Tuesday, July 13, 2010

Portrait of a Flare

This won't be eloquent, but I think it's important.

I'm not doing okay today.

So many people have been asking how it feels, and I sent this to a friend last night:

It's so hard to explain to people what this is like. Have you ever tried waterskiing? Or learned how to snowboard? The only thing I can think of to start to explain my pain is to get people to think about how their body felt the day after something like that - where you hurt from head to toe, and in places you didn't even know could hurt. Then imagine that you just got back from a trip to Europe - that really nasty jetlag that leaves you so tired that you speak a sentence then pause and try to remember what you said, panicking a little that the words might have come out in a completely different order than you'd intended them to. A lot of energy goes into not just curling up wherever I am and closing my eyes, concentrating to try to keep normal facial expressions and keep up with the conversations happening around me. Now with the side effects of my meds, I've had a nonstop headache and am constantly queasy like I'm coming down with the stomach flu. I haven't actually thrown up yet, but around 1 am tonight was the closest I've come so far. And that's pretty much been the last three weeks of my life.

This isn't a pity thing at all. I've lived through this before, and I will again. It's just important to me that the people I love are able to understand somehow - so that when they spend time with me and things seem 'off' (like they were tonight), you know that it's not really me. It always feels a little bit cyclical - like I have enough energy to fight for a while, then I need to stop and refuel before I can start fighting again. I guess I'm refuelling this week. Thanks for loving me anyway :)

I was too queasy to eat anything yesterday morning, so I only ended up taking one pill at dinner. As a result, I was in too much pain to sleep last night - I just couldn't get comfortable. Just as I was dropping off, Briony woke up. She was only up for a couple of minutes, but it threw me off - and then I spent some time in the bathroom gagging and trying not to puke from my meds. Lovely.

I finally dropped off around 04.00, so when Briony woke up at 07.30, I wanted to pull the pillow over my head and cry. Geoff took in the whole situation very quickly and went to go get her from her crib and feed her breakfast. The next thing I remember, it was 10.30 and I was still queasy and in pain, but feeling *much* more human.

I had a conference call at 11.30 that was tough because - with this level of fatigue - it's so hard to concentrate on all the different voices talking over each other on an imperfect connection. But I think I managed, and then it was time to try to swallow a few bites of food (because I'm so queasy, I'm pretty much on an all-bagel diet before 18.00 on any given day... it's getting crazy) before jumping in the shower to prep for a surprise in-person meeting this afternoon.

I told my client that 14.30 would work for me. She wanted it earlier. I said that 14.30 was the earliest I could do, but that I would try to be early for the meeting if I could. A few minutes later, I received an iCal invitation for a 14.00 meeting (with a note that 'Lindsay might be a couple of minutes late'). I rushed as quickly as a sicko can to make it to my client's office for 14.00 and arrived exactly on time. And now it's 14.25, and I'm sitting here waiting for my meeting to start because - apparently - 14.30 is going to work better for everyone else here now. It's taking everything in me not to cry right now over the wasted spoons strewn all over the floor around my feet.

To be honest - and this is NOT a guilt or pity thing - I've been feeling a little bit alone this week. Geoff is home, which I know gives people permission to take 'time off' from helping - but I've also had only a few friends think to check in and see how I'm doing. Geoff is being amazing. But he's also still trying to figure out how to help. He's eighteen years behind my family in figuring this all out. There's also the factor of what I like to call 'flare fatigue' - it's so easy to help someone for a day or two post-surgery, but hard to remember (or to be willing to reschedule your own life) for weeks or months on end. And I'm not sick at that level where I'm stuck in bed all day. I'm still doing some normal things... I'm just really struggling to accomplish them. But the fact that I'm attempting it probably means that other people just forget or don't realize. It's my eternal plight, isn't it? :)

Once this meeting finally starts, I'll just have an hour of work to go because I can head for home (via Safeway for a couple of groceries) - and then Katie is coming so that Geoff + I can go see a movie. We haven't picked one yet. I'll either need lots of laughter or lots of explosions tonight, I think. I feel like an awful mom for not spending the evening with Briony, but I think that we need this. I'm starting to feel more like a patient or a child than a wife, and I HATE IT. I hate it so much that I wanted to use an exclamation point right there.

And that's life for me today. It is what it is. I feel like we're doing our very best to navigate this flare, and I wish we were able to see the light at the end of the tunnel, but we're still waiting. Maybe tomorrow.

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At July 13, 2010 4:18 PM, Anonymous Nessie said...

Amen and amen, girl.

We get through it because we have to, though it's always nice to have help — though sometimes it's more necessary than "nice."

I'm sorry you're flaring; I know that's hard. It must be doubly, triply so with a toddler. I still don't know how you do it, but I have a sneaking suspicion it has something to do with how strong you are.

At July 13, 2010 4:57 PM, Anonymous Marilyn said...

In this struggle, I encourage you to verbalize specific help that you need...especially to your husband. Most of us, including men, are not known for being mind readers:)

At July 13, 2010 6:37 PM, Anonymous Momma said...

Ditto what Marilyn said. She's a smart woman - and your husband's mom. I told you - tell others what you need and be specific. (Although I know from experience that isn't as easy as it sounds. People should just know, right? It takes too much energy to explain it to others)Hope you have enough energy left to enjoy the evening out with Geoff.

At July 13, 2010 7:45 PM, Blogger Tannis said...

I don't comment often but have been following the flare...just want to let you know that I'm sorry you have to educate the rest of us while you have so much on your plate. My mother-in-law has dealt with RA since her 20's and has already taught me a lot. She's so good at telling us when she's up or down and what her needs are. It took me years to figure out that when she was "good" it meant more like "not so much pain I can't concentrate".

I'm fighting with you in spirit, not that it helps...

I wish you a day full of Starbucks, quiet time, snuggles and naps. And a house cleaner, babysitter and possibly, a grandma. With a friend dropping off dinner.

At July 14, 2010 6:44 AM, Blogger Helen said...


I've been reading your posts for a little while in a lurking manner, so thought I would un-lurk myself! I found your blog via chronic babe, and I would just like to send you a huge gentle hug. I've tried really hard to explain to my husband how it feels sometimes, and your description is the best I've read, and is way better than I've managed.

Asking for specific help is such a tough thing to do, and I've not managed to get my head round it either yet, but when it's been a while I'm guessing that it really helps people to help you. So easy to say, I know. Good luck - and fingers and toes crossed for your flare to pass so you're only trying to deal with one level of pain rather than two xx

At July 14, 2010 5:28 PM, Blogger Melanie said...

Sorry I'm one of those friends that is "too busy" to check in. I know you weren't looking for a pity party but I'm just being honest. Sorry. I, too, appreciate your description of your pain and feeling. I have no idea what you feel like even though I've been your friend forever. Help us help you, especially this weekend when we Lilith it up. I am TOTALLY fine to lie around and veg for the whole time and then pace ourselves at Lilith. I'm too poor to shop my heart out anyways. :) See you soon.

At July 14, 2010 11:11 PM, Blogger Lindsay said...

@Nessie - I know that you know, and that always makes your comments special. Thanks for your words of encouragement + affirmation.

@Mom(s) - I *think* I'm slowly getting better. It's hard, but it's important.

@Tannis - It helps a lot. Thanks for your understanding and well wishes. They really do mean a lot. I've looked up to you since I was little.

@Helen - Thanks for saying hi! I'll be checking out your blog too...

@Mel - Thanks. I know how busy you are, and I am very much looking forward to spending proper time with you this weekend. You're a great friend (even when we're both as busy as we are) and I feel your love + support even when we're not physically spending time together or emailing all the time. I know I can call you, and that's worth everything.


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