Posts Tagged ‘Self-care’

HALT

Saturday, March 16th, 2013

Halt

There’s an acronym used in self-help and recovery circles – I think it originated with Alcoholics Anonymous. When you find yourself feeling low, you’re supposed to assess yourself to see if you are feeling Hungry, Angry, Lonely, or Tired – H.A.L.T. Any one of this four states can weaken resistance and put people in a vulnerable position.

I’m lucky enough not to have issues with addiction, but I think H.A.L.T. is a useful tool for pretty much anyone. I know that when I let any of those states get too far, and especially if I’m experiencing all four at once (which has been happening a lot lately), I sometimes make decisions that are counterproductive, even self-destructive. I deal with Hungry by grabbing huge handfuls of M&Ms. I turn being Angry inward and end up with migraines. When I’m feeling really Lonely, I isolate myself. And, of course, when I am Tired is when I most resist going to bed on time, much like a toddler. The relationship isn’t always linear, either – being Lonely or Tired can also get me reaching for the M&Ms. When I am feeling all four, I generally make poor self-care decisions – I don’t eat, sleep, or play well, and my mood gets pretty bleak.

I feel the need to add one important variable to this list: Sick. (Also In Pain, but “HALTS” sounds better than “HALTIP”!) When I am sick or in pain, good decisions become really hard for me. My plans and goals fly out the window. I feel helpless and out-of-control. Also, I develop a strange blind spot – I don’t realize at all that being sick or in pain is the reason for my emotional state. I came face-to-face with this yesterday – it was the day after my Remicade infusion, and I woke up feeling amazing. (This doesn’t always happen.) Birds were singing. Colors were brighter. It was like this.

I used to have all kinds of systems in place for times when I wasn’t doing well. I used to take methotrexate once a week, and because I knew in advance that I would be feeling terrible that day, I had a whole routine set to go. But my RA has actually been doing pretty well for awhile now, and even though this is a great thing, it means I get thrown for a loop more easily when things aren’t good.

It’s not just my own Sick that gets me down. I have a five-year-old son, and he’s been bringing all kinds of germs home from preschool. It seems like one or the other of us has been constantly sick for months. We just seem to pass the bugs back and forth, even though I know that’s not how it works. And when my son is sick, I end up home alone with him, day after day, getting run-down and exhausted. Not to mention that thanks to Remicade and the immunosuppression, and his normal five-year-old tendency to need lots of cuddles when he’s not feeling well, I almost always end up sick too. (That’s a topic for a whole other post – probably my next one.)

I’m struggling with how to make H.A.L.T. work under these circumstances. The idea is that you recognize how you’re feeling and take action to meet the need. It’s clear (although not always easy to do) that you need to eat if you’re hungry, sleep if you’re tired, etc. Anger and loneliness are a little bit trickier, but there are still proactive things you can do to address them.

So what do you do when you’re sick, or your kid is sick, and it’s relentless and constant and it’s depleting you in all of the other four areas too? What do you do when the pain isn’t responding to meds? How do you take care of yourself and protect yourself from coping mechanisms that aren’t helpful in the long run?

This question isn’t philosophical – I know people will want to respond by talking about faith or religion or positive thinking. I’m not discounting those things – it’s just not what I’m asking. I mean, what are some practical things I can actually DO in these situations? What are some things I can do other than reaching for the M&Ms or withdrawing into myself? How do you make yourself do the things that you know are healthy?

I really want to know. It’s clear that I need some new tools.

Don’t Let The Door Hit You…

Monday, December 31st, 2012

Goodbye, 2012. I will not miss you.

It’s been a humdinger of a year. The last few months have been especially brutal. So much of what has happened has been outside my control; this is always a hard thing for me. Attitude is important, but the fact is, sometimes things are just bad. And sometimes it’s important to be able to say so. So I will: Many things this year have been bad, and I was unable to do anything about most of them.

I am ready for a new year. I will do my very best to fill it with good and wonderful things. I am counting blessings and concentrating on the things I can control.

I want to thank those of you who have stuck around and are still reading this blog! I will try to make it worth your while this year.

Medless

Thursday, December 15th, 2011

No medicine

I will explain the title of this post in a minute, but there’s so much else to catch up on. Where do I begin?

This year has been so full of change that it’s hard to know where to start. Those of you who read my blog regularly know that my family and I moved across the country back in September. So far, it has been an incredibly positive change. I can’t even begin to express what a difference it has made in our lives to have supportive family around. I can bring my son over to my parents’ house and go have a long, luxurious lunch with girlfriends. My husband and I can go out on dates. We can get to my doctor and hospital visits without bringing our son or worrying about who we can get to watch him. Best of all, my son is thriving, and his bond with his grandparents is a truly beautiful thing to see. There are negatives, too – we miss our old friends, and the cold weather has been a rough adjustment. But on the whole, it’s been wonderful.

My health has been confusing. For a long time, the only real symptoms I’ve been having are terrible headaches and some weirdness in my fingers. I finally had an MRI and they found damage in my cervical spine, which may or may not have anything to do with the RA. I had two cervical epidurals, a month apart. The first one was amazing – I was totally pain free for almost a month! I really couldn’t believe it. When the pain started coming back, I had the second one. Then, unfortunately, I fell down the stairs a few days later and was so banged up that I couldn’t really tell if it had helped or not. I did know that I was having headaches again, though. I went to the pain management doctor who had done the procedure, and he checked my range of motion and nerve function. He concluded that the epidurals had done their job – the problems in my hands were completely gone – and that the headaches were coming from something else, most likely muscle tension. So I’m going to see a headache specialist in January. On the bright side, he prescribed some Zanaflex to tide me over and it really does help when the headaches hit – looks like his theory is probably correct.

Next came a good news/bad news kind of situation. For the past week or so, I have been experiencing terrible pain and a new level of fatigue. My feet have been killing me, and pain radiates from my back all the way down my left leg. It was frustrating to find myself limping around again – it’s been awhile since I had lower body symptoms. So I saw my rheumatologist yesterday. The good news: my bloodwork looks great, and he couldn’t find any joint inflammation at all. The bad news: he thinks this may mean that I have now developed fibromyalgia. I am very resistant to this idea – I really, really don’t want another chronic condition! Anyway, we are holding off on drawing any definite conclusions for now. After all, I did fall down the stairs a few weeks ago, and we both want to see how I do after some more time passes. In the meantime, I want to see what massage, gentle yoga, and good sleep can do for me.

Okay, so now on to the medless part. My husband and I have decided that we would like to try to have another baby. We talked to the rheumatologist about this yesterday, and he approved. My RA seems to be in a really good place right now. It’s possible that it’s been in a good place for quite awhle, and that the headache and muscle pain were confusing the issue. So right now we are in the process of stopping all of my medications, with the exception of Pulmicort for my asthma, and seeing what happens.

Being medless is weirdly exhilarating, like hang-gliding. I push off from the cliff and hope that my remission-like state holds me up, at least until I become pregnant. (I went into remission when I was pregnant with my son, so I’m hopeful that it will happen again.) The freedom is dizzying – no more med side effects, no more panicking if I forget my pills. There are still vitamins to take, but it’s not the same. My med-free body feels great, healthier. At the same time, I know that like hang-gliding, it’s risky. It’s a race against time, and one that I can’t be sure I will win.

hanggliding

Inspired

Tuesday, November 1st, 2011

Every day I follow a whole bunch of blogs written by other people with chronic illnesses. Most of these blogs can be found on my homepage, in a sidebar called “Adventures in the Autoimmune World.” Since I don’t tend to leave comments as often as I should, some of these people have no idea how they inspire me, teach me, move me, or make me feel less alone. So today, I thought I’d mention some of the great ideas I’ve gotten from other people’s posts lately.

In honor of World Arthritis Day, Rheumatoid Arthritis Guy presented a challenge: Reclaim one thing. (You can read more about it by following the link.) In response to this challenge, I have decided to work towards taking back something that used to mean a lot to me: Irish dancing. I stopped doing it for practical reasons when I was first diagnosed with RA – I was having problems with my feet and it just became too hard, too painful. I stayed away from my dance friends and dance events because it made me too sad. Later, when my feet started feeling better, I still didn’t go back. I had simply gotten into the habit of thinking that I was limited, and I assumed that I wouldn’t be able to do it.

Now I want to challenge this assumption. It’s true that it might not work out. It’s true that Irish dancing isn’t necessarily the best thing for my joints. But I feel that I gave up too early and too easily. I don’t want to assume that I can’t do it – I want to KNOW whether or not I can.

One of the tools I’m using to work towards this goal is an online game called “Superbetter,” which I also learned about in a post by Rheumatoid Arthritis Guy. It’s in beta-testing right now, and out of respect for the programmer’s privacy, I won’t say much about my experiences so far with the game. In a nutshell, the game provides a framework to help you achieve health-related goals that you set for yourself. You can learn more about Superbetter here.

In this post, Carla from Carla’s Corner tipped me off to another great tool – www.myfitnesspal.com. This is a good FREE way to track your eating and exercise. I’ve only been using it for a little while, but they seem to have a great database of nutritional information. They also have a cool iPhone app, but I don’t have one – I still have a Dumb Phone.

Finally, WEGO Health has declared November National Blog Post Month. I’m too busy right now to do this, but some of my favorite bloggers are trying to post every day this month, and I’m looking forward to reading what they have to say. It’s made me think about participating in blog carnivals – something I generally don’t do. 

Anyway, I’m hoping that all of these ideas will help spark something in me. I’ve been feeling pretty unmotivated lately, and I really want to make some changes. I’m grateful for this community.

Was It Just A Remicade Dream?

Friday, April 30th, 2010

Where would you rather sit if you were having a Remicade infusion?  Here:

waiting room chair

Or here?

infusion-chair

Yeah, me too.

I belong to a couple of online RA discussion boards.  Every once in awhile, a frightened Remicade newbie will post a question about the infusion process.  The community generally jumps in with reassuring responses and descriptions of how the whole thing works, describing friendly infusion nurses, recliners, TVs, even snacks.  And I sit there reading them, thinking, “Really?  It doesn’t go that way for me…”

Yesterday, I got to find out how the other half lives.  See, my infusions are normally done in my rheumatologist’s office – a nurse comes in on Thursdays to do them.  But about two weeks ago, I got a call saying that the nurse wouldn’t be available on my scheduled week, and could I move it a week earlier or later?  The other dates, unfortunately, didn’t work for me.  I’ve also been pretty unhappy with my infusion experiences, and have been curious about how other people do it.  So I asked if there was someplace else I could go, and the medical assistant reluctantly said that I could have it done at the hospital.  She did warn me that it would be more expensive, but I thought it would be worthwhile just to see what it was like.

And boy, was it different. 

When I get Remicade at my doctor’s office, this is the drill:

I am shown to one of the regular examining rooms, which are really tiny, and I sit in a wooden chair very much like the one in the first picture except older and shabbier.  Recently, someone moved the furniture around in the examining rooms, so the chair now sits awkwardly behind the open door, where the door bumps my chair if anyone tries to open it wider.  The nurse comes in and starts my IV.  Most of the time, he doesn’t take my vitals, and he never asks me any questions.  Then he hooks up the Remicade bag and leaves.  I generally don’t see him or anyone else again.  I sit and read a book or listen to music on my iPod.  At a certain point, I feel pain in my arm and look up to see that the IV has run completely dry.  So I get up, drag my pole out into the hall, and flag someone down to try to find the nurse.  If he’s not in the middle of something (which he usually is), he comes in, flushes the line with saline, and bandages me up.  Otherwise I wait awhile, then go back into the hall to repeat my request. 

Since he has so many infusion patients in one day and also has another job to get to after he’s done, the infusions have been getting faster and faster – they now take less than an hour and a half.  I’ve told him before that fast infusions make me feel awful, but he claims that the Remicade drug rep told him that speed isn’t an issue, and that some people just react that way to the drug.  (Funny, since I only started reacting badly when he started speeding up – also funny, since other people on the boards say they have the same problem.)  After my infusion, I go down to the car where my husband is waiting.  I am always depressed and shivering and my hands are icy; my husband has to turn the heat on in the car, even if it’s hot out.  I feel like I’ve been hit by a truck.  We go home, where I collapse and sleep for hours.  Sometimes I wake up the next day still feeling awful.

 Now, here’s how yesterday went:

I got to the hospital and went up to the infusion room, which turned out to be on the oncology floor.  (I do have to admit that seeing “CANCER CENTER” on the wall when I got out of the elevator did bum me out a bit… the one negative in all of this.)  I walked into the room and saw about four or five blue recliners and two other patients, who were there for chemo.  The nurse, who was incredibly friendly, weighed me and took my blood pressure and temperature.  Then she asked me a whole bunch of questions about how I was feeling and went over my chart.  She had a list of my medications which my rheumatologist’s office had faxed over; about half of them were wrong, and she made the appropriate corrections.  (Okay, this worries me – time to have a talk with them.)  I found an empty recliner, which had a pillow waiting for me and a big table next to it for my things.  I told her that my infusions usually take about an hour and a half but that I don’t do well at that speed.  She reacted with horror and said that the Remicade guidelines are pretty clear on the importance of going slowly to minimize the chance of infusion reactions – she usually takes about three hours.  She started my IV and let me get good and hydrated before hooking up the Remicade bag.

At all times, there was at least one nurse in the room, and all of the nurses I saw were friendly and kind.  They came right over to each of us several times to ask how we were feeling.  They ordered lunch for us from the hospital cafeteria.  Several times, they passed out chocolate, and also offered to go get sodas if we wanted them.  The recliner was really comfortable.  There was a TV, but I didn’t watch it.  Instead, I had a great conversation with the 87-year-old cancer patient in the recliner next to mine – we turned out to share a common interest in opera.  My IV didn’t run dry – the nurse came over before the Remicade bag was completely empty and flushed the line.  I never had to go looking for anyone. 

When I came downstairs and got in the car, my husband remarked on how different I looked.  I was warm and happy and felt cared for.  (The chocolate zinging through my system didn’t hurt either!)  My hands weren’t icy.  I went home and felt mildly tired, not exhausted.  I didn’t need to nap.

Now I don’t know what to do.  I love my rheumatologist; he is smart, kind, spends lots of time with me, takes a team approach to my care instead of dictating to me.  He seems to know everything – I will come to him with what seems like a vague symptom, and he knows immediately which tests to order.  He has come up with some things that seem like they’re completely out of left field, and always turns out to be right.  He is, quite simply, the best doctor I’ve ever had.

But there are problems with his office, more than just my issues with the infusion process.  Twice now, I’ve gone to my infusions expecting my dosage to be raised, and learned that someone forgot to call the insurance to authorize the increase – so I had to stay at the lower dose.  The medications listed on my chart are usually wrong – I’ve called to have a prescription filled and found that someone forgot to note my new medication in my chart, resulting in a delay.  Medications have also been called in at wrong doses or in wrong amounts.  The billing office is more than six months behind – a big problem, since my FSA has deadlines.

I was pathetically grateful for the way I was treated at my infusion yesterday – I was ready to get down and kiss the nurses’ feet.  I almost felt guilty for getting such good care, as if I somehow don’t deserve it because I am not a cancer patient.  I question whether it was worth it, given the difference in cost - am I just being won over by chocolate and kindness?  (I don’t know exactly what the cost difference will be – I’ll know when I get the EOB – but our PPO only pays 90% of costs, so it’s bound to be expensive.)  My husband points out that we always meet the out-of-pocket max on our insurance anyway, and what does it matter if we meet it a little sooner?  My mom points out that infusions are, when you really think about it, a pretty terrible thing to have to go through, and that the least they can do is make the experience as comfortable and pleasant for me as possible.  And what’s wrong with a little chocolate?

I have much to think about.

The Acceptance Experiment

Friday, March 19th, 2010

Bunsen-Beaker-web

I was feeling tired and fed up last week.  I felt that my world was getting smaller all the time because of this stupid RA, and I was sick of it.  Then I read this post by Rheumatoid Arthritis Warrior, and I could really, really relate.  I would have loved to just press that eject button RA Warrior described – just quit the whole damn thing – but, of course, I couldn’t do that.  Still, I needed a break, and badly.

So I started thinking about what kind of break I could take.  I’ve done the Denial Experiment before – the one where I decide that for a week, I will just act as if I don’t have RA and live life like a normal person.  Well, that one never lasts long – by about the third day (often even sooner), my body lets me know that it just ain’t gonna happen.  So what could I do instead?  And exactly what kind of break did I need?

I thought about the things that were bothering me most, and the main thing that jumped out at me was this: RA had become the central fact of my life.  When I wrote about my world getting smaller, one of the things I said was that I no longer had anything to talk about with friends except illness, and that illness just isn’t that interesting a topic to most people.  Also, I know someone who talks about nothing except her aches, pains, and health problems, and I can’t stand to listen to her.  She’s never happy, never positive, and never interesting.  I don’t want to be her.  But lately I have become exactly that person.  (My husband kindly points out that no, I haven’t – the person I’m describing complains but never does anything to try to make it better, and keeps putting off surgery she’s needed for about three years now.  So okay, I’m not EXACTLY the same as her… but still.)

So I decided that RA was just plain getting too much airtime in my life.  My husband agreed that we seemed to spend most of our time talking about it and almost nothing else.  I was getting tired of listening to myself sound whiny.  I was spending too much time every day reading RA blogs and discussion boards.  I was feeling exhausted and burned out and didn’t want to post on my own blog.  I just needed a mental break from the subject of RA.

Here’s what I decided to do:

If denial didn’t work, maybe acceptance would.  Just for a week, I would behave as if I had already reached the acceptance point, and RA had become an integrated part of my life.  I would take my meds every day, do the things I need to do to take care of my health, not push myself too hard or pretend I didn’t have RA.  But I would also stop talking about it.  If I had a bad flare, I would tell my husband that I wasn’t doing well and would ask for help, but then I would stop complaining.  If I talked to a friend and they asked how I was doing, I would give a very short, honest answer like “About the same” and then talk about something else.  I would also stop reading RA blogs and boards, just for a week.  It would be, I hoped, like hitting a reset button.

So how did it go?

First, I learned that I really do complain a LOT.  Complaining words were on the tip of my tongue way too often.  So I think it was good for my marriage and my friendships to cut back on this.  

But it was hard, too.  Really hard.  Three days in, I had a day when I was in a lot of pain, and I didn’t say anything.  By nighttime, I ended up crying.  (I rarely cry.)  My husband gently reminded me that the idea of the experiment was not to pretend I was fine – it was okay to say that I was in pain and needed help.  So I did, and found that saying it once was enough to get what I needed.

I learned that I really DON’T  have enough other things in my life.  It was hard to find things to talk about.  It also felt good when I actually did find topics, and my husband and I had better conversations this week than we have in awhile.  We both really needed to talk about something else, and I think we still do. 

Another discovery was that I really, really, REALLY missed the RA blogs and boards.  They have become a big  part of my life, and cutting them off left me feeling isolated and sad.  I do think that I’m on the computer too much, and that I need to cut back, so I really shouldn’t be checking them as often as I do.  But they serve an important function in my life.   

I’m still not sure exactly what I learned.  I felt both better and worse this week as a result of pushing RA to the background.  I guess the main lesson was one of moderation.  I need the RA online community, but I don’t need to check for new posts several times a day.  I need to vent, but not all the time.  I need to be honest and speak up when I am having trouble, but I don’t need to repeat it over and over.  And when I’m burned out and need a break from the whole thing, the Acceptance Experiment seems to be a better choice than the Denial Experiment.

Open Letter To Myself On Prednisone

Sunday, January 17th, 2010

prednisone-02

Dear Prednisone Me,

You will be starting a high taper soon in order to knock down the flare you’re currently experiencing, and I know that you usually have trouble thinking clearly when that happens.  Your energy will be running high, but you’ll also have a hard time focusing.  So here are some thoughts that I hope will help you:

1.  You’re going to want to do everything in the world, but you will also have the attention span of a flea, and a complete lack of ability to make simple decisions.  With this in mind, I’ve made two lists for you.  One has things to do that are really important and have deadlines.  The other has things to do that fall into the category of “If only I had energy, I’d love to…”  You can do things from both lists, but please start with the first one.  Also, give at least half an hour to whatever you pick – jumping from task to task will only exhaust and frustrate you.

2.  If you can’t decide what to do, use a random number generator.  Seriously.  It works.

3.  You may feel great and want to exercise, but please stick to your physical-therapist-approved plan.  You may feel invincible, but you are not.

4.  PLEASE try to control your eating.  I know those brownies will be calling to you, but you don’t have to listen.  I know you haven’t been eating well lately because you’ve been exhausted from flaring; now is your chance to get back on track.

5.  Your husband is sweet and supportive and loves you very much.  He is also not on steroids and won’t be moving at steroid-speed.  Be patient and kind.

6.  Your toddler is not trying to drive you crazy on purpose.  Be loving.

7.  If you are feeling weepy or emotional, go watch a sad movie or listen to moving music.  If you try to keep it in, it WILL come out in some publicly embarrassing way.  Same goes for angry feelings – can you say ‘roid rage?

8.  The Starbucks girl is NOT YOUR ENEMY.  Same goes for any other service-industry workers.  You are nice to them when you feel normal.

9.  Don’t overdo, overextend, or overcommit.  Again, you are not invincible.  Feeling better does not mean that you are suddenly cured.  I know it feels great to have energy, but trust me, you will pay for it later.

10.  Try to stick to a good, relaxing bedtime routine.  Prednisone brings insomnia – give yourself the best possible chance of getting decent sleep.

11.  Once you drop below 15 mg, there WILL be a crash.  This happens EVERY TIME.  Be ready for it – plan for extra rest.

12.  Try to avoid making any major life decision, having conversations with people who usually upset or irritate you, and sharing too much information with people who don’t need to know it.  These are especially vulnerable areas for you right now.

13.  If you can’t follow some of these guidelines, please cut yourself some slack.  Prednisone is a powerful drug that is known to affect behavior, and you are going to be on a high dose.  Be kind to yourself; tomorrow is another day.

Good luck!

Love,

Me

To Sleep, Perchance To Dream

Monday, January 11th, 2010

picasso dream

Last week I looked in the mirror, and saw an old woman.

It was truly startling, since I am not, in actuality, an old woman.  I studied my reflection and tried to figure out what was making me look so old.  My face is much rounder and heavier than it was in the days B.P. (Before Prednisone), but that’s been true for quite awhile.  My body is heavier too, but there are plenty of heavy women out there who don’t look old, and anyway, I’ve been losing weight.

Then it dawned on me.  I looked TIRED.

Beyond tired, really.  Exhausted.  There were heavy bags under my eyes, my skin looked dry and lined, and most importantly, there was no energy in my face.  I looked at myself and realized that I AM tired.  I think I’ve been trying to pretend for awhile that I’m not, but my looks tell the truth.  There are other clues, too.  My caffeine intake has been gradually creeping up.  I had come close to giving it up completely, and didn’t even notice this reversal until my husband pointed it out.  Of course, I snapped at him – another clue. 

I read somewhere that people with RA need more sleep than other people.  I also think I remember reading something about disturbances in the sleep patterns of people with autoimmune diseases, something that explains why we can still wake up exhausted after what seems like ample sleep.  I would love to find these things and link you to them, but, well, I’m just too tired.

Fatigue is a ridiculous term for what we experience.  It sounds so mild, so ordinary.  It doesn’t describe the bone deep exhaustion that sometimes makes me unable to lift a fork to my mouth, or makes me forget things like my own address.  It’s also a symptom that isn’t discussed much by doctors.  It’s slippery, less treatable, something that isn’t always reflected in blood tests, something that doesn’t always go along with visible joint problems.  There are also some articles about this, but again, too tired…

It’s also probably my number-one symptom, the one that recurs more often than the others.  Sometimes I wouldn’t even know I had RA if not for the fatigue.  Sometimes I’m going along, doing just fine, and it comes out of nowhere and blindsides me, destroying my plans for the day.  And I don’t really know what to do about it.

Some people say (and I’ve generally believed) that symptoms like exhaustion are messages from the body, and we should listen to them – in this case, get more sleep.  But how do you interpret the messages when they’re coming from a system gone haywire?  Doctors used to treat RA with bedrest, and the patients generally ended up completely disabled.  Now they tell us that we should stay in motion, try to exercise consistently even when the body wants to do nothing.  How do we do something so counterintuitive?

I do think that I need more sleep.  I think, in this particular case, that my body is calling me on my recent attempts to behave as if I don’t have RA and run around doing all sorts of “normal” things.  I’ve been in a flare for the past few days, and seem to be getting worse.  The exhaustion preceded the flare – a warning, maybe?

As you know if you read this blog regularly, I’ve been in an angry phase lately.  When I’m tired, my anger descends into petty irritability.  Instead of using it to spur change, or to move through the phases of grief, I start doing things like being snide with the girl behind the Starbucks counter.  Not like me, and not productive.  Didn’t make me feel any better, either – worse, in fact.

I’ve been thinking for awhile about my sleep habits.  To be honest, they’re not great.  A lot of this has to do with the fact that my husband and I are both night owls, with years of late-night habits behind us.  He likes to work late at night, and I like to read.  “Liking” to read is a huge understatement – I read the way other people eat.  When I get into bed with a book, I can’t stop after one chapter – I have to read until some important plot point is resolved, or sometimes even until the end of the book.  I also don’t like to go to sleep until my husband is in bed, and he has just as much trouble with self-discipline as I do. 

However, we are now parents of a toddler.  Like most toddlers, he likes to get up early.  This doesn’t mess me up as much as it should, since my husband is the one who gets up with him and takes care of his morning routine.  He does this out of consideration for my RA, since mornings are usually a bad time for me.  I don’t know why the lack of sleep doesn’t affect him more, but somehow it doesn’t.  It’s killing me, though.

So, like it or not, I think I have to fix this.  I need to start going to bed earlier.  I need to stop reading so much at night, or read things that are much less interesting.  I like the idea of creating a bedtime ritual – maybe candles, music or a relaxation CD, moisturizer for my skin.  I need to do this whether or not my husband is ready to join me.  I need to accept that I simply need more sleep now, and do as much as I can to make it restorative.  If I can’t do it for my health, maybe I can do it for my vanity!

There will probably be times when it doesn’t matter whether I do this or not – the RA will bring on exhaustion anyway.  There will also be times when the RA brings its good friend Insomnia.  But I think if I did this as regularly as possible, it might help.  Anyway, it can’t hurt.

And then I can stop being bitchy to Starbucks workers.  :-)

Rebellion

Tuesday, December 29th, 2009

jamesdean

 Buckle your seatbelts… this one will be part pity party, part confessional, part angry rant!

A few weeks ago, I set out with the intention of circling my wagons and writing a series of posts about the many things I do (or don’t do but would like to) to manage life with RA.  So I wrote a post about my organizational tools, and another post about exercise.  But then a funny thing happened.  Somehow, writing about these things (especially the organizational tools) made me depressed.  Maybe seeing it in print made me realize how big a part of my life this RA thing is, and how much I actually resent having to do all this stuff.  (Guess I’m still camping on the banks of that river in Egypt after all – when do I finally get out of that stage?)  And the sad thing is, these two posts were only the tip of the iceberg of the many, many things I need to do to stay well.

So I didn’t just fall off the wagon – I jumped off the wagon, then tipped it over and kicked it, hard.

This is a bit of an exaggeration, since I haven’t abandoned all of my healthy habits.  For example, I didn’t stop taking my pills – but I did get a little careless with the times at which I took them and with the steps I usually take to protect my stomach.  And I went faithfully to my Remicade infusion last week – a really negative experience I’ll write about another time, since I think it set off this whole rebellious phase I’m in.  I’ve been keeping my promise to exercise more, and I’ve also been going to my physical therapy appointments.

But all sorts of other things, big and little, have fallen by the wayside.  I’ve been eating really badly.  I haven’t been keeping my health journal.  I’ve stopped using my neti pot – this was something I started doing to give myself a little extra protection from colds, flu, and allergens, and it really did seem to do the trick.  I’ve stopped putting Refresh PM gel in my eyes at night, which I am supposed to be doing for my Sjögren’s Syndrome.  I’ve stopped eating yogurt to protect my stomach from my meds and have abandoned my fiber supplements.  On my last methotrexate day, I neglected to drink extra water before, during, and after taking the pills, and was completely flattened by nausea, headache, and all sorts of ickiness; ruined the whole day.  And I know better by now.  There are other things too, but this gives you a general picture.

Yesterday was my wedding anniversary, and my husband and I had planned a one-night getaway (without our son) to a resort hotel and casino.  I wore a sexy skirt that was a bit too tight, and knee-high boots that used to be perfectly comfortable before RA.  Boy, did I get to see how things have changed.  I barely made it through dinner before we had to go back to the room so I could change – and what a relief it was to throw on jeans and my Dansko clogs!  But it also upset me a lot.  I remember the days when I could tolerate a slightly-uncomfortable-but-cute outfit.  After that, we went down to the casino and played slot machines and other games, went back to the restaurant for cheesecake, and generally had fun before collapsing in exhaustion around 3 AM.

Things came to a head this morning.  I woke up feeling like a bus had hit me.  Okay, we did stay up until 3 AM – but we also slept until 11!  Hardly a serious sleep deficit.  And the other sad thing was that I didn’t have a drop of alcohol all night.  We also stayed pretty sedentary for most of the night – didn’t go dancing, didn’t walk far, didn’t do anything more strenuous than pushing buttons on slot machines.  So this horrible, hungover feeling didn’t feel… earned. 

The worst, though, came at breakfast.  We went down to the restaurant around noon.  I usually take my pills at 10 AM, and I was really feeling it.  So we ordered our food, and then I decided – stupidly – that since the food would be coming in just a few minutes, I could go ahead and take my pills.  (This is a lesson I thought I had learned early on – I absolutely have to eat before taking the pills.  I guess maybe the lesson needed repeating.)  Well, the food came pretty quickly, but the pills beat it to my stomach, and I started feeling incredibly nauseated, dizzy, and generally awful.  I had ordered French toast, which looked wonderful, but I could barely get the fork to my mouth.  I forced myself to eat some of it and got a glass of milk into my stomach, knowing that it would help, but had a truly miserable half hour before it worked.  And now it’s night, and I’m STILL not feeling well.

Now, this is where the angry rant comes in.  IT ISN’T FAIR.  My “wild night out” was incredibly tame to have caused such suffering.  My husband had the same night I did and feels perfectly fine.  Friends of mine can stay out all night drinking, get hardly any sleep, and yes, they feel crappy the next day - but then it’s gone.  If past experiences are any indication, I will be paying for this for days. 

I just want some NORMAL LIFE.  I want to be able to overindulge at Christmas.  I don’t want to have to do a million little stupid things every day just to keep this body working.  I want to be able to have the occasional night out without so much suffering.  I want to be able to drink alcohol.  I want to tire myself out running around shopping, going to parties, doing all those fun holiday things and just have it be NORMAL TIRED, not bone-crushing pain.  I actually did very little running around this year, and still paid for every minute of it.

I really thought I had made peace with my trade-offs.  I knew that because of the prednisone I am taking, going off my diet for even a short time would have much bigger consequences than it normally would for me.  I had decided that I was okay with gaining extra pounds, and was willing to work hard to take them off when the holidays were over.  I knew that every event I chose to attend meant at least a day of recovery.  But somewhere along the line, I stopped being okay with these things.  I am NOT okay.  I am ANGRY.

 I think this happens to most people with RA once in awhile.  We just get angry, and tired of the whole thing, and start pushing at the boundaries to see where they are.  Some people go farther than I did and just stop taking their meds.  (I’m not talking here about people who choose not to take meds because they want to treat their RA naturally – that’s a whole different thing, and a choice I respect.)  Some people do things like continuing to drink alcohol regularly even though they are on methotrexate or have liver conditions.  My forms of rebellion are smaller than these, and this is why it upsets me so much that they have had such a huge effect.  I NEED all of these little maintenance things, and it really pisses me off.

Anger – another one of the stages of grief.  This is not the first time I have visited this stage, and it probably won’t be the last.  I am tempted to censor this blog entry.  It’s not positive, it’s not proactive, and it doesn’t put a happy face on RA, or make me look particularly strong in my coping.  Anger isn’t pretty or easy.  It is where I am right now, though.  And I did promise that next time I had a pity party, I would invite you!

So here I am, good and angry.  Here I am, paying for every moment of fun I’ve had over the holidays, tallying it up and realizing that it’s such a pitifully small amount of fun for so much angst.  RA SUCKS.  It just does.

*Whew* 

I am still trying to decide what to do about my wagon train.  It has become clear to me that I have to resume my healthy habits.  They were doing more for me than I thought they were.  Maybe I was just hoping they weren’t necessary.  I don’t know if writing about them will just set me off again, or if it will be good for me.  Maybe both?  Maybe this angry phase is necessary to move out of the denial I keep thinking I’m not in.  (Denying my denial?)  Maybe I need to stay with it, move through it.  Maybe it can unblock me, get me writing music again, get me feeling things I haven’t been letting myself feel.  I also know that when I’m in a better place emotionally, I realize that I’m lucky that there are things I can do that actually make some difference in how I feel.  So maybe I will resume writing about the wagon train.

Just not tonight.

Wagon Train Part 2: Let’s Get Physical

Tuesday, December 15th, 2009

In an ironic twist, I have fallen off the wagon-circling wagon.  There are reasons for this, which I may get into in another post.  But for now, I’d like to jump back on and talk a little about my next set of wagons – physical activity.

Exercise is a seriously tricky proposition for a lot of people with RA.  On the one hand, we know that it’s a really important part of maintaining joint health – sometimes it very literally is “move it or lose it.”  On the other hand, when the joints are in flare or already damaged, things can get dangerous.  Another annoying thing about RA is its changeability – the line between just enough activity and too much is razor-thin and seems to move around all the time,  making it hard to stay consistent.  At least it sure works that way for me, and for a lot of other RA folks I know.  So I have to admit that after going SPLAT a few too many times from overdoing, I have erred on the side of doing… well, nothing. 

(Sheepish grin)

I was going to write a somewhat lengthy post that covered all of these different thoughts I’ve had about exercise over the years, but I’m really tired today and so I will get right to the point, which is my plan to change this.  I’m realizing that as time goes by, I’m getting weaker and have less and less energy, and that I’m beginning to have new muscle problems in addition to my usual joint problems.  While I do realize that my illness has a lot to do with this, I want to be proactive about the parts I might be able to influence.  I also want to model something better for my boy than a sedentary lifestyle.  So here are the wagons I plan to start circling:

Wagon #1: Water exercise

Esther WIlliams

(Okay, so I may never be Esther Williams, but I think the picture is cute!)

A long time ago, my rheumatologist said that swimming would be good for my joints.  Problem – my “swimming” is really more like “trying-not-to-drown.”  So then he suggested low-impact water exercise – for example, the Arthritis Foundation Aquatics Program (AFAP), which offers gentle range-of-motion exercises for people with all different forms of arthritis.  I learned that it was offered at several different local YMCA’s, as well as a few other places.  Around the same time, my husband and I thought that it would be a good idea for our son to take baby swimming lessons.  One of our friends had taken her son to the Y, so we checked it out.  And then, in one of those beautiful events of synchronicity that makes you think things are meant to be, we saw it:

AFAP class and Infant Swim, Saturday mornings, same time, same pool.

So off we went on Saturday mornings for a little family exercise.  At first I felt a bit ridiculous, since I was by far the youngest person in my AFAP class.  It was a little awkward explaining to people why I was there, since most of them were osteoarthritis patients.  But it didn’t take long to get comfortable, and I really enjoyed the sensation of being in the water, which is kept at a soothing 90 degrees.  And it was so sweet to look across the pool and see my baby splashing away in my husband’s arms, loving his swimming class.  He was a natural water baby right from the start.  Sometimes he would catch sight of me, and I could see him laughing and saying, “Mama!”  The little old ladies in the class loved seeing him, too.  And I liked knowing that his father and I were being good models for him.

Unfortunately, I had to stop going to class for a loooooooooooooong time because of problems with non-healing wounds and repeated infections – a really unpleasant story I won’t share here right now.  (Fun times, let me tell you - aren’t immunosuppressant meds great?)  Then we just got busy and involved with other things.  But two weeks ago, we decided to start going back.  This time we joined the Y as a family (we were guests before) as part of a bigger commitment to exercise.  The AFAP classes are free to Y members, and the Y also offers free childcare to members while they are working out, so I would like to start going more than once a week.  (That’s if my son, now a toddler, will cooperate with the childcare thing – something we are working on.)  I’m also encouraging my husband to start swimming during the week - he likes it and hasn’t done it in years.  And we’ll keep up our family Saturdays, which are good for all of us. 

Well, I was going to write more – there are at least three more wagons in this particular part of the circle – but to tell the truth, I’m in a lot of pain today, and I’d still like to get something posted.  So I’ll sign off here, and tell you about the others when I’m able.