Playing with the D-Rings of Life

So maybe it was the thrill of being in a foreign place that a sense of adventure commandeered my better judgement. It could have been because my husband really wanted to go and this was a couples’ vacation. More likely, I was exhausted from life, hence the need for this vacation away, and he got me when I was vulnerable.

Regardless, I found myself strapped into a harness, watching the waves crashing against our tiny boat. I realized there was a lot of water around us. I started to get second thoughts. As if our local guides sensed my concern, they began to let the line out and I bounced on the bottom of the boat. It distracted me, and moments later, the lines on our sails were let out and that boat got further and further away.

There is no other way to describe it: we were being flown like a kite.

I’m not crazy about heights so I decided it was best not to look down. I didn’t like the way the clouds were gathering (yes, there was a storm approaching), so I decided to look into the distance. Again, land was a long way off, but it didn’t look so scary. And then it happened … my husband told me to stop playing with the d-rings.

I had no clue what he was talking about until he calmly explained.

Annoyed, I told him I had to do something to keep myself from being anxious up there. I mean, what was the big deal? He’s an avid fiddler with anything and he was telling me not to do so?

He assured me that if I wanted to go down in a hurry I should just keep doing what I was doing. Alright, what he really said was the only thing keeping me attached to the sail was the d-rings. That I was fiddling with.

Now, I’m not one to panic, but I sure did that day. Thankfully, it took the form of freezing in place. He had to pry my fingers from the d-rings.

That was almost 20 years ago and I have never been flown like a kite since…

But, it did get me to think about how there are times in our lives when we find our situation precarious, much like my kite-flying adventure was to me. It also made me think of what I learnt from such an experience … besides never doing that again.

First of all, we should live life to the fullest. That means be watching for opportunities and when one presents itself, we should recognize it as such and take advantage of it.

Second, accept the fact that by taking advantage of opportunities, we are sometimes going to find ourselves in a less than optimal, even downright bad, situation. Gotta take the good with the bad, right?

Third, cultivate the types of friends and colleagues that will not only notice when we’re heading for trouble, they’re invested in you enough to warn and even, when called for, take steps to prevent serious harm: especially the stuff you don’t see coming.

Life isn’t without its dangers, but when you have people willing to be flown like a kite alongside you and keep your fingers off the d-rings, well, then you’re set for whatever opportunities come your way.

Personally, I’d stay away from anything with a d-ring…

All You Need is 60 Seconds

If you have a chronic illness, you need an elevator pitch.

You know what I’m talking about: the less than 60 second sound bite that explains you with your illness and how the world should deal with that knowledge. I didn’t think it was so difficult to come up with one.

The Pitch: I have rheumatoid arthritis, an autoimmune disease, involving inflammation of my joints, including those that keep my organs functioning, as well as chronic fatigue and pain. Essentially, my immune system is attacking itself and the only way to treat it is with medication aimed to reduce my immune system; the result being increased susceptibility to infection.

Pleased with myself, I shared this with my twenty-six year old daughter. She has fantastic neutral face. I wanted genuine feedback. I got it.

I may have explained my condition, but I left out the most important aspects of the perfect elevator pitch: what it means for others … in other words, why they should care and how they should relate to me.

Not to be dissuaded, I tried again. And, again. We were at it all afternoon. Turns out there’s a reason this isn’t as easy as it looks: it’s about seeing it from the other person’s perspective and we can all relate to how difficult that can be at times!

So here’s what I did: I got the clinical explanation out of the way as quickly as possible. It’s true, almost everyone has heard of arthritis. For the sake of a 60 second explanation, it really doesn’t matter that rheumatoid arthritis is like no other arthritis. I have to save that educational moment for another time.

Instead, I focused on what a person would see and what they would not see about my illness. Then, I worked out scripts people can use to interact with me.

For instance, I get tired easily, but at the same time I don’t want to miss anything (or let anyone down). If there is an understanding that I will do everything I can to avoid cancelling a get-together, appointment, deadline, or other scheduled event, and that I don’t want people to stop counting on me or start making allowances for me, then we have a starting point.

My daughter encouraged me to remember that there is limited mobility and strength which translates into asking for help opening water bottles on a regular basis. What is important is that I would prefer to ask for the help, as opposed to people pushing the assistance on me. If I promise to ask when I need it, we have a script we can all respect.

So, armed with these (and many more) examples, I tried my pitch again.

Pitch Take 2: I have rheumatoid arthritis. It’s an autoimmune disease affecting joints, including organs, and involves chronic fatigue, pain, and inflammation. I may have to ask for assistance opening a bottle, but I’m not afraid to do so. I may have to ask for your understanding if I cannot meet a deadline, but I’m not afraid to do so. I may have to ask for alone time when I’m overwhelmed with pain or lack of sleep, but I’m not afraid to do so. I’m more susceptible to infections because of the medication used to treat my disease, so do as you would with anyone else: don’t cough on me and please wash your hands regularly.

I want to live to the full extent that I am able to do so and that includes letting me try and fail things. What I want from you is not to do everything for me, nor to feel sorry for me. If I need help, I’ll ask, and if you can give it, all’s great.

If you have a question, definitely ask. When a person asks a question it’s a win-win: you get the information (hopefully) you’re looking for and the other person gets to give it to you. Such a simple exchange can mean more for developing understanding and fostering trust and respect than any one thing can do.

Just under 50 seconds.

It’s a work in progress, but I’m more convinced than ever that creating an elevator pitch and accompanying scripts for my chronic disease is an exercise that will pay off and then some.

Lies We Tell

We used to tell our children that an act of omission is as bad as an act of commission. That is, leaving out salient details is still not telling the truth, especially when we’re asking the questions…

I find myself committing acts of omission every day.

I had to cut short a get-together with a friend not too long ago, explaining that I hadn’t slept well the night before. It was absolutely true: I had slept fitfully and maybe 2 hours. What I left out was the reason: I’d had a flare-up of my rheumatoid arthritis.

Now, that doesn’t sound so bad what I left out does it? Let me tell you why I think it matters.

There are days, weeks even, when I am able to do less than usual, certainly far less than I would like, either directly or indirectly because of my chronic disease. It’s difficult enough to admit this to myself, let alone someone else. Add in that I may inconvenience or let someone down and I think you’re getting a glimpse of what I’m getting at here.

On the surface, people can be extremely gracious (we are Canadians, after all), and accommodating, given the reason of insufficient sleep for less than par performance or participation. I don’t need people to be polite. I want them to tell me when I’ve put them in a difficult position and then brain-storm together how to handle it.

Consider if I had a broken leg and that’s why I had trouble sleeping. I share this with people and they immediately get where I’m coming from. In fact, we’re likely to exchange stories of people we know that have been in similar situations. If I slip, I’m clumsy and we share a laugh. If I attempt an ambitious snowboard stunt and almost make it, I may get an approving nod and again we share a laugh.

However, I explain that I couldn’t sleep because I was in pain and … instant silence.

People aren’t sure what to say. Maybe we say “sorry” (we are Canadians), suggest ways in which I could “deal with” the pain … and the list of polite, yet distant, responses continues. I don’t want people to feel awkward about asking me or talking to me about my health. I want them to ask me straight out if I feel it’s under control, or being managed, just as they would ask who the surgeon was that set my broken leg.

I don’t know if it’s because one is a physical and temporary condition and the other is a physical / mental and chronic condition, or what, but it does make you stop and think, which brings us back to what else is going on in our heads.

For me, I’m wondering if the person I’m speaking with will think I’m unreliable, weak, fabricating or embellishing my condition, or worse, wonder why I didn’t just tough it out. I want a world in which it is not mutually exclusive that I have a chronic disease and am reliable.

There’s a reason people are reluctant to discuss a chronic condition: we don’t know how to manage the conversation. We have no script.

I can hear the argument: You don’t have to tell people everything. It’s absolutely true. I don’t have to tell them that I am less reliable due to a health condition because I don’t know when there will be a flare-up. I can do what I’ve done for years and manage my health as best as I can and give acceptable reasons for when I am unavailable. But is that really the best we can do?

I want people to see me as capable of managing my health and my life as anyone with a physical and temporary injury: because I am. And, if someone calls me out on something that they believe I’m not managing, I’ll just call them a true friend. I don’t want people to “fix” me, but just like the person with a broken leg, I want to be able to ask for a little help now and then.

Either way, what we leave out of a conversation can be more important than what we include and that’s something we should talk about.

My Blood, My Results: So What?

No one said this was going to be easy and most days that’s just fine with me. I’m not looking for easy; I’m looking for doable.

Being diagnosed with a chronic disease changes your life in many ways. You bounce between relief that you know what’s wrong with you and horror that you know what’s wrong with you. Not to mention you are inundated with information: about what you should do, what you should not do, when you should do it, when you should not do it, how you should do it, how you should not do it, and the new order of things goes on.

After a time, if you’re fortunate, you stabilize and that’s when it hits you that you’re the passive participant in your own life. You wait for the specialist to tell you the type and amount of medication to manage inflammation, fatigue and pain. You wait for the technician to tell you when they will draw blood. You wait for the receptionist to tell you when your next appointment will be. And, you wait for someone else to tell you the results, consequences, and next steps of every test you take.

If you look at lab results as a sort of report card on how your disease is being managed, you get a sense of how impatient a person can feel waiting to hear about those results. And, if you don’t hear about the results unless there is something terribly wrong, well, I don’t know about you, but I like to know before I fail that something is going in that direction. That’s why I’m getting my lab results online from now on.

You could ask: But what if you can’t do anything about the results? Good question.

I mentioned in my last post about watching erythrocyte sedimentation rate (ESR) as it indicates inflammation level and is one piece of information that my rheumatologist uses to decide if my medication increases or changes. For someone with RA, it isn’t unusual to have a slightly higher than normal ESR. Anyone living with inflammation can tell you if their disease is active just by being conscious.

Seeing an increasing trend in ESR is useful to me for two reasons: the pain is real and I need to address it, and it gets me prepared for a conversation with my rheumatologist.

When I say the pain is real I mean just that, which could seem ludicrous to some people, but there it is. The problem is that when you’re living with chronic pain, all too often you don’t know when it’s too much until you find yourself crying in the corner. I see my ESR increasing over a couple months and I will take the discretionary anti-inflammatory medication more readily as opposed to toughing it out.

Every time you have a conversation with your physician, you need to be your own staunchest advocate. By this I mean, you simply cannot agree to take more of a medication because you are told to, nor can you agree to taking a biologic without doing adequate due diligence. Remember, this is your life, not someone else’s. By all means, listen to all the good advice of these experts, but don’t ever forget: you are the driver.

All this brings me back to getting access to my lab test results … and it isn’t nearly enough, but it’s something that helps me manage and that has to be good enough reason to do it.

There’s a joke I like to tell that illustrates the difference between involvement and commitment. It’s about the roles that the chicken and pig play in making bacon and eggs for breakfast. The chicken is involved, but the pig is committed. I may be the pig, but no one is going to call me chicken.

You damn right it’s not easy, but this is my life, and I’m committed to living it with all the information that is mine.