Saturday, 15 January 2011

Crazy lady?

Ok, I know that RA makes us all feel a little crazy sometimes.

Tonight is one of those times.

Before I tell you my story, I want to state that I know 100% that my disease is real and that my symptoms aren't in my head. But sometimes, like tonight, the thought does cross my mind.

Ok so, I was out with friends for a birthday night out. We went to dinner, then a bar, then a club. I was fine until about an hour and a half into the club (where there were no seats) and I could start to feel my right foot toes tingling, which for me means...uh oh..swollen toes are coming very soon. So I waited a bit, it was getting worse, so I made my excuses to leave.

Nothing strange so far..BUT..the reason I'm really confused is this. 2 days ago I was in London with work, on a fashion shoot. I spent all day in airports, then on my feet for about 6 hours filming, then airports again. And it was only in the airport queue for security on the way home that I noticed anything funny about my feet.

Where as tonight, all it took was an hour and a half. Yes, of course the disease varies from day to day, I know this. But what confuses me is this - I was REALLY bored tonight in the club. The music was crap, the chat was crap and I just didn't want to be there. On the shoot, I was having a blast and was really busy working and not really thinking about anything else.

So....even though I KNOW it's silly and it's not in my head.. is it any wonder that sometimes I question myself?? I can't help but notice a pattern...if I really want to do something and I'm enjoying myself I get through it better. If I'm bored and want to go home anyway, my foot seems to swell more.

I don't know what to make of it. Am I unconsciously using my RA as an excuse to leave things I don't want to do? Or is it just a coincidence that my flares happen during dull nights out? I'm definitely not imagining the flares. But I wonder if somehow I pay attention to them more when I'm not having fun. I think I'm going mad. Oh well! Stupid disease.


  1. First of all, of course you are right on when you say the disease varies from day to day. I also thing that this is absolutely not in your head. I really feel that we are good at ignoring pain when we are doing something that that keeps us very busy and/or is something we love. I know distraction doesn't take away the pain, but it helps. When you are bored, you have way more time to focus on what's going on in your body.

    I have to admit that I have used the "RA excuse" a few times in the past. However, I didn't actually feel any more pain/swelling at the time, I just said that I did. I really don't think you are bringing this on yourself.

  2. I'm with Pony. I'm absolutely more able to handle and even, at times, completely ignore pain when my mind is occupied with doing things that I enjoy--at least until I slow down. Sometimes being physically active, like you were during the shoot, also keeps me distracted. With physical busy-ness and mental occupation, there's just no room in my mind for pain, too, unless it's truly severe.

    When I'm bored or idle (or both) and in pain, it becomes impossible to distract from.

    And, like you, I've noticed this strange phenomenon, as it has happened so many, many times over the years. In fact, once I noticed it, I've gone out of my way to distract myself during flares in order to "block" pain. It can be really effective and a powerful tool. Please never think that your RA pain is bogus--it's not. I may be "all in your head"--ALL pain sensations originate in the brain--but the ability to block it is a real gift. Be glad for it, not worried!

    Hugs for you, Squirrel. Here's hoping the next week and month will be pain free, and if it's not, that you'll be able to achieve distraction and relative comfort.

  3. Thank you both! It's all so frustrating. Despite all these strange goings on and the flare ups I still feel very lucky to be able to enjoy the things I want to do for the most part. But like every RA sufferer, I really do miss knowing for sure that I could do everything, fun or boring, at any time. Thank you for the words of encouragement and support, it's good to know that you've experienced similar things. Hope you're both well :)

  4. I agree with Pony, it is absolutely not in your head! It definitely helps being wrapped up in something you like, but somedays that doesn't even help. If your mind is not occupied, you have more time to dwell on pain and once you start thinking about the pain it will get worse. You're SO right ... stupid disease!