Rheumatoid Arthritis Bungee Jumping

RA Guy Bungee JumpJust as quickly as I bungee jumped into my latest flare yesterday, the invisible elastic cord snapped and pulled me right back out. Today, I am happy to share that I am back to my usual normal. No, that doesn’t mean that I am pain-free, or that the inflammation has gone away completely. It just means that I’m back to the level of disease activity that has become a part of my daily life.

Like I said a few weeks ago, after I go over a horrible stomach bug, it feels like a blessing just to get back to the pain and disability that I have grown used to.

And the more I think about it, being in a flare is actually very similar to bungee jumping. I jumped once myself, many years ago when I was still in grad school. It wasn’t the typical straight off a bridge jump, but was more of the Las Vegas style huge arch type of jump…still, it was scary (and exhilarating) as heck!

Let me start, though, with the differences. With a real bungee jump, you have time to prepare yourself…mentally and physically. You start telling yourself that yes, you can do this. (Of course, the second you jump, those thoughts turn to what the heck was I thinking?) You strap yourself in, over and over again, and all of the buckles and belts and so on are checked, and double checked, and triple checked. Then, finally, you step out on the edge (or in my case, are raised to the top), and then one…two…three, the jump begins!

With yesterday’s flare, there was absolutely none of this preparation and forethought. The most simple explanation would be that it felt like while you were sleeping, someone put on the body harnesses, snapped all of the buckles, hoisted you up, and then pushed you over the edge into your freefall. Only when you are in that seemingly endless descent do you actually wake up, open your eyes, and realized what’s going on. This is what it feels like to wake up with a major flare.

And when one is actually bungee jumping, those first few seconds of fear immediately turn into one of the biggest rushes ever. It feels so good to just fall free, while the air is brushing against your body. Of course, in a real free fall one knows more or less where the end is going to come (hopefully, before one reaches the ground..haha!), so one can actually sit back (figuratively speaking, of course) and enjoy the experience. Now let’s get back to a flare. While in a flare, there is this same sensation of extremely rapid downward descent. There is, however, absolutely no indication of when the end will be reached, when things will stop getting worse and once again return to normal. There is no moment, not even one second, to stop and take a break. Sometimes it feels like there is even no time to think, and nothing to grab on to.

Yesterday, I was able to pass though my flare with much less anxiety than I previously used to experience. (And no, I am not going to say that I actually enjoyed it–like an actual bungee jump.) Looking back, I realize that I have much more confidence in my ability to get through this flare. As long as I know, during every moment, that I am doing what I need to in order to take care of myself, I feel just a little better. Quite often what I need to do in five minutes is going to differ from what I need to do now, but I’m going to concentrate on the now. I’ll concentrate on what I need to do in five minutes when that moment arrives.

I’m also starting to figure out that trying to figure out when the flare is going to end actually makes the flare seem even worse. If I tell myself things are going to get better in a couple of hours, and two hours later I’m feeling worse, well then the original challenge that I am dealing just increased in terms of complexity. So, for the first time ever in a flare as severe as yesterday’s, I honestly did not once wonder when it would end. I just knew that eventually, I had no idea when, I would reach the bottom and then start to bounce back up. In the meantime, (back to my previous point) I was going to continue to focus on what I needed to do at the moment. Every hour, every minute, every second.

If I want my flares to immediately go away, and they don’t, I’m always going to refer to them as lasting much longer than they were supposed to. If I just keep my mind open, and bunker down and continually take care of myself (and reach out!) during a flare, then once it’s over I can actually say that it ended more quickly than I expected.

Once again, I can say that I survived my most recent flare.

For the first time ever, however, I can also add that it finished much sooner than I could have ever expected. (The secret, of course, being that I had no expectations about when it was supposed to end.)

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Bad Flare Day

Wow, talk about a bad flare day. I’m definitely having one today. One of the things that I wrote when I first started blogging was “12 noon is the new 8am – life with RA.” (On a side note, I think that’s the first time that I’ve put a sentence’s closing punctuation inside the quotation marks…what exactly is the rule on this? A quick online search says its a stylistic choice.) Back to the 12 noon thing, though. Today, this saying could not be more true. All morning long I’ve been thinking to myself, “man are my feet hurting!” Usually one foot hurts worse than the other, one ankle hurts worse than the other, and so on. Not today. Today, both sides are absolutely equal…and while it’s me lower body that is getting most of my attention (ever seen feet that look brighter than a tomato?), the fact of the matter is that everything hurts, from top to bottom.

I don’t find myself getting as anxious as I might have in a previous flare of this severity, which I guess is a good thing. But I do find myself once again being surprised at how much it can actually hurt. (And I’ve probably had hundreds of flares that were as bad as today’s is.) You see (and I am sure that others who live with this will know what I am talking about), there is pain that is so bad that even though it registers in the mind at the present, as soon as it passes, that same mind cannot even imagine how bad that pain was. I guess that’s why I’ve always told people that even though I can find a lot of similarity between all of my flares, each and every one of the stands out as its own singular event.

Writing about this helps. During times like these, when is feels like the whole world is shrinking down on me (I was bedridden until about 1:30pm), it’s nice to have a way of counteracting these thoughts of fear and helplessness that enter my mind. It’s scary..but right around now, I’m just a little bit less scared. And I know that I am going to be okay.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Leslie Rott

Leslie Rott

Real Profiles of Rheumatoid Arthritis
Real-Profile-Rott-Leslie
Photos © Leslie Rott

Name?

Leslie Rott

Age?
25

Location?

Ann Arbor, Michigan, United States

How long have you lived with RA?

Diagnosed in 2008.

What advice would you give to someone who has just been diagnosed with RA?

I would say that it’s really important to know that RA isn’t a death sentence. And contrary to public opinion, it’s (obviously) not a disease of old age.

Do you use any mobility aids?

Most of what I use are more everyday type things like jar grippers and things like that.

How has living with RA helped to improve your life?

That which does not kill you makes you stronger. I think RA has taught me that being a one woman show isn’t enough, and that I need to surround myself with people who enrich my life in multitudinous ways. I think being impacted by any chronic illness is a test of relationships. And those that stay despite illness are the ones who are always going to be there. RA has taught me that I deserve to feel like a whole person, and that some relationships just aren’t worth salvaging.

Do you have any visible signs of RA?

RA has done a number on my toes, but I try to keep those hidden. My right hip is also a bit deformed, but it’s not like I whip my hip out for everyone to see.

Can you please describe some of your favorite coping strategies for living with RA?

For me, one of the best ways to cope has been through blogging. The online lupus and RA communities, along with the chronic illness community in general, have been immensely helpful for me.

Can you please describe your current medical (traditional and alternative) treatments?

Currently I am on Centrum, Flexeril. Folic Acid, Lo-ovral, Methotrexate, Quinacrine, and Seroquel. I am also on Prednisone on an “as needed” basis. My treatments have mainly focused on the more “traditional” medicine side of things.

Is there anything else about yourself that you would like to share?

Leslie Rott blogs at http://gettingclosertomyself.blogspot.com/. She can also be found at http://www.healthcentral.com/.

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A Superhero’s Guide to Rheumatoid Arthritis

By Irwin Lim, Rheumatologist

At BJC Health, we spend a lot of time educating patients about their disease. In particular, we spend a lot of time at the time of diagnosis.

For a person living with a chronic disease like rheumatoid arthritis, understanding the consequences of the disease and what the body is going through is crucial in coping. From a rheumatologist’s point of view, it’s also crucial that a patient understands the need for appropriate treatment to avoid the dreadful consequences of the disease.

A couple of weeks ago, I stumbled onto Rheumatoid Arthritis Guy’s website…This superhero has created a guide on rheumatoid arthritis…I like it a lot & feel it may help my patients understand. What do you think?

Read More: http://bjcconnectedcare.com/2011/06/a-superheros-guide-to-rheumatoid/

BJC HealthNSW Australia – Our unique approach, Connected Care, is about honing the collective expertise of our specialists and allied health professionals to offer holistic diagnosis and treatment.

This approach has come about because our main objective has always been to treat the whole person, not just the site of pain. We achieve this by encouraging our specialists and allied health professionals to work together in connecting the treatment of our clients’ health issues where appropriate.

Each practitioner here is highly trained and adept at his or her own expertise but we have the understanding as well as the ability to integrate care from different experts if required. The benefits of having a well-connected in-house team of health practitioners are invaluable. Aside from client convenience and a more streamlined administration of your overall health, Connected Care allows us to address your health and well-being holistically.

More Info: http://bjcconnectedcare.com/

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