Monday, October 25, 2010


A couple of weeks back I had an appointment with my Rheumy. It had been about a year and a half since I'd had an appointment with him (I'd just had phone consultations and appointments with my nurse in that time) and I had this idea that at the appointment he'd be able to give me some magic fix.

Think again.

Basically he said there are very few medical options left for me. My only options were to go on strong painkillers or to try some psychological approaches.

I've said pretty much right off the bat, with my diagnosis, that I didn't want painkillers. I'm not opposed to taking the occasional panadol, but even then I only want to take them when I absolutely have to. In the past my nurse has told me I should be taking it every four hours but that's just not something I want to do. I don't want opiates messing with my head, and I don't want to have to rely on pills to be able to function.

So, we discussed the psychological approaches. My Rheumy was careful to explain that he was not suggesting my pain was in my head, or that I could be "talked" out of feeling pain. This was more about finding ways to live with the pain and achieve my goals despite it. I was a little put off by the fact that the group therapy he was recommending to me was called "Dare to Change." This, to me, implies that they think I'm reluctant to change or that I'm resistant to the idea. Actually, I also think it implies that I need to change my attitude, but personally I think I have a pretty good attitude.

Not long after I was diagnosed I read a couple of articles about chronic pain patients. One said that although things will be more difficult to do when you have chronic pain, you shouldn't stop trying to do them. Yes, you could sit around saying 'well, it's too hard. I'm in too much pain. People shouldn't expect too much of me,' and a lot of that would be true. But how would that feel? Wouldn't it feel so much better to figure out a new way to go about achieving your dreams? Achievements feel so much better than excuses.

At first, I didn't understand what they meant by 'finding a new way.' It sounded kind of new age-y. Then I thought about it. I want to be a writer, but what happens in the months when I my joints get so bad I can't type? Instead of not writing at all (which a times, I admit, I do) I break out the voice software, or the pen, or the friend to dictate to and keep going. That is my new way to achieve my dreams.

That doesn't mean I'm going to go off and work a forty hour week. There is just no way I could do that without ending up in hospital, so it's not just about finding a new way to achieve your goals - it's about working out how realisitc they are. All my life I wanted to be an actor/filmmaker. After my diagnosis, it became harder and harder to work towards this goal. I ended up sitting down, and working out what it was about acting and filmmaking that I liked. I realised it was telling stories that I liked, and writing seemed like a much better fit for me.

The other article talked about how, in general, chronic pain patients have unreasonable expectations that their pain will get better (that's kind of complicated wording, but I wasn't sure how to phrase it. Hopefully you can figure out what I mean.) This could have been really depressing, and for a while it was. I had, up until that point, thought I just had to find the right medication and all my pain would go away. I hadn't realised that even on the best medications, I might never be completely pain-free. Weirdly enough, reading that article was a wake up call for me. I had, up until then, been thinking, 'when the pain goes away, then I'll loose some weight. When the pain goes away, then I'll find a job. When the pain goes away, then I'll write that novel.' That thought pattern had to stop. I had to work out how I was going to live a fulfilling and happy life, even if the pain had to live it with me.

Sometimes, positivity is for other people's benefit. I don't think it would be much fun to be friends with me if I was constantly complaining about how awful I feel, or just generally being miserable. On the other hand, keeping a positive attitude does help me too. The more I focus on the fact that I'm in pain, the more I feel the pain, so being able to laugh and joke about stuff is a good distraction. It also helps that I find life incredibly funny, and therefore find the more ridiculous aspects of my ill health pretty funny too. At times, I think it confuses people when I laugh about the fact that I fell over in my driveway and couldn't get up, or passed out in the middle of the supermarket, but you know what? It really does come down to laugh or cry, and personally I choose to laugh (at least around other people anyway.)

:-) Little Miss Autoimmune

Tuesday, October 19, 2010

There's only so long you can be a bitch...

When I was first diagnosed with arthritis I was a bitch. Hmm... that kind of sounds like I was a bitch and then I got diagnosed and I wasn't anymore. What I mean is, in the first few weeks after I was diagnosed, I was so depressed and angry, I was a bitch to pretty much everyone I came in contact with.

To put this in prespective, I was diagnosed on New Years Eve. I'd planned to go to a New Years party that night. When we got out of the doctor's office that day my Mum told me alcohol was probably not going to be very good for me, but that to make myself feel better I should go out and get drunk (to this day I'm not sure whether she was joking.) I'm not really a big drinker, so this was pretty unusual advice, but I took it and spent the New Years countdown drunk and crying in my friend's stairwell.

But. There is only so long you can be a bitch.

A little while back my supervisor at work was having problems with her knee. She said being in pain was making her grumpy and she didn't understand how, being in pain all the time, I wasn't a bitch all the time. The thing is, there's only so long people will forgive you for being a bitch. After that the being-in-pain excuse wears thin and you'll find you're not only in pain, but you also have no friends.

Of course, now I think I've taken it to the other extreme. I worry so much about being a burden on other people, being in other people's way or complaining too much, that I constantly apologise. Often I apologise when things aren't actually my fault, like if someone isn't looking and walks into me. I feel because I walk with a crutch surely it must be my fault somehow. The other day my friend pointed out to me that I often apologise when things aren't even a problem, like I sometimes apologise to people for standing next to them - I don't know why, I think it's a sickness.

My new solution to feeling I complain too much is to complain more but in a more obvious way. Instead of trying to hide the fact that I'm not happy I'm just going to yell out "I'M IN PAIN" and then just carry on as if I haven't said anything. My friend has also offered to complain for me at times when I get tired of complaining. That way is more fun than complaining about complaining, although saying "I'M TIRED OF COMPLAINING! MY VOICE IS SO WHINY, I CAN'T STAND IT!" would be funny too.

Little Miss Autoimmune

Tuesday, October 12, 2010


I had one of those ‘I am useless days today.’ Normally I’m pretty happy with what I manage to accomplish and try to take a strengths based approach to my life (looking at my skills and focusing on what I have achieved, rather than focusing on what I can’t.)

Every so often, though I have a useless day.

They always start out the same. I have one simple task to do, usually something that is going to be a little difficult for my joints, but is still totally doable. In this case, I had to make up the spare bed for my friend who’s coming to stay.

So, I make the bed. It’s a little bit of a struggle, but I do it and I’m so excited that I have accomplished something “difficult” that I’m like ‘yeah! I can totally do anything! I’m going to now change my bed and clean the bathroom and vacuum all the floors.’

I know what you’re thinking – that’s probably like just a normal weekend for most people, but when even one of these tasks causes you pain, this is a marathon.

I got as far as taking all the bedding off my bed - at which point, my arms hurt too much to pick the bedding up again. Basically at that point my solution to the problem was to just stand there in the middle of the pile of bedding feeling sorry of myself. Fortunately, this turned out to be a solution in itself. After a while, my Dad came to check on me, saw the sorry state I was in and decided to make my bed for me.

Now, the sensible thing to do at this point would have been to give up on the idea of vacuuming and cleaning the bathroom, but no, I continued on with my plan. The bathroom turned out to not really need cleaning, as it had been done a couple of days before, it was more just a case of tidying up, so I moved on to vacuuming.

The sensible thing to do would have been to pick out the rubbish on my floor before trying to vacuum, but I was pretty tired and felt like cutting corners.

I managed to vacuum up some receipts, a plastic bag and a pair of stockings I’d left on the floor. All of these were easy to retrieve, as they got stuck, but while “retrieving” them, I managed to vacuum up an ornament off my shelf. I was pretty upset about this, as it was something I’d bought at the Katherine Mansfield house when I first visited it, so I was pretty keen to get it back. Unfortunately, I didn’t know how to open the vacuum. My solution was to just press every button on it, which achieved NOTHING. At this point I decided to give and put the vacuum away. Of course at this moment, it decides to not only open, but the top completely came off. More worryingly, a small piece fell out and none of it would go back together.

I could totally NOT do anything. I decided to stick to my strengths and spent the rest of the evening watching TV and eating chocolate while my day fixed the vacuum.

Little Miss Autoimmune