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.
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