On August 15 of this year, I had my birthday. I spent it mostly ill (in bed), as I did most of the other days at HAR2009. Not what I had in mind. I've spent most of the days since also mostly ill, either in bed or on the sofa.
It started with tendinitis in my neck, on the right side. Then it went to the left side. Then I had it in both sides. Then my shoulders, my elbows, my thumbs. My knees and feet and recently, my right hip. Mostly not all at the same time, it switches. Just as I think it has gone, it starts somewhere else. I've had tendinitis before, and know that the best way to get rid of it means a lot of rest and also a good dose of anti-inflammatories. I've taken a lot of rest. But not so many anti-inflammatories. See, they have this nasty habit of irritating your stomach and intestines, and as I don't have the stomach anymore, my intestines get the full blow. This makes it harder to eat. So for the past 2.5 weeks I've juggled with the tendinitis and the rest and the pills and the eating. It slowly seems to improve, very slowly.
One of the contributing factors of my recurring tendinitis, my RA, will hopefully improve somewhat soon. I have started methotrexate injections (no more pills because they, you guessed it, cause gastro-intestinal problems) which should prove more effective and help with my pains. Other factors however, don't have such an easy solution.
Stress plays a major role and unfortunately, I've had a lot of it. I've had appointments with my podiatrist for insoles, my RA-nurse for learning how to inject methotrexate and had to go to the pharmacy to get all the stuff. Also had to go buy groceries (a girl's gotta eat), make at least part of my flat 'injection-ready' (the methotrexate requires a bit more care than the B12 injections) and eat. And eating hasn't really gone well lately, so I had to spend extra time and extra care with the eating. Buying groceries doesn't help with the tendinitis if I do it in bulk, so I had to do it in bits, which adds more to the stress.
Currently, I have a full-time job taking care of myself and doing all the necessary health related things, and not much, if any, energy left for other things, like say, socializing or 'fun stuff'. I have tried hard to keep up with what others expected from me, and have found that despite their attempts to understand and to deal with what I go through, they really can't if I keep on trying to keep up with them. I spend a lot of energy doing (or trying to do) what I think I should do, what I think others expect from me (or what they have expressed) and what I think I can do. But what I think I can do doesn't equal what I can (and stay sane and relatively healthy). What I think I can do already lies above what I really can do. I spend lots of time reacting to things that happen, trying to make the best of them, trying to keep up, trying to appear normal.
No more, I say! I will not spend my precious little amount of energy feeling lived and not actually living. No more reacting, time to act on my own. No more trying to keep up, if I can't, I can't, suck it up! Don't try and 'encourage' me, please. No more pushing myself to eat things I know that don't work (hello, bread), because they make me feel like crap later on. No more not having control over my life, my self, my sanity. I will not do it anymore.
I've grabbed my copy of Getting Things Done by David Allen and I will re-read it to see if I can tweak my system to help me out more with my health-related stuff and possibly the eating. Eating takes up about 90% of my energy (no, not kidding, totally serious unfortunately) and I need to get a better grip on it. I need to think the other things through, before I go out and do them. Yes, this means more planning and less spontaneity, a small price to pay for actually getting more healthy and getting a bit more sane. It may seem (too?) neurotic to most, for me it comes down to a way to survive and actually start living my life again. I'd very much enjoy that.
I wish I could also say 'No more pain!', however, I don't have that much control over my RA. I will do what I can to ease that pain, and wait patiently for that cure, but not holding my breath in the meantime ;)