A Conversation

Wake up, Ella. You’re letting life pass you by. Remember when you said you wouldn’t do that? You wouldn’t lose sight of the bigger picture? Gone is the confidence. Gone is the positivity. Gone is the girl that believes she can weather anything with a good attitude.  Remember when you wrote about the little things? […]

https://sickandsickofit.wordpress.com/2015/08/04/a-conversation/

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The Painful Reality of Fibromyalgia (personal thoughts and feelings)

My Personal Experiences When I was first diagnosed with Fibromyalgia, I felt like an outcast.  I felt like “WHY ME”.  I felt like I had a plague. I felt like who would ever want me with all of this pain.  I had to get all these thoughts out of my head so that I could […]

https://thesilenceofpain.wordpress.com/2015/08/14/the-painful-reality-of-fibromyalgia-personal-thoughts-and-feelings/

We are not alone

I have decided to start republishing posts from some of the blogs I read when I’m not posting my own writing. Not because I’m being lazy or I’ve run out of things to say, but because I find that one of the things that helps me the most is knowing that I am not alone in dealing with chronic illness. Having fibromyalgia or any chronic condition isolates us. We don’t want to bother others with our troubles and before long, we’re all alone in our own little bubbles of misery. I think it’s important to take the time to hear what others have to say and I am often pleasantly surprised when I do. It’s comforting to me to know that I am not the only one suffering from certain symptoms or feelings. I hope that by sharing some of what I find will bring comfort to others as well. 

Looking up

I know that my last couple of posts have been downers. It really has been a rough summer, but it’s not all bad! I put a lot of effort into finding the good in a situation, so I wanted to take some time to talk about some of the good things that have happened over the last few months. 

For starters, I got engaged!! This happened back in May, so I’m more than a little late in announcing it, but it’s definitely been the highlight of my summer. As awful as this summer has been, there is one definite positive to come out of it: I have absolutely no doubts about the man I’m marrying. We’ve been through a lot since we got engaged and it’s only made us stronger. Even if the road gets rough, I know that he will be right there beside me every step of the way. I know that if I stumble, he’ll be there and when I regain my wings, he’ll soar right along with me. If there is a better feeling in this world, I haven’t found it. The wedding is set for early November and I could not be more excited. 

Of course I couldnt’t leave out the ring!

I’m also excited to get back on my feet. Yesterday, I got the official clearance from my doctors to get back to normal. (Yay!) It’s going to be a long road and I know it won’t be easy, but it’s nice to feel like I have at least a modicum of control back. I may be a house cat/couch potato by nature, but I’ve managed to change some of those tendencies and it’s been incredibly difficult to be forced into doing nothing. 

I’m looking forward to the challenge of getting myself moving again and I hope to have more good news to report soon! 

The light at the end of the tunnel

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.

Pain and guilt

Lately, I’m rediscovering just how insidious pain really is. If there ever was a double edged sword, it’s name was pain. Living with pain is one thing. I find it far easier to manage my day to day issues when I’m on my own. Loving with pain, however is a whole new form of anguish. 

Part of the problem is that pain is completely subjective; you can never fully understand someone else’s pain and no one will ever understand yours. If I’m on my own, I don’t worry about that. My pain is my own and I don’t feel the need to share it with anyone else. The truth, however, is that I am rarely on my own. I’ve been fortunate enough in my life to have nearly always been surrounded by people who love me. They want to understand what I’m going through or how I feel and that’s where things get messy for me. There is no way to share your pain without inflicting it on others, which is why I generally keep it to myself. It makes me feel guilty to watch my loved ones suffer under the weight of my pain. They can’t physically feel it, but I’ve found that describing it in detail is often enough to cause emotional pain in someone else. 

I don’t mind keeping my pain inside, I’m used to it; most of the time sharing it just makes it feel worse. Sometimes though, some very rare times, the only thing I want is for someone to understand; someone to share the burden when it just gets to be too heavy to carry on my own. 

Every now and then I run into an instance that forces me to reevaluate the very scale by which I measure pain. Something happens that makes me realize what I thought was a 10 (aka the worst pain you could imagine), was a joke. Those events leave echoes that eat away at me for hours, days or even weeks after the pain itself is gone. 

Then, I have a choice: 

A) I can suffer in silence and make everyone around me miserable 

or 

B) I can choose to let someone in, sob my way through a generally graphic, horrifying description of my agony, thus sharing the burden. 

At first glance, it’s a no-brainer. Obviously, I should choose B, if that really helps. And yet… If I choose B, yes, my mind is eased a bit, as far as the physical pain is concerned. Then comes the backlash. I’ve just unloaded my physical trauma onto someone I love and now I have to watch them struggle under the weight of this new knowledge. They now have new concerns about me or my wellbeing, they empathize with me and now they’re stuck with the image of my suffering in their heads. In the end, the guilt I feel over dumping that burden on someone else makes me feel even worse. 

I know that I shouldn’t feel guilty about it, I know that that’s exactly what a support system is for, but I can’t help it. If I had my way, none of my loved ones would ever suffer. I can’t stand the thought of being the cause of their suffering and I hate feeling like I’ve just heaped a whole new load of worry on their plates. 

Right now, you’re probably thinking that I should consider counseling. Believe me, I have. I’ve been to many different therapists who specialize in pain management, they’ve all been extremely wonderful. My problem is that I’m never able to really open up. Even after seeing the same person for months, by the time I get to their office, I’ve mentally tidied up all my issues into nice, neat little packages and when I talk about them, it’s as though I’m discussing the weather. More than one therapist has outright told me that they don’t know how to help me because they can’t get a read on how I feel about any of what I tell them. It’s not intentional on my part, it’s just that I have trouble connecting with people and if you’re outside my little circle, it’s incredibly difficult for me to let you in.

The upside, (which I’ve been realizing as I type this), is that writing it down and putting it out here helps. Sometimes, you just need to be heard, even if what you actually say doesn’t directly relate to the issue you’re dealing with. 

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