and then ended up passing out on my way back to bed. I was so scared about the weird feeling I had during that few moments that I told my husband to call 911. The paramedics came out and pronounced me fine. They said I’d most likely rubbed the back of my neck or something and had some kind of vagal episode. OK. Fine. Unfortunately, over the next 5 or 6 days that I took the Lexapro, I still felt weirdly faint and out-of-body-ish, and I figured the only thing that had changed in my life was that new medication. I visited with my general doctor, who told me that was ridiculous. But I decided it was the cause, and I stopped that Lexapro. I instantly felt better, well, fainting-wise. (The lesson here: even if your doctor says you’re being ridiculous, you still should trust your instincts.) So I went back to Zoloft or something similar, I think.

I started going to a psychiatrist again, which I hadn’t done for quite some time, just getting antidepressants from my gynecologists or general physicians, although I had still gone to see counselors for talk therapy more regularly. The psychiatrist I saw at that point, probably in 2007 or so, put me on Effexor eventually, which worked well for me for a while. He did suggest I might be experiencing bipolar disorder and might benefit not from lithium, but Lamictal (lamotrigine). He even gave me a sample pack. Even though I did consider that option, I told him that since I was feeling pretty good taking the Effexor, it seemed silly to stop taking something that was working just to try something else. He thought that was reasonable and kept me on the Effexor.

Then in 2008, my family and I moved to California from a long stint in Alabama, and life became unbelievably stressful. I’d also been taking the Effexor for probably a year or maybe a little less. At any rate, I’d probably only done well on an antidepressant for a year or so at any time I’d taken one, either because after a while, my life had settled down and I’d gone off a medication and been fine, or the medication had seemed to stop working. In this case, I just kept taking the Effexor, but my new general physician upped my dose. Shortly before another momentous, life-changing event for me, the death of my beloved dad, I started trolling the Internet and found the site I’ve mentioned already by Dr. Jim Phelps, which made me start to seriously consider the possibility that I really did have a bipolar disorder. But this psychiatrist was making the point that there was a wide spectrum of bipolar disorders, not just the “biggie” in which people stay up without sleep for a few days at a time, go on wild shopping sprees and spend tons of money, and do otherwise really foolish things they wouldn’t otherwise do. So I found a psychiatrist in my new town who was on my insurance list and made an appointment. He put me on Lamictal, which my previous physician had suggested a couple of years before. It did seem to slowly make a difference, and I was happy to be off the Effexor, although it did take a solid two or more months to very slowly wean off of that very addictive medication. (If I didn’t get a dose, I’d start feeling kind of headachy and light-headed, in a distinctively Effexor-less way.)

So I think the Lamictal gave me some relief and some hope that I was on the right track, but a couple of months into that, my dad died and sent me spinning. My psychiatrist asked me at the first appointment after Dad’s death (merely two or three weeks afterward, mind you), “So, how are you feeling?” Uh. BAD. My dad died. I’m miserable. Hard to say how the medication is working. I’d feel rotten no matter what. And that’s how it went.

A few months after that, I mentioned to some people in my church congregation that I was struggling with mental illness, and a few recommended I try a different option, a natural formulation called EMPower that was sold by a company called Truehope. The company says that the formulation contains micronutrients that are found to correct the imbalances found in those with bipolar disorder and other mental issues. I have always felt that ideally, it would be nicest to treat the actual cause of a problem rather than just the symptoms, if at all possible. This sounded like a very reasonable option, and Truehope has actually been doing scientific studies showing the benefits of EMPower.

I felt that I needed to at least give this option a shot. If I didn’t, I would never know if it could have helped me or not. So I went in to my psychiatrist, who naturally told me he didn’t agree with my decision and that he couldn’t continue to see me if I went off my prescription and took EMPower instead. I knew he’d say that, and I was ready to say, “OK. I won’t be back.” He said he knew I’d be back in a few months in even worse condition.

I tried the supplement, which is actually pretty expensive (probably about $100 a month, and not covered by insurance, of course), for about six months. I felt at first it really did help, but after a few months, I was just not feeling good enough. I tried a few adjustments and options after some phone calls with the company’s support techs, but I finally had to make the decision to end my own personal “drug trial.” I am sure that the supplement truly does help lots of people, but as with anything, nothing helps everyone. I did struggle, however, with what to do next. I firmly did not want to go back to my previous psychiatrist. He was too abrasive, and I felt I couldn’t work comfortably with him to find the best options to treat me. I finally decided to go see a nurse practitioner working in psychiatry 45 minutes away from my town because my therapist had heard good things about her from several other clients. I felt that it was going to be best for my mental health process to work with a psychiatrist who I felt comfortable with, that we were really a team, that she would be supportive. So I made the appointment. This new person, who I still see almost 2 years later, turned out to be a really good fit personality-wise, which I think makes a big difference in getting the best care possible. The only drawback is that my insurance doesn’t cover her, so I have had to pay entirely out of pocket. Luckily, I have had the spare funds to be able to pay for the visits, and it has been a good choice for me.

I’ll just call my nurse practitioner by her first name for ease of writing. Susan really went into a lot of detail with me, talking to me about the options and what she thought might work to help me, even explaining why she felt that way. I personally have really liked her approach. I like to feel that we’re on the same page, and knowing her reasoning helps me to feel more confident that is happening. We tried probably four or five different medications over the course of probably four to six months, during which time I’d go back every month to see her and check in. We tried Abilify, Prozac, and maybe Celexa. I can’t remember exactly. I did notice Prozac didn’t make me feel any better, and it just made me feel completely dead sexually, which was super-frustrating for me. So that was a no-go. I also know the Abilify didn’t do it on its own, and it actually made me feel, rather than “more normal” or “more like myself,” just kind of numb emotionally. I wasn’t stressed, kind of, but I was just dead. I didn’t feel anything. I felt like a zombie. I absolutely did not like that. She ended up adding in Cymbalta, which felt pretty helpful. Eventually, we took out the Abilify to see if that would help me feel less numb. And it did work. The Cymbalta, at the time, on its own, was a good fit for me. I’ve now been on that for perhaps 18 months.

Unfortunately, I’m afraid that now we’re getting to a point we need to tweak again. I’ve been on just antidepressants before, and I’ve either just gone off them or they’ve stopped working, and I fear this is happening now. I’m just feeling unhinged. The stresses and huge demands on my time are taking a huge toll on me, and I’m not proving up to the challenge of dealing with them in an appropriate manner. I’m coming up in a few weeks on another check-in with Susan, and I think this time we’ll have to address now how to change my dose or try something else. It’s been nice, though, for the past year, feeling pretty good and “myself.” Descending back into my “crash” mode is a scary and upsetting thing, for me and my family, and it’s nerve-wracking for me to ponder how much trial-and-error it’s going to take to get me back to happy. Will it take a couple different medications again and weird feelings of numbness or just not-effectiveness (so I’ll just feel unable to cope for a few more months? Yikes!)? My main fear is looking ahead at a few months of not being myself, far from it, especially with summer months coming on and my kids being out of school and all the stresses that places on me every summer. It scares me.

So that’s where I am, medication-wise. I’ve been a bit of a guinea pig for the past 20 years. It’s difficult because treating any kind of illness can be tricky and require some finesse. The basic stuff is kind of straightforward (infection? take an antibiotic; cold? take some antihistamines and Sudafed and wait it out), but other health issues take some trial and error. Then when it’s mental health, which is still a kind of slippery creature in the early 21st century, and every person’s needs and body chemistry is unique, it’s a science that’s more art than anything else. Being the doctor is probably a challenge, but being the patient is truly difficult. Being that guinea pig, the one on different kinds of medicines, is tricky and frustrating as all get-out. I’ve said for ages I wish there were a control group for me. But there isn’t. Good science requires a control group and an experimental group, and in this case, giving just me a medication and seeing what happens isn’t truly good science. And the onus is still on me as the patient to make the judgment calls, to figure out what’s changed, what to tell my health-care provider, about what might be significant. Do I feel better taking Lamictal even though my dad just died? Can I possibly separate out the effects of that from my normal stress reactions? Can I say I feel better on something even though a bunch of stuff has been happening in my life? If I could put myself in a quiet room without any interference from outside sources, I could judge better. But that’s never possible. (And if I could be by myself in a quiet place — resort, maybe? that would be amazing — I may very well be able to get to feeling better without the medication. Maybe. At least I wouldn’t be bothering anyone else.)

This post is incredibly long; perhaps I should have separated it into a few parts. But it’s the best answer to those who would like to know what my experience is with medications. I hope it might be of some use to those of you who struggle with similar problems and need to figure out how to look at your own situations with more clarity. Perhaps it will just make some of you more sympathetic with those in your lives who have challenges similar to mine. Or maybe those who know me but don’t know all these details about me will feel more empathetic with me. Either way, I hope this is of use to someone out there. This is an ongoing story, so I will need to update as the next few months come along and I visit my nurse again.

Latest discoveries

It’s going to take a whole lot of posts to cover my life and experiences in this department. So I started at the beginning, but I’ve been jumping around since that first post. I’m going to try to explain a bit where I am now.

We moved to California in late summer of 2008 from Alabama, where we had lived in one town for 10 years. We were pretty well settled there, even though we hadn’t expected to stay there for so long. But our children’s needs, primarily, induced us to move cross-country. Though I had some time to plan and prepare for the move, the whole thing didn’t go nearly as smoothly as I would have liked. It took ages to get into a house of our own, during which time we lived with family and had all of our possessions in a storage unit. Then we waited and waited for our house in Alabama to sell, and after a year of waiting and one very low offer that fell through, we decided to rent it out. The stress of all those things, combined with the financial stress of paying two mortgages for a year, made life very difficult. I just felt depressed and frustrated and irritable pretty much all the time.

I had been seeing a psychiatrist in Alabama for a year or two, during which time he’d put me on an antidepressant that seemed to help fairly well. But with the move, it just wasn’t doing enough. So I started surfing the Web one morning and found a site that turned out to be very useful. It’s just a very simple-looking site by a psychiatrist who has shared many of his insights online. He also wrote a book called Why Am I Still Depressed? I pored over the site and then ordered the book. I decided that it was time to see a psychiatrist in my new town, rather than having my general doctor keep writing scripts for the old antidepressant.

The site had really struck a chord with me; its information led me to believe I was experiencing what this doctor (James Phelps) describes as bipolar II. Armed with this bit of information, I found one of the two psychiatrists in town that my health insurance covered and made an appointment. My new doctor and I talked, I shared my opinions, and he prescribed a new medication; he called my condition “atypical bipolar disorder,” but it’s just a slightly different name for what Dr. Phelps called bipolar II. The new medication seemed to work fine, and just knowing I had new information and a new medication gave me hope.

Three years later, this is still the diagnosis I’m working with. I’ve tried some different meds and a different doctor (I’ll write other posts on those topics), but we’re still going with that. Honestly, though, I still wonder how many other factors are at play. Dr. Phelps’ website talks about how thyroid disorders are sometimes tied in with bipolar II, and since I’ve been hypothyroid for about 12 years now (well, that’s when my doctor and I discovered it), I can’t help but think it may play a part in what I experience, even though I have been on thyroid replacement medication for all that time and it’s supposedly controlled (according to blood tests that my current doctor administers every year: and THAT, again, is a whole other topic). I also have noticed that I feel particular sensitivity to hormonal fluctuations, during pregnancy and postpartum and my monthly cycles, and those must be factors as well. I’m fascinated by how things work, and the complex interplay of hormones in the body is so interesting to me (I even wrote a paper about hormones for a research project in English in high school before I knew how personal it was). So I would love to figure out exactly how all these things work together to create my particular issues. Doctors, however, basically don’t seem to care about this (How could they not? Do they not have any curiosity?), at least when it comes to treating me. They just want to know that they’re finding a good medicine to treat me, and that’s all that matters. They have a point, I suppose, but I’d just love to know how all this works inside me. As far as we’ve come in being able to treat mood disorders, it still feels like we’re kind of living in the 19th century treatment-wise compared to all the other feats of medicine that exist.

So I could say now, “Well, this is it. I’m almost 42, and I’ve finally figured out what’s going on with me.” But even though I feel fairly confident that I’m on the right path — and it’s a big relief, I must say — I still wonder if in 10 years my diagnosis might change and I’ll look back and say, “Gee, we were close but not quite there.” At any rate, this is the best we have right now, and we’re going with it. It’s something, and something is better than nothing. I suppose, when it comes down to it, this is really just an extension of my previous post, “What’s in a name?”, because we have a name but that name could very well change. It’s just nice to have a name; it helps me to wrap my mind around what I experience, it helps me on occasion to explain to others if I feel so inclined, and now it might help you.

Balancing act, part one of many

It’s pretty common for women to talk about the tricky proposition of balancing the many elements of their lives. In fact, I know few women who don’t worry about getting a proper balance, let alone maintaining it. But having mental health issues just makes that balancing act that much more difficult. I can say from years of experience that it’s a razor-thin line; right on one side I might feel a little overwhelmed but still OK; on the other side, I’m far past overwhelmed: I’m stressed, I’m drowning, I’m angry and lashing out at whoever comes too close. The latter is not a pretty picture, and I don’t like thinking about the times I’ve been pushed too far on that side of the line.

What my psychiatrists and I are currently calling bipolar II or atypical bipolar disorder causes me to experience a kind of hopeless feeling in which I rarely feel that kind of depression that makes me not want to get out of bed. It’s more of an angry depression. I feel isolated, alone, abandoned by all who should love me and somehow care and know me well enough to be able to see what’s happening and help. When I feel that way, in the very extreme times, I feel that life won’t possibly get better, that I can’t take the psychological pressure that seems to be pressing in on every side of me. I just feel angry at everyone who could possibly be blamed, including God. When the anger kind of dies out, I feel depleted and in despair. So I “swing” back and forth between a sad, hopeless depression and an angry depression, if that makes any sense. I’ll try to explain further in later posts. Suffice it to say, yes, I am a type-A personality, but I’m also typically a fairly cheery, happy person who always has a smile on my face. So when I get backed into these corners where I feel trapped and angry, the rage that almost flares up out of nowhere feels so at odds with who I feel I AM that it upsets me even further.

That brief introduction to my moods is just to somehow try to explain that I can quickly get out of balance. After years of this kind of yo-yo-ing, I can feel when I’m getting close to the brink, and I start feeling desperate. I know I need some down time, alone time, unwinding time to try to swing myself back to a more stable self. The problem is when I feel I don’t have the choice to just say no to activities or pressures or expectations from others.

Some people are more sensitive about this than others. Again, finding balance is always a delicate proposition, and many people understand this for themselves and that it’s the same situation for others. Some are just more empathetic about others’ needs as they bump into their own needs. I admit I get a little irritable when I say, “Well, I can only do ___ because I am pretty busy.” In my mind, that’s me being responsible enough to know my limits and exercise my personal choice to lay down those limits and work around them. When someone else responds, “Well, yes, sure, but we’re ALL busy,” I know they’re not really going to be too respectful of whatever line I’m going to draw for myself. Or they may say, “Yes, well, but (____ organization) really NEEDS you.” Sure, every organization that relies on volunteer help of any kind always needs help and never has enough. But I cannot possibly do enough to fill in those gaps, for that group or any other. Or I might just say flat-out, “No, I simply don’t have the time and energy to do that right now,” and rather than saying, “Oh, of course, don’t worry about it. We’d love your help, but we understand that” they keep pressing on in some way. These responses essentially tell me that these people value their needs above mine. And sure, we tend to be selfish beings and that’s natural. But I certainly appreciate it when someone else rises above those human tendencies and tells me, “That’s fine. You do what you need to do.” I so greatly value when they have the kindness to respect my choice, my right to make decisions for my own life and that of my family.

You see, I know what my limits are, and I’m constantly doing the balancing act. I am a softie at heart, and I want to give my money and time to a whole lot of worthy causes, worthy people. My heart goes out to them. I may even sometimes foolishly say yes or maybe when I should have said no because I’m biting off more than I can chew or even get in my mouth at one time. But when it comes down to it, my mental health must stay intact, so I can be happy, so I can take care of my family (which is paramount in my life above all the other things that matter to me), and so I can in the future continue to give to others. Simply, it rankles me when others don’t respect that I should know best for my own life and my own well-being and continue to push me when I say no. It ticks me off. Big-time. But on the flip side, I feel respected and cared about when someone is kind enough to take me at my word and wish me the best. Perhaps I expect too much out of people, but I would love to see more sensitivity in how people treat each other. There’s just no way of knowing what someone else is going through. I’m being open here on this blog so I can help others understand what I’ve experienced, but I simply can’t go through my whole personal history every time someone demands justification for me saying no. Thank you for being understanding, those of you who have been and continue to be so with me.