Rebellion

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.

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8 Comments

  1. WarmSocks says:

    What a powerful post.
    I can relate. It’s like being tied on a roller coaster. You didn’t ask for the ride, but you’re not allowed to get off.
    Happy anniversary!

  2. Superb*tch says:

    Remicade Dream -

    As we all know, I like angry. LOL!!!

    No, but really – great honest post. If it is any consolation, I am almost 7 years into this disease, and I’m still sailing down the river of denial some days. I think I did come to a lot of realizations this year, but they came at a price – lots of anger and depression, lots of lost dreams. Most of my family and friends seemed relieved that I had finally come around to accepting my limitations, but I’ll tell ya- the acceptance basically just depressed the hell out of my hubby and me.

    And I truly think that I’ve gotten SICKER very quickly since “accepting” the RA. I think the denial and the pushing actually kept a lot of my progression at bay, if that makes sense. Once I began to “accept” my condition, I stopped doing all the things that a “healthy” person might do, and so my symptoms just seemed to have compounded.

    I think I am at a another step of the grieving process, not exactly sure which one, but it is after the denial and after the acceptance and accompanying depression – it is a stage where I’m saying, “OK, I cannot achieve my old dreams, so what are my new ones?”

    It feels like a healthy place to be, but I won’t lie – there are a lot of days I slip backwards and I’m just pissed as hell that I can’t have my old dreams back!
    b
    You are very very right when you say that we all have angry days. I think if we are honest with ourselves, we will say we have many of them. And if we are really honest with ourselves, we might say that our personalities in general are just a bit angrier and more bitter than they were before.

    That is, after all, what my whole blog is about… a place I can put all the ugly stuff so it won’t spill over so much into my real life. It helps. Truly! I hope this post helps you in the same way!

    Sorry I wrote so much. I really think you had a lot of valuable stuff to say here though. You obviously got me thinking!!!

    - RA SB

  3. Britta says:

    It is okay to not be okay!!!! I feel like my blog has turned into a bitch/vent blog, so I am glad to see other people are like that once in awhile!

    Remember…it will get good again, even if it doesn’t last long, it is worth it.

  4. You are angry. You are angry because RA sucks. Being angry isn’t inherently a bad thing, it is just that, being angry. I’ve also had normal, reasonable days (that I was looking forward to) spoiled by feeling crap and it brings it all home, how far from normal things are. I also think things will get better for you but I can understand if you don’t feel that right now. Best wishes for the new year whatever wagon you are on :-)

  5. Helen says:

    You’re right. RA completely and utterly sucks, and you should be angry. It wouldn’t make any sense if you weren’t. I’m angry FOR you.

    Nothing more wise to say than that, I’m afraid. But if it helps, there are lots of us who get it, who feel it and have felt it many times before.

  6. Annette says:

    I have a very long list of things I must do to keep on going. Some are so ingrained I hardly remember that they are caused by the RA. They begin to feel like lifestyle choices, but they’re not.

    If I am lying in bed I get nervous if other feet are close to mine because a bump hurts – That does not encourage intimacy.

    My small rebellion was cutting down to nothing but Rx meds because I was sick of counting pills, but after 2 weeks I could feel it and not in a good way. I hope you can get better meds. That’s been the key for me – still working after 28 years, but deteriorating bit by bit

    Annette

  7. Megan says:

    I had a pity party in December as well. And it felt good to post about it. I think there is some expectation in the world that everyone is always fine – and that just isn’t true, and another expectation that if you aren’t fine, you’ll just keep it to yourself. Good for you for letting it out. Hope your January is going a bit better.

  8. Muffy says:

    thank you for not locking or censoring yourself in this post. I have had PsA for 2 years. I was an AVID rock climber and hiker, backbacker and out doors person. God i miss that. I have not found acceptance very often. I may get there someday. I hope so. but mostly i live on that river in Egypt… and then i have a flare up for no reason that i can figure out, and i get angry and depressed and freaked out because i used to work 10 hour days and work out 2 times a day and go on trips on the weekends to climb and hike… and I CAN”T. its not that i don’t want to, i really can’t. I often find myself on the internet looking for some kind of magic bullet. a cure… something. Today i found this post and it helped. maybe i am not better, but i feel a little better.

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