I’ve come to realize that about once a month (sometimes more, sometimes less) I have a day where I am completely unplugged – as in having absolutely no energy supply. It sometimes seems that I don’t even have enough energy to sleep. It sounds like an oxymoron, I know, but I have no doubt that those of us who live with chronic fatigue know this feeling all too well.

So from around 12 noon until 7 in the evening, with a few breaks here and there, I was out cold. Luckily my class yesterday was online, so my mega-nap didn’t interfere with any of my commitments.

The weather turned last night. It’s currently in the low 30’s, and a light drizzle has been falling for hours. Normally my living room would be flooded in sunlight at the moment, but with so many clouds in the sky everything has that “muted” feel.

In half an hour, I’m going into work. On top of my class, I have office hours in the morning. Here’s hoping that I won’t have another repeat performance of yesterday’s unplugged session. I think it’s time I start looking into winter batteries!

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

No, I am not tired of living with rheumatoid arthritis. At the moment I have gotten as used to living with RA as I think I could – both the ups and downs and everything in between. In the past, I often used to get a feeling of being too tired, a feeling of not being able to cope with my illness any longer. Things have since changed. I continue to learn the importance of living in the moment, and not worrying about what the future might or might not bring.

No, I am not tired as a result of overdoing things in the past few weeks during which my pain and inflammation has lifted. One of the priorities that I set for myself as I entered this recent period of decreased RA activity was the importance of continuing to take care of the amount of things that I commit to doing throughout the day. The last thing I want to do is push myself to far and increase the probability of entering into another flare.

No, I am not tired as a result of lack of sleep. During the past three weeks I have been getting more restful sleep during the night than I have in a long time – so much so that I have even returned to dreaming. During the worst periods of the past few months, I was neither sleeping well nor dreaming; my nights were one long gray period. The color is back, and I have already received comments that my eyes seem so full and alive.

No, I am not tired as a result of cutting out my afternoon nap from my day. I continue to sleep at least an hour in the afternoon. When I am dealing with pain and inflammation, the afternoon hours of 2-4pm are usually one of the worst periods of the day. I have gotten into the routine of taking my afternoon naps, and this is something that I probably won’t change anytime soon.

Dog tired
http://www.flickr.com/photos/aeortiz/ / CC BY-NC 2.0

What I am tired of is a result of the increased levels of fatigue that I have been dealing with for the past handful of days. No matter how much I pace myself, no matter how much I rest, no matter how much I nap – that feeling of tiredness remains throughout the day, from morning to night.

It can be confusing in a way – living with extremely low energy levels that come from seemingly nowhere. Of course, I know where it comes from – my rheumatoid arthritis. But this is so unlike the more obvious cause and effect limitations that result from joint pain and inflammation. If that joint is red and swollen, I know why it is more difficult to move. With inflammation, there is absolutely no external signs of what is going on inside. It’s spread throughout the entire body.

Yesterday, as I stepped away from the dining table in order to lay now on the nearby couch and get a few minutes of rest, the image of the Energizer Bunny entered my mind. Although if that was me in the commercial right now, I would be the bunny with the cheap generic batteries.

I try to stay positive, but the overwhelming weight that fatigue continues to press onto my body. So I will continue to do what works best for me. I will pace myself. I will eat healthy foods. I will rest and take naps. I will ask for help if and when I need it. And like all other aspects of living with rheumatoid arthritis, this too will pass.

I think I will also add some mindfulness mediation exercises back to my day. To be honest, the time I spent on this activity has decreased since the worst of my RA passed earlier this month.

What are some of the ways in which you cope with fatigue?

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I found this great post: Fatigue: Fighting The War Against Exhaustion.

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

This was way back before the internet, before satellite television, even before cable television. The name of the game was rabbit ears, and the one television in the house was located in the living room of the house.

So this meant one thing. Every time I stayed home sick from school, I was in front of the television – with my pillow and blanket – between 9am and 11am. Why? Game shows, of course. (Then there were hours on end of boring soap operas, but the pace finally picked up around 3pm with after-school  programming.)

Tic Tac Dough was fun – remember the cheesy dragon graphics? Let’s Make a Deal was a classic – but even in the 70’s it seemed dated. I don’t remember when Hollywood Squares and Wheel of Fortune started, but I think those were usually shown later in the day right before prime time.

And no, I haven’t forgotten about that all time favorite: The Price Is Right. What a fun-filled hour of fun and excitement that you could play along with. (Remember every now and then there was always that last contestant in the opening bidding who subtracted rather than added a dollar to the highest bid – what a hoot!)

[Warning: I could not figure out a smooth transition to the next paragraph that made any sense...]

I have often been asked by other people living with rheumatoid arthritis for suggestions on how they can continue to do everything they are used to doing, without having to deal with the resulting pain and fatigue. I sort of chuckle whenever I hear this question, because I too used to be at a point where I wanted the best of both worlds.

But I have since learned that if I don’t want to deal with so much pain and fatigue, I have no other choice than to diminish the amount of activities I try to complete on any given day. I no longer struggle with postponing and item that I had originally put on today’s to-d0 list, and I take mid-day naps when I need to.

Since I felt much better this past week, I must admit that I haven’t been following my own rules as closely as I should be. I think we’ve all experienced that feeling, where the oppressive weight of rheumatoid arthritis temporarily lifts and once again it feels like we can take on the world!

So, I once again commit to not overdoing it – even on my good days. I was thinking about a mental image that I could use to guide me during throughout the day, and I think I found one.

[Back to the Price is Right...]

One of my favorite games was Cliff Hangers. The game board showed a mountain climber on the side of a mountain. There were 25 steps. Contestants were shown three products and had to guess their price. For every dollar that they were off from the actual price, the mountain climber moved up one step (accompanied by yodeling music).

If the mountain climber remained after the three product prices were guessed, the contestant won. If the mountain climber fell over the cliff before the three product prices were guessed, the contestant had run out of steps – which meant that they lost.

I will now pay close attention to how much energy I exert throughout the day, all the while reminding myself that I have “25 steps”. If I push myself too far, I know that the consequences are going to be severe. I certainly don’t want to be falling over any mountain cliffs! (Now if I could only stop yodeling…)

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

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If you are not already familiar with “The Spoon Theory”, be sure to read about it at ButYouDon’tLookSick.com.

I wondered: is it really possible for Superman to have no limits? We’ve all heard about kryptonite, but maybe many counseling sessions with his therapist finally paid off and allowed Superman to overcome his fear of the wicked green element. (Rheumatoid Arthritis Guy might be just a little jealous, but he has a wonderful psychologist of his own. Go Team RA Guy!)

I wanted to hear what other people were thinking about superheroes and limits, so I did an internet search and landed in some comic book/superhero discussion forums and found many very heated debates on the topic. Can Superman sit on the sun? Can Superman breathe when he is in outer space? Can Superman’s skin ever get cut? The list went on and on. (Some people were apparently quite upset that such questions were even being asked – really! Note to self: just when I think my pain can’t get any worse, visit these forums again.)

Rheumatoid Arthritis Guy was recently asked how he learned his limits. I really appreciated the question (especially coming from another young guy with RA – we really do exist!), as I realized that I had never really stopped to think about this question.

I would love to say that I continually assess my situation and adapt accordingly. That I am always aware that with the pain and inflammation of rheumatoid arthritis comes fatigue, and that I need to plan my activities appropriately, otherwise I will find myself deeper in a hole. I want to say that my to-do list needs to be cut in half, and then cut in half again. And then, still, cut in half again. It would be great to communicate that I have no problems balancing the logistical and financial concerns of daily life with the emotional and physical demands of living with RA. Last but not least, I sometimes want to believe that my gender plays no role in my ability to accept certain limitations and weaknesses, both private and public.

But I would just be kidding myself.

Quite often, I learn my limits only after pushing myself too far. In extreme cases, I finally do learn my lesson and promise not to make the same mistake again. Still, I am just beginning to realize that as soon as my flare subsides and my body seems to be back to its “normal” self,  I often find myself  back in the same place – pushing myself past my limits.

So I don’t yet have a complete answer to the question of how I learn my limits, but I hope that my new awareness combined with my continued counseling sessions will allow me to continue to make the progress that is necessary in order to take care of my mind, body, and spirit. And maybe, just by bumping up against my limits a less often, they will begin to fade away.

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