Tag Archives: depression

Depression

Sometimes in life, we find ourselves in a place we are not accustomed to. I’m not talking about a physical space, but rather the space which occupies our minds. For this glass-half-full girl, it is very difficult when my mind wanders off the usual sunny path I follow.

Sometimes the inside just doesn’t match the outside.

People with chronic illnesses are definitely more subject to suffering from depression than your average, healthy person, and many of us do take antidepressants to help us manage the weight of it all. But even with medications, there are times when depression can overtake us, and that’s ok. One of my MS sisters told me she “doesn’t live there but she visits on occasion.”  I love this analogy because it makes me feel like it’s ok, especially because I so strongly believe that as human beings, we need to experience the whole range of emotions in order to appreciate everything in our world.

For me, my frustration has been building since I broke my toes. I never thought that two little toes could affect my entire body the way they have. But it’s true. Those two toes have affected my balance and stability, as well as the alignment of my entire body. I am beyond grateful for my trainer and her patience that tempers my disappointment even though she can’t make me heal any more quickly than I am. I am desperate to get back to working out like an athlete, not an MS patient. Anyone who has ever been an athlete can surely relate to this, the feeling of losing despite the hard work being put forth.

My ankle is wrapped in kinesiology tape in hopes that my stability will improve.

This little setback came right on the heels of breast cancer. It seems like I didn’t deal with the emotions of a cancer diagnosis because I just put myself on autopilot to do what I needed to do, the way I always do… with a smile on my face. Now I have completed treatment,  but opted out of the prescribed protocol of endocrine therapy in favor of handling the continued treatment with a naturopathic oncologist. But I feel like I’m hanging in limbo, waiting for someone to either tell me that I am cancer free or that I have a recurrence of cancer. Plus, while I felt loved and supported through my entire cancer journey, now that it’s “over” (for the others in my life, but will never be for me), life goes on for everyone else while I feel like I am waiting for the other shoe to drop. And meanwhile, breast cancer precluded me from going on a new Disease Modifying Therapy for MS which I have had my eye on for years as it progressed through clinical trials all the way to approval. This was a huge blow and as I see more patients that are lucky enough to take it, I get more bummed out.

Then there are the relationships that have changed, for reasons I don’t understand but I am working hard to accept. I generally find comfort in my MS sisters but it seems we are all in a bit of a funk and dealing with our own issues so it has been way too long since we have been able to spend any quality time together. All of these things together have been adding to the weight I’m carrying that is diametrically opposed to who I am. I mean I cried for six hours the other day, which is so NOT me, especially considering that I often can’t cry even when I want to, thanks to the antidepressants that usually help maintain my emotional stability!

This little girl knew I was upset and she sat on top of me as I cried.

I recognize this place, as I (like my MS sister) do visit occasionally. While I am here, I take note of all of my feelings: the good, the bad, and the ugly, so that I can further appreciate all of the amazing things that I am blessed with when I leave. And I always leave, knowing full well that it’s ok to come back to visit, but it just isn’t where I live.

Loneliness

As you know, I write this blog as a person who lives with a chronic illness because that’s the life I know. I am sure that many can relate to my experiences even if they are healthy, or so I like to think. 

Here is something that I hate: even though I consider myself a hopeless optimist, living with a chronic illness can be damn lonely. How is it that I can feel lonely even when I’m surrounded by people? It’s nothing that can be easily explained, but it’s the kind of loneliness that makes me feel empty. It can eat at my soul, rob me of much needed sleep, and take my smile away (which is generally not an easy thing to do). It can make me withdraw from everything and everyone, and it can turn to fear in a matter of seconds. It’s true that fear can be irrational, but with the uncertainty that is MS, fear is constantly in the background even when you’re feeling your best because everything about this disease is scary. Everything. 

It’s not just about MS itself, but it’s also about relationships and how they change through the course of illness. I know people want to help and they always say things like “if there is anything I can do….”, but there isn’t. They can’t make it go away and neither can I. Then they feel helpless and I can’t make them feel any better, which makes me feel even worse. Plus there is always the frustration that comes with feeling like my body is letting me down despite how hard I work to stay strong and healthy. It’s very easy to get wrapped up in an endless cycle of negativity, and it’s very difficult to escape it. Simple tasks become overwhelming, adding stress, consequently causing symptoms to flare. 

Beautiful flowers from my beautiful MS family...because they love me and wanted to make me smile, which they did.

Beautiful flowers from my beautiful MS family…because they love me and wanted to make me smile, which they did.

I fight so hard to stay optimistic, but when I’m feeling vulnerable, the tiniest thing can shatter my strength. It is during those times that I feel the loneliest, and I withdraw because I don’t want anyone to see me as anything but the true optimist that I believe I am. 

What I am absolutely certain of is that having feelings like this doesn’t mean that I’m not an optimist. It simply means that I am human, and that I am entitled to experience the full range of human emotions. It’s what connects me to everyone and everything I know.

So as much as I allow myself these moments, I do not allow myself to dwell on anything for long. I have a husband who stays by my side through it all, and an amazing MS family who loves and supports me no matter what. Plus I have some incredible former students, and of course other friends and family members who deserve to see me as my true self: yes, I have moments of weakness, sadness, and depression. But I am a firm believer that tomorrow will always be better, and when the clouds clear, the view is always spectacular. 

This week I am working hard at sifting through the lemons I am finding in front of me so that I can get to work on that lemonade. But I have no doubt that I will be pouring myself a glass very shortly…and it will be at least half full, and as sweet as ever.

Bru bought this shirt, which is truly perfect for me, on our trip to Newport, RI.

Bru bought this shirt, which is truly perfect for me, on our trip to Newport, RI.

Grief Too

When Bruce and I first talked about his entry discussing how he experienced the five stages of grief, we thought it would be interesting for me to share my thoughts on the same topic. 

For me, the onset of the crazy symptoms that led me to seek medical attention left me feeling a sense of complete and utter upheaval and chaos. Just as Bruce and I were settling into our marriage, in came the storm to interrupt our lovely calm.  I had just started teaching in my third school district (the one that truly felt like my home), and I had no doubt that I wanted to spend the rest of my career there. I felt like a burden on my husband, as we were riddled with questions and doubts, yet there were no answers to be found for months. I was lucky to have amazing coworkers who helped me with the simplest of tasks: photocopying (since I couldn’t feel the paper), tying my shoelaces (because I permanently lost the ability to tie them myself), and even coming into my classroom to give me unofficial “breaks” because I was beyond exhausted. I feared both for my marriage as well as for my livelihood. 

Just like Bruce, I cycled through the five stages of grief not only for me, but also for my partner, because he did not sign up for the life that we were currently living when we exchanged our marriage vows. The only positive thing here was that we were never both in a dark place at the same time. One of us was always up when the other was down, and vice versa. Still, I hated thinking that I could be a burden on Bruce someday, and at the same time I was processing fear, often crippling at times, far greater than I ever thought possible. I cycled between fear and guilt every second of every minute of every day. Even though I was surrounded by people, I still felt alone. Grief often brings about a sense of loneliness, and I have no doubt that I experienced the stages of grief, both for me and also for Bruce.

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Here is how I experienced the five stages of grief:

DENIAL: Of course, as Bruce experienced his form of denial, in which he minimized what our diagnosis meant, I was sure that I was going to be the one person who would never experience a relapse, and that I would accomplish remission forever. In my mind, I was young, in good health, with a positive attitude and all good things in my life: a solid marriage, a home I loved, and a job that was my passion. This could not be happening to me. Bruce is absolutely correct when he says that our denial was fed by the fact that we didn’t really know what MS was. But that blissfully ignorant state could only last so long because being who we are, we quickly educated ourselves, and we learned far more than we ever wanted to know. 

BARGAINING: While Bru was busy beating himself up for not noticing signs that something was going on medically with me, I did everything I was told. I was a stickler for my injections, carefully rotated my injection sites, kept a symptom and injection site reaction journal, ate well, and exercised as often as I could, all while working full time. In my mind, all of these things were my bargaining chips to ensure that I would not progress any more. I sometimes miss that ignorance or idealism in which I proclaimed that I would be the one person who never, ever progressed because I did everything the way I should have. 

DEPRESSION: Unfortunately, depression is an actual symptom of MS, and not necessarily just a sad feeling due to life circumstances. MS patients with sclerosis (lesions) or scar tissue on certain areas of their brains will experience depression. As a true optimist, I had never felt depression before. But I began losing control over my body and what it could do for me, and the athlete in me cried with frustration. “Friends” walked out of my life because they no longer felt they could relate to me, and I sank deeper into the darkness. If it wasn’t pointed out to me by my nurse, I wouldn’t have even realized that I was dealing with depression. I learned that sometimes, pharmaceutical intervention is necessary in order to live your happiest life. 

ANGER: Bru has always been an angry person, and I have never been. It’s just one of the ways we complement each other. My anger was not directed at anyone or anything in particular, though. I never asked “why me?”, but instead asked “why NOT me?”. I was angry at my body for letting me down, and I was angry that Bruce had to be subjected to this new life of ours. Sometimes his anger pushed me further into depression, and other times I let my anger get bottled up until it was released with a good, long cry. 

ACCEPTANCE: In my world, this stage in the grieving process has been the most difficult, but also the only really satisfying part. Once I was able to accept this new version of myself, all weaknesses and flaws included, I was finally able to feel fully at peace. It wasn’t the life I had imagined for myself and my spouse, but it was the one we got. Accepting the hand we were dealt allowed us both to be more present with everyone and in everything we did, and only upon accepting our life as is, did we truly feel happiness. It’s such a shame we had to learn how to deal with a chronic, incurable, and progressive disease in order to feel authentically happy. 

Today, a friend and I were talking about this entry and she asked me if I am still grieving. My answer was yes. I continue to experience these stages of grief, not necessarily all of them, and definitely not in a specific order, but I certainly have my moments. My friend asked me how I find my way back to a good place despite it all. The answer is quite simple, actually. I simply remind myself of all the gifts I have been given as a result of the journey. While someone else in the exact same position can only see the hardships that MS has caused, I refuse to see anything but the gifts it has given me. 

Mary and I are very like-minded and I love the conversation we had about what a difference one's outlook can make on the outcome.

Mary and I are very like-minded and I love the conversation we had about what a difference one’s outlook can make on the outcome.

I can’t feel my feet, but I pay attention to my body and I know when something is not right.  I can’t run a marathon, but I know my limits and I work hard at maintaining a fit, healthy lifestyle. My career ended suddenly and well before I wanted it to, but I am able to spend time volunteering to help other MS patients, which is as rewarding as teaching was, but in a totally different way. I don’t have new kids every year any more, but I still take my mama Rankin role very seriously, even when my kids become mamas themselves. Many people walked out of my life when times were rough, but then I was lucky enough to meet my MS family, who quickly became among the most important people in my life. 

I wouldn't trade this MS family for ANYTHING.

I wouldn’t trade this MS family for ANYTHING.

Grief is an emotion that lasts a lifetime, but it ebbs and flows along the way. Experiencing all the stages of grief, even the low, painful periods of denial, anger, and depression, is part of what makes us human. How can we fully appreciate how incredibly happy we are, and how amazing this life is, if we don’t experience the low points? After all, the view from the top of the mountain is that much more rewarding when you’ve made the long trek up from the bottom. 

This is the view from the top of a mountain near Skagway, Alaska.

This is the view from the top of a mountain near Skagway, Alaska.

Grief

This week, I am proudly presenting another piece written by my one and only, who walks us through the stages of grief associated with my MS diagnosis. His honesty is remarkable, and it’s pretty clear how raw these emotions can still be today, more than thirteen years later. This is a great read for care partners and patients alike! Let’s all show Bruce some love here!

When Rennie was diagnosed with Multiple Sclerosis in the Summer of 2003, it completely rocked our world. The future we thought we faced together as then 31 year old “kids” was irreparably changed, and the uncertainty of what lay ahead of us was hard to wrap our heads around. Without even truly understanding what exactly a diagnosis of MS meant, it was at that point (although we didn’t know it at the time) that we began to grieve. MS is not generally a death sentence (cases that severe are very, very rare), so what exactly were we grieving for? While not necessarily being conscious of it, we began to grieve for the life we’d begun to plan for. We began to grieve for the promise of our then young marriage (just three years old at that time), and wondered what MS might change about our relationship. And we began to grieve for the innocence that comes with a “normal” life in which you’re not faced with a chronic and debilitating illness, and can instead look only at your future with optimism and hope. As it turned out, this was just the beginning of the grieving process.

Over the next several years, we both struggled greatly coming to terms with the hand Rennie had been dealt. Rennie had to face the prospect of her body betraying her as the disease progressed and caused irreparable damage to her brain and central nervous system. And I, as her husband and best friend, was trying to figure out how to successfully fill my new role as her care partner, while dealing with the fear and anxiety that her diagnosis had already consumed me with. It was a journey that would take me down some very dark and frightening paths, and eventually lead me to a better understanding of who I am and all that I am capable of. And that journey would not be complete until I could finally accept and understand the grief that I was experiencing. The issue was that I didn’t really grasp what exactly it was that I was going through, and it would take until the Winter of 2006 for me to come to that realization.

Around that time, with the urging of our family physician and an increasingly desperate Rennie (because she just couldn’t take my issues on top of everything she was already going through), I’d begun seeing a therapist as a means of working through the panic attacks and crippling anxiety that had taken over my life since the Fall of 2004. These problems started almost immediately after Rennie had her first MS relapse since her initial diagnosis, and while she’d long since rebounded from it I was still a mess. Thankfully, within a few sessions my mood began to stabilize, as the therapist I was seeing assured me that everything I was experiencing was a normal reaction to Ren’s MS. It was then that I first learned that not only had I been grieving over things for the last two and a half years, but that my experience almost completely followed the psychological theory known as the Five Stages of Grief.

This was taken in the midst of my most turbulent time.

This was taken in the midst of my most turbulent time.

The Five Stages of Grief is the theory that when one experiences a traumatic life-altering event (usually the death of a loved one), their psyche begins a step-by-step process of dealing with the grief associated with that event. The five stages are:

  1. Denial
  2. Bargaining
  3. Depression
  4. Anger
  5. Acceptance

When my therapist began to explain the theory in more detail, and discuss my recent experiences with me, everything became clearer. While I wasn’t one to believe in such things, I could see almost immediately that what I’d been going through wasn’t unusual, and that I wasn’t crazy. The conversation that day finally allowed me to begin to come to terms with just how much Ren’s diagnosis had screwed me up, even though I tried to act all the time like it hadn’t. It also made me realize that I’d already been through the Denial and Bargaining stages, was now firmly entrenched in the Depression stage, and still had the Anger and Acceptance stages to go.

So, what exactly were my experiences with the Five Stages of Grief?

Denial: Almost from the second that we were told by the neurologist that Ren had MS, I found myself denying that her diagnosis was anything to be concerned about. In fact, because we’d spent months wondering exactly what Ren was suffering from (with one option even being a brain tumor), the answer of Multiple Sclerosis initially didn’t sound all that bad to me. I even said to the doctor, “Well, I guess it could be worse, right?” To which he tersely responded, “No, this is bad. Very bad.” Feeding my denial was the fact that neither of us really knew what MS was…so there was some blissful ignorance in those early days that probably helped us to get through the initial shock. In any case, even though we quickly began to educate ourselves about the disease, I realize now that as a coping mechanism I began to block Ren’s illness out of my mind as much as possible. This became easier once the symptoms of the relapse she experienced that lead to her diagnosis began to subside, and things almost returned to a sense of normalcy. She’d lost a lot of strength and function, and now had permanent numbness on the entire left side of her body, but to someone just hoping against hope that things were OK everything seemed to be normal to me. It was a “new normal,” of course, as Ren now had the daily injections of Betaseron (meant to slow the progression of MS) to administer to herself (sometimes with my assistance), as well as regularly scheduled visits to the neurologist added to her calendar. Still, things were good, and we were both hopeful that they’d stay that way.

Bargaining: The first rumblings that things were beginning to affect me happened about a year after Ren’s diagnosis. After attending countless seminars about MS, and educating ourselves almost to the point of oversaturation, I started to wonder what warning signs I’d missed that she had not been well. It was easy to see that she’d been suffering from MS for several years (even before we became a couple), and I was now obsessed with figuring out what I hadn’t noticed over the eight years we’d been together at that point. She’d gotten progressively clumsier since we’d been together, which was odd because she’d always been an athlete, but Ren chalked it up to her just being a clutz. She’d had a series of strange illnesses as well, including a temporary loss of hearing in one of her ears that was explained away by a doctor as an inner ear infection. As I thought more and more about it, I got upset with myself that I hadn’t noticed that something was wrong earlier. Of course, what did it really matter? Ren would still have MS, and would only have been diagnosed earlier. While the positive would have been that she’d have been able to start on the disease-modifying drugs sooner, it ultimately wouldn’t have accomplished much at all. I was really just beating myself up over it.

On this trip to Washington, D.C., I was a complete wreck, and Ren did a lot of exploring on her own while I was experiencing such severe panic attacks that I could hardly leave the hotel room.

On this trip to Washington, D.C., I was a complete wreck, and Ren did a lot of exploring on her own while I was experiencing such severe panic attacks that I could hardly leave the hotel room.

Depression: This was the stage when everything finally hit me like a ton of bricks. As mentioned earlier, when Ren had her first relapse after diagnosis in the Fall of 2004, I began to completely meltdown and spiral out of control. The realization that everything wasn’t alright, and that she really did have a progressive illness caused me to go down a “rabbit hole” of anxiety (not unusual, as anxiety and depression are so closely linked to one another). It got so bad so quickly that I even became somewhat of a hypochondriac, routinely taking trips to a series of doctors in search of whatever mysterious illness I thought I had that week. It not only became exhausting for me, but for Ren as well, as she got swept up in my craziness too. One time she had to take me to the emergency room when I was convinced that my throat was closing up and I couldn’t breathe. All the proof I needed that it was psychosomatic came when as soon as the doctor on call examined me, the constricting feeling in my throat immediately disappeared. I reached a breaking point just before Christmas when I went back to my hometown to see my childhood doctor. I was desperate to find out what was wrong with me, and what was causing all of these unrelated symptoms. Within moments of seeing me, and hearing me talk about everything that had been happening, this doctor did something all of the others I’d seen had not done. He put his arm around me, looked me in the eyes, and simply told me that what I was going through was normal. Normal because I had been in complete denial about Ren’s health, and once the recent relapse made it clear that she was not OK, all the anxiety and depression I’d been bottling up about the situation was released at once. He told me I didn’t need a physician…I needed a therapist. It took me a while to accept this news, and to follow his advice, but once I did I began the long, slow climb out of the crater I had found myself in.

Anger: Full disclosure here: I’ve always been a pretty angry guy (although not so much anymore…middle age seems to have mellowed me). So once I made it through the period of deep depression and anxiety I’d been in, it did not take long for the next stage to take hold of me. I felt that Ren and I had been robbed of the great life we’d planned with one another, and the more I thought about it the angrier I got. Sleep became rare for me, as I’d toss and turn all night, burning up inside about the hand we’d been dealt. Therapy helped somewhat, but since that was just once every two weeks, I’d find myself consumed with anger almost 24/7. I took to writing in a journal (something not in my personality at all), with the hope that it might help me to purge myself of the resentment I had about everything. Like therapy, it helped a little, but it was not enough. At a time when Ren’s future seemed so uncertain and I should have been focused on living as best I could in the moment, I was completely consumed by negative thoughts. It took about another year (and pharmaceutical intervention) for me to finally release the anger and move on to the final stage of grief.

Acceptance: Sometime in the first half of 2006, things began to settle down for me. The anger, anxiety and depression were still there on occasion, but it was tempered with the realization that I really wanted to enjoy the life I’d built with Ren. Truthfully, the strength and bravery she’d shown over the previous three years as she got used to the idea that she had a disease like MS, made it much easier for me. Her ability to continue to appreciate life and live it to the fullest, enabled me to accept the situation as well. We were still only both 34, and had a lot of living left to do. Plus, once I came out the other side of my own crisis, it was even clearer to me than it had ever been that I was with the only person I really had ever wanted to be with, MS or not.

One year after our disastrous D.C. vacation, we went to Puerto Rico. By then I'd finally made peace with our situation, and was able to fully enjoy our vacation.

One year after our disastrous D.C. vacation, we went to Puerto Rico. By then I’d finally made peace with our situation, and was able to fully enjoy our vacation.

So, what do all of the words I just typed really mean? Do I have the answer to overcoming the grief associated with a diagnosis of MS? Hell no…because I still struggle with it from time to time. I wouldn’t be human if I didn’t. By sharing my experience what I hope that I’ve been able to communicate is that people are often stronger than they know or even give themselves credit for. When faced with the idea that Ren had MS, we both had to complete our journey to acceptance not only to become the people we are today, but also to continue living the life we always wanted to share together. It hasn’t always been a smooth ride for us, but for the most part we’re doing things the way we’d always hope to. Living life together, and enjoying the incredible relationship we’ve always shared. And probably with even more perspective than we would have had without the silent third partner of MS taking the ride with us.

These days, even with Ren's limitations, we are still able to have regular "date" nights that include fun activities like going to a retro arcade.

These days, even with Ren’s limitations, we are still able to have regular “date” nights that include fun activities like going to a retro arcade.