Posts Tagged ‘Anger’

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.

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.

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.

Explaining RA

Wednesday, September 2nd, 2009

To be honest, I don’t explain my RA very often.  I’m selective about the people I choose to tell, for reasons both good and bad.

The first reason, a very practical one, is the fact that I am still a working musician.  This is a word-of-mouth business, and one that is very skittish about things like illness and injury.  If word starts getting around that I have a disabling chronic illness, people will stop calling me for gigs, regardless of how well-controlled my illness may be.  I have seen this happen before to talented friends who chose to disclose their conditions.  I made the mistake of telling one colleague about my RA, and then watched as all referrals from that quarter dried up.  At this point, while I am still capable of playing, I’d prefer to be the one to decide where my limits are, rather than having them decided for me.

The second reason is to avoid the following: “Oh, I have arthritis too, in my knee, but I just rub Ben-Gay on it and I’m fine.”  “Your RA will go away if you just take this supplement/eat this food/don’t eat this food/stand on your head and count to 50 backwards…”  Or everyone’s favorite: “But you don’t look sick!” I could go on, but I think you get the idea, and have probably heard these things before if you have RA.  Eventually I will get to the mature, healthy point where I can just smile and thank the person and let these things go; at this point, they still annoy and upset me, or, worse, make me want to argue.  This isn’t good for me.

The third reason is really NOT a good one: because talking about it interferes with my well-crafted denial.  Although I’m much less in denial than I used to be, it still pops up now and then in surprising ways, and one of them is my reluctance to tell people, and my hope that I can pass for “normal.”  (At a later point, I plan to write a whole post about my journey with denial.)  I have gotten better about this, and have told more and more of the people in my life.  Writing this blog helps too.

As I start to tell more people, I think about ways to explain the disease that are clear and simple, yet accurate.  Some of the explanations I have read make RA sound like something mild and benign, while others are terrifying.  While both sides are true for some people, most of us live somewhere in the middle, and I’ve been looking for an explanation that is thorough without being either overly scary or dismissive.

Enter Rheumatoid Arthritis Guy, who writes what is probably my favorite RA blog.  (If you haven’t seen it, you really should check it out.)  He created what I think is a great explanation, both simple and thorough – the 60-Second Guide to RA.  From now on, I think I will send my friends there when I want them to understand.

In the meantime, the guide has helped me to focus my “30-second elevator speech” – the brief explanation that gets the main points of RA across before people’s eyes glaze over.  I’ve never actually delivered this speech, but as I become more open about my condition, I’m sure I will.  The way I choose to share (or not share) the information is a reflection of the way I feel about the disease.  I know where I would like to be with it, although I’m definitely not there yet – my eventual goal is to be able to talk about my RA in a simple, calm way, as a fact of my life.   Not the central fact, which is how it sometimes seems, but simply a fact.  Not minimizing it, which does a disservice not only to me but to others with chronic illnesses, but also not turning it into a giant melodramatic tragedy.

Maybe I will get there someday…