Brick wall

Today, I feel like I’ve been hit by a truck, the exhaustion is in my bones. I want nothing more than to get back into bed and sleep, but I have so much to do that it is making my stomach feel sick. Or maybe that’s the meds. Anyway. Today, I will let others speak my words and my thoughts. Starting with a very handy ‘Idiot’s Guide to RA‘.

Now, I know people mean well, but you’re not me. You cannot know what it feels like for me. Even if you have RA yourself, you’re still not me. So please stop treating me like it’s all in my head. I may look fine, I may act fine, but until the day you wake up and you’re me, you will have no idea what it takes just to get on with a normal day. And a ‘normal’ day changes every day.

In a way, having RA is not that different to being pregnant, because people do love telling you what to do (at least with RA, people don’t immediately reach out to touch my belly; TFFT).

I’ll end with a quote from the ‘To tell the truth…’ article linked above:

I am not lazy or lethargic. I am not stupid, unmotivated, or whiny. I have the real RA which fights my athletic desires. And I fight back like a warrior. And always doing the best that I can is who I really am. And, by the way, if you ever see me sitting on a sofa with my feet on a pillow, I am still doing the same thing: I am doing the best that I can do. But, you can bet I’d rather be swimming.


Two steps forward, one step back

Saw rheumatologist today and pluses are: blood pressure back to normal and liver is fine, whoopwhoop! On the minus side, my ESR (inflammation) rate is up again, this time to 42 from a wonderful low of 15 a month ago… the rise coincides with the slow phasing out of the steroids from 10mg to 7.5mg a day. So the chemo meds have now been upped, while the anti-inflammatories stay the same.

Mostly, though, I am completely knackered All The Time. Like, seriously.

Divine intervention, or something like it… maybe

So today, Friday, 12th October, is World Arthritis Day… those of us who can still get up and dance will; those of us who can’t will just sit by and applaud. Or not, because sometimes, RA won’t let you. I don’t know how I feel about having a ‘day’ for arthritis, because those of us who have some variation of it have it every day. I also kind of resent feeling obliged to mark it with an obligatory blog post (and yet, here I am) or C&P’d Facebook status update etc.

Yes, I do understand the value in such things to raise awareness. And I’m probably just feeling particularly curmudgeonly (tick that off my “get the word ‘curmudgeonly’ legitimately into a sentence” bucket list) today. Probably because I had to make yet another tedious trek up to the hosp for yet another tedious blood test and there is a distinct undercurrent of fear about seeing my rheumy on Tuesday (will my blood pressure still be high? will my RA/anti-CCP/ESR rates be okay? how’s my liver doing or is that f*cked now, too? and so on).

So I was well on my way to letting it all get on top of me (my lower lip was distinctly starting to tremble). Then, it was like being warmed by a ray of golden sunshine and the laughter of small children when I glanced up and noticed the ID badge my lab technician was wearing: last name = Lee. First name = Heaven.

So, thank you, Mr Lee. You’ll never know what a difference you made to my day.