Fighting Fibro with Fire

Saying it’s been a rough summer is a bit of an understatement. 

Several times, I started writing posts about what I was going through, but I could never get the words out. I’ve never been very good at expressing my struggles; the worse they get, the more withdrawn I become. That’s why I began writing this blog in the first place, it’s one way of dealing with life’s hurdles without the added stress of actually talking to someone.

Unfortunately, even writing out my thoughts is often difficult for me. I have no problem writing about happy, positive topics, but when it comes to pain or stress, I just feel like I’m whining. I know that there are others out there struggling with worse situations than my own and it just feels silly to sit here and whine about my problems, even when I know it will help me in the end. Which brings us to this current post, I guess I’ve hit my limit of what I can actually carry because now, the words are boiling over in my head, so here goes… 

I’ve been dealing with my own chronic illness for my entire adult life. I know how to live with it and I’ve (mostly) finally figured out how to ask for help when I need it. No big deal. It is what it is. Unfortunately, this summer I got a crash course in the monumental difference between living with a chronic illness and loving someone with a chronic illness. I may have said it’s harder to love a sick person than it is to be the sick person, but until now, I had no actual experience on which to base that observation. I can now say with absolute certainty that it’s true.  

I have no problem being the patient. I’m a great patient, (assuming you’re a doctor who doesn’t mind a million well informed questions). I do my own research before the appointment, I generally know exactly what kind of treatment I’m looking for and I’m usually fully aware of any side effects/complications involved. Unfortunately, none of this is very useful when you are not the patient. 

My fiancée has been dealing with his own chronic illness for about a year now, but over the last few months it’s been getting progressively worse and he’s had to resort to some more aggressive methods of treatment. I do what I can when we go to his appointments, but the doctors rarely want to hear from me. 

The worst part, however is having to sit idly by while he’s in misery. The hardest thing I’ve ever done in my life so far is watch him being hooked up to an IV for treatment. I knew he was sick, but until that moment, the severity of his illness hadn’t really hit me. He has to go to an infusion center every few weeks or so and seeing him in there with the other patients, (many of whom are receiving treatments for things like cancer), is heart wrenching. The first time we went in, I thought I was going to burst into tears. I know that his particular illness isn’t life threatening and I know that it is treatable, but knowing that there’s nothing I can do to help only adds to my everyday anxiety.  

That was all at the start of the summer. Between the added emotional stress, taking care of my fiancée and my own existing issues, I haven’t been able to keep up with my routine. If I’m honest, I stopped working out (regularly) at the end of May, due in part to feeling under the weather myself. Much of my summer was spent taking care of my fiancée, (while trying not to smother him with attention). I made a few sporadic attempts to get back into the habit of workibg out or at least walking daily, but those were brought to a complete halt earlier this month due to serious complications with my own health. 

I’m on the mend now, but this last month brought some very difficult decisions and more pain, both physical and emotional than I have ever experienced. I am not exaggerating when I say I now know what my own personal Hell would be; I’ve experienced it at the hands of doctors and nurses under the guise of “treatment”. Before these last few weeks, I was confident that I was familiar with pain. I was wrong. What I previously believed to be a “10”, (aka, the worst pain imaginable), is now only about a “3” on my scale. I laid there, on that table and the only thing I could do was endure it; there was no way to stop it, I couldn’t even move. All I could do was lay there, screaming inside my head, silently praying for it to be over. 

I think the worst part of this whole experience is that I was not expecting that level of pain. I knew that there would be some pain involved in my treatment, but I was led to believe that it would be minimal. Too late, I learned that I had been mislead, whether or not that was intentional on the part of my doctor, I cannot say. I only know that on top of the physical pain I felt during the procedure, I am left with a seething rage as well as a feeling of complete and utter violation. 

I know I’m being rather vague, but at the moment, it’s the best I can muster. I’m just not ready to delve into the details; I still have too much left to sort through before I can process it enough to make it comprehensible. 

I spent the last 2 years training myself to channel all of my stress, pain, anger, etc. into my workouts only to have that outlet unexpectedly taken away from me. I’m not confined to bedrest, but I’m not allowed to do much either. It’s a strange and very unpleasant sensation, not knowing what to do with yourself. Once, I would have turned to art, but there’s just too much pain and emotion to wade through. It’s as though I’m full to the brim and there’s just no way to channel it into any one thing. If I could run, I could burn enough of it off to make it more manageable, but at the moment, even walking is difficult. 

I’ve screamed, cried and raged, but still, I’m overwhelmed. I can feel the black hole of depression pulling at me, drawing me in; it’s taking all of my energy at this point to keep myself from sinking. Two years ago, when I first started writing this blog, I was in much the same state, except I had actually fallen into that hole and hit the bottom. My life was falling to pieces; I was alone, in pain and had no idea how to handle any of it.

I may be in pain now, but I am not alone. That knowledge is truly the only thing that keeps me going. Not only do I have my amazing fiancée, I have my family and I have those of you reading these words. Even if only one other person out there reads this, it is enough to remind me that I am not alone and that is the true source of light at the end of the tunnel.