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Sharing is insanely difficult I believe. It requires one to be open, honest, trustworthy, and more vulnerable than normal. Not only that, all parties involved needs to have similar communication skills and understanding of each other for sharing to be successful. Relationships, both romantic and friendships, require sharing to be successful. Sharing can be learned skill I believe but there are some people that are naturally able to share without even thinking about it. I am one of those people that sharing does not come easily too, no matter how much I learn.

 

Struggling with sharing “me” is most obvious in my personal life. For years now I’ve had many girls tell me that the reason I’m perpetually single is because I don’t “put myself out there”. I usually disagree by stating that girls just don’t like nice guys like myself. After all, I’m capable of putting myself out there; just ask my well-kept skis, road bike, and TV. I’m an excellent listener according to them. However, after participating in Hurt Blogger’s (aka Britt) live-tweeting of her life for 48 hours last week, I’m starting to believe all these people are right, I seriously need to work on putting myself out there emotionally, medically, and in my advocacy. After all, mental and emotional health is just as big of a battle as chronic pain is.

 

Maybe I have fallen into society’s trap of males not sharing their own pain for fear of being perceived as weak or inferior. I like to believe that I’m more evolved than that. For me to become a better advocate and healthier person, I need to care less if I’m perceived as weak or inferior and work harder at being more vulnerable so I can let others help me. Arthritis thrives at making patients feel weak and alone; Britt showed me that not speaking up when needed is just more fuel for arthritis to dictate my life instead of me dictating to it.

 

With that in mind, this post is dedicated to Britt and all those that turned her one-person experiment into an arthritis community movement. From here on out, I promise to become more real with what I’m going through mentally and emotionally, not just physically. After all, these are 2 major symptoms of this ridiculous disease that don’t get talked about enough, especially from males in our community.

 

I am tired! I’m physically, mentally, emotionally, spiritually spent. There is very little left in my tank right at the moment. We all talk about our ability to cope with our disease and chronic pain, well I’m a living, breathing, talking example of being able to hide behind my coping skills right now. My skiing, gym rat, working, and photography are all attempts at buying me time in order to try and fight my way out of this dark place. I’m still fighting which is a good sign but I’m not sure if it’s because of my character as a person or because I drink way to much caffeine.

 

I didn’t realize just how tired I was until a couple of weeks ago. A friend, for interest of privacy I will call her Layne, was trying to put some friendly peer pressure on me in order to reapply to Medx as a scholar again (my application was rejected last October). One of Layne’s reasons for wanting me to reapply was because I’m so good at being everyone’s “go to” when they need cheering up. A normal person would be flattered by that I’m guessing. For some reason, my tired mind went to the fact that if you look at any of my social media timelines or phone you won’t find many messages initiated by other people. If I don’t post about my mindset, pain, feelings, or current state of mind not many people seem to be interested in how I’m doing (It is easy to forget that successful or active patients still need support, I certainly know that I’ve forget this way to often). This mental realization on my part was like running right smack into a concrete wall. I went from coping but not realizing it to feeling alone and suddenly realizing just how hard I was working at coping in a matter of seconds. In my case, that alone feeling was the straw that broke the camels back as the saying goes. Suddenly, a good day of 3 to 4 on the pain scale felt more like a 6 or 7. No one likes feeling alone, especially when you’re battling chronic pain.

 

The logic part of my brain knows that there are many people out there that care about how I’m doing. I know my train of thought regarding Layne’s comment is flawed and that I’m only hurting myself. Unfortunately, no matter what I do I can’t shake this train of thought right now. Even as I write this post that comment is still rattling around my brain. In my case the exhaustion is winning over logic. My guess is that if I’m having this problem there are more males out there that have fought with this too. Why is it considered weak for males to admit this I wonder? I’m tired; this is just a symptom of my disease.

 

My exhaustion is also causing to me to get angry at stupid stuff. The best example is this past Friday night. Britt and I were working on a checklist for items needed for a possible climbing/hiking trip we want to do this fall. Since I had spent part of Friday night at the gym I had wanted to work with Britt while lying on my couch with ice packs on. After all, that is what Ipads are for right. For reasons I still don’t understand, I was unable to figure out how to edit our Google doc using my Ipad. Instead of calmly getting out my laptop to continue to work on this exciting possibility, I became incredibly angry. I was pissed off!!! My exhaustion mentally had caused me to get pissed off at something relatively easy to fix. Normally, this would not be a big deal but anger uses a butt load of energy, which I don’t have much of. To put it another way, I was digging myself a deeper hole just because I’m working so hard at trying to cope.

 

I know part of my exhaustion is coming from my surgery. As most of you know, I had my right hip totally replaced last October and have been kicking some ass in my recovery. Since total joint surgery is a major event in anyone’s life, all I’ve been posting about lately is about my accomplishments since surgery. For obvious reasons not much else has help my interest lately. This is especially true since I was able to ski on New Years Eve despite my doctor trying hard to get me to take the entire winter off.

 

Obviously, I have forgot about the mental and emotional aspect of recovery. Maybe I was focused too much on the physical aspect of physical therapy and forgot to treat the entire body. In some respects, mental and emotional pains are more exhausting than physical pain. As a male though, lifting weights and skiing seem like the most logical way to recover from surgery. Gym time is doing, talking about my mental state seems like gossiping. I know better but that didn’t seem to matter.

 

There is part of me that feels like talking about things like mental issues or emotions is whining. After all, my life really isn’t that bad especially compared to other patients. I currently don’t have to take biologics and my methotrexate intake is still in pill form and not shots. Everyday pain control is through Norco but even that is no were near Dr. House’s intake for example. My current job has excellent health insurance and I have some money in the bank. With that in mind, do I even have a right to feel depressed or down. There are far too many people in my community that don’t have health insurance or a job for example. Even though that I know that it is stupid to even consider if I have the right to feel depressed, I still am. Comparing my personal patient story to others is also counterproductive to my mental and physical well-being but I’m still doing that too. Great, now I can add guilt to my list. Again, I’m just that tired.

 

The brilliance of Britt’s 48-hour live-tweeting experiment is that it gave others a more complete picture of her life with a chronic illness. She went beyond self-editing or selective sharing and laid it all on the line. Thanks to her courage, many, many others followed suite and started sharing their own chronic life. What started as a 48 hour project is now a movement using the hashtag #chroniclife. I now know that there difference between sharing and whining lies in my own actions. Sharing involves letting others into my complete life regardless of how its going, whining is just talk.

 

I need to follow Britt’s lead and start sharing a more complete picture of my chronic life. By becoming better at sharing and putting myself out there will not only help me by expanding my support group, it will allow others to feel more comfortable coming to me for something more than just “cheering up”. Advocacy, along with life, should be about so much more than just sharing facts and figures. It should be about bringing diverse people together in order to share with the hopes of stealing knowledge in order to become a stronger person.

 

One final point. I’ve seen and cheered at the phrase “I am not my disease”. The phrase makes sense initially. I’m now thinking that I don’t care if people associate me with my arthritis. I believe that if I better accept my chronic pain and arthritis into my life, I can start to use the good things that have come from this diagnosis in order to become a better, more engaging person. As much as we hate to admit it, I believe that part of the strength of the #chroniclife moment has come from all of us working harder to enjoy life and each other’s company which is a positive side effect of our medical journey. Britt showed us that yes, arthritis is constantly in our lives but that doesn’t mean it has to define our lives. I’m ok with being known as an arthritis patient because despite my current down period, I know that I’m still not done defining what it means to be Alan, which is far more important than what others might label me as.


Comments

I’m Tired — 2 Comments

  1. I read this and then started watching a movie with my Dad . . . so I’ve had time to digest what you’ve said and can honestly say I haven’t been able to stop thinking about it.

    First – I can completely relate on the whole having to initiate conversations. I found it very difficult at first to swallow when my friends really wouldn’t ever reach out to me. It’s taken me awhile, but I’ve realized that since so many come to me for help or support, they don’t always think I need it. It’s hard to ask for help, but I’m definitely learning to put myself out there more in that way. I’ve definitely had to work on accepting my friends how they are and forgiving myself for being upset about it.

    I think you’ve definitely been vulnerable and have shared a lot of your experience with others! Don’t be so hard on yourself like you HAVE to be so much more open – I think you’re already doing a great job with that 😉

    I love this post and love how real and raw you were in it. I’m sending you a big virtual hug right now!!!!!

    I ABSOLUTELY love this —> “I’m ok with being known as an arthritis patient because despite my current down period, I know that I’m still not done defining what it means to be Alan, which is far more important than what others might label me as.” And you’re right! You’re not done defining Alan!!!! Go kick ass!!!

  2. I’m a 54 yr. old female. I was diagnosed with R/A approximately 6 yrs. ago , & my life has been a living hell since!! I have been on every med you can think of, EVERY!!! I’ve never been “lucky” enough to go into remission! I’ve had a constant flare for most of these 6 yrs. my last RHUEMY visit my doc put me on Orencia . It is the first med that has helped me even in the smallest way! But, still not gone into remission! This is SO FUSTRATING for me! I was always on the go ALWAYS! Now, Im lucky if I can take a shower every 2/3 days, I can’t go grocery shopping etc. because of anyone within arms length of me has a virus I’m on my butt for a week! Most of my family & friends thinking I’m faking to a degree. They know the “old” me. I’ve been looking for a support group close to where I live, if there is such a thing for people with R/A. I try very hard to keep a positive outlook but, with not having the right meds , or being able to go into remission even for a day, a week, a month, it’s getting more difficult!! I’ve been hospitalized for depression due to R/A. Instead of getting easier to live with it GETS HARDER EVERY DAY! I think having a support group would help to some extent. I’ve had to do most of my research about R/A on my own & that’s fine but, sometimes it would be nice just to hear someone say I UNDERSTAND how you feel!! Thank you, Victoria

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