Tag Archives: chronic illness

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.

Lemons

This week I’ve been thinking a lot about my blog and what my purpose was when I entered the blogosphere. I’m not sure I knew where it would go, but my mission has remained the same. Although I draw heavily from my life as an MS patient, I like to think that my experiences are relatable to anyone who has any kind of chronic illness, as well as their care partners and loved ones. Above all else, in my role as the eternal teacher, my hope is and always has been to connect with those who have similar struggles as mine and to educate others on the often unspoken needs of people with invisible illnesses. 

Truth!

Truth!

I knew I was going to start a blog for months before I actually did. I thought long and hard about what to even call it. I wanted the name to embody who I am, but give me the freedom to write about whatever I wanted. My friends and I did a lot of brainstorming together, trying to decide what words best describe me and my outlook on life. I have always been an optimistic person, and my outlook has definitely been tested during the last twelve years. But nothing has been able sway my mindset. Every dark cloud has a silver lining, as long as you figure out where to find it. You might have to dig a little deeper or look from different angles, but I guarantee you’ll find it if you look hard enough. 

clouds-dark-clouds-tree-hill-grass-field-nature

I finally decided to go with the lemons and lemonade theme because it is a perfect representation of how I live my life. Obviously things happen in life that suck. Big time. Those are the lemons. But those lemons can easily be made into lemonade, which is a heck of a lot sweeter and is also much more enjoyable. 

Looking at the big picture of my life, the bulk of the lemons I’ve been given can be traced back to the MonSter. I never questioned why I had to get MS, I only questioned what I would do to make lemonade with it. I think I’ve done a pretty decent job at it, because I honestly feel that for all the crap MS inflicts on me, I have been given many unexpected gifts that I never would have been given otherwise (which I will share in detail on a future blog entry!).

lemons 2

Getting back to the mission of why I’m doing this whole blog thing, I’d like to clarify the following: there is a huge difference between negativity and honesty. At times I feel the need to write a piece that is an honest description of my life. “Negative” has never been a word used to describe me. Not ever. But a truthful explanation of my life with MS can be perceived by others in a negative manner because they don’t live with it. It is during those moments that the teacher in me surfaces to help them see the reality of life with MS, which is far too frequently brushed aside and certainly misunderstood by the population at large. 

I am being true to who I am and what my purpose is. I am now and always have been a girl who sees the glass as half full. At times the glass is empty (honestly!) and I can describe what it looks like for others to see, because maybe their glass has only ever been half full (or half empty!) and they don’t understand since they have never experienced it.  Just because the glass is empty, does not mean that it’s a bad thing. It just means that I need a refill… Preferably lemonade, please!

lemonade 1