The public face.

I’ve written before (here, here and here) about my struggles with depression. It’s not something I enjoy talking about. I’m not embarrassed by it, I just have a hard time explaining it to people who haven’t experienced it so it’s just easier to not bother. Also, it’s not like it comes up in casual conversation. Most people don’t know when I’m struggling because I’ve become very good at maintaining my “public face.” I do it out of habit and out of necessity but it is exhausting.

Pretending that you are “fine” when you have a heavy weight the size of your fist in your chest is hard work. Smiling and talking when you would rather just sit and stare at a wall is hard work. Cuddling and loving your darling son after a very long day of wearing your mask is hard work. Eventually that mask has to crumble, it’s not possible to go on day after day and not get worn not get emptied out, emotionally. It’s not possible to keep taking hit after hit emotionally and keep your balance. Sooner or later you hit a tipping point. I have hit mine.

I can’t tell you precisely when the slide started, depression is sneaky like that. It has always been cyclical for me…I slide, I struggle, I rebound. Twice I’ve struggled to the point that I sought outside help but for the most part I’ve been able to get through it. It is very hard for me to ask for help. I always assume it will get better and, eventually, it does.

I assumed that is what would happen this time too. There is no reason for it not to. I am very happily married, I have a son I love more than life itself, I have a good job, our finances are good, our future looks bright. There are, of course, issues…everyone has them they’re part of life but there are no issues I would expect to tip me off balance. In the past, when I’ve needed help, there have been major outside issues that influenced my emotional state…stress, fear, hurt, loneliness, etc. None of that is true this time so I assumed this would be one of the lower points but that I would ultimately be OK.

Somehow though this turned into something bigger. The slide did not stop. I began to wonder if this feeling would ever start to lift. I withdrew emotionally into a shell, the only pieces that seemed to escape were bright flashes of anger and frustration and shame. I knew I was not at my best but I had lost the ability to see myself clearly and to see how withdrawn I had become. I started to feel hopeless. I would think about the many long years ahead of me and wonder how I could possibly live like this year after year.

I would come home from work and go through the motions until Monkey was in bed. I used up every ounce of my energy getting through a work day and being his mom. I wasn’t always successful, either, which broke my heart. He has enough struggle in his life, he does not need a frustrated and short-tempered mom. Once he was in bed, I turned off. I would sit and mindlessly surf the internet or I would escape to our bed with a book. I would read or surf until I couldn’t keep my eyes open a moment longer, which often took until 1 or 2 AM , and then fall asleep. I wasn’t being a very good wife.  Poor Duhdee was left with nothing of me but the worst bits.

Duhdee watched on helplessly throughout all of this. He suggested a few times that maybe I should see my Dr. and I agreed but I put it off. He would talk to me about feeling shut out and I felt awful about it. I would spend a few days or weeks doing better, being better, and I would even start to think maybe I was going to bounce back. It was all just too much work and I couldn’t maintain it. I would slide right back to where I had started. That feeling of hopelessness grew because I could not dig myself out, no matter how I tried. The feeling of letting down my husband and son was so incredibly painful to me.

Last month, Duhdee approached me again. This up and down struggle had been going on for almost a year now and he was reaching his breaking point. He sat me down and told me how he was feeling and I got angry. I wasn’t angry because he was wrong or being unreasonable but because he was right. Not very rational, I know, but I felt guilty and I immediately tried to justify myself and shift blame. A lesser man would have let the next few days blow up into a fight, possibly into one of those fights that marriages don’t fully recover from if they recover at all.

Fortunately for me, I was able to see through all my anger and see what an effect my emotional state was having on our family. He reassured me that I was not neglecting Monkey, that I was still being a good mommy to him.  I knew though that I was not being the best mommy I could be. I finally decided that Duhdee and Monkey deserved better. I called my Dr. and had a physical. I asked her for a referral to a psychiatrist. I managed to keep that appointment despite the fact that I was willing to do almost anything to avoid it.

The Dr. had read my history, he knew about Monkey’s diagnosis and he knew a bit about FX. All of this set me at ease. He ran through one of those depression checklists and I was experiencing nearly every single symptom short of suicidal ideation. He looked at me and told me “You’re having a very difficult time right now. You are struggling and you do not need to be.” It was like an explosion in my head. I was sitting in that chair because I knew Duhdee and Monkey deserved better than what they were getting from me but it had not ever crossed my mind that I deserved better too. I told the Dr. I was tired of the ups and downs. I was tired of feeling like life was such hard work.

He has prescribed b.uproprion which is a generic version of W.ellbutrin. I’ve been taking it for just over a week today and I feel better. I felt better as soon as I left his office, in fact. Obviously it’s not the medication, it’s what he said to me as I left.

He said, “When you come in here in six weeks you are going to feel better. When I ask you if you are feeling better you will say “Yes.” When I ask you when you started feeling better you will not know when.”

That right there? It’s hope. It’s what will get me through until the medication can take over.

I told my mom last Sunday that I can see the light at the end of the tunnel. That’s not quite true but I can sense it. It’s sort of like standing on the platform waiting for the train to emerge from the tunnel. If you are paying attention, you will know the train is coming long before you hear it, long before you see the lights. You will be able to feel the light breeze it creates, as it rushes toward you, caressing your cheeks.

Depression round…two?

Posts about my previous treatment for depression can be found here: Part 1 and Part 2.

I am not sure this really was round two for me.  I had struggled with depression for so long before I hit bottom and needed treatment in my mid-20’s but it was not a constant feeling of depression.  I had times where I functioned very well and other times where I could barely get through the day.

My entire junior year of college I had isolated myself.  I moved to a new house on campus where I didn’t know anyone and when I returned for my senior year NO ONE knew that I’d even lived there the year before.  I was a ghost, showering during off times, entering and leaving through the service door, studying and eating meals by myself in my room when I wasn’t in class.  I had been fine my sophmore year and I was fine my senior year so obviously this came in waves.  I really have no idea how many times before that I should have sought help and didn’t.  So round two is really just a marker for the second time I realized I had no option but to seek treatment.

No one will be shocked to learn that it coincided with Monkey’s diagnosis, I’m sure.  I’ve written before about how badly the diagnosis was delivered and how much we struggled in the beginning because we had no reliable information or support.  In the first weeks after we learned Monkey had Fragile X, I stopped sleeping.  I spent night after night in bed tossing and turning until I couldn’t stand it, then I would get up and go online to search endlessly.

I was feeling guilt, hopelessness, isolation and anger.  I wanted answers no one could give me.  I wanted help no one would offer me.  I wanted to run away but I love Monkey too fiercely to contemplate leaving him behind and, even if I did do such a thing, Fragile X was with me forever now regardless.  I thought it would be best for both of us to just cease to exist.  I never thought about harming my Monkey, I never would.  I just thought it wouldn’t be the worst thing in the world if we could be together and free of all the fear and struggles that lay ahead.

That right there…it’s my crazy* talking.  This time I saw it for what it was and I was sitting in my physician’s office the next day.  I tried to explain what was happening, I mentioned Fragile X which she admitted she knew nothing about, but ultimately what I did was cry.  It was clear I was out of control of my emotions, the lack of sleep, the shock and fear I was feeling, my history of depression all added up to me needing more than she could give me.

She referred me to a therapist in her practice and I set up 3 visits for the first week.  That, is a lot of therapy.  I needed something to help me even out my emotions though and drug therapy takes time.  This was my second round of therapy and it was an unmitigated disaster.

The therapist had not ever heard of Fragile X Syndrome and did not take the time to do any research.  I found myself in her office on that first visit explaining what it is and how it’s passed on and I BARELY understood this myself at that time.  As I sat there my tears dried up and I started to feel annoyed and then angry.  I left, thinking I wouldn’t go back but outside of the office all the emotions that had convinced me to seek help came back.  I went back for a 2nd and 3rd visit, repeating all the same information and then she did something I still have trouble believing.

She suggested that, since I was so surprised at the diagnosis and had never suspected anything that serious was wrong with Monkey, maybe he didn’t have Fragile X at all!  Maybe they were wrong.  I was so stunned, I tried to convince her that it wasn’t a misdiagnosis but she persisted.  I left.

The following week I only had 1 session scheduled.  When I returned for that visit she started in again about the fact that he might not have it at all.  I felt totally disregarded and disrespected.  She obviously hadn’t taken any time to check into Fragile X and it seemed she never would.  Furthermore, she decided that I wasn’t actually depressed, I was just suffering from insomnia so she prescribed a sleeping pill and nothing further.

I was, again, stunned.  She had my medical records.  She knew I suffered from depression, she knew that I had been suicidal in the past and that I had used sleeping pills inappropriately (to say the least) in the past and here she offers to hand me a bottle of them and not treat my depression.  The medical group that I visit has a staff geneticist (who I later saw) who could have told her, had she asked, that with my history I should be on anti-depressants now and probably forever.  But she didn’t ask.

When I left her office that day I took the prescription and did not make another appointment.  I filled the prescription on my way home but, after further consideration, I decided it probably wasn’t in my best interests to have it around and I disposed of it.  She never once called to follow up.  A (reportedly) depressed person walks out of your office with a prescription that she could use to kill herself and never comes back and you do what now?  Yes, that’s right, just forget about it…that seems logical, right?

Fortunately for me pieces started falling into place for us after that visit.  We found people at the National Fragile X Foundation to listen and advise, we were given contact information of family who could help, we found a geneticist who could explain the situation and what it meant to us, we found a clinic to evaluate Monkey.

I was able to walk away this time without the added support of therapy and I threw myself into finding what we needed to help Monkey.  Having this to focus on allowed me to cope.

This isn’t to say that I shouldn’t still be on anti-depressants.  I should.  Duhdee has, at times, been very worried about me.  He’s pushed me (gently) to go back but I was so discouraged by that last attempt and I’m so discouraged on an ongoing basis by the lack of knowledge in the medical community about Fragile X that I just can’t bear to.  When I most need therapy, I simply lack the strength of will to get it.  I lack the will to educate and advocate for myself the way I do for Monkey.  I guess it’s asking for too much to find someone who will go the extra step to educate themselves and figure out how to help me, they all seem to want me to do all the work.  I just don’t have the energy for it.

*Please don’t be offended, it’s my (inappropriate) sense of humor.  I know this is a very serious disease but self-deprecating humor is my trademark.  I can call myself crazy.  I’d never call anyone else that though.

A migraine saved my life (part 2)

(This is an FX Memory, from before I knew I was a carrier, read Part one here: A migraine saved my life.)

After my intake evaluation it was a relief to finally be told that they wanted to admit me. My parents were totally shell shocked by how badly I was doing, I am very good at hiding this sort of thing and I come by it honestly. At one point I remember justifying why I had not been able to reach out for help by relating this story.

My grandfather has broken his leg twice in his lifetime. The second time he broke it he walked around on it for 3 days before he decided to see a doctor, can you imagine? Anyway, the doctor put a cast on his leg that ended just above his knee. My grandfather wore the cast for two DAYS and then cut it off himself. He said that he’d walked on it for 3 days without a cast and he didn’t see any reason why he couldn’t continue to do so. A few years later my mother broke a bone in her foot. She hobbled around for 3 days before she went to see a doctor. When she told her father the story his reply was “That’s my girl!”

This is just one example of how my family deals with pain and this lesson was passed along in many other ways as well. It was really ingrained into me from an early age that we should all just buck up. It’s not to say that my family is cold, we’re just your average Yankees. Stoicism is a virtue, until it almost kills you and then everyone will tell you what a dolt you were to hide your pain in the first place. They’ll still proudly tell the story of how you got along up until that point though!

My first few days in the hospital were remarkably unhelpful. I was tired and I was cranky, to put it mildly. Spending days in a locked ward with mandatory group therapy did not agree with me and I saw no reason to hide that fact. I refused to participate in therapy and I still wasn’t eating since I still didn’t think I deserved to eat. I woke up just around 11 PM on my 3rd night feeling very dizzy. My heart rate was erratic. I tried to get out the door to get help and I collapsed. I hit my chin on the door handle, I still have the scar.

I’m not sure how long I was there but it couldn’t have been very long, they did room checks every 10-15 minutes and they would have found me blocking the door, but it felt like a lifetime. Eventually, I was able to stand upright and get the door open. I started down the long hall to the nurses station, I had to lean against the wall to walk. Then everything went black. I’ve passed out before, from stage fright and fevers and it had always been a gradual event but not this time. This time it was just lights out.

The nurses were alerted to my problem when they heard my head hit the floor from some 30 feet away. I only remember bits and pieces of what happened. I heard one of the nurses give my blood pressure reading and it was really low (something over 40), I heard another one say “Girly, you’ve got to EAT!” and that’s about all I remember until they put the IV in my arm in the ER. That woke me up but good. I had quite a long time to sit and listen to the nurses fuss at me. They got into a lot of trouble over all this too, I still feel badly about that.

After I went back to the unit they gave me one more day to sleep and be grouchy and then they started to really push me. They turned me into a pet project of sorts. There are lots of people who cycle in and out of the psych unit there and I’m sure it’s the same at every hospital. There are some people who for, whatever reason, can’t come back from their mental illness and they didn’t want to see me become one of them. There was no need of it in my particular case, it would have been pure stubbornness on my part if I didn’t get better. Medications and therapy could make me better but I had to at least make some effort.

Ultimately, I was able to take advantage of the tools they were offering me. I was diagnosed with Major Depression – Single Episode. With drug therapy and counseling everyone thought I’d stabilize and be able to come off the medications completely. When I was discharged, after a week of inpatient treatment and six weeks of outpatient treatment I felt healed. I continued private therapy for 6 more months and then weaned off my medication.
I did great from that point until my son was diagnosed with Fragile X years later.

To be continued…

A migraine saved my life.

(This is an FX Memory, from before I knew I was a carrier.)

I’ve struggled with depression since my teens, possibly longer but it was in my teens that I first recognized it for what it was. For ten years I muddled along and then I simply could not take one more step. I had hit a wall. I could not see any way around or over it. I stopped eating and sleeping and I started drinking heavily. I sat there, at the base of that wall, and waited. I had quit my job and distanced myself from my friends and family so there was nothing to do but wait.

One day, I felt the tell tale prickles of a migraine as it wormed it’s way into my head. I took Excedrine and washed it down with Jack Daniels and continued to wait. The migraine hit, full strength. After 2 days with no relief from the pain and no sleep, sleep began to seem like the cure-all. As if one can simply sleep off a migraine and full blown depression. I finally decided to give sleep a helping hand and took a full bottle of OTC sleep aids. It didn’t work so the next morning I called my doctor sobbing.

I was an emotional wreck when I arrived at her office. She gave me an injection to treat the migraine since I did not want to go to the hospital for pain management if I could avoid it. After about 30 minutes in a darkened exam room the pain was gone so completely that it was difficult to imagine I had ever felt it. What hadn’t disappeared, however, were the tears and the feeling of hopelessness.

My doctor very gently began probing for answers. She told me that she was concerned that I didn’t seem to be feeling better even though the source of my complaint was gone. She wanted to know if I had ever considered suicide and I told her that I had and added “Everyone does at some point, don’t they?” She told me no and I was shocked. I had spent so many years just casually considering ending my life that I thought it was normal. I thought it was normal to think “I could just drive under that semi” when I passed a truck on the highway or “I could just drive into that bridge abutment.”

She asked me if I had a plan and I said “No!” in a rather self-righteous way, I might add. She asked me if I had thought about how I would do it and I immediately told her I would take pills. She asked if I had access to them and I said that I did. She let me know that this was a plan.

She asked me if I had ever taken lots of pills and I had to tell her that I had, in fact, done so the night before. Holy crap. I tried to KILL myself?? It seems so hard to believe, from where I am today, but I really had no idea how badly I was doing at that point. I did not realize how close I had come to ending my life.

She then told me she didn’t feel safe letting me go home and asked me to go to the local hospital to be evaluated. As scared as I was of what I had done, I couldn’t agree to it. She insisted that I call my parents and tell them what was happening. She made me promise them that I would not hurt myself if I left her office. I did this but it wasn’t enough for my parents. They immediately drove to my apartment and brought me to the emergency room of the local hospital. They were so scared, I didn’t want to say no.

The evaluation at the local ER was pure misery. After an hour under their microscope I had no defenses left, I was shaking and crying uncontrollably. I felt as though every part of me had been laid out for the whole world to see and judge. I felt as though I could not trust myself to discern the truth of my own emotions. I can’t even identify today what emotions I was feeling. I think I was feeling every emotion, all at the same time. After three months of self-medicating and trying not to feel any emotions, it was pure hell.

This is getting really long. I’ll save the rest for next week. I don’t really have to say that my personal struggle is directly related to FX, right?   Right.